Hi everyone.   I wanted to share some exciting news for those who suffer with Misophonia.  Dr. Marsha Johnson has spoken to researchers at the NIH about setting up a study and many of us have sent in our personal stories to the NIH.  It has sparked their interest and we've received a letter back and this is what it said...

Dear _______,

Thank you for your inquiry regarding soft sound sensitivity ... Several researchers at the NIH are very interested in soft sound sensitivity and we are currently considering investigation of this
problem. As with any scientific investigation, careful and extensive planning must occur prior to implementation of a research study. We anticipate being able to provide you with more information about our plans in approximately six (6) months.

We acknowledge your interest and will contact you when we are able to provide specifics about the possibility of an NIH study.

Future inquiries can be directed to me at this email address:
soundsensitivity@nidcd.nih.gov

Regards,

Carmen C Brewer, Ph.D.
National Institute on Deafness and other Communication Disorders
National Institutes of Health



This is great news for us and anyone here who suffers from this is encouraged to send in your story to the NIH so they may have it on record for further study.  Please send them your name and contact info, current age, age at onset of symptoms, the sounds that drive you mad, your reaction to hearing sounds,  how this has affected you in your daily life, whether others in your family experience this as well, and treatments you are currently trying or have tried for this condition.  Together we can make a difference and help those, including ourselves, who suffer from this condition.  Thanks so much!! 

Darlene

Misophonia is a recognized term used by researchers and doctors to refer to the dislike of sound. This includes the dislike of specific soft sounds. Unless objective studies conclude dislike of some soft sounds is a specific condition or syndrome that is different from misophonia, members are encouraged and asked to use the term misophonia on The Hyperacusis Network. Thank you for your cooperation.

Moderator


 

Thanks Gizmookie!! :)

Sounds exciting!!

Is this only for people bothered by eg certain letters in speech or sounds of eating or such or for others with both hyperacusis & misophonia too? (That find most sounds 'too loud') - Or people that have hyperacusis-like symptoms but LDL's of the 'normal' or 'almost normal' range & are thus diagnosed with 'misophonia'?

& only residents of US or international?

& will it be nutritional + CBT or...?
Would be interesting to hear more... :)

Excited for anyone who could profit from this!!
(health-wise, I mean!!)

Layla,  as far as I know, the e-mail address set up at the NIH is for those who suffer mostly with Misophonia (dislike of soft sounds)... the sounds don't physically cause any pain for our ears, the sounds just make us completely enraged!  These sounds can include eating noise, heavy breathing, sniffing, throat clearing, hearing certain letters like "p" "s" or "c", gum chewing, etc...   However, I don't think it would matter if you also have Hyperacusis as long as you also experience strong Misophonia.  A few people at the yahoo site have spoken directly with the NIH and they have said that anyone can e-mail whether in the USA or not.  I have no idea what will be involved in the study as far as types of treatments that will be tried, etc... that is what we will have to wait and see! 

Darlene

Misophonia = dislike of sounds

I have this as well, next to T and H. Allthough my H is almost gone now, and the misophonia is almost zero compared to what it used to be pre-H and pre-T.

I think using the word 'soft' is a bit confusing, since chewing noises or eating noises aren't particularly soft. Neither is the pronounciation of certain letters like K, P, C, S. These are almost the loudest letters you can pronounce.

But that discussion is not for this board I guess...

Guflu, you said your misophonia is "almost nothing compared to what it used to be pre-H and pre-T."
Do you mean that you experienced misophonia prior to the onset of H/T?
Also "misophonia" seems to mean dislike of high decible sounds, or sounds that one is concerned may be loud and physically hurt the auditory system.
To others, it seems to mean a dislike of eating noises,
certain physical motions &/or certain consonants, which cause instantaneous rage and disgust.
Maybe this discussion is confusing partly because the latter description seems to hit the neurological system, or be caused by it's rsponse, in a distinct way from that which is active with dislike of sounds one is concerned could be injuruious to the auditory system.
For the latter condition, I would agree with Guflu that "SSSS" is also misleading.
How about, "eating, breathing and speaking sounds and body motions rage (EBSS/BMR)."
Or, "mouth sounds/body motions rage (MS/BMR)."
Does anyone agree that for conceptual clarity, this syndrome needs it's own, term, and a more literally descriptive one?
Back to what you mentioned, Guflu,
did you mean to say you exprienced intense dislike of specifically eating sounds, &/or consonants &/or motions that imply body sounds?
And that you experienced this prior to H & T but do not as much now that you are treating H & T?
Or do you mean that you used to experience dislike of sounds ou associated with possible strain on your actual auditory system?
And that this has diminished with H & T treatment?
Or a little of both syndromes?

[QUOTE=Debbie]Also "misophonia" seems to mean dislike of high decible sounds, or sounds that one is concerned by be loud and physically hurt the auditory system.
To others, it seems to mean a dislike of eating noises,
certain physical motions &/or certain consonants, which cause instantaneous rage and disgust.[/QUOTE]

I think we have to distinguish between 'dislike of sound' = misophonia, and 'fear of sound' = phonophobia. Being afraid that certain sounds could hurt the auditory system is clearly phonophobia.

[QUOTE]
did you mean to say you exprienced intense dislike of specifically eating sounds, &/or consonants &/or motions that imply body sounds?
And that you experienced this prior to H & T but do not as much now that you are treating H & T?
Or do you mean that you used to experience dislike of sounds ou associated with possible strain on your actual auditory system?
And that this has diminished with H & T treatment?
Or a little of both syndromes?[/QUOTE]

I experienced a strong dislike to certain sounds, like clicking pens, typing on a computer keyboard, breathing sounds, ventilation system sounds, etc. I had this prior to my T and H. Now that I am coping with the T and H with TRT, I am noticing that I don't have the physical reaction to these sounds as much as I used to have it. E.g. if someone is clicking a pen, I notice it, but I don't go into a frenzy about it anymore.

Thank you Guflu for your clarification
of phonophobia as
dislike of sound due to pain and fear of audtory injury, and misophonia as
dislike of sound due to emotional annoyance.
Seems there are semi-overlapping categories of misophonia triggers.
I am wondering if some triggers are associated with more extreme annoyance/disruption of concentration, as those with "mouth sounds/body motions" symptoms on this board report, or if all misophonia trigger sensitivities can as likely lead to such dramatic limbic system involvement.
For example I am wondering if sensitivity to pen sounds & computer clicking is inherently less invasive & rage-producing than sensitivity to mouth sounds & body motions.
Either way, it seems that a trigger-sensitive, neurobiological mechanism is at work as it is with obsessional OCD, and causes similar if not identical, limbic-system fight-flight distress.
I have mentioned in earier posts that it seems that CBT and other anti-obsessional treatment methods used for OCD, with the possible addition of sound therapy basically as an adjuct CBT tool, would likely be an effective treatment approach for misophonia.
I am still wondering if there is a more useful term for misophonia when described in this context than the presently used terms for it.
I am also wondering whether clusters of triggers (clicking vs. eating sounds, for example....and a denotion for the often-mentioned inclusion of motions-induced annoyance) are most usefully designated into sub-categories for the sake of patients' self-identification...
and the same for that of researchers
who may want to investigate misophonia as a whole in terms of brain anatomy & physiology & further link symptoms with specific brain regions.
Such sub-catigorization under the umbrella of misophonia could also help researchers tease out any possible psychological links within the etiology of symptoms...or determine if it is largely "hit or miss" based on the original neurological stressor (genetics/viral/head injury/chemical...etc. as with OCD).
One research question could be whether ultimate symptom expression is a combination of both the neuro-stressor and psychological factors, or is disproportionately affected by one or the other factor.
I really think that the results of this 'misophonia' study would have implications for the understanding of OCD, as misophonia and OCD, especially the extremely intrusive forms described here by those with consonant &/or eating sounds & body motions triggers, seem to be part of the same species.

