Re: The CURE ... Neurofeedback

[Guest guest]

Misophonia … a misnomer

I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder."

Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition.

First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety."

The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror, and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB. And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made … improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in "successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

Thank you so much for your tenacity in bringing this to our attention. I do not

read all the posts so I was unaware of your sucess with neurofeedback until I

read this new post. I just contacted a psychologist in Long Island where I live

who does NFB. The person who answered his phone explained to me that NFB works

on the brains electricity while medications work on the chemistry. I always

thought of my misophonia as misfiring of the brains electrical impulses not a

chemical imbalance, so it is no wonder that medications never worked for any of

us. I am waiting for the Dr. to call me back to see if he feels he can help me.

I will keep you all posted.

Thanks again for sharing your success with us!

> >

> >

> >

> >

> > The CURE … Neurofeedback

> >

> > Eight months ago, on May 1, 2011, I posted here as to how

> Neurofeedback

> > was proving to be the " cure " for me in regards to this dreaded

> > condition, referred to as Misophonia. I wrote of some extraordinary

> > " successes " I was having at the time, and I wrote, " I do not

> > know if this is the " cure " for all others on this site. I do

> > know what it has done for me so far … it's given me the first

> > real hope in defeating this after 45 years of anguish. " You can

> > read my original post if you go to where it says message # at the top

> of

> > this page, and put in 20318 (do not use a comma in the number). The

> > positive progress I had recorded up to that time was after 24 sessions

> > with a Neurofeedback (NFB) practitioner, and I told of our plans to

> > start our 15 year-old son with NFB who also has Misophonia. To my

> > disbelief, there was response from just two people on this site. That

> > is why I decided to post under the heading " The Cure " in hopes

> > of gaining everyone's attention.

> >

> > Neurofeedback has worked for both my son and me. I will stress that I

> > suffered with this Misophonia condition for 45 years and to a degree

> > just as strong as relayed by any of the messages posted on this site.

> > Both my son and I have also dealt with various symptoms of OCD, which

> > both my NFB Doctor and I feel that this condition is an element of. I

> > have read past arguments of those that don't consider this OCD as

> > they don't exhibit the " recognized " or usual symptoms, or

> > have an official diagnosis of OCD thru the " main stream "

> > physicians. Since I have not heard of others being treated

> successfully

> > thru other means, I believe my NFB Doctor and I have earned the

> > credibility in referring to this condition as an element of OCD.

> >

> > If there were a rating system developed, both my wife and I would put

> me

> > at a strong 90 to 95% improvement from where I was several months ago.

> > I would be at the 100% level as far as the total absence of the anger

> > that is instantaneously present when Misophonia sufferers encounter a

> > " trigger. " With some of the " successes " I am enjoying

> > my wife tells me that, " You are completely cured. " But I

> > don't accept that quite yet as there are a couple elements that I

> > still notice, although ever so slightly. The terrific part of NFB is

> > that although there may be an " ebb & flow " of reactions during

> > treatment as improvements are made … improvements realized are

> > permanent. Even more promising are studies that have shown that even

> > when NFB sessions are stopped, subtle improvements are still

> recognized

> > months later. Our son we would put at an 80% improvement level.

> > Possibly we could rate him higher yet on that scale but with people

> that

> > age it can be difficult to determine if some actions are unrelated to

> > this condition and rather just the normal teenager hormones to be

> dealt

> > with. He also started with more profound " recognized " and

> > typical OCD symptoms than what I did.

> >

> >

> >

> > In addition, my higher rating of improvement can be attributed to my

> > having a total of 112 NFB sessions so far versus my son's 64

> > sessions. With saying that I want to stress at this point not to let

> > the number of sessions and the related costs deter you. I pointed out

> > in my original post that I paid $4,100 for my initial 40 sessions

> along

> > with a beginning and ending QEEG. At the end of the initial 40

> > sessions, both for myself as well as my son, my wife and I agreed that

> > both of us had achieved a 60-70% improvement for our Misophonia versus

> > our pre-Neurofeedback condition. Imagine how different your life would

> > be, or that of your child, if you/he/she were rid of 60-70% of the

> > triggers and anger … actually more on the anger as most of that

> > leaves completely and is the most pronounced effect first realized.

> > Although our lives would have been so much more enjoyable even if we

> had

> > stopped after the initial 40 sessions, we made the decision to strive

> > for perfection and be cured completely. My son has never complained

> one

> > time with going to the 64 sessions as he continues to realize the

> subtle

> > improvements he continues to make.

> >

> > Our NFB practitioner will be starting with the use of a program called

> > the LORETA in another 3 weeks. The LORETA, which he will incorporate

> in

> > every third session, is like a mini-QEEG, a functional imaging

> technique

> > that looks directly at brain activity in " real time. " The data

> > to date is showing the use of the LORETA enables one to treat at a

> more

> > successful rate … at a quicker pace … and for more conditions!

> > Naturally we are excited about this as we feel that he will be able to

> > identify and treat those last stubborn areas of our brains.

> >

> > Over the last several months I have compiled nearly 80 pages of a

> > journal chronicling the progress we have achieved thru Neurofeedback.

> I

> > am working on condensing this material to a version that I can post at

> a

> > later date so others may identify with situations we have encountered

> > with triggers that have resulted in " successes " with a

> > non-reaction and no anger present. In addition, our Doctor will be

> > putting together a report for the Neurofeedback Journal and

> profession,

> > along with my input from a patient's perspective, regarding

> > NFB's success with treating Misophonia.

> >

> > I am going to add a disclaimer to my post. All brains are different,

> > and some people may not respond favorably to Neurofeedback, there are

> no

> > guarantees. But, we are not the only people with this condition that

> > have experienced success with Neurofeedback. My Doctor recently

> learned

> > of an NFB practitioner in Texas that had posted on a professional

> online

> > forum asking if anyone had experience in treating Misophonia. This

> > practitioner initially started seeing someone for ADD, but then this

> > patient's parents educated him on the Misophonia their child had.

> > Some time had elapsed and he posted a second time telling that he was

> > having success with diminishing the Misophonia triggers.

> >

> > For those of you that contact a Neurofeedback practitioner and proceed

> > with sessions, I will offer this advice … Do not monitor all of

> the

> > posts on this site closely. I say this because of the number of posts

> > where people are venting and telling of new and different triggers

> that

> > outrage them. There have been arguments on this site in the past as to

> > if the venting is helpful. I am not entering into that argument but

> > rather just giving you advice on an observation that my Neurofeedback

> > Doctor, my wife, and I all agree on. We feel there is the possibility

> > of one developing new triggers they have not experienced before when

> > reading of them thru the venting on this site. We base this on the

> fact

> > that neither my wife, nor my Doctor, ever realized the manner in which

> > people chew gum until coming in contact with me. It was simply

> > something they were not conscience of. But now they both notice if

> > people chew their gum or food in an obnoxious manner. It does not

> cause

> > them to get angry, but they do notice it now as readily as a

> Misophonia

> > victim does. For this reason I scan the headlines on this site but do

> > not read any postings that appear to be from someone venting or

> telling

> > of new triggers.

> >

> > I intend to stay anonymous on this site as well as in any subsequent

> > article in the NFB Journal. If it was just me I would have no issue

> > with using my real name. But I will not take the chance of subjecting

> > my son to ridicule from his peers if our identification were known and

> > talked of openly on this site, on a Facebook page, or in the media.

> > Please respect this. We all know that if we told acquaintances we had

> > ADD … they would have compassion for us. If we told others that we

> > had depression, or bipolar … we would be shown compassion. In fact

> > if we say, as my Doctor and I maintain, " I have an element of

> > OCD " … we will be looked upon with compassion. But to tell

> > someone of Misophonia and its triggers & anger … will most often

> > bring us ridicule and mean spirited provoking.

> >

> > We live in Eastern Iowa so those of you that are close in proximity

> may

> > send an email to my Yahoo Mail account and I will respond with the

> name

> > of my Neurofeedback practitioner. For everyone else, please respect

> the

> > fact that my Doctor cannot accept the several calls that could

> inundate

> > him from those looking for referrals. He will not make referrals but

> > would be glad to accept a phone call or an email from NFB

> practitioners

> > in regards to protocol. My Doctor strongly suggests that one go to the

> > website www.bcia.org <http://www.bcia.org/> to find a practitioner in

> > your area and to make sure that they are specifically accredited for

> > " BCN. " Another valuable website is the International Society

> > for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> .

> > At this time the practitioner listing section of this site is down so

> > check back.

> >

>

[Guest guest]

This description very closely describes my son who has both misophonia and officially diagnosed OCD. I can’t say for sure that misophonia is a subset of OCD, but have often times thought that it is. With OCD it’s very difficult to “close the door” on certain thoughts, including what you see or hear. There are other subsets of OCD which do not include traits that most people think of as OCD, such as “body dysmorphic disorder” (body image), so it’s possible misophonia could be similar, especially considering how hard it is to “close the door” on or tune out certain things, one of the main symptons of OCD. In other words, you could have the misophonia subset of OCD without having any other OCD symptoms, similar to how body dysmorphic disorder works. Just an idea, but maybe there’s something to this. One caveat though is that I personally would not recommend the typical OCD therapy of “exposure and response prevention” for misophonia by itself as must of us know this can actually make things worse, however Neurofeedback sure sounds promising! - for both OCD and misophonia. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of clyle53Sent: Sunday, February 19, 2012 2:28 PMTo: Soundsensitivity Subject: Re: The CURE ... Neurofeedback Misophonia … a misnomerI have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as " Misophonia " with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement: " Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder. " Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as " mistakenly diagnosed, " if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition.First of all … I will refer to this condition as " Misophonia " as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related? One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes " talk with my hands " when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or scientific community, or a " Misophonia " sufferer, to explain to me how that can be hearing related. You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, " If you have been willing to believe that " Misophonia " is a mysterious physiological condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized? " OCD has been described as the following: " Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety. " The various triggers that " Misophonia " sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, " a frequent task, or compulsion, to seek relief from the obsession-related anxiety " . So although a " Misophonia " sufferer may not possess or exhibit the typical & recognized symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD. These obsessions come down to the word " focus. " I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them! Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same " Misophonia " type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror, and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various " Misophonia " triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB. And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former " Misophonia " triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related? >> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the " cure " for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> " successes " I was having at the time, and I wrote, " I do not> know if this is the " cure " for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish. " You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading " The Cure " in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the " recognized " or usual symptoms, or> have an official diagnosis of OCD thru the " main stream " > physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> " trigger. " With some of the " successes " I am enjoying> my wife tells me that, " You are completely cured. " But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an " ebb & flow " of reactions during> treatment as improvements are made … improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound " recognized " and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in " real time. " The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in " successes " with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, " I have an element of> OCD " … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> " BCN. " Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

Thanks for the post. I always thought it might be a type of OCD, but then I had doubts because people would say that OCD medications never helped their misophonia, but it helped their OCD triggers. My daughter had NFB before which is why I think she is able to cope so much better than she used to. However, she still definitely has many problems with misophonia, but when I asked her if she wants to start NFB again (since you said you had such success the more you did it and she only went about 20 times), she said no she didn’t want to or need to. She is a teenager and doesn’t want to be different. Plus, I know she is worried about the cost of it and how it’ll affect us financially. But I would do anything for her to find relief and if NFB gets better and better the more you go, I want her to try. Thanks for your posts. I really think NFB is amazing for many problems and it’s exciting that it has helped you and your son so significantly. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of clyle53Sent: Sunday, February 19, 2012 5:28 PMTo: Soundsensitivity Subject: Re: The CURE ... Neurofeedback Misophonia … a misnomerI have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as " Misophonia " with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinicalThan trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement: " Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder. " Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as " mistakenly diagnosed, " if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition.First of all … I will refer to this condition as " Misophonia " as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related? One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes " talk with my hands " when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or scientific community, or a " Misophonia " sufferer, to explain to me how that can be hearing related. You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, " If you have been willing to believe that " Misophonia " is a mysterious physiological condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized? " OCD has been described as the following: " Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety. " The various triggers that " Misophonia " sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, " a frequent task, or compulsion, to seek relief from the obsession-related anxiety " . So although a " Misophonia " sufferer may not possess or exhibit the typical & recognized symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD. These obsessions come down to the word " focus. " I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them! Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same " Misophonia " type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror, and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various " Misophonia " triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB. And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former " Misophonia " triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related? >> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the " cure " for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> " successes " I was having at the time, and I wrote, " I do not> know if this is the " cure " for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish. " You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading " The Cure " in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the " recognized " or usual symptoms, or> have an official diagnosis of OCD thru the " main stream " > physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> " trigger. " With some of the " successes " I am enjoying> my wife tells me that, " You are completely cured. " But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an " ebb & flow " of reactions during> treatment as improvements are made … improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound " recognized " and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in " real time. " The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in " successes " with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, " I have an element of> OCD " … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> " BCN. " Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

I have just booked a consult with a NFB practitioner/neuro and psychotherapist later this week, too. She said that she has experience with tinnitus, but not as the primary cause of treatment. I hope this will be the first step towards treatment for me. Can anyone tell me about how much NFB therapy costs?Thanks - To:

"Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 10:10 AM Subject: Re: Re: The CURE ... Neurofeedback

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity

Sent: Sunday, February 19, 2012 5:28 PM Subject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder." Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition. First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety." The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized

symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror,

and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB.

And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

$90 - $150 for each sessionArticle Source: http://EzineArticles.com/3646396

To: "Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 5:13 PMSubject: Re: Re: The CURE ... Neurofeedback

I have just booked a consult with a NFB practitioner/neuro and psychotherapist later this week, too. She said that she has experience with tinnitus, but not as the primary cause of treatment. I hope this will be the first step towards treatment for me.

Can anyone tell me about how much NFB therapy costs?

Thanks -

To: "Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 10:10 AMSubject: Re: Re: The CURE ... Neurofeedback

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!!

To: Soundsensitivity Sent: Sunday, February 19, 2012 5:28 PMSubject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer

I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder."

Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition.

First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away thru

my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or scientific

community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety."

The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized symptoms of

OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror, and my

son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB. And

as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time was

after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

Neurofeedback sounds so promising. I am going to look into it. Never thought of using it as a cure for this. More and more, I am beginning to see this as a type of OCD. Has anyone else tried Neurofeedback before to treat this?? To: "Soundsensitivity " <Soundsensitivity >

Sent: Monday, February 20, 2012 6:20 PM Subject: Re: Re: The CURE ... Neurofeedback

$90 - $150 for each sessionArticle Source: http://EzineArticles.com/3646396

To: "Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 5:13 PMSubject: Re: Re: The CURE ... Neurofeedback

I have just booked a consult with a NFB practitioner/neuro and psychotherapist later this week, too. She said that she has experience with tinnitus, but not as the primary cause of treatment. I hope this will be the first step towards treatment for me.

Can anyone tell me about how much NFB therapy costs?

Thanks -

To: "Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 10:10 AMSubject: Re: Re: The CURE ... Neurofeedback

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!!

To: Soundsensitivity Sent: Sunday, February 19, 2012 5:28 PMSubject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer

I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder."

Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition.

