Re: The CURE ... Neurofeedback

[Guest guest]

I've had *so* much fun trying out the exposure and response prevention method :-p(on my own initiative, not in the care of a trained CBT therapist).I've found it usually does nothing but heighten my sensitivity and make me want to go into a cave of sound isolation! To:

Soundsensitivity Sent: Monday, February 20, 2012 10:53 AM Subject: RE: Re: The CURE ... Neurofeedback

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]

Supposedly exposure and response prevention *does* make things worse before they get better, so heightened sensitivity is to be expected, and if someone gives up at that point, then things do end up the same or worse.  However, the claim is that if you don’t give up and keep hanging in there for a longer time, the anxiety (including fear, rage) will eventually lessen until you can handle the “trigger†(or avoid a compulsion) without the anxiety (or a lot less anxiety).  This has actually worked for many OCD issues ( & phobias), but I don’t know if anyone has been able to hang in there long enough to see if it would work with misophonia – it would be extremely difficult, especially not knowing for sure if it would ultimately work. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Misophonia SuffererSent: Thursday, February 23, 2012 10:14 AMTo: Soundsensitivity Subject: Re: Re: The CURE ... Neurofeedback I've had *so* much fun trying out the exposure and response prevention method :-p(on my own initiative, not in the care of a trained CBT therapist). I've found it usually does nothing but heighten my sensitivity and make me want to go into a cave of sound isolation! To: Soundsensitivity Sent: Monday, February 20, 2012 10:53 AMSubject: RE: Re: The CURE ... Neurofeedback 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]

What is Zengar?  I think she is going back in the summer when she has more time.  The first 20 visits she had seem to help, but we were doing so many different thinks at the time, I was sure exactly what “stuck.†From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of wouldlovetofindacurefor4sSent: Tuesday, February 21, 2012 9:32 PMTo: Soundsensitivity Subject: Re: The CURE ... Neurofeedback 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]

Thanks so much- I'll ask about LENS:) To: "Soundsensitivity " <Soundsensitivity > Sent: Wednesday, February 22, 2012 10:27 PM Subject: Re: Re: The CURE ... Neurofeedback

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]

----- Forwarded Message ----- To: Soundsensitivity Sent: Sunday, January 8, 2012 8:59 AM Subject: Re: The CURE ... Neurofeedback

Kate,

You do not need a referral from a primary physician. In fact, some "main stream" physicians are not going to buy into the importance of Neurofeedback for several reasons: Lack of understanding and out of the realm of their training … is not supported by the powerful pharmaceutical industry … and NFB is not covered by insurance.

Misophonia, we know, is not understood and has not been heard of by most in the medical / health profession. In fact my NFB practitioner had not heard of this condition until I told him of its characteristics. It can be very difficult and embarrassing to explain some of the triggers to others so I would take the time to list your triggers & the extent of the associated anger, copy & paste a handful of previous posts from this site, and include a copy of my post.

You can also refer them to my NFB practitioner, Dr. Randall Lyle, in Cedar Rapids, Iowa. Dr. Lyle is well known and highly regarded, and is the current President of the International Society for Neurofeedback & Research … www.isnr.org. In releasing Dr. Lyle's name I ask once again for everyone to please respect the fact that Dr. Lyle does not have the time to accept and answer phone calls and emails from Misophonia sufferers, as there is nothing to accomplish by direct contact. What will be advantageous for you is if your NFB practitioner contacts Dr. Lyle so that he can correspond with them regarding his protocol and findings.

Dr. Lyle is a strong proponent of committing oneself to a minimum of 40 sessions of Neurofeedback. Our family has been fortunate in that we do not have to travel far to attend our sessions. But unless you are within easy driving distance of Cedar Rapids, or are open to staying at an extended stay motel in Cedar Rapids for 3 months to complete the 40 sessions, the help Dr. Lyle can offer you is to communicate with your NFB practitioner.

>

[Guest guest]

----- Forwarded Message ----- To: Soundsensitivity Sent: Sunday, January 8, 2012 8:59 AM Subject: Re: The CURE ... Neurofeedback

Kate,

You do not need a referral from a primary physician. In fact, some "main stream" physicians are not going to buy into the importance of Neurofeedback for several reasons: Lack of understanding and out of the realm of their training … is not supported by the powerful pharmaceutical industry … and NFB is not covered by insurance.

Misophonia, we know, is not understood and has not been heard of by most in the medical / health profession. In fact my NFB practitioner had not heard of this condition until I told him of its characteristics. It can be very difficult and embarrassing to explain some of the triggers to others so I would take the time to list your triggers & the extent of the associated anger, copy & paste a handful of previous posts from this site, and include a copy of my post.