[QUOTE=Guflu]

I think using the word 'soft' is a bit confusing, since chewing noises or eating noises aren't particularly soft. Neither is the pronounciation of certain letters like K, P, C, S. These are almost the loudest letters you can pronounce.
[/QUOTE]

Seems to me that if you are going to create a subcategory of misophonia devoted to the emotional annoyance caused by soft sounds (as opposed to, I suppose, the subcategory of emotional annoyance caused by not-so-soft sounds), then the two subcategories should differ in prognosis and/or in the way they are treated.  Otherwise there would be no reason to create subcategories at all; it serves only to confuse the issue.

Which is why I am opposed to creating a subcategory of misophonia devoted to soft sounds.

smn

Hi, it seems that what may be missing is a clear and detailed definition of "misophonia".
For the sake of patient identification, research and treatment, this condition must be distinct from phonophobia (a term which in turn must be distinctly seprated from hyperacusis....which in turn must be given it's own clear & distinct, diagnostic definition.)
It actually seems...in terms of research and outreach, as if the definitions of each of these terms is a little - and probably unnecesarily - fuzzy.

To begin with, the term misophonia must be made distinct from conditioned fear of sound
originating from ongoing, or previous, auditory injury leading to pain, tinnitus, dizziness, or any of various physical signs of ear damage.

I may be misunderstanding, but it seems that those this proposed study will focus on specifically experience rage, disgust, frustration, loss of concentraton when triggered by a narrow cluster of specific sounds and often visual cues.

Is this what is meant by "soft sound sensitivity syndrome?"
Is this what is also exactly what is meant by "misophonia?"

If so I think we would all agree that this type of disorder is NOT hyperacusis or phonophobia.

But maybe this set of symptoms is not always what is meant by misophonia?

Whatever this set of symptoms can best be called, there are clearly very distict subgroups of it, with narrow overlaps of sound and at times visual triggers between them.

The language sounds group and the eating sounds group seem similar in that their triggers are tied to the most basic currencies of human bonding...food and speech...and it would seem that exposures to these triggers, for those whose symptoms are linked to them, would be both the most disruptive and the most painful of any triggers in life to try to avoid.

This could be said for the problems people experience with hyperacusis and any other injury or illness which pervasively separates one from shared external or internal human experiences.

Ultimately, the psychic pain of chronic "invisible" disorders and even chronic visible ones may be similar, although that could be a whole other topic for discussion.

But in terms of study and treatment of these symptoms, and in terms of patients' self-identification and group support, the various 'disorders' are so very
different.

I think confusion over or lack of agreement as to the meaning of the terms to be studied is what has given rise to this discussion.

Darlene, would you use further details to describe what you call "soft sound sensitivity" in the context of this proposed study?
How does these symptoms differ, or not, from Dr. Johnson's understanding of "misophonia"?

I know it might sound like overkill but I also know that in science, verbal specifics are as important precision in measurements, because of the need for others to be able to replicate the study.

It seems language which makes clear understanding and a process of agreement about these terms possible...would bring clarity to discussions about this study, and greater shared excitement about this study.

It could even spark some ideas here on how to garner interest in researching hyperacusis, tinnitus, or other conditions we discuss on this board.

Thanks for letting us know about this exciting proposed study.
I hope the dialogue continues and we can all help each other reach new answers and hope.

Hi Darlene, ((( Smiles )))

Thats interesting..
So their setting up a study at the NIH with letters submitted to them by your doctors..
And there are over 800 plus of you talking with each other about the things you have tried over the years and nothing is working??
I guess you mean in fixing this condition you all have?
Still looking for a cure/fix, thats hard..
I was reading something in the paper about brain wave patterns in responses and being overloaded...
which gives them a window through which we can get a picture of some of the neurological conditions reponsible ...
It's about a study showing the delay in processing individual sounds in autism..
But whats interesting is..
It records brain activity in real time..
And I just wonder since I still think this is some kind of neurological disfunction.
As the brain wave study used non invasive technology called magnetoencephalography,
MEG for short which measures magnetic fields generated by electric currents in brain nerve cells,
and records brain activity in real time..
It shows the brain response to sounds..
I don't know how that test would work for you all..
They use rapid beeps which recorded the brains response to the sounds.
For you all it's eating noise ect...
And the response to it ect..
Alittle different of course and..
I don't know if they can pump thoses noises in..
Or create some of the situations that cause theses problems to happen for you all..
and then check out your brain wave patterns..
And it's not a cure of course..
But if it worked..
It would show that it's not all just in your head but in your head too..
Put some reality into it for the medical community to take it more seriously. 
That actually something is actually misfunctioning/misfireing in response too these events up there..
Unique brain wave patterns that's fireing for you all..
As like they compare the brain patterns with a non autistic group..
They can compare you all with other groups of patterns like maybe for 
OCD or Anxiety disorders or just other groups of neurological effects..
For some kind of a pattern.. 
I don't know if that would work it's just an interesting thought though..
Somethings got to work right??? 

Good news yet sorry to hear..          

Many of us have had letters submitted to them by our doctors suggesting they study this because
they have tried everything from medication, CBT, therapy in general, etc... and nothing is working. 
If every doctor the 800+ of us has seen has no freaking clue what this is or how to fix it then it's something worth studying.

Lynn, I think these measurements could potentially help a lot. There are researchers also currently doing 3-dimensional imaging (PET and SPECT scans) which have helped identify an treat specific neurochemical disorders.
I think it is beneficial for someone to be able to observe these patterns & see the aim and rational for treatment.
In terms of so many treatment approaches tried by those on the board...
I do wonder if anyone has tried the treatments in a specialized and multi-pronged approach:
* Highly specialized CBT to treat obsessional OCD-type symptomology
* specialized doses of meds/nutrients
* sound therapies (possibly including neuro-stimulating AIT or Sound Therapy International as well as broadband.
- The AIT/STI type aproaches might possibly & simply be one tool when it comes to neuro-therapy.
- The broadband might be of use specifically
in conjunction with cognitive behavioral therapy.
The pervasiveness of the sound would be somewhat useful in terms of turning down the intensity of the stimulus and most useful as a continuous reminder
to do such repeated steps as these:

"This (unbearable) feeling is not about this sound.
It is due to a false message from my brain.
I am now re-focusing my attention."

Such interventions would be used together
and expertly managed by a specialist
who treats neurobiological attention/obsession symptoms.

I'm guessing that these treatment approaches
would need to be coordinated to receive a fair shake.

Hi Debbie, ((( Smiles )))

Ya.. If they could  measured it in some way it would help it to be
understood more..
Like you said..
[QUOTE]
I think it is beneficial for someone to be able to observe these patterns &
see the aim and rational for treatment.[/QUOTE]
Plus..
I'm not sure the exact details of approach in multi factors Darlene would have more details on that ..
Even though I know Marsha has tryed TRT with them..
I assume they have tried sound therapies like sound machines ect too..
Maybe if even to cover up the disturbing noise's..
Specialized nutrients I would also go with that..
Plus maybe some detoxing the body & brain therapies like even chelation for heavy metals could possible be helpfull to like..
ALA ect..
It has helped autistic child and others with neurological problems..
Could be helpfull too..
Meds if needed if they can help as well..
CBT just a full treatment plan for all aspects of possibiltys for this disorder.
To cover all bases I understand what your saying..
But has that been tried in that way???
I'm not sure..
Any answers to that??
Darlene or anyone else with this condition who knows???