First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru

my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific

community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety."

The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized symptoms

of

OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror, and

my

son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB. And

as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was

after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

Hi,I too am trying NFB. I have said before in my personal opinion I do not think I have OCD. BUT I don't' think the label matters at all. NFB does not care about labels. Nevertheless my practitioner also doesn't think I have OCD based on those parts of my brain that do or do not "light" up with the LENS mapping. Again, it doesn't really matter one way of the other, NFB will treat brain wiring problems regardless of what we call them. And because every one of our brains our different, our treatment will be different anyway. But I imagine as practitioners begin to share our stories, they will find similarities.Since I decided to give NFB a try, I have researched the heck out of it. I hope you all don't mind me sharing what I've discovered. I think it's important to know that there are splits within NFB community itself. Some providers like some equipment and other's don't. As a bit of background NFB has long been bashed by the pharmaceutical company because it is a threat. So the NFB community has really had to fight against a wave of attempts to tarnish their treatment. Over time, insurance gradually started to cover it given how effective it is (especially with ADD) and then some insurance has yanked coverage due to backlash pressure from the pharmaceutical industry. There's just a ton of politics surrounding it, literally. The NFB industry is lobbying Congress to have it included in insurance, etc. Back to my point about differences of opinions among the NFB providers themselves. My doctor uses LENS and the most cutting edge technology: Zengar. Some of the more old school or traditional NRB providers either are on the fence or don't like it. I personally believe that for some of those who are are against it, it probably has to do with money. Old school technology is slower in results and requires more visits, whereas Zengar often gets results significantly faster, so the practitioner can't bill as much. For others, they just haven't yet been trained, or don't like the idea of it, it does approach NFB in a completely different way. For young people, they can start right off with Zengar and start seeing results. As my practitioner explained to me, because my brain is older it is more set in its ways. So she mapped it with LENS so she could show me the hot spots and where things need to be either calmed down or brought up and then used LENS to treat it for several sessions, as a jack hammer, if you will, breaking up the pieces to be sorted into the right places. To be clear, that's an analogy, NFB doesn't break up your brain. Rather it priming my brain to be in the best state it can be to accept treatment. Next she uses Zengar to really treat the problem areas, and then may switch to the traditional equipment to finish it off, she will decides as we progress. My doctor is at a national Zengar seminar right now and told me she plans to pose lots of questions about Misophonia to the attendees and the creator of Zengar to try to get as many ideas as possible for my treatment and to help start spreading the word for any of us who find practitioners. She said she'd be willing to speak to any of your doctors as well. Anyway, I'm still at the very beginning stages of treatment but am very hopeful. I am so grateful for Clyle for telling us about NFB starting back in May. I have been saving up just to start this and am so happy the day is finally here. As it turned out my insurance will cover NFB as long as the practitioner doesn't say it's NFB but says it's anxiety or whatever. But there's only one person in SD covered and I went to her and I was not happy from the first visit so I found someone I trust much more and is outside my insurance. The first person I found used the older equipment, which is fine, but on the first day she put the electrodes on the front part of my head and gave me treatment. The next day I was hostile and my temper was very short. It was not good. I explained this to my new doctor and she explained to me that the manufacturer of the equipment the first person used clearly instructs practitioners to not start off at the front of the brain as it may trigger the exact reaction I experienced. The reaction even had a given name, that I forgot. So if you go the traditional route, please don't let your doctor put an electrode on your forehead for treatment the first day (mapping is different, it's put all around your head, so it has to be on your forehead). Lesson: you gotta work up to the front. :-)Anyway, just sharing my story and I hope we get to hear more and more positive NFB stories here.Thanks Clyle!!Heidifootnotes:LENS: http://www.ochslabs.com/Zengar: http://www.zengar.com/On Feb 20, 2012, at 9:10 AM, audrey rossow wrote:

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity

Sent: Sunday, February 19, 2012 5:28 PM Subject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder." Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition. First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety." The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized

symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror,

and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB.

And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

LOL i love this guy! This is an amazing post! I've got some videos on Youtube

under the channel name " whatismisophonia " , where i talk about my own struggles

(and my triggers), and i have actually been working on a video compairing OCD to

Misophonia, though im not done yet. This post definately has some useful

testimony to say the least. Personally, ive been struggling with OCD, ADHD,

Dyslexia, and then horrible Misophonia. Though i also admit in comments on a

video of mine that different causes can have similar sympoms, i am intreagued by

the fact that there are several articles out showing that higher levels of

sensory disorder generally occure in children with learning disabilies as

compared to normal children; and of course many people who have ADHD also show

OCD syptoms, such as myself. This post is profound to me at least; ive yet to

read anything else that describes exactly what ive been mulling around in my

brain so well on this subject, what ive been going through, and it even states

was is most probably the best evidence of a useful treatment for myself that i

have yet witnessed. Problem is, i dont have 4k because i have no job, because

my misophonia keeps @$ & #ing me over in life, and there's nothing around were i

live, nor is there decent work, so id have to move(no money for that). The

great circle of life, right? At any rate, I know if i didnt obsess so much over

the noises, they wouldnt bother me; the issue ive always had in describing

Misophonia as OCD, is the fact (from what ive read) that OCD triggers are

fear-based. However, we are talking about " fight or flight " , which roughly

translates to anger or fear, so for what my understanding is worth, yes, it is

at the very least, possible that this is OCD. I may even cite this post on my

video. Also, refering to OCD when explaning to others about your condition i

think is a good idea, because it makes sense to people; though i would still

probably throw into my explanation that it is still being pondered as something

apart, and labeled by many as Misophonia, or selective sound sensitivity

syndrom. One final thought is that, i dont know who is calling this an

" auditory " issue, but it obviously is not. From what ive heard over and over

again, it is a SENSORY perception disorder, which would include all of the

senses, and as ive said, has been found to be fairly common in children with

learning disabilities, for which OCD is also a common occurence.

> >

> >

> >

> >

> > The CURE … Neurofeedback

> >

> > Eight months ago, on May 1, 2011, I posted here as to how

> Neurofeedback

> > was proving to be the " cure " for me in regards to this dreaded

> > condition, referred to as Misophonia. I wrote of some extraordinary

> > " successes " I was having at the time, and I wrote, " I do not

> > know if this is the " cure " for all others on this site. I do

> > know what it has done for me so far … it's given me the first

> > real hope in defeating this after 45 years of anguish. " You can

> > read my original post if you go to where it says message # at the top

> of

> > this page, and put in 20318 (do not use a comma in the number). The

> > positive progress I had recorded up to that time was after 24 sessions

> > with a Neurofeedback (NFB) practitioner, and I told of our plans to

> > start our 15 year-old son with NFB who also has Misophonia. To my

> > disbelief, there was response from just two people on this site. That

> > is why I decided to post under the heading " The Cure " in hopes

> > of gaining everyone's attention.

> >

> > Neurofeedback has worked for both my son and me. I will stress that I

> > suffered with this Misophonia condition for 45 years and to a degree

> > just as strong as relayed by any of the messages posted on this site.

> > Both my son and I have also dealt with various symptoms of OCD, which

> > both my NFB Doctor and I feel that this condition is an element of. I

> > have read past arguments of those that don't consider this OCD as

> > they don't exhibit the " recognized " or usual symptoms, or

> > have an official diagnosis of OCD thru the " main stream "

> > physicians. Since I have not heard of others being treated

> successfully

> > thru other means, I believe my NFB Doctor and I have earned the

> > credibility in referring to this condition as an element of OCD.

> >

> > If there were a rating system developed, both my wife and I would put

> me

> > at a strong 90 to 95% improvement from where I was several months ago.

> > I would be at the 100% level as far as the total absence of the anger

> > that is instantaneously present when Misophonia sufferers encounter a

> > " trigger. " With some of the " successes " I am enjoying

> > my wife tells me that, " You are completely cured. " But I

> > don't accept that quite yet as there are a couple elements that I

> > still notice, although ever so slightly. The terrific part of NFB is

> > that although there may be an " ebb & flow " of reactions during

> > treatment as improvements are made … improvements realized are

> > permanent. Even more promising are studies that have shown that even

> > when NFB sessions are stopped, subtle improvements are still

> recognized

> > months later. Our son we would put at an 80% improvement level.

> > Possibly we could rate him higher yet on that scale but with people

> that

> > age it can be difficult to determine if some actions are unrelated to

> > this condition and rather just the normal teenager hormones to be

> dealt

> > with. He also started with more profound " recognized " and

> > typical OCD symptoms than what I did.

> >

> >

> >

> > In addition, my higher rating of improvement can be attributed to my

> > having a total of 112 NFB sessions so far versus my son's 64

> > sessions. With saying that I want to stress at this point not to let

> > the number of sessions and the related costs deter you. I pointed out

> > in my original post that I paid $4,100 for my initial 40 sessions

> along

> > with a beginning and ending QEEG. At the end of the initial 40

> > sessions, both for myself as well as my son, my wife and I agreed that

> > both of us had achieved a 60-70% improvement for our Misophonia versus

> > our pre-Neurofeedback condition. Imagine how different your life would

> > be, or that of your child, if you/he/she were rid of 60-70% of the

> > triggers and anger … actually more on the anger as most of that

> > leaves completely and is the most pronounced effect first realized.

> > Although our lives would have been so much more enjoyable even if we

> had

> > stopped after the initial 40 sessions, we made the decision to strive

> > for perfection and be cured completely. My son has never complained

> one

> > time with going to the 64 sessions as he continues to realize the

> subtle

> > improvements he continues to make.

> >

> > Our NFB practitioner will be starting with the use of a program called

> > the LORETA in another 3 weeks. The LORETA, which he will incorporate

> in

> > every third session, is like a mini-QEEG, a functional imaging

> technique

> > that looks directly at brain activity in " real time. " The data

> > to date is showing the use of the LORETA enables one to treat at a

> more

> > successful rate … at a quicker pace … and for more conditions!

> > Naturally we are excited about this as we feel that he will be able to

> > identify and treat those last stubborn areas of our brains.

> >

> > Over the last several months I have compiled nearly 80 pages of a

> > journal chronicling the progress we have achieved thru Neurofeedback.

> I

> > am working on condensing this material to a version that I can post at

> a

> > later date so others may identify with situations we have encountered

> > with triggers that have resulted in " successes " with a

> > non-reaction and no anger present. In addition, our Doctor will be

> > putting together a report for the Neurofeedback Journal and

> profession,

> > along with my input from a patient's perspective, regarding

> > NFB's success with treating Misophonia.

> >

> > I am going to add a disclaimer to my post. All brains are different,

> > and some people may not respond favorably to Neurofeedback, there are

> no

> > guarantees. But, we are not the only people with this condition that

> > have experienced success with Neurofeedback. My Doctor recently

> learned

> > of an NFB practitioner in Texas that had posted on a professional

> online

> > forum asking if anyone had experience in treating Misophonia. This

> > practitioner initially started seeing someone for ADD, but then this

> > patient's parents educated him on the Misophonia their child had.

> > Some time had elapsed and he posted a second time telling that he was

> > having success with diminishing the Misophonia triggers.

> >

> > For those of you that contact a Neurofeedback practitioner and proceed

> > with sessions, I will offer this advice … Do not monitor all of

> the

> > posts on this site closely. I say this because of the number of posts

> > where people are venting and telling of new and different triggers

> that

> > outrage them. There have been arguments on this site in the past as to

> > if the venting is helpful. I am not entering into that argument but

> > rather just giving you advice on an observation that my Neurofeedback

> > Doctor, my wife, and I all agree on. We feel there is the possibility

> > of one developing new triggers they have not experienced before when

> > reading of them thru the venting on this site. We base this on the

> fact

> > that neither my wife, nor my Doctor, ever realized the manner in which

> > people chew gum until coming in contact with me. It was simply

> > something they were not conscience of. But now they both notice if

> > people chew their gum or food in an obnoxious manner. It does not

> cause

> > them to get angry, but they do notice it now as readily as a

> Misophonia

> > victim does. For this reason I scan the headlines on this site but do

> > not read any postings that appear to be from someone venting or

> telling

> > of new triggers.

> >

> > I intend to stay anonymous on this site as well as in any subsequent

> > article in the NFB Journal. If it was just me I would have no issue

> > with using my real name. But I will not take the chance of subjecting

> > my son to ridicule from his peers if our identification were known and

> > talked of openly on this site, on a Facebook page, or in the media.

> > Please respect this. We all know that if we told acquaintances we had

> > ADD … they would have compassion for us. If we told others that we

> > had depression, or bipolar … we would be shown compassion. In fact

> > if we say, as my Doctor and I maintain, " I have an element of

> > OCD " … we will be looked upon with compassion. But to tell

> > someone of Misophonia and its triggers & anger … will most often

> > bring us ridicule and mean spirited provoking.

> >

> > We live in Eastern Iowa so those of you that are close in proximity

> may

> > send an email to my Yahoo Mail account and I will respond with the

> name

> > of my Neurofeedback practitioner. For everyone else, please respect

> the

> > fact that my Doctor cannot accept the several calls that could

> inundate

> > him from those looking for referrals. He will not make referrals but

> > would be glad to accept a phone call or an email from NFB

> practitioners

> > in regards to protocol. My Doctor strongly suggests that one go to the

> > website www.bcia.org <http://www.bcia.org/> to find a practitioner in

> > your area and to make sure that they are specifically accredited for

> > " BCN. " Another valuable website is the International Society

> > for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> .

> > At this time the practitioner listing section of this site is down so

> > check back.

> >

>

[Guest guest]

Thanks for the info Heidi, I found a LENS practitioner here in sdale,AZ. from the link. So far this seems to be the most promising therapy, at least that has been discussed on this site. I have tried so many things in the past and non have really even put a dent in it. Good luck with yours! Mike To: Soundsensitivity Sent: Monday, February 20, 2012 11:35 PM Subject: Re: The CURE ... Neurofeedback

Hi,I too am trying NFB. I have said before in my personal opinion I do not think I have OCD. BUT I don't' think the label matters at all. NFB does not care about labels. Nevertheless my practitioner also doesn't think I have OCD based on those parts of my brain that do or do not "light" up with the LENS mapping. Again, it doesn't really matter one way of the other, NFB will treat brain wiring problems regardless of what we call them. And because every one of our brains our different, our treatment will be different anyway. But I imagine as practitioners begin to share our stories, they will find similarities.Since I decided to give NFB a try, I have researched the heck out of it. I hope you all don't mind me sharing what I've discovered. I think it's important to know that there are splits within NFB community itself. Some providers like some equipment and other's don't.

As a bit of background NFB has long been bashed by the pharmaceutical company because it is a threat. So the NFB community has really had to fight against a wave of attempts to tarnish their treatment. Over time, insurance gradually started to cover it given how effective it is (especially with ADD) and then some insurance has yanked coverage due to backlash pressure from the pharmaceutical industry. There's just a ton of politics surrounding it, literally. The NFB industry is lobbying Congress to have it included in insurance, etc. Back to my point about differences of opinions among the NFB providers themselves. My doctor uses LENS and the most cutting edge technology: Zengar. Some of the more old school or traditional NRB providers either are on the fence or don't like it. I personally believe that for some of those who are are against it, it probably has to do with money.