You can also refer them to my NFB practitioner, Dr. Randall Lyle, in Cedar Rapids, Iowa. Dr. Lyle is well known and highly regarded, and is the current President of the International Society for Neurofeedback & Research … www.isnr.org. In releasing Dr. Lyle's name I ask once again for everyone to please respect the fact that Dr. Lyle does not have the time to accept and answer phone calls and emails from Misophonia sufferers, as there is nothing to accomplish by direct contact. What will be advantageous for you is if your NFB practitioner contacts Dr. Lyle so that he can correspond with them regarding his protocol and findings.

Dr. Lyle is a strong proponent of committing oneself to a minimum of 40 sessions of Neurofeedback. Our family has been fortunate in that we do not have to travel far to attend our sessions. But unless you are within easy driving distance of Cedar Rapids, or are open to staying at an extended stay motel in Cedar Rapids for 3 months to complete the 40 sessions, the help Dr. Lyle can offer you is to communicate with your NFB practitioner.

>

[Guest guest]

----- Forwarded Message ----- To: Soundsensitivity Sent: Monday, January 9, 2012 12:50 PM Subject: Re: The CURE ... Neurofeedback

Adah,

In answer to your questions … I do not know what the MAS is, but if it has anything to do with the anticipation, reaction, and anger associated with this condition, then I would rate myself as following: If the scale is from 0 to 10 with the worst possible being 10, then I would have certainly been a 10 on all three elements before taking Neurofeedback.

Now, I would give myself these scores:

Anticipation / anxiety 1-2reaction / anxiety 1anger 0

In regards to your question regarding the tune-up: No, at least in the case of adults, although improving the overall functioning of the brain will be obtained by subsequent sessions, there is no proof or studies showing tune-up or maintenance sessions are needed to maintain improvements. To the contrary, I will repeat what I posted earlier, "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." An exception to this is possible in regards to those in adolescence as the brain is changing rapidly and significantly during those years. For example, studies have shown that in the case of pre-puberty children treated with NFB for ADD, additional sessions may be needed as they go thru adolescence. As a side note, since ADD is a very prevalent condition, I will mention that ADD is a condition that Neurofeedback has been very successful in treating.

I am very sorry that Neurofeedback did not work for you in the past. As I put in my earlier post, "All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees." Back when I was first realizing the successes and improvements with NFB I was so confident and sure that it would certainly work for my son's Misophonia, as he is like me in nearly every respect, and I feel there can be a genetic component to this. The results of his QEEG caused us some anxiety and concern because to the contrary … his brain was quite different than mine. So we are beyond thrilled with what we have rated as an 80% improvement for him at this point. With that said, I hope you realize that NFB may yet work for you as it may have been

the failure of your particular NFB practitioner or the protocol they used. For example, I have gone to Chiropractors (not for Misophonia) over the years that have not been able to give me the relief or help I was looking for. But, I have a Chiropractor now that uses the Activator device and I have immediate relief with a single appointment. It wasn't that Chiropractic wouldn't work for me … I just needed a different practitioner and protocol. I hope you will keep open the possibility of using Neurofeedback again.

> > > > > > > > > > > > > > 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 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 . At this time the practitioner

listing section of this site is down so check back. > > > > > > > > >> >>

[Guest guest]

----- Forwarded Message ----- To: Soundsensitivity Sent: Wednesday, January 11, 2012 10:54 AM Subject: Re: The CURE ... Neurofeedback

, In answer to your question, and it was a good question … yes, there is a difference between Biofeedback and Neurofeedback. Biofeedback monitors a body function such as breathing, heart rate, blood pressure, skin temperature, and allows one to regulate their function thru relaxation and mental images. Biofeedback has been used to decrease many symptoms of stress-related diseases. Neurofeedback (NFB), also called EEG Biofeedback, is actually a form of biofeedback designed to teach people how to control and retrain their brain waves. The focus of NFB is on feeding back information regulating brain activity using EEG, a record of the electrical activity of the brain. It needs to be made clear and understood that no electrical activity is administered to the brain, but rather the EEG only records electrical activity coming from the brain. I stress: The equipment does not send electricity into you … it only reads the tiny electrical signals from your brain thru the scalp. How it works, copied from my NFB practitioner's website: Sensors are placed on the "trainee's" scalp and ear. Brainwaves are monitored by a computer and goals are set that require the trainee to voluntarily produce more beneficial brain wave patterns. A second linked computer "coaches" the trainee by presenting visual, auditory and tactile representations of the trainee's brainwave signals in a video game format. This process is called "feedback" because it informs the trainee about his or her momentary success in making the desired brain changes. As the trainee exercises this ability to voluntarily change brain activity, new and beneficial response patterns are created. Neurofeedback retrains the brain when it is trapped in a pattern of malfunctioning, when the brainwaves may get fixed or stuck in a pattern of predominately high or low frequencies, restoring it to its own optimal functioning pattern.> > > >> > > > My daughter did about 22 sessions of Neurofeedback. She still suffers> > > from> > > > misophonia but she is much much better than when she first had it. I> > > didn't> > > > realize that she could get even better with more visits. I was under> > > the> > > > impression she had reached her maximum benefit and wouldn't improve> > > anymore.> > > > Both my boss and my coworker are currently going to neurofeedback (one> > > for> > > > stress and the other for dyslexia) and they are thrilled with the> > > results.>