Glad to see this topic here. It belongs here since so many people with these symptoms find themselves here seeking answers.

It was asked if these therapies were effective or have been tried:

* Highly specialized CBT to treat obsessional OCD-type symptomology
* specialized doses of meds/nutrients
* sound therapies (possibly including neuro-stimulating AIT or Sound Therapy International as well as broadband.
- The AIT/STI type aproaches might possibly & simply be one tool when it comes to neuro-therapy.
- The broadband might be of use specifically
in conjunction with cognitive behavioral therapy.


CBT has been tried in a wide variety of presentations and styles and does not have any significant effect on patients that have reported on their therapies.

Meds/Diet appear to have zero effect on the primary symptoms, as reported.

Sound Therapies:  AIT has zero effect.  Ongoing use of broadband wave energy when used as inserts in the ears appears to have an immediate positive effect but does not persist beyond the use applications.

Sound Therapy WITH CBT, I think this has the most promise and should be further explored. 

*Interest is growing and I am very pleased on behalf of the thousands of people whose lives have been negatively affected by these troublesome problems.  I am hopeful that the use of functional imaging may reveal more about the root causes of this disorder.

Dr. Marsha Johnson

[QUOTE=Debbie]
If so I think we would all agree that this type of disorder is NOT hyperacusis or phonophobia. [/QUOTE]

Agreed.  They are all seperate issues.  The trigger sounds (as we call them) don't physically hurt our ears like those with hyperacusis.  They do hurt us in other ways though.  We do not fear the sounds like those with phonophobia.  However, there are a few people at the yahoo site who do have both misophonia and hyperacusis or misophonia and phonophobia.  But they are all clearly different... except where Misophonia is concerned and that is the big argument on this site.  I think Misophonia is too general a term.

[QUOTE=Debbie]
Darlene, would you use further details to describe what you call "soft sound sensitivity" in the context of this proposed study?
How does these symptoms differ, or not, from Dr. Johnson's understanding of "misophonia"? [/QUOTE]

I have no details as to what the study (if there is ulitmately one done) will be about.  Dr. Johnson has had converstations with the NIH directly and said that they seemed interested.  So we all started sending in our own personal stories.  Then, some have had their doctors submit letters saying their patients would be good candidates for a study because they have no clue what's going on and everything they've tried doesn't work.  I think they are interested in the fact that each one of us has the EXACT same story to tell and why nothing is working to help alleviate these symptoms.  My own interpretation of "soft sound sensitivity" is the same as Dr. Johnsons.  It's a strong negative reaction (including rage, panic, sadness, depression etc...) to specific sounds that seem to stem around any sounds pertaining to eating, breathing, and speaking. It triggers our "fight or flight" response.  I would say in 99.9% of stories I've heard... it all starts with eating sounds and that is the main trigger for every person.   In the end whether this is a type of hyperacusis, a type of OCD, or if they say it's Misophonia I really don't care... I just want it gone!

[QUOTE=LynnMcLaren]
So their setting up a study at the NIH with letters submitted to them by your doctors..[/QUOTE]

We hope... it's not a definite yet!

[QUOTE=LynnMcLaren]
And there are over 800 plus of you talking with each other about the things you have tried over the years and nothing is working?? [/QUOTE]

yep!  It's nice to have people who really understand how it is to have this... just like everyone here who has hyperacusis supports each other.  It's like a second family.  We share suggestions and reports on our recent doctor visits/treatments, etc... Recently there have been many parents join searching for answers as to what is going on with their child.  They enjoy speaking with people who have this so they can further understand what their child is going through.

[QUOTE=LynnMcLaren]
I still think this is some kind of neurological disfunction.[/QUOTE]

I think you are right.

[QUOTE=LynnMcLaren]
As the brain wave study used non invasive technology called magnetoencephalography,
MEG for short which measures magnetic fields generated by electric currents in brain nerve cells,
and records brain activity in real time..
It shows the brain response to sounds..
I don't know how that test would work for you all..
They use rapid beeps which recorded the brains response to the sounds. [/QUOTE]

Very interesting!  I would absolutely love to hook my head up to that thing...  I'd probably blow it up when I go into rage upon hearing "that sound". 

[QUOTE=LynnMcLaren]
I don't know if they can pump thoses noises in..
Or create some of the situations that cause theses problems to happen for you all..
and then check out your brain wave patterns.. [/QUOTE]

That's the interesting thing... many people I speak with on the yahoo site say the same thing... that when they listen to a recording of people eating for example to try to "get used to it" it often doesn't have the same affect on them as if they just heard it in their daily lives.  I think this is because they feel they have "control" over whether they want to hear it or not.  A lot of this condition is feeling out of control.  It triggers the "fight or flight" response and it's either get out now or go to combat!!  Now, if they could create a portable way of testing our brains so they could record events from our daily lives without trying to recreate the sounds, that would rock!  Sort of like a holter monitor that records your heartbeat... only made to record brainwaves

.
[QUOTE=LynnMcLaren] It would show that it's not all just in your head but in your head too..
Put some reality into it for the medical community to take it more seriously. [/QUOTE]

Oh that would make my day... I'm so sick of people telling me "get over it", or "deal with it" or "you're crazy".  Do people think I would deliberately 'want' to feel this way?  Do they think I would rather eat alone in my room than to enjoy family dinners?  

I don't believe that this is just "in my head" as I have been told by many and this is my reasoning...

I distinctly remember one day at the dinner table being fine and the next day at the dinner table I was raging.  How can something that quick be created by my own doing?  I did not "learn" this behavior from anyone, I never had issues with food or being overweight as others have suggested.  I had no aggression or bad thoughts towards my father who was my first "trigger" with his eating.  This is the same with so many of us... you're fine one day and the next things bug you and it's usually a close family member who is the worst offender.  People we love and cherish.  It's horrid.

Thanks Lynn for the info on the brain scanning!  I'm going to check into that more.  I'd gladly be the guinea pig!

Darlene

Hi Darlene, ((( Smiles )))

Ya.. I could kind of relate to that..
Thats what happened to me with tinnitus and hyperacusis..
One day I had no tinnitus no hyperacusis..
I had a life before T&H..
And then one day my life changed..
Things were much different..  

[QUOTE]
I distinctly remember one day at the dinner table being fine and the next day at the dinner table I was raging.  How can something that quick be created by my own doing?  I did not "learn" this behavior from anyone, I never had issues with food or being overweight as others have suggested.  I had no aggression or bad thoughts towards my father who was my first "trigger" with his eating.  This is the same with so many of us... you're fine one day and the next things bug you and it's usually a close family member who is the worst offender.  People we love and cherish.  It's horrid.


[/QUOTE]

I could kind of relate to that feeling..
The noises I couldn't stand with hyperacusis..
Noises other people made made me mad too..
Why did they do that to me??
Though it was because they hurt my ears doing that..
like being physically assaulted by them.. 

[QUOTE]
Very interesting!  I would absolutely love to hook my head up to that thing...  I'd probably blow it up when I go into rage upon hearing "that sound". 
[/QUOTE]

I don't know if it's portable I guess it could be made to be..
Like a wireless computer hookup or a cell phone could they do that?
By signal??
It's actually an imageing helmet that resembles a big salon hair dryer..
Not sure how portable that is..
Would be interesting though..