Old school technology is slower in results and requires more visits, whereas Zengar often gets results significantly faster, so the practitioner can't bill as much. For others, they just haven't yet been trained, or don't like the idea of it, it does approach NFB in a completely different way. For young people, they can start right off with Zengar and start seeing results. As my practitioner explained to me, because my brain is older it is more set in its ways. So she mapped it with LENS so she could show me the hot spots and where things need to be either calmed down or brought up and then used LENS to treat it for several sessions, as a jack hammer, if you will, breaking up the pieces to be sorted into the right places. To be clear, that's an analogy, NFB doesn't break up your brain. Rather it priming my brain to be in the best state it can be to accept treatment. Next she uses Zengar to really treat the problem

areas, and then may switch to the traditional equipment to finish it off, she will decides as we progress. My doctor is at a national Zengar seminar right now and told me she plans to pose lots of questions about Misophonia to the attendees and the creator of Zengar to try to get as many ideas as possible for my treatment and to help start spreading the word for any of us who find practitioners. She said she'd be willing to speak to any of your doctors as well. Anyway, I'm still at the very beginning stages of treatment but am very hopeful. I am so grateful for Clyle for telling us about NFB starting back in May. I have been saving up just to start this and am so happy the day is finally here. As it turned out my insurance will cover NFB as long as the practitioner doesn't say it's NFB but says it's anxiety or whatever. But there's only one person in SD covered

and I went to her and I was not happy from the first visit so I found someone I trust much more and is outside my insurance. The first person I found used the older equipment, which is fine, but on the first day she put the electrodes on the front part of my head and gave me treatment. The next day I was hostile and my temper was very short. It was not good. I explained this to my new doctor and she explained to me that the manufacturer of the equipment the first person used clearly instructs practitioners to not start off at the front of the brain as it may trigger the exact reaction I experienced. The reaction even had a given name, that I forgot. So if you go the traditional route, please don't let your doctor put an electrode on your forehead for treatment the first day (mapping is different, it's put all around your head, so it has to be on your forehead). Lesson: you gotta work up to the front.

:-)Anyway, just sharing my story and I hope we get to hear more and more positive NFB stories here.Thanks Clyle!!Heidifootnotes:LENS: http://www.ochslabs.com/Zengar: http://www.zengar.com/On Feb 20, 2012, at 9:10 AM, audrey rossow wrote:

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity

Sent: Sunday, February 19, 2012 5:28 PM Subject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder." Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition. First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety." The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized

symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror,

and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB.

And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top

of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

The inner ear contains the cochlea which processes sound, and the

semicircular canals, saccule and utricle which register motion and gravity,

which are essential in adjusting our autonomic nervous system to upright posture

and in giving us a psychological sense of stability and well-being, and a

coherent body image. If one system in the ear goes wrong, it is likely the other

one can too, as realised by Meniere many years ago. Audiologists

(audiovestibulologists?)

therefore have to deal with both systems.

I have explained here previously how it is the vestibular part of the inner

ear that may be mediating visually-triggered misophonia. See the excellent

Wikipedia article on Motion Sickness, for how repetitive visual movement can

cause mayhem when out of sync with concurrent vestibular registration of

apparent motion.

To defend Dr Latimer, people in the past have been labelled as a lot worse

than he says, ie malingerers, hysterics, or with an overactive imagination. I

do not think he is saying that people cannot have these other conditions as well

as misophonia, just that they are not primary or fundamental causes.

______________________________________________________________________

> >

> >

> >

> >

> > The CURE … Neurofeedback

> >

> > Eight months ago, on May 1, 2011, I posted here as to how

> Neurofeedback

> > was proving to be the " cure " for me in regards to this dreaded

> > condition, referred to as Misophonia. I wrote of some extraordinary

> > " successes " I was having at the time, and I wrote, " I do not

> > know if this is the " cure " for all others on this site. I do

> > know what it has done for me so far … it's given me the first

> > real hope in defeating this after 45 years of anguish. " You can

> > read my original post if you go to where it says message # at the top

> of

> > this page, and put in 20318 (do not use a comma in the number). The

> > positive progress I had recorded up to that time was after 24 sessions

> > with a Neurofeedback (NFB) practitioner, and I told of our plans to

> > start our 15 year-old son with NFB who also has Misophonia. To my

> > disbelief, there was response from just two people on this site. That

> > is why I decided to post under the heading " The Cure " in hopes

> > of gaining everyone's attention.

> >

> > Neurofeedback has worked for both my son and me. I will stress that I

> > suffered with this Misophonia condition for 45 years and to a degree

> > just as strong as relayed by any of the messages posted on this site.

> > Both my son and I have also dealt with various symptoms of OCD, which

> > both my NFB Doctor and I feel that this condition is an element of. I

> > have read past arguments of those that don't consider this OCD as

> > they don't exhibit the " recognized " or usual symptoms, or

> > have an official diagnosis of OCD thru the " main stream "

> > physicians. Since I have not heard of others being treated

> successfully

> > thru other means, I believe my NFB Doctor and I have earned the

> > credibility in referring to this condition as an element of OCD.

> >

> > If there were a rating system developed, both my wife and I would put

> me

> > at a strong 90 to 95% improvement from where I was several months ago.

> > I would be at the 100% level as far as the total absence of the anger

> > that is instantaneously present when Misophonia sufferers encounter a

> > " trigger. " With some of the " successes " I am enjoying

> > my wife tells me that, " You are completely cured. " But I

> > don't accept that quite yet as there are a couple elements that I

> > still notice, although ever so slightly. The terrific part of NFB is

> > that although there may be an " ebb & flow " of reactions during

> > treatment as improvements are made … improvements realized are

> > permanent. Even more promising are studies that have shown that even

> > when NFB sessions are stopped, subtle improvements are still

> recognized

> > months later. Our son we would put at an 80% improvement level.

> > Possibly we could rate him higher yet on that scale but with people

> that

> > age it can be difficult to determine if some actions are unrelated to

> > this condition and rather just the normal teenager hormones to be

> dealt

> > with. He also started with more profound " recognized " and

> > typical OCD symptoms than what I did.

> >

> >

> >

> > In addition, my higher rating of improvement can be attributed to my

> > having a total of 112 NFB sessions so far versus my son's 64

> > sessions. With saying that I want to stress at this point not to let

> > the number of sessions and the related costs deter you. I pointed out

> > in my original post that I paid $4,100 for my initial 40 sessions

> along

> > with a beginning and ending QEEG. At the end of the initial 40

> > sessions, both for myself as well as my son, my wife and I agreed that

> > both of us had achieved a 60-70% improvement for our Misophonia versus

> > our pre-Neurofeedback condition. Imagine how different your life would

> > be, or that of your child, if you/he/she were rid of 60-70% of the

> > triggers and anger … actually more on the anger as most of that

> > leaves completely and is the most pronounced effect first realized.

> > Although our lives would have been so much more enjoyable even if we

> had

> > stopped after the initial 40 sessions, we made the decision to strive

> > for perfection and be cured completely. My son has never complained

> one

> > time with going to the 64 sessions as he continues to realize the

> subtle

> > improvements he continues to make.

> >

> > Our NFB practitioner will be starting with the use of a program called

> > the LORETA in another 3 weeks. The LORETA, which he will incorporate

> in

> > every third session, is like a mini-QEEG, a functional imaging

> technique

> > that looks directly at brain activity in " real time. " The data

> > to date is showing the use of the LORETA enables one to treat at a

> more

> > successful rate … at a quicker pace … and for more conditions!

> > Naturally we are excited about this as we feel that he will be able to

> > identify and treat those last stubborn areas of our brains.

> >

> > Over the last several months I have compiled nearly 80 pages of a

> > journal chronicling the progress we have achieved thru Neurofeedback.

> I

> > am working on condensing this material to a version that I can post at

> a

> > later date so others may identify with situations we have encountered

> > with triggers that have resulted in " successes " with a

> > non-reaction and no anger present. In addition, our Doctor will be

> > putting together a report for the Neurofeedback Journal and

> profession,

> > along with my input from a patient's perspective, regarding

> > NFB's success with treating Misophonia.

> >

> > I am going to add a disclaimer to my post. All brains are different,

> > and some people may not respond favorably to Neurofeedback, there are

> no

> > guarantees. But, we are not the only people with this condition that

> > have experienced success with Neurofeedback. My Doctor recently

> learned

> > of an NFB practitioner in Texas that had posted on a professional

> online

> > forum asking if anyone had experience in treating Misophonia. This

> > practitioner initially started seeing someone for ADD, but then this

> > patient's parents educated him on the Misophonia their child had.

> > Some time had elapsed and he posted a second time telling that he was

> > having success with diminishing the Misophonia triggers.

> >

> > For those of you that contact a Neurofeedback practitioner and proceed

> > with sessions, I will offer this advice … Do not monitor all of

> the

> > posts on this site closely. I say this because of the number of posts

> > where people are venting and telling of new and different triggers

> that

> > outrage them. There have been arguments on this site in the past as to

> > if the venting is helpful. I am not entering into that argument but

> > rather just giving you advice on an observation that my Neurofeedback

> > Doctor, my wife, and I all agree on. We feel there is the possibility

> > of one developing new triggers they have not experienced before when

> > reading of them thru the venting on this site. We base this on the

> fact

> > that neither my wife, nor my Doctor, ever realized the manner in which

> > people chew gum until coming in contact with me. It was simply

> > something they were not conscience of. But now they both notice if

> > people chew their gum or food in an obnoxious manner. It does not

> cause

> > them to get angry, but they do notice it now as readily as a

> Misophonia

> > victim does. For this reason I scan the headlines on this site but do

> > not read any postings that appear to be from someone venting or

> telling

> > of new triggers.

> >

> > I intend to stay anonymous on this site as well as in any subsequent

> > article in the NFB Journal. If it was just me I would have no issue

> > with using my real name. But I will not take the chance of subjecting

> > my son to ridicule from his peers if our identification were known and

> > talked of openly on this site, on a Facebook page, or in the media.

> > Please respect this. We all know that if we told acquaintances we had

> > ADD … they would have compassion for us. If we told others that we

> > had depression, or bipolar … we would be shown compassion. In fact

> > if we say, as my Doctor and I maintain, " I have an element of

> > OCD " … we will be looked upon with compassion. But to tell

> > someone of Misophonia and its triggers & anger … will most often

> > bring us ridicule and mean spirited provoking.

> >

> > We live in Eastern Iowa so those of you that are close in proximity

> may

> > send an email to my Yahoo Mail account and I will respond with the

> name

> > of my Neurofeedback practitioner. For everyone else, please respect

> the

> > fact that my Doctor cannot accept the several calls that could

> inundate

> > him from those looking for referrals. He will not make referrals but

> > would be glad to accept a phone call or an email from NFB

> practitioners

> > in regards to protocol. My Doctor strongly suggests that one go to the

> > website www.bcia.org <http://www.bcia.org/> to find a practitioner in

> > your area and to make sure that they are specifically accredited for

> > " BCN. " Another valuable website is the International Society

> > for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> .

> > At this time the practitioner listing section of this site is down so

> > check back.

> >

>

[Guest guest]

Very interesting,I cant even find one in the UK and certainly couldn't afford

the cost for me and my daughter.

> > >

> > >

> > >

> > >

> > > The CURE … Neurofeedback

> > >

> > > Eight months ago, on May 1, 2011, I posted here as to how

> > Neurofeedback

> > > was proving to be the " cure " for me in regards to this dreaded

> > > condition, referred to as Misophonia. I wrote of some extraordinary

> > > " successes " I was having at the time, and I wrote, " I do not

> > > know if this is the " cure " for all others on this site. I do

> > > know what it has done for me so far … it's given me the first

> > > real hope in defeating this after 45 years of anguish. " You can

> > > read my original post if you go to where it says message # at the top

> > of

> > > this page, and put in 20318 (do not use a comma in the number). The

> > > positive progress I had recorded up to that time was after 24 sessions

> > > with a Neurofeedback (NFB) practitioner, and I told of our plans to

> > > start our 15 year-old son with NFB who also has Misophonia. To my

> > > disbelief, there was response from just two people on this site. That

> > > is why I decided to post under the heading " The Cure " in hopes

> > > of gaining everyone's attention.

> > >

> > > Neurofeedback has worked for both my son and me. I will stress that I

> > > suffered with this Misophonia condition for 45 years and to a degree

> > > just as strong as relayed by any of the messages posted on this site.

> > > Both my son and I have also dealt with various symptoms of OCD, which

> > > both my NFB Doctor and I feel that this condition is an element of. I

> > > have read past arguments of those that don't consider this OCD as

> > > they don't exhibit the " recognized " or usual symptoms, or

> > > have an official diagnosis of OCD thru the " main stream "

> > > physicians. Since I have not heard of others being treated

> > successfully

> > > thru other means, I believe my NFB Doctor and I have earned the

> > > credibility in referring to this condition as an element of OCD.

> > >

> > > If there were a rating system developed, both my wife and I would put

> > me

> > > at a strong 90 to 95% improvement from where I was several months ago.

> > > I would be at the 100% level as far as the total absence of the anger

> > > that is instantaneously present when Misophonia sufferers encounter a

> > > " trigger. " With some of the " successes " I am enjoying

> > > my wife tells me that, " You are completely cured. " But I

> > > don't accept that quite yet as there are a couple elements that I

> > > still notice, although ever so slightly. The terrific part of NFB is

> > > that although there may be an " ebb & flow " of reactions during

> > > treatment as improvements are made … improvements realized are

> > > permanent. Even more promising are studies that have shown that even

> > > when NFB sessions are stopped, subtle improvements are still

> > recognized

> > > months later. Our son we would put at an 80% improvement level.

> > > Possibly we could rate him higher yet on that scale but with people

> > that

> > > age it can be difficult to determine if some actions are unrelated to

> > > this condition and rather just the normal teenager hormones to be

> > dealt

> > > with. He also started with more profound " recognized " and

> > > typical OCD symptoms than what I did.

> > >

> > >

> > >

> > > In addition, my higher rating of improvement can be attributed to my

> > > having a total of 112 NFB sessions so far versus my son's 64

> > > sessions. With saying that I want to stress at this point not to let

> > > the number of sessions and the related costs deter you. I pointed out

> > > in my original post that I paid $4,100 for my initial 40 sessions

> > along

> > > with a beginning and ending QEEG. At the end of the initial 40

> > > sessions, both for myself as well as my son, my wife and I agreed that

> > > both of us had achieved a 60-70% improvement for our Misophonia versus

> > > our pre-Neurofeedback condition. Imagine how different your life would

> > > be, or that of your child, if you/he/she were rid of 60-70% of the

> > > triggers and anger … actually more on the anger as most of that

> > > leaves completely and is the most pronounced effect first realized.

> > > Although our lives would have been so much more enjoyable even if we

> > had

> > > stopped after the initial 40 sessions, we made the decision to strive

> > > for perfection and be cured completely. My son has never complained

> > one

> > > time with going to the 64 sessions as he continues to realize the

> > subtle

> > > improvements he continues to make.

