Re: Misophonia as a lifelong condition...

[Guest guest]

I joined this site about 7 years ago. I used to hope the same thing—that there were people who would come forward and say “Oh yes—I used to have that problem, but it went away” or “I did this and it got better.” I just though we needed to get more awareness and that would bring those people to the group. Unfortunately, even with the Today show segment, not one person has come forward who “used to have it.” So I don’t think that they are out there. I know that many people in this group says it’s gotten worse over the years for them and this used to make me so sad (very depressed). However, thankfully my daughter seems to have gotten better than when she was at her worst (she is now 15 and got it when she was 8). We have tried many different therapies/doctors/approaches, so I don’t know if one of those may have helped. Plus, since my daughter found out when she was young that it’s not her fault, maybe this helped curb all the psychological overlays that the older people in the group developed because they didn’t have that knowledge and thought they were just crazy or horrible. Just my two cents— Kathy Howe From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of ABSent: Thursday, March 08, 2012 1:16 PMTo: Soundsensitivity Subject: Misophonia as a lifelong condition... I am new to all of this and my son suffers from sound sensitivity (chewing, tapping, clicking, typing). I keep reading that there is no cure for misophonia and that it gets worse over the years. This was depressing to hear. Due to lack of information as to who has it and the general lack of knowledge about it, I propose that there are countless individuals who could have had it, are better, and do not discuss it. People who have had misophonia but do not experience sensitivities anymore would not be flocking to this support group because they don't need to. Chances are that they do not realize that there is even a name for what has bothered them. I understand that there is not a quick or known 'cure' for those who are complaining of misophonia presently, but I do suggest that it could be something that subsides or disappears in some segments of the population and that we cannot rule that out. The data is just not in.I say this to offer some hope to people. I am very interested in the idea that my son, when tired or stressed out, can get very annoyed with soft sounds like chewing and typing. When he is well rested, has a positive attitude, and is happy or excited, he can eat with the whole family and with friends and be just fine. Seeing him have different reactions to the same setting tells me that there is some hope and that he can possibly get over it. I do think love heals and that finding love, peace and happiness within one's self and for one's self can help tremendously. That is what I notice in my son anyway. He was relieved and has oddly improved since I told him that other people have the same sensitivities and the the is not alone. He may be feeling some self acceptance and therefore, self love, and it may be good for him. I think stress and anxiety have a lot to do with the sensitivities and if those can be kept under control, a lot of improvement can be seen, in our case at least.Overall, I think we cannot tell ourselves that it will never get better. We simply do not have enough information to determine that such a statement is true for all people suffering sound sensitivities. People get over things all the time, terminal cancer, agoraphobia, and a host of other physical and psychological problems. Anne

[Guest guest]

Hi Kathy,Since I joined I've heard 3 people say that they used to have it and now they don't. One was a man whose name I've forgotten who told us all he willed it away. As I recall he left this group angry with us. The other 2 are Clyle and his son who reported NFB elminated all their triggers. I'm not saying either approach is the cure. I'm just noting that 3 people have said they used to have it and now they don't.Also if you've got rid of something chances are your not going to seek out this group just to tell us you are cured unless you were already a membe or you're super altruistic which sorry to say most people aren't. So they very well may exist :-)HeidiSent from my iPhone

.. Unfortunately, even with the Today show segment, not one person has come forward who “used to have it.†So I don’t think that they are out there.

[Guest guest]