[QUOTE]
Now, if they could create a portable way of testing our brains so they could record events from our daily lives without trying to recreate the sounds, that would rock!  Sort of like a holter monitor that records your heartbeat... only made to record brainwaves
[/QUOTE]

I could understand that I felt the same way with T and H.
It's in my head but not all in my head..
Who would want it.. (((( Smiles ))))

[QUOTE]
Oh that would make my day... I'm so sick of people telling me "get over it", or "deal with it" or "you're crazy".  Do people think I would deliberately 'want' to feel this way?  Do they think I would rather eat alone in my room than to enjoy family dinners?  
I don't believe that this is just "in my head" as I have been told by many and this is my reasoning...
[/QUOTE]

I could understand that..
Anything to get rid of it.. 
Who wants it..
I didn't like my T and H either..

[QUOTE]
I'm going to check into that more.  I'd gladly be the guinea pig!

[/QUOTE]

So I hope it all goes well..
Any studies done on this..
Lucky to have an advocate in Marsha..
That always helps to have someone routeing for ya.. 

[QUOTE]you're fine one day and the next things bug you and it's usually a close family member who is the worst offender. People we love and cherish. It's horrid.[/QUOTE]

The family member is not the offender. You are the offender. The family member does NOTHING wrong.

My problems are kinda resolved, by accepting it is MY problem, that i LET it get to me, by accepting i have this, by accepting that when it gets to me it gets to me, by not BLAMING myself for having this, by learning how to control the anger, by doing sound therapy, by learning how to truly LOVE the person that is upsetting me again, without the sounds bothering me, by acknowledgement and findin understanding. And along with this I take anti-anxiety meds.

In a sense, by dealing with it and becoming a balanced person again and learning to love myself with all my rights and wrongs. (Ooh that sounds tacky, but it's o so true). And this takes time, time, effort, perseverance, will power etc. etc. It's not a question of taking a pill and voilá. Or by hoping someone else can solve the problem. NOONE can solve this problem. It is your problem and YOU have to find a way to deal with it.

I learned how to focus on the things that don't bother me. Instead of focusing on things that annoy me. And I think this has lots to do with reinstructing the brain.

Gizmookie writes --

many people I speak with on the yahoo site say the same thing... that when they listen to a recording of people eating for example to try to "get used to it" it often doesn't have the same affect on them as if they just heard it in their daily lives.  I think this is because they feel they have "control" over whether they want to hear it or not. 

…….

Therefore, it wouldn’t be accurate to say that this challenge is due to a reaction to certain sounds.  It may have more to do with experiencing a lack of control over those sounds.  If the person was reacting to the sound per se, he or she would react the same regardless of whether the sound was presented in recorded form, if an actual live person was making the sound, or if they themselves were making the sound. 

……..

How can something that quick be created by my own doing? 

……..

Whose doing would you say it is?  Please don’t misunderstand the way I’m asking the question.  I’m not suggesting it’s your fault or anyone else’s.  In fact, I suggest taking the “fault” out of it.  But it is a challenge that, in some way that is unknown at this time, you are creating in some way.  Someone else isn’t doing this to you.    

……..

I did not "learn" this behavior from anyone, I never had issues with food or being overweight as others have suggested.  I had no aggression or bad thoughts towards my father who was my first "trigger" with his eating.  This is the same with so many of us... you're fine one day and the next things bug you and it's usually a close family member who is the worst offender.  People we love and cherish.  It's horrid.

……..

My own opinion is that this has nothing to do with food or eating sounds.  It is expressing itself in those terms, but I think it would be tough to make a causal connection between these sorts of sounds and the reactions they engender.

……..

It's a strong negative reaction (including rage, panic, sadness, depression etc...) to specific sounds that seem to stem around any sounds pertaining to eating, breathing, and speaking. It triggers our "fight or flight" response.  I would say in 99.9% of stories I've heard... it all starts with eating sounds and that is the main trigger for every person.  

……..

I could be wrong, but I don’t think this is a reaction to specific sounds or else the reaction would be consistent.  If I’m not mistaken, a number of folks with this challenge are fine when they are making the sound.  It’s when others – often particular others – make the sound that the problem arises.  So, I guess I’m saying I don’t think the problem starts with eating sounds.  I think it presents itself that way.

Rob 

[QUOTE=Rob]
I could be wrong, but I don’t think this is a reaction to specific sounds or else the reaction would be consistent.   If I’m not mistaken, a number of folks with this challenge are fine when they are making the sound.   It’s when others – often particular others – make the sound that the problem arises.   So, I guess I’m saying I don’t think the problem starts with eating sounds.   I think it presents itself that way.
 
[/QUOTE]

I think Rob is very right here, since I experienced this challenge myself, and in slight proportions still have it but know how to deal with it. It is not the reaction to specific sounds, but the reaction to specific sound that someone or something PARTICULAR makes.

I could stand breathing sounds from all people, but NOT if they came from my hubby through the phone or sitting next to me, or from my dad. Those sounds made me FURIOUS!

And I think Gizmookie is on the right track with the 'being in control' thing as well.

[QUOTE=Guflu]
The family member is not the offender. You are the offender. The family member does NOTHING wrong.
[/QUOTE]

You misunderstood me.  I never meant to imply that they are doing this intentionally nor am I saying they are doing anything wrong.  By using the word "offender" I meant that they are the people who make the sounds that annoy me.  I know that people don't make these sounds to tick me off.  Eating makes noise... everyone makes noise to some degree.  How can you possibly eat corn on the cob quietly?  However, I do take offense when people also blame me... I am not doing this on purpose either. 

[QUOTE=Guflu]
My problems are kinda resolved, by accepting it is MY problem, that i LET it get to me, by accepting i have this, by accepting that when it gets to me it gets to me, by not BLAMING myself for having this, by learning how to control the anger, by doing sound therapy, by learning how to truly LOVE the person that is upsetting me again, without the sounds bothering me, by acknowledgement and findin understanding. And along with this I take anti-anxiety meds. [/QUOTE] 

I do accept this as MY problem and I don't blame anyone for this.  I am working on all the things you mentioned and I take anti-anxiety meds.  I realize this takes time but I've been dealing with this since age 10... 25 LONG years of trying and I'm sick of it.

[QUOTE=Guflu]
NOONE can solve this problem. It is your problem and YOU have to find a way to deal with it. [/QUOTE]

Yes it is my problem and I am dealing with it.  I am dealing with it the best way I know how and doing all the things you listed and more.  I'm seeking help with doctors and the NIH.  That is my way of finding help.  When people say that nobody can help you,  it makes me (and others with this) feel like you are implying that it's all in my head and it's not a real problem... that I should just deal with it the rest of my life and not even try to get help for it.  Did you "just deal with it" or did you seek out help too? I don't believe for one minute that Nobody can help me.

[QUOTE=Guflu]
I learned how to focus on the things that don't bother me. Instead of focusing on things that annoy me. And I think this has lots to do with reinstructing the brain.  [/QUOTE]

I do this as well.  In fact, I force myself to go to movies because I LOVE movies but hate the popcorn chomping.  I try, try, try everyday.   I'm sorry if I seem snippy... I've misplaced my ipod (my lifeline) an it's been a horrible sound day. 