> > >

> > > Our NFB practitioner will be starting with the use of a program called

> > > the LORETA in another 3 weeks. The LORETA, which he will incorporate

> > in

> > > every third session, is like a mini-QEEG, a functional imaging

> > technique

> > > that looks directly at brain activity in " real time. " The data

> > > to date is showing the use of the LORETA enables one to treat at a

> > more

> > > successful rate … at a quicker pace … and for more conditions!

> > > Naturally we are excited about this as we feel that he will be able to

> > > identify and treat those last stubborn areas of our brains.

> > >

> > > Over the last several months I have compiled nearly 80 pages of a

> > > journal chronicling the progress we have achieved thru Neurofeedback.

> > I

> > > am working on condensing this material to a version that I can post at

> > a

> > > later date so others may identify with situations we have encountered

> > > with triggers that have resulted in " successes " with a

> > > non-reaction and no anger present. In addition, our Doctor will be

> > > putting together a report for the Neurofeedback Journal and

> > profession,

> > > along with my input from a patient's perspective, regarding

> > > NFB's success with treating Misophonia.

> > >

> > > I am going to add a disclaimer to my post. All brains are different,

> > > and some people may not respond favorably to Neurofeedback, there are

> > no

> > > guarantees. But, we are not the only people with this condition that

> > > have experienced success with Neurofeedback. My Doctor recently

> > learned

> > > of an NFB practitioner in Texas that had posted on a professional

> > online

> > > forum asking if anyone had experience in treating Misophonia. This

> > > practitioner initially started seeing someone for ADD, but then this

> > > patient's parents educated him on the Misophonia their child had.

> > > Some time had elapsed and he posted a second time telling that he was

> > > having success with diminishing the Misophonia triggers.

> > >

> > > For those of you that contact a Neurofeedback practitioner and proceed

> > > with sessions, I will offer this advice … Do not monitor all of

> > the

> > > posts on this site closely. I say this because of the number of posts

> > > where people are venting and telling of new and different triggers

> > that

> > > outrage them. There have been arguments on this site in the past as to

> > > if the venting is helpful. I am not entering into that argument but

> > > rather just giving you advice on an observation that my Neurofeedback

> > > Doctor, my wife, and I all agree on. We feel there is the possibility

> > > of one developing new triggers they have not experienced before when

> > > reading of them thru the venting on this site. We base this on the

> > fact

> > > that neither my wife, nor my Doctor, ever realized the manner in which

> > > people chew gum until coming in contact with me. It was simply

> > > something they were not conscience of. But now they both notice if

> > > people chew their gum or food in an obnoxious manner. It does not

> > cause

> > > them to get angry, but they do notice it now as readily as a

> > Misophonia

> > > victim does. For this reason I scan the headlines on this site but do

> > > not read any postings that appear to be from someone venting or

> > telling

> > > of new triggers.

> > >

> > > I intend to stay anonymous on this site as well as in any subsequent

> > > article in the NFB Journal. If it was just me I would have no issue

> > > with using my real name. But I will not take the chance of subjecting

> > > my son to ridicule from his peers if our identification were known and

> > > talked of openly on this site, on a Facebook page, or in the media.

> > > Please respect this. We all know that if we told acquaintances we had

> > > ADD … they would have compassion for us. If we told others that we

> > > had depression, or bipolar … we would be shown compassion. In fact

> > > if we say, as my Doctor and I maintain, " I have an element of

> > > OCD " … we will be looked upon with compassion. But to tell

> > > someone of Misophonia and its triggers & anger … will most often

> > > bring us ridicule and mean spirited provoking.

> > >

> > > We live in Eastern Iowa so those of you that are close in proximity

> > may

> > > send an email to my Yahoo Mail account and I will respond with the

> > name

> > > of my Neurofeedback practitioner. For everyone else, please respect

> > the

> > > fact that my Doctor cannot accept the several calls that could

> > inundate

> > > him from those looking for referrals. He will not make referrals but

> > > would be glad to accept a phone call or an email from NFB

> > practitioners

> > > in regards to protocol. My Doctor strongly suggests that one go to the

> > > website www.bcia.org <http://www.bcia.org/> to find a practitioner in

> > > your area and to make sure that they are specifically accredited for

> > > " BCN. " Another valuable website is the International Society

> > > for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> .

> > > At this time the practitioner listing section of this site is down so

> > > check back.

> > >

> >

>

[Guest guest]

well put heidi ,and goodluck wwith the nfb..looking forward to hear about your progress..jason

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!!

To: Soundsensitivity Sent: Sunday, February 19, 2012 5:28 PMSubject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer

I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan Clinical

Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder."

Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition.

First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away thru

my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or scientific

community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety."

The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized symptoms of OCD

… the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror, and my

son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB. And

as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it

says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those

that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The

terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made … improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want

to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained

one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a

version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in "successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing

someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before

when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known

and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He

will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

Correct - NFB does not care. ALL NFB and LENS protocols are working with your

brain OVERALL to put it all into balance. Misophonia and OCD being cured at the

same time does not make them related. NFB should correct whatever in your brain

is functioning sub-optimally. I forwarded the MAS to my NFB person so she can

pass it to others on her site and see if there is any correlation between the

severity of misophonia and treatment success, along with other note-comparisons.

Please continue to share your stories!!! This is important.

> > >

> > >

> > >

> > >

> > > The CURE … Neurofeedback

> > >

> > > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback

> > > was proving to be the " cure " for me in regards to this dreaded

> > > condition, referred to as Misophonia. I wrote of some extraordinary

> > > " successes " I was having at the time, and I wrote, " I do not

> > > know if this is the " cure " for all others on this site. I do

> > > know what it has done for me so far … it's given me the first

> > > real hope in defeating this after 45 years of anguish. " You can

> > > read my original post if you go to where it says message # at the top of

> > > this page, and put in 20318 (do not use a comma in the number). The

> > > positive progress I had recorded up to that time was after 24 sessions

> > > with a Neurofeedback (NFB) practitioner, and I told of our plans to

> > > start our 15 year-old son with NFB who also has Misophonia. To my

> > > disbelief, there was response from just two people on this site. That

> > > is why I decided to post under the heading " The Cure " in hopes

> > > of gaining everyone's attention.

> > >

> > > Neurofeedback has worked for both my son and me. I will stress that I

> > > suffered with this Misophonia condition for 45 years and to a degree

> > > just as strong as relayed by any of the messages posted on this site.

> > > Both my son and I have also dealt with various symptoms of OCD, which

> > > both my NFB Doctor and I feel that this condition is an element of. I

> > > have read past arguments of those that don't consider this OCD as

> > > they don't exhibit the " recognized " or usual symptoms, or

> > > have an official diagnosis of OCD thru the " main stream "

> > > physicians. Since I have not heard of others being treated successfully

> > > thru other means, I believe my NFB Doctor and I have earned the

> > > credibility in referring to this condition as an element of OCD.

> > >

> > > If there were a rating system developed, both my wife and I would put me

> > > at a strong 90 to 95% improvement from where I was several months ago.

> > > I would be at the 100% level as far as the total absence of the anger

> > > that is instantaneously present when Misophonia sufferers encounter a

> > > " trigger. " With some of the " successes " I am enjoying

> > > my wife tells me that, " You are completely cured. " But I

> > > don't accept that quite yet as there are a couple elements that I

> > > still notice, although ever so slightly. The terrific part of NFB is

> > > that although there may be an " ebb & flow " of reactions during

> > > treatment as improvements are made … improvements realized are

> > > permanent. Even more promising are studies that have shown that even

> > > when NFB sessions are stopped, subtle improvements are still recognized

> > > months later. Our son we would put at an 80% improvement level.

> > > Possibly we could rate him higher yet on that scale but with people that

> > > age it can be difficult to determine if some actions are unrelated to

> > > this condition and rather just the normal teenager hormones to be dealt

> > > with. He also started with more profound " recognized " and

> > > typical OCD symptoms than what I did.

> > >

> > >

> > >

> > > In addition, my higher rating of improvement can be attributed to my

> > > having a total of 112 NFB sessions so far versus my son's 64

> > > sessions. With saying that I want to stress at this point not to let

> > > the number of sessions and the related costs deter you. I pointed out

> > > in my original post that I paid $4,100 for my initial 40 sessions along

> > > with a beginning and ending QEEG. At the end of the initial 40

> > > sessions, both for myself as well as my son, my wife and I agreed that

> > > both of us had achieved a 60-70% improvement for our Misophonia versus

> > > our pre-Neurofeedback condition. Imagine how different your life would

> > > be, or that of your child, if you/he/she were rid of 60-70% of the

> > > triggers and anger … actually more on the anger as most of that

> > > leaves completely and is the most pronounced effect first realized.

> > > Although our lives would have been so much more enjoyable even if we had

> > > stopped after the initial 40 sessions, we made the decision to strive

> > > for perfection and be cured completely. My son has never complained one

> > > time with going to the 64 sessions as he continues to realize the subtle

> > > improvements he continues to make.

> > >

> > > Our NFB practitioner will be starting with the use of a program called

> > > the LORETA in another 3 weeks. The LORETA, which he will incorporate in

> > > every third session, is like a mini-QEEG, a functional imaging technique

> > > that looks directly at brain activity in " real time. " The data

> > > to date is showing the use of the LORETA enables one to treat at a more

> > > successful rate … at a quicker pace … and for more conditions!

> > > Naturally we are excited about this as we feel that he will be able to

> > > identify and treat those last stubborn areas of our brains.

> > >

> > > Over the last several months I have compiled nearly 80 pages of a

> > > journal chronicling the progress we have achieved thru Neurofeedback. I

> > > am working on condensing this material to a version that I can post at a

> > > later date so others may identify with situations we have encountered

> > > with triggers that have resulted in " successes " with a

> > > non-reaction and no anger present. In addition, our Doctor will be

> > > putting together a report for the Neurofeedback Journal and profession,

> > > along with my input from a patient's perspective, regarding

> > > NFB's success with treating Misophonia.

> > >

> > > I am going to add a disclaimer to my post. All brains are different,

> > > and some people may not respond favorably to Neurofeedback, there are no

> > > guarantees. But, we are not the only people with this condition that

> > > have experienced success with Neurofeedback. My Doctor recently learned

> > > of an NFB practitioner in Texas that had posted on a professional online

> > > forum asking if anyone had experience in treating Misophonia. This

> > > practitioner initially started seeing someone for ADD, but then this

> > > patient's parents educated him on the Misophonia their child had.

> > > Some time had elapsed and he posted a second time telling that he was

> > > having success with diminishing the Misophonia triggers.

> > >

> > > For those of you that contact a Neurofeedback practitioner and proceed

> > > with sessions, I will offer this advice … Do not monitor all of the

> > > posts on this site closely. I say this because of the number of posts

> > > where people are venting and telling of new and different triggers that

> > > outrage them. There have been arguments on this site in the past as to

> > > if the venting is helpful. I am not entering into that argument but

> > > rather just giving you advice on an observation that my Neurofeedback

> > > Doctor, my wife, and I all agree on. We feel there is the possibility

> > > of one developing new triggers they have not experienced before when

> > > reading of them thru the venting on this site. We base this on the fact

> > > that neither my wife, nor my Doctor, ever realized the manner in which

> > > people chew gum until coming in contact with me. It was simply

> > > something they were not conscience of. But now they both notice if

> > > people chew their gum or food in an obnoxious manner. It does not cause

> > > them to get angry, but they do notice it now as readily as a Misophonia

> > > victim does. For this reason I scan the headlines on this site but do

> > > not read any postings that appear to be from someone venting or telling

> > > of new triggers.

> > >

> > > I intend to stay anonymous on this site as well as in any subsequent

> > > article in the NFB Journal. If it was just me I would have no issue

> > > with using my real name. But I will not take the chance of subjecting

> > > my son to ridicule from his peers if our identification were known and

> > > talked of openly on this site, on a Facebook page, or in the media.

> > > Please respect this. We all know that if we told acquaintances we had

> > > ADD … they would have compassion for us. If we told others that we

> > > had depression, or bipolar … we would be shown compassion. In fact

> > > if we say, as my Doctor and I maintain, " I have an element of

> > > OCD " … we will be looked upon with compassion. But to tell

> > > someone of Misophonia and its triggers & anger … will most often

> > > bring us ridicule and mean spirited provoking.

> > >

> > > We live in Eastern Iowa so those of you that are close in proximity may

> > > send an email to my Yahoo Mail account and I will respond with the name

> > > of my Neurofeedback practitioner. For everyone else, please respect the

> > > fact that my Doctor cannot accept the several calls that could inundate

> > > him from those looking for referrals. He will not make referrals but

> > > would be glad to accept a phone call or an email from NFB practitioners

> > > in regards to protocol. My Doctor strongly suggests that one go to the

> > > website www.bcia.org <http://www.bcia.org/> to find a practitioner in

> > > your area and to make sure that they are specifically accredited for

> > > " BCN. " Another valuable website is the International Society

> > > for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> .

> > > At this time the practitioner listing section of this site is down so

> > > check back.

> > >

> >

> >

> >

> >

>

[Guest guest]

Hi everyone, My daughter started neurofeedback also and is doing great.. She is improving in so many areas of her life. It is not helping with the misophonia just yet but with so many other things. We are thrilled!!! A year ago someone recommended NFB but I didn't do it because I read that it didn't help others. I now know we all have to try everything because everyone is different. So glad a year later she is doing neurofeedback with great success after only 4 sessions. She actually said to me the other night, "Mom I feel great, I no longer have depression." My daughter started right away with Zengar. The results have been amazing. We were able to drive together for the first time in over a year. She even asked the other day if

she could come to the store with me. I am her biggest trigger so anytime I am going out she is thrilled because she is free from my sounds. So for her to tell me she wanted to go with me was amazing. She is doing great in school and she went back to dance for the first time in 2 years. (Her favorite thing to do) She is having success in so many areas. Her NFB doctor said, "don't look for less anger with her misophonia just yet but look for other signs in her behavior towards life, school, etc." Well that is what is so exciting, there are so many little things improving each and everyday. It's so fun to watch and I feel like I am getting my daughter back. She is leaving the house, going to school and having a better quality of life. A far stretch for not leaving her bed for months. She even walked 2 miles last week and felt great. She is out at the movies right now with a new friend as I

write this. So many things improving I can't keep up. She is also doing DBT and her therapist said she is doing incredibly well. Right before she went today, she heard a trigger noise, my husband called me and I thought, God it's all over. Well she came home from therapy in a great mood. Oh and another thing, a professional, her DBT therapist (not her NFB therapist)laughed at her 2 weeks ago when describing a fear and my daughter brushed it off, it didn't bother her.....I couldn't believe it, before NFB she would have been crushed forever and rightfully so. But when she told me about the incident, she was fine. Thank you so much Clyle for writing when you did. I am getting my daughter back because of it. Oh and another thing, I feel like I found the best NFB therapist. She is amazing with my daughter and she even adjusted the rate for us. ONE MORE THING, my

insurance company is paying about $45.00 towards it as well. Finally I feel like things are working out. To: Soundsensitivity Sent: Tuesday, February 21, 2012 1:35 AM Subject: Re: The CURE ... Neurofeedback

Hi,I too am trying NFB. I have said before in my personal opinion I do not think I have OCD. BUT I don't' think the label matters at all. NFB does not care about labels. Nevertheless my practitioner also doesn't think I have OCD based on those parts of my brain that do or do not "light" up with the LENS mapping. Again, it doesn't really matter one way of the other, NFB will treat brain wiring problems regardless of what we call them. And because every one of our brains our different, our treatment will be different anyway. But I imagine as practitioners begin to share our stories, they will find similarities.Since I decided to give NFB a try, I have researched the heck out of it. I hope you all don't mind me sharing what I've discovered. I think it's important to know that there are splits within NFB community itself. Some providers like some equipment and other's don't.