> > > I think I will look into taking my daughter for more visits and see if> > > she> > > > finds improvement. I'll let you know.> > > >> > > >> > > >> > > > Thanks for the post-it's exciting to hear about any improvements.> > > >> > > >> > > >> > > > Kathy Howe> > > >> > > >> > > >> > > > From: Soundsensitivity > > > > [mailto:Soundsensitivity ] On Behalf Of clyle53> > > > Sent: Saturday, January 07, 2012 4:56 PM> > > > To: Soundsensitivity > > > > Subject: The CURE ... Neurofeedback> > > >> > > >> > > >> > > >> > >

>> > > >> > > >> > > > 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> > > > <http://www.bcia.org/> 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 <http://www.isnr.org/> www.isnr.org . At this time the practitioner> > > > listing section of this site is down so check back.>

> > >> > >> >> > > >>

[Guest guest]

----- Forwarded Message ----- To: Soundsensitivity Sent: Wednesday, January 11, 2012 10:22 PM Subject: Re: The CURE ... Neurofeedback

,

No, you are never exposed to any triggers during Neurofeedback, and you are not looking at images of brainwaves. (The practitioner will monitor brainwave function on a different screen). Instead you are looking at & listening to video & audio presentations on a computer screen in a video game format. There are several different formats, including one that somewhat resembles the actual "Pac Man" game. You are effectively playing the video game with your brain. As you produce more beneficial brainwave patterns you will be rewarded as with the sound of "beeps" in keeping the game going. These beeps or other reward sounds or visuals are not triggers. You don't need a trigger to get the brainwaves out of their normal frequency … that is the problem; they are already operating at

an undesirable frequency. Eventually the brainwave activity is "shaped" toward more desirable, more regulated performance. This is traditional Neurofeedback, or EEG Biofeedback, conducted by recording electrical activity coming from the brain.

There is another method used called Passive Infrared HEG Neurofeedback (PIRHEG) which measures brain activity as a function of the heat generated from brain activity and blood flow. Rather than a video game format, with this method you will watch a movie. You are actually keeping the movie going by achieving focused attention with a relaxed body & mind … otherwise the movie will stop periodically … until again achieving that focused but relaxed state.

My practitioner uses the traditional Neurofeedback with me 2 out of every 3 sessions. One of every 3 sessions I watch a movie with the PIRHEG method. I have watched "Dances with Wolves" and am currently watching "Lord of the Rings," in 20-30 minute segments.

> > > > > >> > > > > > My daughter did about 22 sessions of Neurofeedback. She still> > suffers> > > > > from> > > > > > misophonia but she is much much better than when she first had> > it. I> > > > > didn't> > > > > > realize that she could get even better with more visits. I was> > under> > > > > the> > > > > > impression she had reached her maximum benefit and wouldn't> > improve> > > > > anymore.> > > > > > Both my boss and my coworker are currently going to> > neurofeedback (one> > > > > for> > > > > > stress and the other for dyslexia) and they are thrilled with> > the> > >

> > results.> > > > > > I think I will look into taking my daughter for more visits and> > see if> > > > > she> > > > > > finds improvement. I'll let you know.> > > > > >> > > > > >> > > > > >> > > > > > Thanks for the post-it's exciting to hear about any> > improvements.> > > > > >> > > > > >> > > > > >> > > > > > Kathy Howe> > > > > >> > > > > >> > > > > >> > > > > > From: Soundsensitivity > > > > > > [mailto:Soundsensitivity ] On Behalf Of clyle53> > > > > > Sent: Saturday, January 07, 2012 4:56 PM> > > > > >

To: Soundsensitivity > > > > > > Subject: The CURE ... Neurofeedback> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > > 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> > > > > > <http://www.bcia.org/> 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 <http://www.isnr.org/> www.isnr.org . At this time the> > practitioner> > > > > > listing section of this site is down so check back.> > > > > >> > > > >>

> > >> > > >> > > >> > >> >>

[Guest guest]

Colleen, I would encourage you to read my previous post about Brain Master, just want you to have as much information as possible. I really hope none of us have to do anywhere close to 80-100 sessions. :-)Good luck,Heidi