[QUOTE=Rob]

Therefore, it wouldn’t be accurate to say that this challenge is due to a reaction to certain sounds.  It may have more to do with experiencing a lack of control over those sounds.  If the person was reacting to the sound per se, he or she would react the same regardless of whether the sound was presented in recorded form, if an actual live person was making the sound, or if they themselves were making the sound.  [/QUOTE]

Yes, I believe control has a lot to do with it which in my case is odd because I am NOT a controlling person by nature.  I'm not saying that listening to pre-recorded sounds of eating, etc... has the same affect for each person with this conditon.  Me personally, it ticks me off still but not to the same degree.  Others say it doesn't bother them at all, and others say it makes them just as mad.  It varies from person to person.  In all but very few cases (my niece being one of them) the noises they make personally don't bug them at all. 

[QUOTE=Rob]Whose doing would you say it is?  Please don’t misunderstand the way I’m asking the question.  I’m not suggesting it’s your fault or anyone else’s.  In fact, I suggest taking the “fault” out of it.  But it is a challenge that, in some way that is unknown at this time, you are creating in some way.  Someone else isn’t doing this to you. [/QUOTE]

I know you are not implying it's my fault but I am not blaming anyone else for this either.  I simply meant that SO many people tell me that I somehow created this myself... that I one day magically made it up in my head that I hate eating noise.  That's ridiculous.  I meant that something has gone a-wall in my brain.  Yes, my problem... but not by my choice.   

[QUOTE=Rob]I could be wrong, but I don’t think this is a reaction to specific sounds or else the reaction would be consistent.  If I’m not mistaken, a number of folks with this challenge are fine when they are making the sound.  It’s when others – often particular others – make the sound that the problem arises.  So, I guess I’m saying I don’t think the problem starts with eating sounds.  I think it presents itself that way.  [/QUOTE]

So are you saying we are reacting to the people making the sounds and not the sounds themselves?  To me, the reactions are consistent because of the fact that the same people seem to bother us... family members.  And yes, you "could" be wrong.

Hi, I'm new to the board, and I suffer from the soft-sound variety of misophonia, or whatever people want to call it.  Arguing over nomenclature seems pretty pointless.  We need research to clear these issues up for us, not arguing.

Control is an issue in my sound sensitivity, but I don't think that's the root of the problem.  When I was about 8 or 9, I started noticing chewing sounds and began having a negative reaction to them, but I didn't feel like I needed to control them.  I just couldn't stand to hear them.  I began noticing kids sniffling in class, and I couldn't stand that either.  The control issue arises from exposure to offensive sounds over time, and wishing like crazy I could make the sounds stop.  Or wishing they would magically stop bothering me.  After hearing variations of the same story from many other people at the yahoo group site, I'm convinced this is a brain wiring problem.  There are layers of psychological issues that have come along with this, but the root of the problem is the instant, primitive brain response to the noise.  It's like a shock to my nervous system, it's extremely unpleasant and feels like an invasion.

It's hard for people who don't have this condition to understand or believe that a sound can do this to a person, but for those of us unlucky enough to experience it, we (almost) all agree that this is primarily a physiological problem that we cope with in sometimes unhealthy psychological ways.

We all have many questions that research will hopefully one day answer--Why do my sounds not bother me?  Why do I have occasional days when I can ignore trigger sounds?  Why don't we seem to notice the sounds of a new girlfriend or boyfriend?  It's a strange disorder.

[QUOTE=Gizmookie] However, I do take offense when people also blame me... I am not doing this on purpose either.  [/QUOTE]

So you are in a way angry about the fact that people don't accept you for who you are. Does this manifest itself in other ways? I mean, are you a person who is always trying to please people? Are you afraid of criticism? Are you feeling you are not in control of your life APART from the sound sensitivity? And please understand I am the last person who doesn't understand how it feels. I been there! For a long 8 years! And it all seemed to come from underlying psychological problems and self-hatred.

[QUOTE=Gizmookie]I do this as well.  In fact, I force myself to go to movies because I LOVE movies but hate the popcorn chomping.  I try, try, try everyday.   I'm sorry if I seem snippy... I've misplaced my ipod (my lifeline) an it's been a horrible sound day.  [/QUOTE]

Don't think you are the only one that is annoyed by popcorn chomping people in the movies. Even 'normal' people get annoyed by this. It is just intrusive. But do you ever take action? Do you ask the person if she or he could possibly eat a little more 'quiet'?

And what's this about the iPod? If you are using it to block out annoying sounds, it will just make you more sensitive over time!

Sumari,

Welcome to the board.  If what you’re describing is a brain wiring problem, wouldn’t it be a consistent brain wiring problem?  If I’m driving in my car and a hose goes bad, it doesn’t go bad some of the time but not other times.  I’m not clear why something that is offensive, invasive and extremely unpleasant in one context would not cause the same reaction in some other contexts. 

Can you say a little about any specific approaches you’ve taken so far to try to get to the bottom of this challenge both to understand what is happening to you and to attempt to ameliorate it, and for how long you tried each approach?

Rob

[QUOTE=Guflu]
So you are in a way angry about the fact that people don't accept you for who you are. [/QUOTE]

Dear All,

I have applied to the NIH to participate in the study of sound sensitivity and I thought some people in this group would also be interested in this study, and might want to find out more as info comes available.

At this time all I know is that there is interest in studying soft sound sensitivity at the NIH and there is the POSSIBILITY of there being a study in 6 months time. I don't know exactly which symptoms the NIH are interested in, they have not made any details available about that.

I've suffered from sensitivity to certain types of sounds for 39 years and I would do almost anything to find relief from this suffering. I live in Australia but according to the NIH guidelines, the fact that I'm not a US citizen does not disqualify me from participating if the study goes ahead.

I thought it was important to share this information as there are likely people in this group that will be interested. I asked Gizmooke to post a message on this group as I know she posts here often. I'm really quite sad that the prospect of a study has generated some harsh comments and accusations, and re-ignited the debate about definitions. I agree that this debate is INTERESTING but it isn't particularly helpful.  I really want to remind and encourage everyone to give the questions of definitions a lower priority than supporting one another and supporting research. 

We suffer enough due to our sound sensitivity! It's not a good feeling to come to a support group and be criticized. We need to support each other; isn't that why we are here?

The email address for info about the study is:
soundsensitivity@nidcd.nih.gov.

Hey Gizmookie!

I am not cured or something, I am now more in control of my reaction. When I feel that I am triggered by a sound, I can block the emotional response. I don't know how I did this, but I think the TRT for T and H has alot to do with it. Not being able to stand the sound of peoples voices or the outside world and not being able to listen to music anymore, I craved to have back my normal hearing, including the sounds that used to annoy me!

And now I am almost back to normal, the annoying sounds are not annoying anymore. I recognize the old feeling and can block the anger attack immediately.

[QUOTE=Ingrid] I'm really quite sad that the prospect of a study has generated some harsh comments and accusations, and re-ignited the debate about definitions. I agree that this debate is INTERESTING but it isn't particularly helpful.  [/QUOTE]

Dear Ingrid, what harsh comments and accusations are you talking about?
I am very glad there will be a study, and I do hope the outcome will give more insight in how to treat misophonia, sound sensitivity, whatever.

And I do think the definition is very important! For I have been very sound sensitive my whole life. Some sounds used to enrage me to tears and could make me desperate. But NOT soft sounds. All kinds of sounds!

So if the NIH would define it as a study to soft sound sensitivity I would be very confused and draw the conclusion it would not be about my challenge!