As a bit of background NFB has long been bashed by the pharmaceutical company because it is a threat. So the NFB community has really had to fight against a wave of attempts to tarnish their treatment. Over time, insurance gradually started to cover it given how effective it is (especially with ADD) and then some insurance has yanked coverage due to backlash pressure from the pharmaceutical industry. There's just a ton of politics surrounding it, literally. The NFB industry is lobbying Congress to have it included in insurance, etc. Back to my point about differences of opinions among the NFB providers themselves. My doctor uses LENS and the most cutting edge technology: Zengar. Some of the more old school or traditional NRB providers either are on the fence or don't like it. I personally believe that for some of those who are are against it, it probably has to do with money.

Old school technology is slower in results and requires more visits, whereas Zengar often gets results significantly faster, so the practitioner can't bill as much. For others, they just haven't yet been trained, or don't like the idea of it, it does approach NFB in a completely different way. For young people, they can start right off with Zengar and start seeing results. As my practitioner explained to me, because my brain is older it is more set in its ways. So she mapped it with LENS so she could show me the hot spots and where things need to be either calmed down or brought up and then used LENS to treat it for several sessions, as a jack hammer, if you will, breaking up the pieces to be sorted into the right places. To be clear, that's an analogy, NFB doesn't break up your brain. Rather it priming my brain to be in the best state it can be to accept treatment. Next she uses Zengar to really treat the problem

areas, and then may switch to the traditional equipment to finish it off, she will decides as we progress. My doctor is at a national Zengar seminar right now and told me she plans to pose lots of questions about Misophonia to the attendees and the creator of Zengar to try to get as many ideas as possible for my treatment and to help start spreading the word for any of us who find practitioners. She said she'd be willing to speak to any of your doctors as well. Anyway, I'm still at the very beginning stages of treatment but am very hopeful. I am so grateful for Clyle for telling us about NFB starting back in May. I have been saving up just to start this and am so happy the day is finally here. As it turned out my insurance will cover NFB as long as the practitioner doesn't say it's NFB but says it's anxiety or whatever. But there's only one person in SD covered

and I went to her and I was not happy from the first visit so I found someone I trust much more and is outside my insurance. The first person I found used the older equipment, which is fine, but on the first day she put the electrodes on the front part of my head and gave me treatment. The next day I was hostile and my temper was very short. It was not good. I explained this to my new doctor and she explained to me that the manufacturer of the equipment the first person used clearly instructs practitioners to not start off at the front of the brain as it may trigger the exact reaction I experienced. The reaction even had a given name, that I forgot. So if you go the traditional route, please don't let your doctor put an electrode on your forehead for treatment the first day (mapping is different, it's put all around your head, so it has to be on your forehead). Lesson: you gotta work up to the front.

:-)Anyway, just sharing my story and I hope we get to hear more and more positive NFB stories here.Thanks Clyle!!Heidifootnotes:LENS: http://www.ochslabs.com/Zengar: http://www.zengar.com/On Feb 20, 2012, at 9:10 AM, audrey rossow wrote:

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity

Sent: Sunday, February 19, 2012 5:28 PM Subject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder." Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition. First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety." The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized

symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror,

and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB.

And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top

of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

So happy for you and your daughter! Makes my heart sing with joy! The fact that she can drive with you makes me think that it is starting to make headway into her Misophonia. So darn wonderful!!HeidiSent from my iPhoneOn Feb 21, 2012, at 5:04 PM, Bernadette Salvatore wrote:

Hi everyone, My daughter started neurofeedback also and is doing great.. She is improving in so many areas of her life. It is not helping with the misophonia just yet but with so many other things. We are thrilled!!! A year ago someone recommended NFB but I didn't do it because I read that it didn't help others. I now know we all have to try everything because everyone is different. So glad a year later she is doing neurofeedback with great success after only 4 sessions. She actually said to me the other night, "Mom I feel great, I no longer have depression." My daughter started right away with Zengar. The results have been amazing. We were able to drive together for the first time in over a year. She even asked the other day if

she could come to the store with me. I am her biggest trigger so anytime I am going out she is thrilled because she is free from my sounds. So for her to tell me she wanted to go with me was amazing. She is doing great in school and she went back to dance for the first time in 2 years. (Her favorite thing to do) She is having success in so many areas. Her NFB doctor said, "don't look for less anger with her misophonia just yet but look for other signs in her behavior towards life, school, etc." Well that is what is so exciting, there are so many little things improving each and everyday. It's so fun to watch and I feel like I am getting my daughter back. She is leaving the house, going to school and having a better quality of life. A far stretch for not leaving her bed for months. She even walked 2 miles last week and felt great. She is out at the movies right now with a new friend as I

write this. So many things improving I can't keep up. She is also doing DBT and her therapist said she is doing incredibly well. Right before she went today, she heard a trigger noise, my husband called me and I thought, God it's all over. Well she came home from therapy in a great mood. Oh and another thing, a professional, her DBT therapist (not her NFB therapist)laughed at her 2 weeks ago when describing a fear and my daughter brushed it off, it didn't bother her.....I couldn't believe it, before NFB she would have been crushed forever and rightfully so. But when she told me about the incident, she was fine. Thank you so much Clyle for writing when you did. I am getting my daughter back because of it. Oh and another thing, I feel like I found the best NFB therapist. She is amazing with my daughter and she even adjusted the rate for us. ONE MORE THING, my

insurance company is paying about $45.00 towards it as well. Finally I feel like things are working out. To: Soundsensitivity Sent: Tuesday, February 21, 2012 1:35 AM Subject: Re: The CURE ... Neurofeedback

Hi,I too am trying NFB. I have said before in my personal opinion I do not think I have OCD. BUT I don't' think the label matters at all. NFB does not care about labels. Nevertheless my practitioner also doesn't think I have OCD based on those parts of my brain that do or do not "light" up with the LENS mapping. Again, it doesn't really matter one way of the other, NFB will treat brain wiring problems regardless of what we call them. And because every one of our brains our different, our treatment will be different anyway. But I imagine as practitioners begin to share our stories, they will find similarities.Since I decided to give NFB a try, I have researched the heck out of it. I hope you all don't mind me sharing what I've discovered. I think it's important to know that there are splits within NFB community itself. Some providers like some equipment and other's don't.

As a bit of background NFB has long been bashed by the pharmaceutical company because it is a threat. So the NFB community has really had to fight against a wave of attempts to tarnish their treatment. Over time, insurance gradually started to cover it given how effective it is (especially with ADD) and then some insurance has yanked coverage due to backlash pressure from the pharmaceutical industry. There's just a ton of politics surrounding it, literally. The NFB industry is lobbying Congress to have it included in insurance, etc. Back to my point about differences of opinions among the NFB providers themselves. My doctor uses LENS and the most cutting edge technology: Zengar. Some of the more old school or traditional NRB providers either are on the fence or don't like it. I personally believe that for some of those who are are against it, it probably has to do with money.

Old school technology is slower in results and requires more visits, whereas Zengar often gets results significantly faster, so the practitioner can't bill as much. For others, they just haven't yet been trained, or don't like the idea of it, it does approach NFB in a completely different way. For young people, they can start right off with Zengar and start seeing results. As my practitioner explained to me, because my brain is older it is more set in its ways. So she mapped it with LENS so she could show me the hot spots and where things need to be either calmed down or brought up and then used LENS to treat it for several sessions, as a jack hammer, if you will, breaking up the pieces to be sorted into the right places. To be clear, that's an analogy, NFB doesn't break up your brain. Rather it priming my brain to be in the best state it can be to accept treatment. Next she uses Zengar to really treat the problem

areas, and then may switch to the traditional equipment to finish it off, she will decides as we progress. My doctor is at a national Zengar seminar right now and told me she plans to pose lots of questions about Misophonia to the attendees and the creator of Zengar to try to get as many ideas as possible for my treatment and to help start spreading the word for any of us who find practitioners. She said she'd be willing to speak to any of your doctors as well. Anyway, I'm still at the very beginning stages of treatment but am very hopeful. I am so grateful for Clyle for telling us about NFB starting back in May. I have been saving up just to start this and am so happy the day is finally here. As it turned out my insurance will cover NFB as long as the practitioner doesn't say it's NFB but says it's anxiety or whatever. But there's only one person in SD covered

and I went to her and I was not happy from the first visit so I found someone I trust much more and is outside my insurance. The first person I found used the older equipment, which is fine, but on the first day she put the electrodes on the front part of my head and gave me treatment. The next day I was hostile and my temper was very short. It was not good. I explained this to my new doctor and she explained to me that the manufacturer of the equipment the first person used clearly instructs practitioners to not start off at the front of the brain as it may trigger the exact reaction I experienced. The reaction even had a given name, that I forgot. So if you go the traditional route, please don't let your doctor put an electrode on your forehead for treatment the first day (mapping is different, it's put all around your head, so it has to be on your forehead). Lesson: you gotta work up to the front.

:-)Anyway, just sharing my story and I hope we get to hear more and more positive NFB stories here.Thanks Clyle!!Heidifootnotes:LENS: http://www.ochslabs.com/Zengar: http://www.zengar.com/On Feb 20, 2012, at 9:10 AM, audrey rossow wrote:

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity

Sent: Sunday, February 19, 2012 5:28 PM Subject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder." Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition. First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety." The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized

symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror,

and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB.

And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top

of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

I am so happy for you and your daughter!  I know exactly how you feel.  It’s amazing the little things other people take for granted, but make us so happy that our daughters can do. I talked to my daughter yesterday about going to NFB again.  She did about 20 treatments 5 years ago when she was 9 or 10, but I was excited to hear that more treatments might make things even better.  Plus, I found a new NFB practioner that my coworkers say is great and not very expensive (compared to the last one). Maybe fixing the electrical problems in the brain is the key! Very exciting! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Bernadette SalvatoreSent: Tuesday, February 21, 2012 8:04 PMTo: Soundsensitivity Subject: Re: The CURE ... Neurofeedback Hi everyone, My daughter started neurofeedback also and is doing great.. She is improving in so many areas of her life. It is not helping with the misophonia just yet but with so many other things. We are thrilled!!! A year ago someone recommended NFB but I didn't do it because I read that it didn't help others. I now know we all have to try everything because everyone is different. So glad a year later she is doing neurofeedback with great success after only 4 sessions. She actually said to me the other night, " Mom I feel great, I no longer have depression. " My daughter started right away with Zengar. The results have been amazing. We were able to drive together for the first time in over a year. She even asked the other day if she could come to the store with me. I am her biggest trigger so anytime I am going out she is thrilled because she is free from my sounds. So for her to tell me she wanted to go with me was amazing. She is doing great in school and she went back to dance for the first time in 2 years. (Her favorite thing to do) She is having success in so many areas. Her NFB doctor said, " don't look for less anger with her misophonia just yet but look for other signs in her behavior towards life, school, etc. " Well that is what is so exciting, there are so many little things improving each and everyday. It's so fun to watch and I feel like I am getting my daughter back. She is leaving the house, going to school and having a better quality of life. A far stretch for not leaving her bed for months. She even walked 2 miles last week and felt great. She is out at the movies right now with a new friend as I write this. So many things improving I can't keep up. She is also doing DBT and her therapist said she is doing incredibly well. Right before she went today, she heard a trigger noise, my husband called me and I thought, God it's all over. Well she came home from therapy in a great mood. Oh and another thing, a professional, her DBT therapist (not her NFB therapist)laughed at her 2 weeks ago when describing a fear and my daughter brushed it off, it didn't bother her.....I couldn't believe it, before NFB she would have been crushed forever and rightfully so. But when she told me about the incident, she was fine. Thank you so much Clyle for writing when you did. I am getting my daughter back because of it. Oh and another thing, I feel like I found the best NFB therapist. She is amazing with my daughter and she even adjusted the rate for us. ONE MORE THING, my insurance company is paying about $45.00 towards it as well. Finally I feel like things are working out. To: Soundsensitivity Sent: Tuesday, February 21, 2012 1:35 AMSubject: Re: The CURE ... Neurofeedback Hi,I too am trying NFB. I have said before in my personal opinion I do not think I have OCD. BUT I don't' think the label matters at all. NFB does not care about labels. Nevertheless my practitioner also doesn't think I have OCD based on those parts of my brain that do or do not " light " up with the LENS mapping. Again, it doesn't really matter one way of the other, NFB will treat brain wiring problems regardless of what we call them. And because every one of our brains our different, our treatment will be different anyway. But I imagine as practitioners begin to share our stories, they will find similarities. Since I decided to give NFB a try, I have researched the heck out of it. I hope you all don't mind me sharing what I've discovered. I think it's important to know that there are splits within NFB community itself. Some providers like some equipment and other's don't. As a bit of background NFB has long been bashed by the pharmaceutical company because it is a threat. So the NFB community has really had to fight against a wave of attempts to tarnish their treatment. Over time, insurance gradually started to cover it given how effective it is (especially with ADD) and then some insurance has yanked coverage due to backlash pressure from the pharmaceutical industry. There's just a ton of politics surrounding it, literally. The NFB industry is lobbying Congress to have it included in insurance, etc. Back to my point about differences of opinions among the NFB providers themselves. My doctor uses LENS and the most cutting edge technology: Zengar. Some of the more old school or traditional NRB providers either are on the fence or don't like it. I personally believe that for some of those who are are against it, it probably has to do with money. Old school technology is slower in results and requires more visits, whereas Zengar often gets results significantly faster, so the practitioner can't bill as much. For others, they just haven't yet been trained, or don't like the idea of it, it does approach NFB in a completely different way. For young people, they can start right off with Zengar and start seeing results. As my practitioner explained to me, because my brain is older it is more set in its ways. So she mapped it with LENS so she could show me the hot spots and where things need to be either calmed down or brought up and then used LENS to treat it for several sessions, as a jack hammer, if you will, breaking up the pieces to be sorted into the right places. To be clear, that's an analogy, NFB doesn't break up your brain. Rather it priming my brain to be in the best state it can be to accept treatment. Next she uses Zengar to really treat the problem areas, and then may switch to the traditional equipment to finish it off, she will decides as we progress. My doctor is at a national Zengar seminar right now and told me she plans to pose lots of questions about Misophonia to the attendees and the creator of Zengar to try to get as many ideas as possible for my treatment and to help start spreading the word for any of us who find practitioners. She said she'd be willing to speak to any of your doctors as well. Anyway, I'm still at the very beginning stages of treatment but am very hopeful. I am so grateful for Clyle for telling us about NFB starting back in May. I have been saving up just to start this and am so happy the day is finally here. As it turned out my insurance will cover NFB as long as the practitioner doesn't say it's NFB but says it's anxiety or whatever. But there's only one person in SD covered and I went to her and I was not happy from the first visit so I found someone I trust much more and is outside my insurance. The first person I found used the older equipment, which is fine, but on the first day she put the electrodes on the front part of my head and gave me treatment. The next day I was hostile and my temper was very short. It was not good. I explained this to my new doctor and she explained to me that the manufacturer of the equipment the first person used clearly instructs practitioners to not start off at the front of the brain as it may trigger the exact reaction I experienced. The reaction even had a given name, that I forgot. So if you go the traditional route, please don't let your doctor put an electrode on your forehead for treatment the first day (mapping is different, it's put all around your head, so it has to be on your forehead). Lesson: you gotta work up to the front. :-) Anyway, just sharing my story and I hope we get to hear more and more positive NFB stories here.Thanks Clyle!! Heidifootnotes:LENS: http://www.ochslabs.com/Zengar: http://www.zengar.com/ On Feb 20, 2012, at 9:10 AM, audrey rossow wrote: For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for " BCN " and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity Sent: Sunday, February 19, 2012 5:28 PMSubject: Re: The CURE ... Neurofeedback Misophonia … a misnomerI have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as " Misophonia " with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement: " Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder. " Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as " mistakenly diagnosed, " if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition.First of all … I will refer to this condition as " Misophonia " as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related? One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes " talk with my hands " when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or scientific community, or a " Misophonia " sufferer, to explain to me how that can be hearing related. You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, " If you have been willing to believe that " Misophonia " is a mysterious physiological condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized? " OCD has been described as the following: " Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety. " The various triggers that " Misophonia " sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, " a frequent task, or compulsion, to seek relief from the obsession-related anxiety " . So although a " Misophonia " sufferer may not possess or exhibit the typical & recognized symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD. These obsessions come down to the word " focus. " I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them! Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same " Misophonia " type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror, and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various " Misophonia " triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB. And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former " Misophonia " triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related? >> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the " cure " for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> " successes " I was having at the time, and I wrote, " I do not> know if this is the " cure " for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish. " You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading " The Cure " in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the " recognized " or usual symptoms, or> have an official diagnosis of OCD thru the " main stream " > physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> " trigger. " With some of the " successes " I am enjoying> my wife tells me that, " You are completely cured. " But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an " ebb & flow " of reactions during> treatment as improvements are made … improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound " recognized " and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in " real time. " The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in " successes " with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, " I have an element of> OCD " … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> " BCN. " Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

