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DanMalcore

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Dan
Registered: 04/25/05
Posts: 1,177
Reply with quote  #1 

One day a professor of a university decided to defy his pupils.

He asked:

Did God create everything that exists?

A student answered bravely:

Yes, He did!

Everything?  asked the teacher.

Yes, everything.  Was the answer of the student.

In this case then, God also created evil, correct? Because evil exists - said the teacher.

To that the student had no answer and remained in silence.

Suddenly, another student raised his hand and asked:

May I ask you a question, professor?

Of course, was the professor's answer.

Does cold exist?

Of course, answered the professor.  Did you never feel cold?

Actually, sir, cold does not exist.  According to studies in Physics cold is the total and complete absence of heat.  An object can only be studied if it has and transmits energy and it is the heat of an object that transmits it's energy.  Without heat, the objects are inert, incapable to react.  But cold does not exist.  We created the term cold to explain the lack of heat.  And darkness? continued the student. Does it exist?

It exists, replied the professor.

Again, you're wrong sir, darkness is the total absence of light.  You can study light and brightness, but not darkness.  The prism of Nichols shows the variety of different colors in which the light can be decomposed according to the longitude of the waves.  Darkness is the term we created to explain the total absence of light.  And finally the student asked: And evil, sir, does evil exist?

Yes, evil does exist said the professor.

God did not create evil.  Evil is the absence of love and faith.  Love and faith are like heat and light.  They exist.  Without love and faith there is evil.

The professor had no response.

The student's name was Albert Einstein.

 

Albert Einstein's clarity on the terms cold and darkness were important distinctions and ones that cannot be ignored.  They affect how we view those terms and how we deal with them.

 

Now, let's turn to the use of the terms misophonia and 4S (aka Soft Sound Sensitivity Syndrome).  Let's say I like carrots and you don't.  Is that a problem?  No, it is not a problem.  After all I can remove carrots from my diet and substitute them with other healthy vegetables.  No problem.  In other words I can ignore carrots in my diet.  No harm done and I can carry on with life and not be affected by any negative consequences.  Life remains good.

 

Now, let's say I don't like the sound of other people eating.  I have no problem with the sound of my own eating but I can't stand to be in the company of other people eating.  Is that a problem?  Yes, it is a problem because eating is more than a function of nourishing our body.  It is also a social event where people share their feelings about one another, talk about their hopes and dreams and in the hectic world we live in it is one of the few times in the day that we actually spend time with the ones we love.  It is not something that can be avoided without feeling lonely and isolated and ultimately depressed and hopeless.  It is a problem and life is not good this way.  However, what kind of problem is it?

 

If we were to say it is a problem with being sensitive to the sound of people eating then it would fall into the field of hearing/audiology.  However, the sound of other people eating is not the problem but rather the problem exists in the emotion generated from the sound of other people eating. This is very different.

 

So the real problem is not in the fact that the sufferer is sensitive to the sound which would be a hearing/audiological phenomena but rather the fact the individual does not like the sound.  Disliking the sound is not a hearing problem but an emotional response which needs to be addressed so we can carry on with life enjoying the company of our family and friends.  Disliking the sound is misophonia.  The trigger may very well be the sound but the problem really lies in the emotion generated from seeing AND hearing OTHER people eat.  Let us be clear about that!

 

To pursue diagnosis and treatment of misophonia with the term 4S is a disservice to the people suffering from this problem.  I know this is a popular topic and we must frame it correctly. 

 

Just my views...

 

Dan

Johnloudb

Registered: 07/31/09
Posts: 1,735
Reply with quote  #2 
Dan, Thanks for sharing that - very well thought out! I completely agree with you. I haven't had much dislike of sound so much, as I've had phonobobia and hyperacusis. I do have sensitivity to many soft sounds, but not so much as I used to. Mostly quiet fans or clicking/ticking clocks or timers. This was a result of my fear and avoidance of these sounds, not so much dislike. But, phonophobia is also variant of misophonia as I understand.