Guflu:  I am very happy you have learned how to be in more control!  I am trying to learn how to do that myself.  You also said that you are not cured... wouldn't it be great if we could be?  That is why we all are so excited about a possible study.  I also think it's important to define this condition.  You said that you are annoyed by all sounds and NOT soft sounds... this is why we think we are experienceing something different from Misophonia.  To me, Misophonia represents dislike of hearing a broad range of sounds, but for me personally the sounds that make me angry 'are' soft. This is why we want the NIH to get involved... to sort out all the mumbo jumbo and avoid any confusion :)

[QUOTE=Gizmookie]  You also said that you are not cured... wouldn't it be great if we could be? 
[/QUOTE]

But I feel like cured. For it is not an important issue in my life anymore!

Hi Gulfu,

I would have thought that this relates to you because you say you are sensitive to sounds including soft sounds. At this stage I don't think there is anything to  suggest that people who are sensitive to other things won't be studied.

If the NIH discovers that the cause of your sensitivity is actually different to the cause of the sensitivity in people who ONLY suffer from soft sounds, that could be useful helpful information, for you with your challenge, and for sufferers who are only sensitive to soft sounds. 

I really feel that until there is a study, we are in the dark together.  A study of anything in this area is likely to benefit all of us.

Ingrid.

Hi Debbie,

Thanks for all your contributions here. I read your posts with interest and I remember when I first joined you responded to my post in a really welcoming way, which was very much appreciated then and now.

I'm writing to try to clarify whether you have some inside information about the proposed study at the NIH?  I'm REALLY not trying to put you on the spot but in and earlier post you said that it seems... "I may be misunderstanding, but it seems that those this proposed study will focus on specifically experience rage, disgust, frustration, loss of concentraton when triggered by a narrow cluster of specific sounds and often visual cues". 

I am absolutely focussed on trying to get a study up, and I'm just curious if you have had some direct communication with the NIH, or with Dr. Marsha Johnston, which had led you to believe that this study might not be relevant to the people in this group. Or maybe that's not what you are suggesting. I don't understand what all the discussion here is about. I just assumed everyone here would support the study and be keen to apply.

I have made an application for the study, and received the same email from Dr. Carmer Brewer that Darlene has copied into this discussion thread, and I immediately thought that this study would apply to people with all sorts of soft sound sensitivity - particularly misophonia.

Cheers
(confused)
Ingrid.

Hi Rob,
I'm so NOT upset about hearing other perspectives I think you have misunderstood me. I am always happy to hear that people are experiencing relief from symptoms. I read this stuff with interest as I am looking for help for myself.

I have not been criticised personally in this group, but I rightly or wrongly did feel indirectly criticised and shocked, by some comments I've read here, which I think might have been directed at gizmooke - (not 100% sure and don't want to go back there).

Rob, the only thing that saddens me is that I thought people here would be really happy to know about the possibility of a study by the NIH. For me, this is the best chance of getting info. and finding relief, I'm saddened, but also just confused that some people with Misophonia don't think this applies to them. I just don't get it.

Ingrid.

Hi Ingrid, above all, i am very sorry to hear you don't qualify to participate in the research. Especially since you are suffering for so long.

I don't qualify either, since I am from the Netherlands. Plus misophonia is not a big deal in my life anymore.

[QUOTE=Ingrid] I have not been criticised personally in this group, but I rightly or wrongly did feel indirectly criticised and shocked, by some comments I've read here, which I think might have been directed at gizmooke - (not 100% sure and don't want to go back there). [/QUOTE]

I for one was just wanting to know if Gizmookie experienced any of the psychological problems that I had been experiencing. In order to help. And I think Gizmookie is a strong woman who can stand up for her own right :)

[QUOTE=Ingrid] Rob, the only thing that saddens me is that I thought people here would be really happy to know about the possibility of a study by the NIH. For me, this is the best chance of getting info. and finding relief, I'm saddened, but also just confused that some people with Misophonia don't think this applies to them. I just don't get it. Ingrid.

[/QUOTE] For one who has experienced pre-H and pre-T misophonia/sound sensitivity, and is now overcoming hyperacusis and is dealing with tinnitus and TTTS, I can tell that misophonia is a whole different ball game then Hyperacusis.

I also think the main problem lies in the fact that this board is constructed around a very clear protocol of how to deal with our challenge (hyperacusis and/or tinnitus). The other board i think is not (I haven't been there).

Is there any protocol or data on how to deal with misophonia? What do Jastreboff/Hazell say about this?

Hi Guflu,

I'm not sure where you get the idea that I don't qualify for the research????

The NIH guidelines say that you don't need to be a US citizen to participate.
I would have to travel far, and pay my own travel costs, but I would do that.

There is nothing here in Australia that I haven't already tried.
Take care.
Ingrid.

[QUOTE=Ingrid]Hi Guflu, I'm not sure where you get the idea that I don't qualify for the research???? The NIH guidelines say that you don't need to be a US citizen to participate. I would have to travel far, and pay my own travel costs, but I would do that. There is nothing here in Australia that I haven't already tried. Take care. Ingrid. [/QUOTE]

Oh you are right I am sorry, i misread it in your earlier post. I read that "not being a US citizen does not qualify me", but you wrote "does not disqualify" me. I am sorry for the misunderstanding.

So you can take part in the research. And will you if it goes through?

I was thinking and wondering if misophonia is kinda like tinnitus outside your head. Do you have tinnitus as well? I think I overcame my misophonia, because suddenly I had sounds in my head that made me angry and furious. And there is NO physical escape from that, e.g. going upstairs or sitting somewhere else. So I had to find a way to habituate to that. Something i am doing now. Making the sounds that I dislike neutral and therefor part of the subconsciouss hearing experience, in which the limbic system is not triggering the autonomic system anymore to fight or flee.

Ingrid,

My impression of this thread is folks are glad to hear the lines of communication are open with NIH. 

Rob

 

Guflu, what a great phrase!
[I]
I was thinking and wondering if misophonia is kinda like tinnitus outside your head.[/I]

I imagine it is more like hyperacusis outside your head. I imagine it is a similar pain to hyperacusis, only an emotional pain rather than a physical pain. Yours is a perfect metaphor.

-------------------------------


In addition, I wonder if the mechanism is more like that of PMS. It sounds an awful lot like that to me.

---------------------------------

I think the confusion here is that Ingrid is talking specifically about people with sensitivity to eating noises and such. Which is definitely not hyperacusis, but that kind of sound sensitivity is so rare and misunderstood that hyperacusis seems to be the closest equivalent, when in fact it is not at all. This confusion has come up many times on this board, so nobody should be surprised over it.

Ingrid, people with hyperacusis experience actual physical pain when exposed to unloud sounds. Those with misophonia experience emotional pain when exposed to very specific unloud sounds. That is the key difference, and it's a huge difference. I think you know that. The result is that people are referring to two different things in the same thread, and so everyone thinks the other doesn't know what they are talking about.

[QUOTE=peachoid12]Guflu, what a great phrase!
[I]
I was thinking and wondering if misophonia is kinda like tinnitus outside your head.[/I]

I imagine it is more like hyperacusis outside your head. I imagine it is a similar pain to hyperacusis, only an emotional pain rather than a physical pain. Yours is a perfect metaphor. [/QUOTE]

Hi all,
Thanks to those who have tried to clarify things for me - I appreciate your efforts I think I find part of my confusion could be that I don't suffer with some of the symptoms that other people here suffer from. I don't have tinnitus, hyperacusis, phonophobia. I relate to the description of misophonia in the introduction to the site.

and hi, Jackson, in response to your questions...
my sensitivity is mainly to eating sounds, but also, breathing, snoring, and other sounds that don't come up so often like finger nail clipping, teeth flossing, that sort of thing; and keyboard tapping, knitting needles, (have not read that one any where else).