Thanks, Heidi! I know, a huge improvement! Wow, you're right! That is what the

dr meant. Look for other signs and that is a sure sign she was ok to be around

me (and so close together in the car) and not worrying about what sound I would

make. Huge step for her. It's all sooo interesting!

> >> >

> >> >

> >> >

> >> >

> >> > The CURE … Neurofeedback

> >> >

> >> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback

> >> > was proving to be the " cure " for me in regards to this dreaded

> >> > condition, referred to as Misophonia. I wrote of some extraordinary

> >> > " successes " I was having at the time, and I wrote, " I do not

> >> > know if this is the " cure " for all others on this site. I do

> >> > know what it has done for me so far … it's given me the first

> >> > real hope in defeating this after 45 years of anguish. " You can

> >> > read my original post if you go to where it says message # at the top of

> >> > this page, and put in 20318 (do not use a comma in the number). The

> >> > positive progress I had recorded up to that time was after 24 sessions

> >> > with a Neurofeedback (NFB) practitioner, and I told of our plans to

> >> > start our 15 year-old son with NFB who also has Misophonia. To my

> >> > disbelief, there was response from just two people on this site. That

> >> > is why I decided to post under the heading " The Cure " in hopes

> >> > of gaining everyone's attention.

> >> >

> >> > Neurofeedback has worked for both my son and me. I will stress that I

> >> > suffered with this Misophonia condition for 45 years and to a degree

> >> > just as strong as relayed by any of the messages posted on this site.

> >> > Both my son and I have also dealt with various symptoms of OCD, which

> >> > both my NFB Doctor and I feel that this condition is an element of. I

> >> > have read past arguments of those that don't consider this OCD as

> >> > they don't exhibit the " recognized " or usual symptoms, or

> >> > have an official diagnosis of OCD thru the " main stream "

> >> > physicians. Since I have not heard of others being treated successfully

> >> > thru other means, I believe my NFB Doctor and I have earned the

> >> > credibility in referring to this condition as an element of OCD.

> >> >

> >> > If there were a rating system developed, both my wife and I would put me

> >> > at a strong 90 to 95% improvement from where I was several months ago.

> >> > I would be at the 100% level as far as the total absence of the anger

> >> > that is instantaneously present when Misophonia sufferers encounter a

> >> > " trigger. " With some of the " successes " I am enjoying

> >> > my wife tells me that, " You are completely cured. " But I

> >> > don't accept that quite yet as there are a couple elements that I

> >> > still notice, although ever so slightly. The terrific part of NFB is

> >> > that although there may be an " ebb & flow " of reactions during

> >> > treatment as improvements are made … improvements realized are

> >> > permanent. Even more promising are studies that have shown that even

> >> > when NFB sessions are stopped, subtle improvements are still recognized

> >> > months later. Our son we would put at an 80% improvement level.

> >> > Possibly we could rate him higher yet on that scale but with people that

> >> > age it can be difficult to determine if some actions are unrelated to

> >> > this condition and rather just the normal teenager hormones to be dealt

> >> > with. He also started with more profound " recognized " and

> >> > typical OCD symptoms than what I did.

> >> >

> >> >

> >> >

> >> > In addition, my higher rating of improvement can be attributed to my

> >> > having a total of 112 NFB sessions so far versus my son's 64

> >> > sessions. With saying that I want to stress at this point not to let

> >> > the number of sessions and the related costs deter you. I pointed out

> >> > in my original post that I paid $4,100 for my initial 40 sessions along

> >> > with a beginning and ending QEEG. At the end of the initial 40

> >> > sessions, both for myself as well as my son, my wife and I agreed that

> >> > both of us had achieved a 60-70% improvement for our Misophonia versus

> >> > our pre-Neurofeedback condition. Imagine how different your life would

> >> > be, or that of your child, if you/he/she were rid of 60-70% of the

> >> > triggers and anger … actually more on the anger as most of that

> >> > leaves completely and is the most pronounced effect first realized.

> >> > Although our lives would have been so much more enjoyable even if we had

> >> > stopped after the initial 40 sessions, we made the decision to strive

> >> > for perfection and be cured completely. My son has never complained one

> >> > time with going to the 64 sessions as he continues to realize the subtle

> >> > improvements he continues to make.

> >> >

> >> > Our NFB practitioner will be starting with the use of a program called

> >> > the LORETA in another 3 weeks. The LORETA, which he will incorporate in

> >> > every third session, is like a mini-QEEG, a functional imaging technique

> >> > that looks directly at brain activity in " real time. " The data

> >> > to date is showing the use of the LORETA enables one to treat at a more

> >> > successful rate … at a quicker pace … and for more conditions!

> >> > Naturally we are excited about this as we feel that he will be able to

> >> > identify and treat those last stubborn areas of our brains.

> >> >

> >> > Over the last several months I have compiled nearly 80 pages of a

> >> > journal chronicling the progress we have achieved thru Neurofeedback. I

> >> > am working on condensing this material to a version that I can post at a

> >> > later date so others may identify with situations we have encountered

> >> > with triggers that have resulted in " successes " with a

> >> > non-reaction and no anger present. In addition, our Doctor will be

> >> > putting together a report for the Neurofeedback Journal and profession,

> >> > along with my input from a patient's perspective, regarding

> >> > NFB's success with treating Misophonia.

> >> >

> >> > I am going to add a disclaimer to my post. All brains are different,

> >> > and some people may not respond favorably to Neurofeedback, there are no

> >> > guarantees. But, we are not the only people with this condition that

> >> > have experienced success with Neurofeedback. My Doctor recently learned

> >> > of an NFB practitioner in Texas that had posted on a professional online

> >> > forum asking if anyone had experience in treating Misophonia. This

> >> > practitioner initially started seeing someone for ADD, but then this

> >> > patient's parents educated him on the Misophonia their child had.

> >> > Some time had elapsed and he posted a second time telling that he was

> >> > having success with diminishing the Misophonia triggers.

> >> >

> >> > For those of you that contact a Neurofeedback practitioner and proceed

> >> > with sessions, I will offer this advice … Do not monitor all of the

> >> > posts on this site closely. I say this because of the number of posts

> >> > where people are venting and telling of new and different triggers that

> >> > outrage them. There have been arguments on this site in the past as to

> >> > if the venting is helpful. I am not entering into that argument but

> >> > rather just giving you advice on an observation that my Neurofeedback

> >> > Doctor, my wife, and I all agree on. We feel there is the possibility

> >> > of one developing new triggers they have not experienced before when

> >> > reading of them thru the venting on this site. We base this on the fact

> >> > that neither my wife, nor my Doctor, ever realized the manner in which

> >> > people chew gum until coming in contact with me. It was simply

> >> > something they were not conscience of. But now they both notice if

> >> > people chew their gum or food in an obnoxious manner. It does not cause

> >> > them to get angry, but they do notice it now as readily as a Misophonia

> >> > victim does. For this reason I scan the headlines on this site but do

> >> > not read any postings that appear to be from someone venting or telling

> >> > of new triggers.

> >> >

> >> > I intend to stay anonymous on this site as well as in any subsequent

> >> > article in the NFB Journal. If it was just me I would have no issue

> >> > with using my real name. But I will not take the chance of subjecting

> >> > my son to ridicule from his peers if our identification were known and

> >> > talked of openly on this site, on a Facebook page, or in the media.

> >> > Please respect this. We all know that if we told acquaintances we had

> >> > ADD … they would have compassion for us. If we told others that we

> >> > had depression, or bipolar … we would be shown compassion. In fact

> >> > if we say, as my Doctor and I maintain, " I have an element of

> >> > OCD " … we will be looked upon with compassion. But to tell

> >> > someone of Misophonia and its triggers & anger … will most often

> >> > bring us ridicule and mean spirited provoking.

> >> >

> >> > We live in Eastern Iowa so those of you that are close in proximity may

> >> > send an email to my Yahoo Mail account and I will respond with the name

> >> > of my Neurofeedback practitioner. For everyone else, please respect the

> >> > fact that my Doctor cannot accept the several calls that could inundate

> >> > him from those looking for referrals. He will not make referrals but

> >> > would be glad to accept a phone call or an email from NFB practitioners

> >> > in regards to protocol. My Doctor strongly suggests that one go to the

> >> > website www.bcia.org <http://www.bcia.org/> to find a practitioner in

> >> > your area and to make sure that they are specifically accredited for

> >> > " BCN. " Another valuable website is the International Society

> >> > for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> .

> >> > At this time the practitioner listing section of this site is down so

> >> > check back.

> >> >

> >>

> >>

> >>

> >

> >

> >

> >

>

[Guest guest]

Thank you so much, Kathy. Yes it's very exciting!!! The Zengar is working pretty

fast for my daughter, I just can't believe it. We will continue for as long as

we can. And the fact that our insurance covers some of it helps. Her dr is so

wonderful. She really wanted to help my daughter which is why she adjusted her

fee. She bought all of my daughter's favorite music before we even confirmed we

would do it. She gave us her first appointment free and explained everything to

my daughter for a couple of hours making her feel so comfortable. She is out of

network for us but my insurance cover out of network at a lower percent. She

also enters it in as a therapy session and not nfb since she does counsel her as

well. My husband takes her to it so I write back and forth to her dr. Her dr.

wrote to me, " your love for your daughter shines through with your words. " I

thought that was a huge compliment and a far cry from most of the other doctors

telling me 's condition is my fault. I think back to all of the hell we

have gone through and it's unbelievable. Finally we found something and someone

who is helping! I hope your daughter will return to NFB. Did you notice any

improvement??

> >

> >

> >

> >

> > The CURE … Neurofeedback

> >

> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback

> > was proving to be the " cure " for me in regards to this dreaded

> > condition, referred to as Misophonia. I wrote of some extraordinary

> > " successes " I was having at the time, and I wrote, " I do not

> > know if this is the " cure " for all others on this site. I do

> > know what it has done for me so far … it's given me the first

> > real hope in defeating this after 45 years of anguish. " You can

> > read my original post if you go to where it says message # at the top of

> > this page, and put in 20318 (do not use a comma in the number). The

> > positive progress I had recorded up to that time was after 24 sessions

> > with a Neurofeedback (NFB) practitioner, and I told of our plans to

> > start our 15 year-old son with NFB who also has Misophonia. To my

> > disbelief, there was response from just two people on this site. That

> > is why I decided to post under the heading " The Cure " in hopes

> > of gaining everyone's attention.

> >

> > Neurofeedback has worked for both my son and me. I will stress that I

> > suffered with this Misophonia condition for 45 years and to a degree

> > just as strong as relayed by any of the messages posted on this site.

> > Both my son and I have also dealt with various symptoms of OCD, which

> > both my NFB Doctor and I feel that this condition is an element of. I

> > have read past arguments of those that don't consider this OCD as

> > they don't exhibit the " recognized " or usual symptoms, or

> > have an official diagnosis of OCD thru the " main stream "

> > physicians. Since I have not heard of others being treated successfully

> > thru other means, I believe my NFB Doctor and I have earned the

> > credibility in referring to this condition as an element of OCD.

> >

> > If there were a rating system developed, both my wife and I would put me

> > at a strong 90 to 95% improvement from where I was several months ago.

> > I would be at the 100% level as far as the total absence of the anger

> > that is instantaneously present when Misophonia sufferers encounter a

> > " trigger. " With some of the " successes " I am enjoying

> > my wife tells me that, " You are completely cured. " But I

> > don't accept that quite yet as there are a couple elements that I

> > still notice, although ever so slightly. The terrific part of NFB is

> > that although there may be an " ebb & flow " of reactions during

> > treatment as improvements are made … improvements realized are

> > permanent. Even more promising are studies that have shown that even

> > when NFB sessions are stopped, subtle improvements are still recognized

> > months later. Our son we would put at an 80% improvement level.

> > Possibly we could rate him higher yet on that scale but with people that

> > age it can be difficult to determine if some actions are unrelated to

> > this condition and rather just the normal teenager hormones to be dealt

> > with. He also started with more profound " recognized " and

> > typical OCD symptoms than what I did.

> >

> >

> >

> > In addition, my higher rating of improvement can be attributed to my

> > having a total of 112 NFB sessions so far versus my son's 64

> > sessions. With saying that I want to stress at this point not to let

> > the number of sessions and the related costs deter you. I pointed out

> > in my original post that I paid $4,100 for my initial 40 sessions along

> > with a beginning and ending QEEG. At the end of the initial 40

> > sessions, both for myself as well as my son, my wife and I agreed that

> > both of us had achieved a 60-70% improvement for our Misophonia versus

> > our pre-Neurofeedback condition. Imagine how different your life would

> > be, or that of your child, if you/he/she were rid of 60-70% of the

> > triggers and anger … actually more on the anger as most of that

> > leaves completely and is the most pronounced effect first realized.