I've also made very good progress with all my sensitivities soft, loud or otherwise doing TRT.

Most doctors acknowledge that the body works on feedback, yet some have real trouble with the Jastreboff model. So, why shouldn't the ears involve feedback like the eyes and other sensory systems?

I saw a story on TV about a woman who developed a sensitivity to certain smells. She got rid of anything with fragrance in her home and couldn't go out much. Fear of smells I guess.


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LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #3 

Did God create everything that exists?

 

I like that never read that one before..

So that was by Albert Einstein...

From another angle it goes ..

God created humans, angels and cherubs with free will to choose..

as not being robots to  be programmed , but capabile to really really love and have faith unlike a robot...

Which would not be true felt love at all..

It would be worthless to God...

And also what comes with free will is the capability  to be able to "choose evil " such as Lucifer did.

Lucifer created the evil in this world the tempter..

And all us humans fell behind...

And thats why their is evil in this world as the rest of the story goes..

Interesting.... 

There is an interesting DVD out just on this subject ..

 

The Cosmic Conflict Origin of Evil DVD.
Awesome Video!
I got the DVD at home..

This is just a trailer..

THIS IS A " VIDEO " SO TURN THE VOLUME DOWN OR OFF>>>

DEPENDING ON ONE'S HYPERACUSIS>>> 

 

 

 

Plus for anybody thats interested in this subject of course...  

But I like that...

 

God did not create evil.  Evil is the absence of love and faith. 

Love and faith are like heat and light.  They exist. 

Without love and faith there is evil.

 

Plus....

I mostly had phonophobia with my H not M, or more like..

Developed a case of phonophobia because of my H..

H can do that to ya.. 

 

Plus I just read this interesting as well ... 

Fear of smells ...

Either that or she was highly allergic to them and broke out in hives or developed a bad headache or something.

At my daughters school there is a teacher that is highly allergic and we had to sign a form that my daughter..

would not wear perfumes ect in her class..

Cause it could make her sick. 

But I guess a person could develop a fear to anything based on ones life expirence.. 

One that I thought would be strange is a fear of ballons expecially if one doesn't have H.

It's on one of my kids videos by the naked brothers band..

Comedy....

It brought back warm & fuzzy pictures of the fear of a popping ballon with bad H..

Ouch!

Whats a childrens birthday party without ballons???

Less colorful of course.

 

Stay Well... (((( Smiles )))) 


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Lynn
Johnloudb

Registered: 07/31/09
Posts: 1,735
Reply with quote  #4 
Quote:
Fear of smells ...
Either that or she was highly allergic to them and broke out in hives or developed a bad headache or something.


She wasn't allergic ... it just came on ... sensitivity of smell is what her doctor called it. It just got where more and more smells bothered her, to the point she wouldn't leave her home and ventured outdoors very seldom. She didn't like the odor of her car or any odors for that matter. Don't remember what problems it caused her. It was some time ago I saw that.


Quote:
But I guess a person could develop a fear to anything based on ones life expirence..


Yeah, I've even had aversion to relaxation exercises (those that my TRT doctor suggested anyway). They'd just make me stressed out. Not that I was phobic of them, I just wasn't used to doing them, and I had increased sensitivity to just about everything as a result of my hyperacusis and phonophobia.


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~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #5 
Hi John, (((( Smiles))))

Thats interesting..
I wonder what it smelled like or felt like to her to cause her to become fearful of it..
Or how she expirenced things it must be some sort of neurological glitch or something..
So you don't remember why she became that way..
Wouldn't it be interesting to get inside someone else's head with theses types of disorders..
to see how it feels to them in expirenceing things the way they do..
Besides them trying to explain it to us..
Like the wonderful expirence of H then others could know how it really really feels like we do...