I have never had my LDL's tested! It has never occurred to me or to any health professional that I've consulted over the past 39 years, to get them tested because I don't experience discomfort to loud sounds. In fact I love loud sounds, and despite my age (49) I still play in a very loud rock band, (think Nirvana, BJM, Velvets, Pixies, etc etc etc). Loudness discomfort levels seems like a foreign concept to me!

Well, actually, that might be beginning to change. I've noticed over the past year or so that I do need to cover my ears when I am walking past building sites, or road works where there is jack hammering, or pile driving or that sort of thing going on. and at the end of my son's indoor soccer games this very loud alarm goes off which does feel like it is going through me. It doesn't make me feel angry or like I need to get away, and it is very short but I what the clock to see when it's coming and cover my ears. But I think this is a fairly recent development.

Treatments I have tried of the past 39 years...
Talking therapies - for more years than you would probably care to know about! LOL!
CBT - this has been helpful for dealing with sound sensitivity and life in general, but has not helped my symptoms. I've probably done 3 x 6 months/1 hpw.
Hypnosis: 10 weeks. 40 mins / week (something like that)
Systematic Desensitisation w/ hypnosis: I forget how long that went for - it was a long, long time ago, and I don't recommend it. I think this made me worse.
EMDR: (rapid eye movement therapy): 5 sessions of about 15 minutes duration.
Various SSRI medications:
Lots of dietary modifications, exercise programs, general health, etc. etc. etc.
Self Medication: -I'm definitely not recommending this, but I did find some relief there. 'Tis a shame it tends to destroy most other areas of one's life - but this seemed worth it at the time -which was over 20 years ago!.

Basically, the only thing that has ever helped me with misophonia is avoiding the sounds that I can't tolerate. So, I don't go to movies if there is a full house, and I sit up the back row and if necessary move to avoid pop corn munchers.

I have become my own boss so I don't need to work in open plan or shared work spaces. I've had to quit excellent jobs over this.

My family need to accommodate my sound sensitivity - I'm very concious of not blaming them and explaining to the kids that it isn't due to anything they are doing wrong.

I hope this answers your questions. I would not be surprised to learn at my age that I have developed some kind of abnormality in my hearing levels - so I am not particularly drawn to the idea and expense of being thoroughly tested in that way - as my sensitivity to soft sounds just happened one morning at breakfast when I was aged 11 and has been with me ever since. My sensitivity to very loud noises is only about one year old, and I suspect is due to something else - probably age - possibly too many years of loud music. It isn't a problem - it is no big deal for me to cover my ears at those times and it passes quickly. I guess I am lucky in that respect

Cheers.
ingrid.

[QUOTE=Ingrid]I don't experience discomfort to loud sounds. In fact I love loud sounds..... Loudness discomfort levels seems like a foreign concept to me!
[/QUOTE]

Gizmookie, it is often the contrast in sound that is uncomfortable, so that is likely why you prefer to be surrounded by ambient sound.

Ingrid, I read things like this:[I]
"My sensitivity to very loud noises is only about one year old, and I suspect is due to something else - probably age - possibly too many years of loud music. It isn't a problem - it is no big deal for me to cover my ears at those times and it passes quickly. I guess I am lucky in that respect." [/I]

and I shudder. Nobody needs to be exposed to loud music. One day soon, it could easily be the case that your sensitivity to loud noise ramps up, and it will become a very big problem indeed. In that case, you will have hyperacusis as well as the sensitivity you now have -- soft sounds will cause physical pain as well as emotional pain -- and you will be in auditory hell worse than you can possibly imagine. Nobody should be playing in a loud band without ear protection. Please be more careful.

Dear Peachoid,
I *am* using sound protection these days with loud music, but it doesn't hurt to be reminded sometimes. So thanks for that, I will be even more careful, I am really grateful that I don't have tinnitus and hyperacusis.

But I have to say, I love loud music, and I think, with appropriate ear protection and self care,  it is actually GOOD for me. Aside from any other benefits, it helps to mask all the sounds I can't tolerate.

Regards
Ingrid.

Rob,

I think it's a brain wiring problem, because I have the reaction no matter the circumstance.  My reaction is calmed within a second or two if I realize the sound is coming from a benign source.  For example, if I hear a sniffle-like noise I freeze, my heart rate increases, and I become hyperviligant.  If I then realize it was only the sound of a newspaper page being turned, I calm immediately.  If it's a sniffle, I continue on high alert and keep listening for more offensive noise.  Why a sniffle is malevolent and a newspaper rustle benign, I don't know.  It's crazy, it's ridiculous, but it's how my brain is wired.  It has NOTHING to do with self-hatred or psychological issues.  Any psychological issues have been added on as coping mechanisms, I'm 99% certain.  It's just the way my brain works.  I'm not clear why or how--it's just the way it is.  For many many years I thought I was alone, but it turns out there are others who have the same strange reaction to certain noises.

I've tried a lot of nutritional therapies to ameliorate the condition.  My latest experiment has been with vitamin b-6 and zinc, following the recommendations of naturopaths identifying pyrroluria as a possible source of mental issues including sound sensitivity.  I have tried omega-3, niacin, magnesium, and other vitamins and minerals.  I believe that omega-3, b-6, and zinc have a positive effect on my overall sensitivity to noise.  (I'm not only bothered by eating and sniffling--I have a problem with ambient noise as well, like traffic and dog barking.)

I think ear plug use makes the problem worse, and calming sounds like music or water falling make it somewhat better.  The best therapy of all is an extended amount of time free of trigger sounds.  Days and days of sniffle-, throat-clearing-, dog bark-free days--heaven.

I can't be more specific on how long I've tried different therapies--I've tried different things off and on for many years.  I have dealt with this condition for almost 30 years.  I've tried the latest combination of vitamins for about 3 months.

It's been extremely interesting reading the posts of others on the sound sensitivity site.  Most of them could have been written by me.  We share so much, and most of us have had the same experience of feeling unique for most of our lives.  From reading posts, I've discovered that selective sound sensitivity (this type of misophonia) is probably:

genetic
related to hormones
a primitive brain wiring problem
difficult to live with and creates social and psychological problems, especially social withdrawal
related to OCD and possibly ADHD and autism
not related to early trauma or childhood issues

I don't have hyperacusis, although I have had problems with tinnitus off an on throughout my life, and I prefer a noisy environment.  At home, I run fans and radios like crazy, because they drown out other noises.

A quick observation.  If you, Guflu, are not bothered by your noise problems anymore, why are you commenting on this issue?   "But I feel like cured. For it is not an important issue in my life anymore!"  Do you have some wisdom to impart to those of us still suffering?  Please, do share.

Misophonia is NOT "tinnitus outside your head".  Tinnitus arises from nowhere, has no apparent cause, and has no other person involved.  I can't stand noises people make when they're sick or are going about certain bodily functions--that's quite different from tinnitus.  Or perhaps our selective sound sensitivity really is different from misophonia and deserves special attention.

[QUOTE=sumari]If I hear a sniffle-like noise I freeze, my heart rate increases, and I become hyperviligant.  If I then realize it was only the sound of a newspaper page being turned, I calm immediately.  If it's a sniffle, I continue on high alert and keep listening for more offensive noise. [/QUOTE]

Exactly. And I have now also learned to calm immediately if it's a human sniffle. Or a breathing sound, or eating sound. I so recognize this high alert status. But I just found ways to get rid of it immediately, without letting it ruin my state of being.