> > Although our lives would have been so much more enjoyable even if we had

> > stopped after the initial 40 sessions, we made the decision to strive

> > for perfection and be cured completely. My son has never complained one

> > time with going to the 64 sessions as he continues to realize the subtle

> > improvements he continues to make.

> >

> > Our NFB practitioner will be starting with the use of a program called

> > the LORETA in another 3 weeks. The LORETA, which he will incorporate in

> > every third session, is like a mini-QEEG, a functional imaging technique

> > that looks directly at brain activity in " real time. " The data

> > to date is showing the use of the LORETA enables one to treat at a more

> > successful rate … at a quicker pace … and for more conditions!

> > Naturally we are excited about this as we feel that he will be able to

> > identify and treat those last stubborn areas of our brains.

> >

> > Over the last several months I have compiled nearly 80 pages of a

> > journal chronicling the progress we have achieved thru Neurofeedback. I

> > am working on condensing this material to a version that I can post at a

> > later date so others may identify with situations we have encountered

> > with triggers that have resulted in " successes " with a

> > non-reaction and no anger present. In addition, our Doctor will be

> > putting together a report for the Neurofeedback Journal and profession,

> > along with my input from a patient's perspective, regarding

> > NFB's success with treating Misophonia.

> >

> > I am going to add a disclaimer to my post. All brains are different,

> > and some people may not respond favorably to Neurofeedback, there are no

> > guarantees. But, we are not the only people with this condition that

> > have experienced success with Neurofeedback. My Doctor recently learned

> > of an NFB practitioner in Texas that had posted on a professional online

> > forum asking if anyone had experience in treating Misophonia. This

> > practitioner initially started seeing someone for ADD, but then this

> > patient's parents educated him on the Misophonia their child had.

> > Some time had elapsed and he posted a second time telling that he was

> > having success with diminishing the Misophonia triggers.

> >

> > For those of you that contact a Neurofeedback practitioner and proceed

> > with sessions, I will offer this advice … Do not monitor all of the

> > posts on this site closely. I say this because of the number of posts

> > where people are venting and telling of new and different triggers that

> > outrage them. There have been arguments on this site in the past as to

> > if the venting is helpful. I am not entering into that argument but

> > rather just giving you advice on an observation that my Neurofeedback

> > Doctor, my wife, and I all agree on. We feel there is the possibility

> > of one developing new triggers they have not experienced before when

> > reading of them thru the venting on this site. We base this on the fact

> > that neither my wife, nor my Doctor, ever realized the manner in which

> > people chew gum until coming in contact with me. It was simply

> > something they were not conscience of. But now they both notice if

> > people chew their gum or food in an obnoxious manner. It does not cause

> > them to get angry, but they do notice it now as readily as a Misophonia

> > victim does. For this reason I scan the headlines on this site but do

> > not read any postings that appear to be from someone venting or telling

> > of new triggers.

> >

> > I intend to stay anonymous on this site as well as in any subsequent

> > article in the NFB Journal. If it was just me I would have no issue

> > with using my real name. But I will not take the chance of subjecting

> > my son to ridicule from his peers if our identification were known and

> > talked of openly on this site, on a Facebook page, or in the media.

> > Please respect this. We all know that if we told acquaintances we had

> > ADD … they would have compassion for us. If we told others that we

> > had depression, or bipolar … we would be shown compassion. In fact

> > if we say, as my Doctor and I maintain, " I have an element of

> > OCD " … we will be looked upon with compassion. But to tell

> > someone of Misophonia and its triggers & anger … will most often

> > bring us ridicule and mean spirited provoking.

> >

> > We live in Eastern Iowa so those of you that are close in proximity may

> > send an email to my Yahoo Mail account and I will respond with the name

> > of my Neurofeedback practitioner. For everyone else, please respect the

> > fact that my Doctor cannot accept the several calls that could inundate

> > him from those looking for referrals. He will not make referrals but

> > would be glad to accept a phone call or an email from NFB practitioners

> > in regards to protocol. My Doctor strongly suggests that one go to the

> > website www.bcia.org <http://www.bcia.org/> to find a practitioner in

> > your area and to make sure that they are specifically accredited for

> > " BCN. " Another valuable website is the International Society

> > for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> .

> > At this time the practitioner listing section of this site is down so

> > check back.

> >

>

[Guest guest]

mine is going to cost around $3000 since I'm getting the QEEG brain mapping done To: "Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 5:13

PM Subject: Re: Re: The CURE ... Neurofeedback

I have just booked a consult with a NFB practitioner/neuro and psychotherapist later this week, too. She said that she has experience with tinnitus, but not as the primary cause of treatment. I hope this will be the first step towards treatment for me. Can anyone tell me about how much NFB therapy costs?Thanks - To:

"Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 10:10 AM Subject: Re: Re: The CURE ... Neurofeedback

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity

Sent: Sunday, February 19, 2012 5:28 PM Subject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder." Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition. First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety." The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized

symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror,

and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB.

And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

any tips on how to get it (NFB) covered by insurance? From what I understand misophonia/4S is not recognized yet in medical journals??? Can it be covered under anxiety treatment or OCD?

mine is going to cost around $3000 since I'm getting the QEEG brain mapping done To: "Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 5:13

PM Subject: Re: Re: The CURE ... Neurofeedback

I have just booked a consult with a NFB practitioner/neuro and psychotherapist later this week, too. She said that she has experience with tinnitus, but not as the primary cause of treatment. I hope this will be the first step towards treatment for me. Can anyone tell me about how much NFB therapy costs?Thanks - To:

"Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 10:10 AM Subject: Re: Re: The CURE ... Neurofeedback

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity

Sent: Sunday, February 19, 2012 5:28 PM Subject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder." Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition. First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety." The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized

symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror,

and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB.

And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

Or Hypercusis the it's a medical ailment being treated by mental health, some insurance has greater coverage for that Sent from my iPhone

any tips on how to get it (NFB) covered by insurance? From what I understand misophonia/4S is not recognized yet in medical journals??? Can it be covered under anxiety treatment or OCD?

mine is going to cost around $3000 since I'm getting the QEEG brain mapping done To: "Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 5:13

PM Subject: Re: Re: The CURE ... Neurofeedback

I have just booked a consult with a NFB practitioner/neuro and psychotherapist later this week, too. She said that she has experience with tinnitus, but not as the primary cause of treatment. I hope this will be the first step towards treatment for me. Can anyone tell me about how much NFB therapy costs?Thanks - To:

"Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 10:10 AM Subject: Re: Re: The CURE ... Neurofeedback

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity

Sent: Sunday, February 19, 2012 5:28 PM Subject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder." Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition. First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety." The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized

symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror,

and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB.

And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

If you use LENS then you don't necessarily need to do that mapping which will save lots. Maybe you can ask about it. Sent from my iPhone

mine is going to cost around $3000 since I'm getting the QEEG brain mapping done To: "Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 5:13

PM Subject: Re: Re: The CURE ... Neurofeedback

I have just booked a consult with a NFB practitioner/neuro and psychotherapist later this week, too. She said that she has experience with tinnitus, but not as the primary cause of treatment. I hope this will be the first step towards treatment for me. Can anyone tell me about how much NFB therapy costs?Thanks - To:

"Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 10:10 AM Subject: Re: Re: The CURE ... Neurofeedback

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity

Sent: Sunday, February 19, 2012 5:28 PM Subject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder." Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition. First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety." The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized

symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror,

and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB.

And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

In UK, health care is different, but docs know exactly what to say on forms to make sure you are covered. I imagine US docs are similarLizSent from my iPad

Or Hypercusis the it's a medical ailment being treated by mental health, some insurance has greater coverage for that Sent from my iPhone

any tips on how to get it (NFB) covered by insurance? From what I understand misophonia/4S is not recognized yet in medical journals??? Can it be covered under anxiety treatment or OCD?

mine is going to cost around $3000 since I'm getting the QEEG brain mapping done To: "Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 5:13

PM Subject: Re: Re: The CURE ... Neurofeedback

I have just booked a consult with a NFB practitioner/neuro and psychotherapist later this week, too. She said that she has experience with tinnitus, but not as the primary cause of treatment. I hope this will be the first step towards treatment for me. Can anyone tell me about how much NFB therapy costs?Thanks - To:

"Soundsensitivity " <Soundsensitivity > Sent: Monday, February 20, 2012 10:10 AM Subject: Re: Re: The CURE ... Neurofeedback

For the first time I feel hope! I called a neurofeedback practitioner in my area who is accredited for "BCN" and she is going to do a free consultation with me today! THANK YOU SO MUCH FOR SHARING YOUR STORY!!!! To: Soundsensitivity

Sent: Sunday, February 19, 2012 5:28 PM Subject: Re: The CURE ... Neurofeedback

Misophonia … a misnomer I have posted in the past in regards to the success my son and I have experienced in eliminating the condition referred to as "Misophonia" with Neurofeedback (NFB). It would certainly be my suggestion that sufferers try this approach as it has been extremely successful for my son and me. The reason I am submitting this post is due to the repeated pleas for help from several on this site in regards to wanting research and clinical trials. If it is research that is wanted, then it should serve to expedite those researchers toward their conclusion if they examine other lines of thought, and evidence, rather than the generally accepted assumptions. I was prompted to write this as I viewed a recent article that was linked to on this site and written by Dr. Latimer, a psychiatrist and president of Okanagan

Clinical Trials. I agree with those of you that commented in appreciation for Dr. Latimer's respectful tone and attitude toward this condition. But I do take exception and disagree with his following statement:

"Until now, many people experiencing this sensitivity have been mistakenly diagnosed with other problems when presenting their specific symptoms—they have been told they have a phobia or obsessive compulsive disorder, mania or an anxiety disorder." Most will agree that they really don't care what this condition is called, or what causes it, but rather just want the means to eliminate it from their lives. But, I point out the above paragraph as I feel it is wrong to rule out obsessive compulsive disorder (OCD) as "mistakenly diagnosed," if the intent is to assist the direction of research, or in following up with effective means of eliminating this condition. First of all … I will refer to this condition as "Misophonia" as that is the term recognized, even though I believe that term is a misnomer. In my opinion, I think that it is a mistaken belief that this is an audiological problem. While there is little doubt that certain sounds are the primary triggers for most sufferers, there are many non-sound triggers present also. So many times those defending this as audiological will claim that visual triggers are the result of the psychological aftermath of associating those visuals with offending sounds. A corroborating example of that would be a personal anecdote of mine; In the past, I could sit in a football stadium of 70,000 cheering fans with no problem, but suddenly be triggered if I saw someone chewing gum 50 yards away

thru my binoculars. So was I being triggered due to associating that visual with the chewing sounds that had triggered me before? This I can understand, and could agree to this theory with associated visuals that have no sound, such as my football stadium example, with a person merely putting their hand to their mouth, or with someone biting their fingernails. I had these triggers as well as most of the eating & sound triggers that are food related, as well as the worst … gum chewing. But, there are so many visual triggers that are not related to sound in any manner that many of us have such as repetitive foot or body movements, or when one twirls their hair … how would these be hearing related?

One of my triggers was the manner in which someone may hold their hands, or simply rest their hands on their lap. Another example would be that I sometimes "talk with my hands" when explaining something and my son could be triggered by the repetitive movement of my hands. I would ask someone to give me a plausible explanation of how these are hearing related. Another trigger for me was the manner in which my wife would swing her arms when we would take walks. It always seemed to me as if she was swinging her arms more than what was normal or needed, but when I honestly evaluated her arms swinging with my own or others walking by, there was no difference, yet it was a trigger to me with all the same apprehension, anxiety, and anger present. Again, please … I would ask an Audiologist, others in the medical or

scientific community, or a "Misophonia" sufferer, to explain to me how that can be hearing related.

You may have read my post on January 7th … message # 24453. Please re-read to familiarize yourself with how Neurofeedback is curing this condition for my son and me. Neurofeedback isn't fixing our hearing … it is fixing our brains. I wrote that both my NFB practitioner and I feel that this condition is an element of OCD. Some on the site are quick to dispute this as they do not feel they exhibit any of the signs of OCD. When a person thinks of OCD they generally think of repeated & obsessive hand washing, counting, checking, & following various routines, but OCD is also an obsession with thoughts. To these people I would ask, "If you have been willing to believe that "Misophonia" is a mysterious physiological

condition whereas the brain improperly processes sounds, that has yet to be fully understood & recognized … then why wouldn't you believe that it just might be a subset of OCD, also a faulty brain processing related condition, that has yet to be fully understood and recognized?"

OCD has been described as the following:

"Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions). OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization. Obsessions are thoughts that recur and persist despite efforts to ignore or confront them. People with OCD frequently perform tasks, or compulsions, to seek relief from obsession-related anxiety." The various triggers that "Misophonia" sufferers experience are obsessions. A key word hi-lighted in the above definition is frequently (many times, often, but not always). OCD may have its obsessive element without always being accompanied by a recognized compulsion. Or, one could also view the fight or flight reaction as the compulsion (feel driven to do something). The need to mimic those offending sounds or visuals can also be, as in the definition above, "a frequent task, or compulsion, to seek relief from the obsession-related anxiety". So although a "Misophonia" sufferer may not possess or exhibit the typical & recognized

symptoms of OCD … the trigger obsessions can certainly be an element or a subset of OCD.

These obsessions come down to the word "focus." I could not take my focus off of that person chewing gum 50 yards away. I could not take my focus off of my wife swinging her arms. My son could not take his focus off of the movement of my hands when I was talking. Misophonia sufferers cannot take their focus off of the various obsessions that trigger them!

Both my son and I have lived with OCD where we have/had several obsessions where we are driven uncontrollably to recognized compulsions. Just one of mine was where I had an obsession with adjusting the rear-view mirror when driving, whereas I felt driven to do something in continually pressing the knuckle of my index finger hard against the mirror. I wasn't really adjusting the mirror but my compulsion was to repeatedly press my knuckle against it. An important distinction to be made is that although I did not have any anger associated with my mirror obsession, my son did have the same "Misophonia" type of anger & rage with his recognized OCD obsession of not wanting cupboards or doors being left partially open. Again, I could not take my focus off of the need to press my knuckle against the mirror,

and my son could not take his focus off of his obsessions with the cupboards or doors being open. I no longer have this obsession thanks to Neurofeedback, and the cupboard/door obsession with my son is nearly gone also. I point out these examples, two of several I could relate, to show that I certainly understand OCD. And I certainly understand as a subset or an element of OCD, that my various "Misophonia" triggers (my obsessions) with gum chewing, food related sounds & visuals, as well as non-sound triggers (my obsessions) such as repetitive arm movements or position of one's hands made me feel driven to do so something (my compulsions) with fight or flight, and frequently mimicking. As I stated, I no longer have this obsession with the mirror, as well as several other former obsessions, thanks to NFB.

And as I pointed out at length in my post of message #24453, I no longer have the anger, the anxiety, or reactions, the fight or flight with the former "Misophonia" triggers, thanks to NFB. Is it so hard to not understand that since both were cured with Neurofeedback that they are indeed related?