Although the most important thing is trying to get better but more people would have more empathy for others expecially family members with H ..
But..
I love smells expecially vanilla and lavender and flowers that would be a hard one for me to develop something awful such as that..
Though other smells in the world I could do without expecially the ones that may be forgotten about like in the back of the fridge.. (((( Smiles ))))

But my daughters teacher must really got a bad case of it as we had to sign that form but my daughter doesn't wear perfume ect anyway..
Plus...
I was just reading an interesting magazine and did you know the first commercial matches were called " Lucifers " by Samuel Jones..
I didn't make this up it's for real's..
Now thats scarry too know but it's true..

Stay Well..


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Lynn
Rob

Registered: 05/02/05
Posts: 3,667
Reply with quote  #6 

Dan writes --

If we were to say it is a problem with being sensitive to the sound of people eating then it would fall into the field of hearing/audiology.  However, the sound of other people eating is not the problem but rather the problem exists in the emotion generated from the sound of other people eating. This is very different.
 
So the real problem is not in the fact that the sufferer is sensitive to the sound which would be a hearing/audiological phenomena but rather the fact the individual does not like the sound.  Disliking the sound is not a hearing problem but an emotional response which needs to be addressed so we can carry on with life enjoying the company of our family and friends.  Disliking the sound is misophonia.  The trigger may very well be the sound but the problem really lies in the emotion generated from seeing AND hearing OTHER people eat.  Let us be clear about that!
 
To pursue diagnosis and treatment of misophonia with the term 4S is a disservice to the people suffering from this problem.  I know this is a popular topic and we must frame it correctly.  
 
...........
 
Good post, Dan.  I agree with you.  Like you, I don't think the challenge is audiological either.  As you say, the challenge has to do with the emotion generated by hearing a given sound or sounds.  That's the thing to deal with.  I also agree with you that using the 4S term is a disservice to people who suffer from this challenge.
 
Misophonia involves a conditioned response on the part of patients to some sounds.  Unless the conditioned response is addressed, the misophonia cannot be effectively treated.  That is why trying to treat individuals who suffer from this condition with wearable sound generators which emit broadband noise will not effectively treat the condition.   

Gizmookie

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Registered: 06/24/08
Posts: 342
Reply with quote  #7 
I'm staying out of this one...


beanbrown

Registered: 09/10/09
Posts: 22
Reply with quote  #8 
I've had a very similar experience with most as far as misophonia, 4S and eating sounds.  I think it's a good point you make also, Dan.

I'm wondering if you have a proposal to the reconditioning of the emotional response? 

I have accidentally stumbled into something I don't understand yet, and your post made me think that I may be accidentally reconditioning myself?  I'm just not sure...


DrJ

Registered: 10/28/08
Posts: 222
Reply with quote  #9 
I am interested to respond to your post, Dan.  However, I need to feel comfortable in bringing, perhaps, a slightly different point of view on the subject, perhaps a Platonic slant on the subject.

Dr J

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beanbrown

Registered: 09/10/09
Posts: 22
Reply with quote  #10 
To extend the Einstein analogy a bit, I think there is room for constructive discussion?

Einstein: God does not play dice with the Universe.
Niels Bohr: Stop telling god what to do!

For me, I'd be interested in what you have to say, although if this really is not the place, please feel free to PM me, Dr. J.


LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #11 
Hi Darlene, (((( Smiles ))))

Me too..

I just thought it was really interesting that Einstein said that..
And you know how I feel about things such as that..
Thats just how I am...
As you know by now of course.

Try to Stay Well... ((( Smiles )))

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Lynn
DanMalcore

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Dan
Registered: 04/25/05
Posts: 1,177
Reply with quote  #12 
DrJ stated:
Quote:
I am interested to respond to your post, Dan.  However, I need to feel comfortable in bringing, perhaps, a slightly different point of view on the subject, perhaps a Platonic slant on the subject. 


DrJ,
I am most interested to hear your comments but you please understand that others may have other points of view which may be different than yours.  You should not feel intimidated by that.  As I have said many times before, we are all on a journey looking for answers...
Dan
Peter

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Registered: 05/27/05
Posts: 65
Reply with quote  #13 
Quote:
Originally Posted by DanMalcore

 

If we were to say it is a problem with being sensitive to the sound of people eating then it would fall into the field of hearing/audiology.  However, the sound of other people eating is not the problem but rather the problem exists in the emotion generated from the sound of other people eating. This is very different.