[QUOTE=sumari] It has NOTHING to do with self-hatred or psychological issues.  Any psychological issues have been added on as coping mechanisms, I'm 99% certain.  It's just the way my brain works.  I'm not clear why or how--it's just the way it is.  [/QUOTE]

It is very well known that any coping mechanism that keeps the body alive is recognized to the brain as a valuable coping mechanism. So a coping mechanism that would make you suffer for the rest of your life would still be a coping mechanism, since it would keep you alive. And that's all that matters. For me it is very clear that my issues are related to my self image and dealing with life. Now I have found more balance and insight in how I work, I can deal with these issues much better. And 99% is not 100% is it? [/QUOTE]


[QUOTE=sumari]If you, Guflu, are not bothered by your noise problems anymore, why are you commenting on this issue?   "But I feel like cured. For it is not an important issue in my life anymore!"  Do you have some wisdom to impart to those of us still suffering?  Please, do share. [/QUOTE]

Dear Sumari, that's what we do here. We share our stories if we have found ways to cope with our problems and challenges, in order to be helpful to one another. NOT to pick on each other. I really don't understand why you would imply that I don't have the right to comment on this subject. I still have misophonia, I just found ways to deal with it. And I would assume that is something all of you would like to hear. That it IS possible to feel 'like cured'. And that means, being able to lead a normal life without the misophonia interfering in the things I wanna do, like going to the movies, or eating diner with friends.

[QUOTE]Misophonia is NOT "tinnitus outside your head".  Tinnitus arises from nowhere, has no apparent cause, and has no other person involved.  I can't stand noises people make when they're sick or are going about certain bodily functions--that's quite different from tinnitus.  Or perhaps our selective sound sensitivity really is different from misophonia and deserves special attention. [/QUOTE]

My reaction to certain sounds was the same reaction to the tinnitus I developed recently. The sound is intrusive, a threat, my auditory system is aware of the sound, my limbic system reaction emotionally to the sound and triggers the autonomic system to fight and flee.

So in my case it was the same as tinnitus outside my head. I just never found ways to cope with it. Until I head the tinnitus in my head and there was no escape anymore. It was either 'DEAL with it' or 'DIE'.

Guflu,

I didn't mean to imply you don't have a right to comment here.  I genuinely would like to know how you've come to feel cured.  And I was wondering if I was feeling cured, would I still participate in these discussions.  I don't know, but it's good to have someone here who offers hope, that's for sure.  I was feeling a little feisty when I was writing last night, because it almost sounds like you're saying "I got over it, why can't you?"  And "get over it" is the single most unwelcome bit of advice we've gotten over many years of suffering with this.  I could have been reading too much into your posts, I'm sorry.  I understand that you don't really know why you've gotten better, but since you've been experiencing tinnitus, the other trigger sounds don't bother you as much.  It sounds like tinnitus is both a blessing and a curse for you.

Rob,

I'm working on reframing or reclassifying my trigger sound sources.  Like if my kids annoy me with a throat-clearing sound, I immediately try to picture a happy time we've had recently or a funny thing that I particularly love about them.  I try to remember/imagine that all those jets that fly over our house are doing important work, transporting people, and how I'd love to take a trip around the world someday.  Just as the newspaper rustle doesn't bother me, hopefully I can retrain myself to be okay with sniffling.  It's a hard one, though--my mind leaps straight to "Just get a tissue, for gods sake!"  I carry tissues around to pass out, but I've never had the guts to give one to a stranger.  I do everything in my power to avoid confrontations.  Maybe I should get over that.

It's interesting about the habituated vs non-habituated tinnitus.  I've had a mild case of tinnitus off and on, and it doesn't really bother me.  There are sounds that people make that don't bother me, and I don't know why--they should, considering how many other, similar sounds do.  Up until a few weeks ago, eating sounds hadn't bothered me in years, and one day I started noticing my family's smacks.  It's not a major trigger, but it bugs me a little.  I have no idea why I could ignore those sounds for so long, then one day--BAM--they bother me.  My brain has classified them as dangerous instead of neutral.  Why?  I know they're not dangerous.  That's another reason I think it's a primitive brain issue.  My thinking brain knows that gum smackers pose no threat to me, but the sound is perceived at some deep level as dangerous.  Weird.  Weird.  Weird.

I can see Guflu's point about misophonia being like tinnitus outside your head, but the major difference is the psychological and social disruption that occurs when people are involved.  People are the usual trigger, so our relationships suffer.  As far as the mechanism involved, it's similar.  In misophonia, the brain is put on high alert by a sound, just as in intrusive tinnitus.  Just as Rob said, my brain is ever vigilant for sounds that might bother me, so I'm in a constant state of stress, especially in certain situations.  I can't go to the movies without taking an anti-anxiety medication, because of the anticipation of the noises my fellow movie-goers MIGHT make.  Anti-anxieties don't negate the reaction, but they calm the anticipatory stress.

My situation has improved somewhat with nutritional therapy, as I said.  I don't usually feel in a constant hyper-vigilant state.  I'm better able to control the terrible annoyance, but I still feel it.  I heard a woman in a store yesterday sniff loudly, and I was on alert.  I heard it again, and I was concerned.  I was waiting in line, and I starting thinking about leaving my purchases there and bolting.  I talked myself into staying, knowing that it would probably be just a few minutes.  (Luckily, she stopped after just a few more sniffs.)  There have been times when I would have just left--when I just couldn't stand to hear it at all.  I left a store not long ago, because they were demonstrating some giant speakers, and the bass was so disruptive to my system that I felt almost sick.  I asked them to turn them down, but they refused.  My great fear is being stuck somewhere, exposed to a trigger noise that won't stop.  I don't have many useful coping mechanisms in that sort of situation.  Once the reaction is in full swing, it's very difficult to reframe a noise as neutral.

Another interesting thing I've noticed:  I begin to fear certain places if I've been exposed to trigger noises there consistently over a period of time.  We had a neighbor's dog that barked loudly just outside our bedroom window.  I barely went in that room for months, and if I did, I was on alert for the dog and got out as fast as I could.  I'm beginning to associate craft stores with trigger noises, because the last few times I've been to them, there have been sniffers and throat-clearers, and those stores are so quiet and open, you can hear everything.  I've been afraid of libraries for a long time, which is too bad, because I love books.  So there's an element of phobia--I'm not afraid of the sounds, though.  I'm afraid they'll occur, and I'll have to go through the whole fight-or-flight, high-alert, stress reaction.  I just want to avoid that feeling.  I don't know if that makes sense--the distinction between fear of sound and fear of having to hear it and be annoyed.

One more observation in this ridiculously long post.  You all have got me thinking differently about this.  I have no idea what "normal" people find annoying, and what they can ignore.  I feel like every noise that bugs me is my misophonia acting up, and I have to calm down, etc.  But even my very noise-insensitive husband has his quirks.  He hates hearing people crunch chips in the next cubicle, for example.  Not many people enjoy hearing loud bass from passing cars.  Most of my trigger noises are things that people generally don't like much but aren't overwhelmed by, or they usually don't notice.  People seem to not notice sniffling too much, but maybe they do and they just don't say anything.  I remember a survey in our newspaper a few years that asked people to report their pet peeves.  The number one answer was loud home and car stereos.  Many of the others had to do with noise as well.  A New York city hotline was set up a few years ago for non-emergency police calls, and something like 80% of the calls were noise complaints.  It's not uncommon to be irritated by noise.  The difference really is how much it impacts our lives, how much we change our behavior to avoid noise, and the feelings that uncontrollably well up in us when we get irritated.