Greg Z. is another person that’s mentioned NFB.  In one of his earlier posts he mentions a friend and that friend’s son who told him “they both have been 90% cured of ocd and misophonia with 50+ sessionsâ€.   It may not be 100%, but 90% sounds very hopeful.  50+ sessions is a lot, but maybe that’s what it takes.  There’s been some discussion on if misophonia might be related to OCD (similar to how Tourettes is common with OCD – both originate in the same part of the brain).  Maybe that’s the case for some people, and in those cases, NFB might be more effective, as in the example above.  Just more food for thought . . .  (Note: This may fall under the other topic of “neuro-biofeedback…â€, but it falls under this topic also!) From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Thursday, March 08, 2012 3:29 PMTo: Soundsensitivity Cc: <Soundsensitivity >Subject: Re: Misophonia as a lifelong condition... Hi Kathy,Since I joined I've heard 3 people say that they used to have it and now they don't. One was a man whose name I've forgotten who told us all he willed it away. As I recall he left this group angry with us. The other 2 are Clyle and his son who reported NFB elminated all their triggers. I'm not saying either approach is the cure. I'm just noting that 3 people have said they used to have it and now they don't. Also if you've got rid of something chances are your not going to seek out this group just to tell us you are cured unless you were already a membe or you're super altruistic which sorry to say most people aren't. So they very well may exist :-) HeidiSent from my iPhone . Unfortunately, even with the Today show segment, not one person has come forward who “used to have it.†So I don’t think that they are out there.

[Guest guest]

I don’t remember reading about the one guy—must have missed him.  But I did read about Clyle and feel that NFB might definitely be a possible cure.  But besides NFB, there doesn’t seem to be anybody who has had any significant help from any other treatment. You may be right about not being altruistic, but I have searched a lot of other medical issues (I had this weird eye problem) and it was amazing how many people posted that they had had the same problem and what they did to cure/fix it.  I think a lot of people are proud when they have the answers, and I’ve got to believe that at least one person who watched the Today show would have wanted to tell us that they know the answer to our problem. My daughter is going to start NFB in the summertime—she just does not have time right now.  I think she will do about 2-3 sessions per week.  As I mentioned before, she did 20 sessions about 6  years ago.  I’m hoping that after about 10 sessions she can tell a difference.  I feel very fortunate that the practitioner we are going to go to is very reasonably priced and she only charges $150 for the EEG.  The last one charged $700 (although insurance paid for it). I’m glad that NFB has been helpful for your tremor.  It definitely is amazing.  My boss goes there and so does my coworker’s son.  My coworker says he is so much calmer since he started. Thanks, Kathy From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Thursday, March 08, 2012 6:29 PMTo: Soundsensitivity Cc: <Soundsensitivity >Subject: Re: Misophonia as a lifelong condition... Hi Kathy,Since I joined I've heard 3 people say that they used to have it and now they don't. One was a man whose name I've forgotten who told us all he willed it away. As I recall he left this group angry with us. The other 2 are Clyle and his son who reported NFB elminated all their triggers. I'm not saying either approach is the cure. I'm just noting that 3 people have said they used to have it and now they don't. Also if you've got rid of something chances are your not going to seek out this group just to tell us you are cured unless you were already a membe or you're super altruistic which sorry to say most people aren't. So they very well may exist :-) HeidiSent from my iPhone . Unfortunately, even with the Today show segment, not one person has come forward who “used to have it.†So I don’t think that they are out there.

[Guest guest]

Kathy, nice to hear your voice. I am finding too that the child-tween-early

teen is the worse phase for most 4S/miso people.

Older kids can handle things better. They can moderate and move on and cope and

reason.

Adults can structure their lives around the issue and avoid compromising work

settings and make friends with polite people.

I am glad to hear from you that your dear heart is going along and maybe even

better than before!

Dr J

[Guest guest]

Yeah—I always hope that she is truly better and not just being tortured in silence because she so desperately wants to be “normal.” It’s exciting how far this group has come. It’s also exciting that 20/20 is going to do a segment and we’ll get more exposure. Thanks so much for all you do! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Thursday, March 08, 2012 10:20 PMTo: Soundsensitivity Subject: Re: Misophonia as a lifelong condition... Kathy, nice to hear your voice. I am finding too that the child-tween-early teen is the worse phase for most 4S/miso people.Older kids can handle things better. They can moderate and move on and cope and reason.Adults can structure their lives around the issue and avoid compromising work settings and make friends with polite people.I am glad to hear from you that your dear heart is going along and maybe even better than before!Dr J