 

So the real problem is not in the fact that the sufferer is sensitive to the sound which would be a hearing/audiological phenomena but rather the fact the individual does not like the sound.  Disliking the sound is not a hearing problem but an emotional response which needs to be addressed so we can carry on with life enjoying the company of our family and friends.  Disliking the sound is misophonia.  The trigger may very well be the sound but the problem really lies in the emotion generated from seeing AND hearing OTHER people eat.  Let us be clear about that!

 

Interesting post. However, another analogy would be to take the example of nuts.

 

The majority of people either like nuts or have no 'issue' with them. They can eat them and have no adverse reactions.

 

Some people dislike nuts - the taste, the texture or some other reason means that they avoid eating nuts if they can because otherwise they have an adverse reaction. Maybe later in life they change their opinions and decide that they can tolerate them; even later they come to like them. That would be analogous to a psychological dislike to sound that could be addressed by retraining thought processes. This would be misophonia.

 

Other people have an allergy to nuts. They may or may not like the taste, but if they eat them an adverse reaction is produced that they can do nothing about. They alter their lives to avoid situations where this reaction can be produced, checking the things they buy for the presence of nuts, lessening the risk to them (although there may be situations where it is unavoidable because of lack of awareness by the producers). This would be analogous to a physiological reaction to sound rather than psychological, which could not be addressed by retraining thought processes. This would be what some people prefer to label 4S.

 

I am not trying to say that there is definitely a difference between the two (although personally I believe that there is). This is just putting forward a different viewpoint, and I think we do research into all our conditions a disservice if the possibility that there is a difference between the two is not accepted.

 

DanMalcore

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Dan
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Posts: 1,177
Reply with quote  #14 

Peter

Thanks for your comments.  Ironically I am allergic to nuts.  In fact, if someone is cooking with nuts I get a reaction.  I have spent time in emergency rooms even though restaurant waiters have insisted a dessert had no nuts only to discover they were wrong.

Quote:
Some people dislike nuts - the taste, the texture or some other reason means that they avoid eating nuts if they can because otherwise they have an adverse reaction. Maybe later in life they change their opinions and decide that they can tolerate them; even later they come to like them. That would be analogous to a psychological dislike to sound that could be addressed by retraining thought processes. This would be misophonia. 


Very good point.  With the proper diagnosis and treatment of misophonia the psychological component of misophonia can be disarmed and the patient can no longer be affected.  I do not believe there is a physiological component to misophonia and have never heard anyone suggest that there is.

Quote:
Other people have an allergy to nuts. They may or may not like the taste, but if they eat them an adverse reaction is produced that they can do nothing about. They alter their lives to avoid situations where this reaction can be produced, checking the things they buy for the presence of nuts, lessening the risk to them (although there may be situations where it is unavoidable because of lack of awareness by the producers). This would be analogous to a physiological reaction to sound rather than psychological, which could not be addressed by retraining thought processes. This would be what some people prefer to label 4S. 


This is were we disagree.  This is not misophonia because with misophonia there IS something they can do about it.  Patients that are afflicted solely with misophonia (i.e. have no problem with any sounds except the SIGHT and SOUND of others eathing - not themselves eating - but OTHERS eating) usually produce a normal audiogram with normal LDL's.  If it were to the contrary one could argue that there is a physiological component here.   In my view this is not physiological but psychological.  And, while we are talking about nuts this is no way would suggest that such a patient is a mental case.  That, in fact, I believe is one reason why 4S people rebuke the thought of this being psychological in nature.  This is merely suggesting that the problem is one that needs to be resolved by some very specialized psychological treatnent (i.e. CBT).

This is the kind of discussion I like on this topic.  In no way am I suggesting I am right on this, these are just my views and I appreciate anyone who wants to jump in here.  Thanks Peter...