My provider uses Brain Master. I’m getting my 17th session today. No changes, yet, but it’s way too soon. I’m anticipating 80-100 sessions.I’ll report in when something happens. Let us know if you find someone. Good luck.Colleen From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of miniaturehome@...Sent: Thursday, July 26, 2012 3:11 AMTo: Soundsensitivity Subject: Re: Fw: The CURE ... Neurofeedback I found a provider in my area that uses CYGNET and emailed her, but haven't had a response yet. Do any of your practioners use that? Missy in Nashville Find a provider in your area at these websites:http://www.eeginfo.com/http://www.bcia.org

Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com

[Guest guest]

Colleen, I'm sorry. My mistake, I was thinking of Brain State Tech, that's the one I posted about in the past about being questionable NOT Brain Master. Colleen, please consider having your NFB provider join the google discussion group http://groups.google.com/group/misophonia-support?hl=en & pli=1My provider is there as well as Steve Rothman. My provider has had several exchanges with other providers about Brain Master and treating Miso in well under 80 sessions. I encourage everyone interested in talking about NFB, doing NFB to join and encouraging their providers join also so we can all discuss our treatment and ask any questions we have. And not just NFB, we can discuss any and all treatment options, coping and research.Heidi

Colleen, I would encourage you to read my previous post about Brain Master, just want you to have as much information as possible. I really hope none of us have to do anywhere close to 80-100 sessions. :-)Good luck,Heidi

My provider uses Brain Master. I’m getting my 17th session today. No changes, yet, but it’s way too soon. I’m anticipating 80-100 sessions.I’ll report in when something happens. Let us know if you find someone. Good luck.Colleen From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of miniaturehome@...Sent: Thursday, July 26, 2012 3:11 AMTo: Soundsensitivity Subject: Re: Fw: The CURE ... Neurofeedback I found a provider in my area that uses CYGNET and emailed her, but haven't had a response yet. Do any of your practioners use that? Missy in Nashville Find a provider in your area at these websites:http://www.eeginfo.com/http://www.bcia.org

Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com

Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com

[Guest guest]

Heidi,No problem. I actually remembered it was Brain State that you discussed. Thanks for looking out for all of us.Colleen From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Friday, July 27, 2012 1:16 AMTo: Soundsensitivity Subject: Re: The CURE ... Neurofeedback Colleen, I'm sorry. My mistake, I was thinking of Brain State Tech, that's the one I posted about in the past about being questionable NOT Brain Master. Colleen, please consider having your NFB provider join the google discussion group http://groups.google.com/group/misophonia-support?hl=en & pli=1My provider is there as well as Steve Rothman. My provider has had several exchanges with other providers about Brain Master and treating Miso in well under 80 sessions. I encourage everyone interested in talking about NFB, doing NFB to join and encouraging their providers join also so we can all discuss our treatment and ask any questions we have. And not just NFB, we can discuss any and all treatment options, coping and research.Heidi Colleen, I would encourage you to read my previous post about Brain Master, just want you to have as much information as possible. I really hope none of us have to do anywhere close to 80-100 sessions. :-)Good luck,Heidi My provider uses Brain Master. I’m getting my 17th session today. No changes, yet, but it’s way too soon. I’m anticipating 80-100 sessions.I’ll report in when something happens. Let us know if you find someone. Good luck.Colleen From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of miniaturehome@...Sent: Thursday, July 26, 2012 3:11 AMTo: Soundsensitivity Subject: Re: Fw: The CURE ... Neurofeedback I found a provider in my area that uses CYGNET and emailed her, but haven't had a response yet. Do any of your practioners use that? Missy in Nashville Find a provider in your area at these websites:http://www.eeginfo.com/http://www.bcia.org Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com

[Guest guest]

one more test . . .

>

> >

> > My provider uses Brain Master. I'm getting my 17th session today. No

changes, yet, but it's way too soon. I'm anticipating 80-100 sessions.

> >

> > I'll report in when something happens.

> >

> >

> >

> > Let us know if you find someone. Good luck.

> >

> > Colleen

> >

> >

> >

> > From: Soundsensitivity

[mailto:Soundsensitivity ] On Behalf Of miniaturehome@...

> > Sent: Thursday, July 26, 2012 3:11 AM

> > To: Soundsensitivity

> > Subject: Re: Fw: The CURE ... Neurofeedback

> >

> >

> >

> >

> >

> > I found a provider in my area that uses CYGNET and emailed her, but haven't

had a response yet. Do any of your practioners use that?

> >

> >

> >

> > Missy in Nashville

> >

> >

> >

> > In a message dated 7/25/2012 5:24:42 P.M. Central Daylight Time,

bikinbones@... writes:

> >

> > Find a provider in your area at these websites:

> >

> > http://www.eeginfo.com/

> >

> > http://www.bcia.org

> >

> >

> >

> >

>

> Gorgeous, youthful skin is waiting for you.

> Real science. Real results.

> www.heidisalerno.nerium.com

>