>> > > > The CURE … Neurofeedback> > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback> was proving to be the "cure" for me in regards to this dreaded> condition, referred to as Misophonia. I wrote of some extraordinary> "successes" I was having at the time, and I wrote, "I do not> know if this is the "cure" for all others on this site. I do> know what it has done for me so far … it's given me the first> real hope in defeating this after 45 years of anguish." You can> read my original post if you go to where it says message # at the top of> this page, and put in 20318 (do not use a comma in the number). The> positive progress I had recorded up to that time

was after 24 sessions> with a Neurofeedback (NFB) practitioner, and I told of our plans to> start our 15 year-old son with NFB who also has Misophonia. To my> disbelief, there was response from just two people on this site. That> is why I decided to post under the heading "The Cure" in hopes> of gaining everyone's attention.> > Neurofeedback has worked for both my son and me. I will stress that I> suffered with this Misophonia condition for 45 years and to a degree> just as strong as relayed by any of the messages posted on this site. > Both my son and I have also dealt with various symptoms of OCD, which> both my NFB Doctor and I feel that this condition is an element of. I> have read past arguments of those that don't consider this OCD as> they don't exhibit the "recognized" or usual symptoms, or> have an official diagnosis of OCD thru the "main

stream"> physicians. Since I have not heard of others being treated successfully> thru other means, I believe my NFB Doctor and I have earned the> credibility in referring to this condition as an element of OCD.> > If there were a rating system developed, both my wife and I would put me> at a strong 90 to 95% improvement from where I was several months ago. > I would be at the 100% level as far as the total absence of the anger> that is instantaneously present when Misophonia sufferers encounter a> "trigger." With some of the "successes" I am enjoying> my wife tells me that, "You are completely cured." But I> don't accept that quite yet as there are a couple elements that I> still notice, although ever so slightly. The terrific part of NFB is> that although there may be an "ebb & flow" of reactions during> treatment as improvements are made …

improvements realized are> permanent. Even more promising are studies that have shown that even> when NFB sessions are stopped, subtle improvements are still recognized> months later. Our son we would put at an 80% improvement level. > Possibly we could rate him higher yet on that scale but with people that> age it can be difficult to determine if some actions are unrelated to> this condition and rather just the normal teenager hormones to be dealt> with. He also started with more profound "recognized" and> typical OCD symptoms than what I did.> > > > In addition, my higher rating of improvement can be attributed to my> having a total of 112 NFB sessions so far versus my son's 64> sessions. With saying that I want to stress at this point not to let> the number of sessions and the related costs deter you. I pointed out> in my original post that

I paid $4,100 for my initial 40 sessions along> with a beginning and ending QEEG. At the end of the initial 40> sessions, both for myself as well as my son, my wife and I agreed that> both of us had achieved a 60-70% improvement for our Misophonia versus> our pre-Neurofeedback condition. Imagine how different your life would> be, or that of your child, if you/he/she were rid of 60-70% of the> triggers and anger … actually more on the anger as most of that> leaves completely and is the most pronounced effect first realized. > Although our lives would have been so much more enjoyable even if we had> stopped after the initial 40 sessions, we made the decision to strive> for perfection and be cured completely. My son has never complained one> time with going to the 64 sessions as he continues to realize the subtle> improvements he continues to make.> > Our

NFB practitioner will be starting with the use of a program called> the LORETA in another 3 weeks. The LORETA, which he will incorporate in> every third session, is like a mini-QEEG, a functional imaging technique> that looks directly at brain activity in "real time." The data> to date is showing the use of the LORETA enables one to treat at a more> successful rate … at a quicker pace … and for more conditions! > Naturally we are excited about this as we feel that he will be able to> identify and treat those last stubborn areas of our brains.> > Over the last several months I have compiled nearly 80 pages of a> journal chronicling the progress we have achieved thru Neurofeedback. I> am working on condensing this material to a version that I can post at a> later date so others may identify with situations we have encountered> with triggers that have resulted in

"successes" with a> non-reaction and no anger present. In addition, our Doctor will be> putting together a report for the Neurofeedback Journal and profession,> along with my input from a patient's perspective, regarding> NFB's success with treating Misophonia.> > I am going to add a disclaimer to my post. All brains are different,> and some people may not respond favorably to Neurofeedback, there are no> guarantees. But, we are not the only people with this condition that> have experienced success with Neurofeedback. My Doctor recently learned> of an NFB practitioner in Texas that had posted on a professional online> forum asking if anyone had experience in treating Misophonia. This> practitioner initially started seeing someone for ADD, but then this> patient's parents educated him on the Misophonia their child had. > Some time had elapsed and he posted a

second time telling that he was> having success with diminishing the Misophonia triggers.> > For those of you that contact a Neurofeedback practitioner and proceed> with sessions, I will offer this advice … Do not monitor all of the> posts on this site closely. I say this because of the number of posts> where people are venting and telling of new and different triggers that> outrage them. There have been arguments on this site in the past as to> if the venting is helpful. I am not entering into that argument but> rather just giving you advice on an observation that my Neurofeedback> Doctor, my wife, and I all agree on. We feel there is the possibility> of one developing new triggers they have not experienced before when> reading of them thru the venting on this site. We base this on the fact> that neither my wife, nor my Doctor, ever realized the manner in

which> people chew gum until coming in contact with me. It was simply> something they were not conscience of. But now they both notice if> people chew their gum or food in an obnoxious manner. It does not cause> them to get angry, but they do notice it now as readily as a Misophonia> victim does. For this reason I scan the headlines on this site but do> not read any postings that appear to be from someone venting or telling> of new triggers.> > I intend to stay anonymous on this site as well as in any subsequent> article in the NFB Journal. If it was just me I would have no issue> with using my real name. But I will not take the chance of subjecting> my son to ridicule from his peers if our identification were known and> talked of openly on this site, on a Facebook page, or in the media. > Please respect this. We all know that if we told acquaintances we

had> ADD … they would have compassion for us. If we told others that we> had depression, or bipolar … we would be shown compassion. In fact> if we say, as my Doctor and I maintain, "I have an element of> OCD" … we will be looked upon with compassion. But to tell> someone of Misophonia and its triggers & anger … will most often> bring us ridicule and mean spirited provoking.> > We live in Eastern Iowa so those of you that are close in proximity may> send an email to my Yahoo Mail account and I will respond with the name> of my Neurofeedback practitioner. For everyone else, please respect the> fact that my Doctor cannot accept the several calls that could inundate> him from those looking for referrals. He will not make referrals but> would be glad to accept a phone call or an email from NFB practitioners> in regards to protocol. My Doctor strongly

suggests that one go to the> website www.bcia.org <http://www.bcia.org/> to find a practitioner in> your area and to make sure that they are specifically accredited for> "BCN." Another valuable website is the International Society> for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> . > At this time the practitioner listing section of this site is down so> check back.>

[Guest guest]

My daughter's doctor is entering it as OUT-PATIENT, OUT-OF-NETWORK

PSYCHOTHERAPY. Which means our insurance covers about $45.00 towards each

session. Our portion, we pay as we go. I never had to put any money out

upfront. If I ever added what it was going to cost it probably would have

scared me off since our funds are very low and I live paycheck to paycheck. She

even adjusted the rate for us which I am forever grateful. We pay weekly and she

only goes once a week.

> > >

> > >

> > >

> > >

> > > The CURE … Neurofeedback

> > >

> > > Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback

> > > was proving to be the " cure " for me in regards to this dreaded

> > > condition, referred to as Misophonia. I wrote of some extraordinary

> > > " successes " I was having at the time, and I wrote, " I do not

> > > know if this is the " cure " for all others on this site. I do

> > > know what it has done for me so far … it's given me the first

> > > real hope in defeating this after 45 years of anguish. " You can

> > > read my original post if you go to where it says message # at the top of

> > > this page, and put in 20318 (do not use a comma in the number). The

> > > positive progress I had recorded up to that time was after 24 sessions

> > > with a Neurofeedback (NFB) practitioner, and I told of our plans to

> > > start our 15 year-old son with NFB who also has Misophonia. To my

> > > disbelief, there was response from just two people on this site. That

> > > is why I decided to post under the heading " The Cure " in hopes

> > > of gaining everyone's attention.

> > >

> > > Neurofeedback has worked for both my son and me. I will stress that I

> > > suffered with this Misophonia condition for 45 years and to a degree

> > > just as strong as relayed by any of the messages posted on this site.

> > > Both my son and I have also dealt with various symptoms of OCD, which

> > > both my NFB Doctor and I feel that this condition is an element of. I

> > > have read past arguments of those that don't consider this OCD as

> > > they don't exhibit the " recognized " or usual symptoms, or

> > > have an official diagnosis of OCD thru the " main stream "

> > > physicians. Since I have not heard of others being treated successfully

> > > thru other means, I believe my NFB Doctor and I have earned the

> > > credibility in referring to this condition as an element of OCD.

> > >

> > > If there were a rating system developed, both my wife and I would put me

> > > at a strong 90 to 95% improvement from where I was several months ago.

> > > I would be at the 100% level as far as the total absence of the anger

> > > that is instantaneously present when Misophonia sufferers encounter a

> > > " trigger. " With some of the " successes " I am enjoying

> > > my wife tells me that, " You are completely cured. " But I

> > > don't accept that quite yet as there are a couple elements that I

> > > still notice, although ever so slightly. The terrific part of NFB is

> > > that although there may be an " ebb & flow " of reactions during

> > > treatment as improvements are made … improvements realized are

> > > permanent. Even more promising are studies that have shown that even

> > > when NFB sessions are stopped, subtle improvements are still recognized

> > > months later. Our son we would put at an 80% improvement level.

> > > Possibly we could rate him higher yet on that scale but with people that

> > > age it can be difficult to determine if some actions are unrelated to

> > > this condition and rather just the normal teenager hormones to be dealt

> > > with. He also started with more profound " recognized " and

> > > typical OCD symptoms than what I did.

> > >

> > >

> > >

> > > In addition, my higher rating of improvement can be attributed to my

> > > having a total of 112 NFB sessions so far versus my son's 64

> > > sessions. With saying that I want to stress at this point not to let

> > > the number of sessions and the related costs deter you. I pointed out

> > > in my original post that I paid $4,100 for my initial 40 sessions along

> > > with a beginning and ending QEEG. At the end of the initial 40

> > > sessions, both for myself as well as my son, my wife and I agreed that

> > > both of us had achieved a 60-70% improvement for our Misophonia versus

> > > our pre-Neurofeedback condition. Imagine how different your life would

> > > be, or that of your child, if you/he/she were rid of 60-70% of the

> > > triggers and anger … actually more on the anger as most of that

> > > leaves completely and is the most pronounced effect first realized.

> > > Although our lives would have been so much more enjoyable even if we had

> > > stopped after the initial 40 sessions, we made the decision to strive

> > > for perfection and be cured completely. My son has never complained one

> > > time with going to the 64 sessions as he continues to realize the subtle

> > > improvements he continues to make.

> > >

> > > Our NFB practitioner will be starting with the use of a program called

> > > the LORETA in another 3 weeks. The LORETA, which he will incorporate in

> > > every third session, is like a mini-QEEG, a functional imaging technique

> > > that looks directly at brain activity in " real time. " The data

> > > to date is showing the use of the LORETA enables one to treat at a more

> > > successful rate … at a quicker pace … and for more conditions!

> > > Naturally we are excited about this as we feel that he will be able to

> > > identify and treat those last stubborn areas of our brains.

> > >

> > > Over the last several months I have compiled nearly 80 pages of a

> > > journal chronicling the progress we have achieved thru Neurofeedback. I

> > > am working on condensing this material to a version that I can post at a

> > > later date so others may identify with situations we have encountered

> > > with triggers that have resulted in " successes " with a

> > > non-reaction and no anger present. In addition, our Doctor will be

> > > putting together a report for the Neurofeedback Journal and profession,

> > > along with my input from a patient's perspective, regarding

> > > NFB's success with treating Misophonia.

> > >

> > > I am going to add a disclaimer to my post. All brains are different,

> > > and some people may not respond favorably to Neurofeedback, there are no

> > > guarantees. But, we are not the only people with this condition that

> > > have experienced success with Neurofeedback. My Doctor recently learned

> > > of an NFB practitioner in Texas that had posted on a professional online

> > > forum asking if anyone had experience in treating Misophonia. This

> > > practitioner initially started seeing someone for ADD, but then this

> > > patient's parents educated him on the Misophonia their child had.

> > > Some time had elapsed and he posted a second time telling that he was

> > > having success with diminishing the Misophonia triggers.

> > >

> > > For those of you that contact a Neurofeedback practitioner and proceed

> > > with sessions, I will offer this advice … Do not monitor all of the

> > > posts on this site closely. I say this because of the number of posts

> > > where people are venting and telling of new and different triggers that

> > > outrage them. There have been arguments on this site in the past as to

> > > if the venting is helpful. I am not entering into that argument but

> > > rather just giving you advice on an observation that my Neurofeedback

> > > Doctor, my wife, and I all agree on. We feel there is the possibility

> > > of one developing new triggers they have not experienced before when

> > > reading of them thru the venting on this site. We base this on the fact

> > > that neither my wife, nor my Doctor, ever realized the manner in which

> > > people chew gum until coming in contact with me. It was simply

> > > something they were not conscience of. But now they both notice if

> > > people chew their gum or food in an obnoxious manner. It does not cause

> > > them to get angry, but they do notice it now as readily as a Misophonia

> > > victim does. For this reason I scan the headlines on this site but do

> > > not read any postings that appear to be from someone venting or telling

> > > of new triggers.

> > >

> > > I intend to stay anonymous on this site as well as in any subsequent

> > > article in the NFB Journal. If it was just me I would have no issue

> > > with using my real name. But I will not take the chance of subjecting

> > > my son to ridicule from his peers if our identification were known and

> > > talked of openly on this site, on a Facebook page, or in the media.

> > > Please respect this. We all know that if we told acquaintances we had

> > > ADD … they would have compassion for us. If we told others that we

> > > had depression, or bipolar … we would be shown compassion. In fact

> > > if we say, as my Doctor and I maintain, " I have an element of

> > > OCD " … we will be looked upon with compassion. But to tell

> > > someone of Misophonia and its triggers & anger … will most often

> > > bring us ridicule and mean spirited provoking.

> > >

> > > We live in Eastern Iowa so those of you that are close in proximity may

> > > send an email to my Yahoo Mail account and I will respond with the name

> > > of my Neurofeedback practitioner. For everyone else, please respect the

> > > fact that my Doctor cannot accept the several calls that could inundate

> > > him from those looking for referrals. He will not make referrals but

> > > would be glad to accept a phone call or an email from NFB practitioners

> > > in regards to protocol. My Doctor strongly suggests that one go to the

> > > website www.bcia.org <http://www.bcia.org/> to find a practitioner in

> > > your area and to make sure that they are specifically accredited for

> > > " BCN. " Another valuable website is the International Society

> > > for Neurofeedback & Research at www.isnr.org <http://www.isnr.org/> .

> > > At this time the practitioner listing section of this site is down so

> > > check back.

> > >

> >

> >

> >

> >

> >

> >

> >

> >

>