Nutty Dan

DrJ

Registered: 10/28/08
Posts: 222
Reply with quote  #15 
To illuminate a very important point, Dan.

Ability to hear (measured by an audiogram) and dynamce range of tolerances (measured by the LDL test for hyperacusis or recruitment),  has nothing to do with the diagnosis of either misophonia or 4S.

I believe it very short sighted and prejudicial to decide based on very limited information, that a perception or a symptom or a condition or a reaction is either psychological OR physiologic.

It was less than 125 years ago that schizophrenics were categorized as purely psycholigcally impaired, then it was 'discovered' that they have serious issues with brain chemistry dysfunction, and for many, using particular chemical combination, they become 'normal'.

I have attempted to keep an open mind to what might emerge during investigative research or advanced evaluation protocols, because, to assign this large group of people a psychological condition, well, it is not yet the time to do such and the whole subject deserves further investigation by trained researchers.

To say that is one has a psychological condition versus a physiological condition will strongly affect the interest or desire of the person to 'recover' or 'improve', simply does not make sense to me. 

Dozens if not hundreds of these people with 4S have been evaluated and treated by top psychologists and psychiatrists in the country and I have mentioned this many times, don't you imagine that some of them should have found substantial, persistent improvement as a consequence?

Dan, some of the people with 4S ARE psycholigsts and MDs. 

I would love to hear your reasoning as to why 4S and perhaps misophonia are both somehow only a 'psychological' problem.....

Dr. J

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Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #16 
Hi all, I am one who has long suggested that this condition is physical vs. phychological.
Just like with the electrode studies in which implanted electrodes can instantly stimulate rage or pleasure depending on which region they activate, I believe that the rage centers within the brains of people with "4S" are stimulated without the involvement of brain regions governing thought.
The fact that only other people or specific peoples' sounds trigger the response does not take away from the possibility of this.
When the conditions are met (the interpretation of a non-self-controlled sound of certain natures originating from specific sources,) the response occurs.
To me those with 4S seem similar to those who wake up after a bout of strep throat or meningitis with sudden, obsessive attention to certain everyday concepts or stimuli.
For example kids can suddenly develop an obsession with the number 9, trying to avoid thinking about or seeing this number and then seeing and thinking about only this number, with a horrific emotional sensation whenever this number enters his or her consciousness.
The obsession could be about a dread disease such as cancer, or about accidentally harming someone,the common link being extreme and inherent unpleasantness of emotion when the thought is stimulated.
Like the psychologically normal kids who wake up with this condition after certain pathogens have 'attacked' a specific associative region of their brains,
Kids with "4S" wake with these symptoms suddenly.
Some kids with the strange, sudden obsessions recover from these neurological affects of pathogen, others do not or do not fully and must learn to 'think through' them.
Because only the brain region linking the cognitive association(s) with the limbic response are involved and NOT intelligence or reasoning abilities, the individual can attempt to 'manually' shift the reflex-like hyperfocus of the brain to other thoughts.
Yet to the extent that the neurological damage remains, the reflex remains and the conscious efforts, easier as they may become, must continue.
Without awareness and vigalence towards 'thought stopping,' the symptoms tend to proliferate.
TREATMENT is where 'conditioning' component may come in, NOT in the onset of the disorder.
And the disorder itself is physical, not psychological, because it onsets, suddenly, due to physical changes in a specific brain function which has been altered due to an autoimmune response in the presence of strep bacteria or meningitis.
I can not prove that "4S" is like this but there are so many similarites.
In the strep response sudden obsessive brain condition, apparent gentic vulnerabilities exist.
With '4S,' genetic relationships also seem common.
Both conditions onset suddenly, usually in a window of ages during childhood.
Both conditions involve unwanted hyper-focus/obsession to a common everyday stimulus.
Both conditions are described by sufferers as embarrasing and extremely distressing because of non-socially acceptable, inherently unpleasant, extreme emotional responses involved.
Both conditions involve the preservation of self-control despite extreme emotions.
Reasoning ability & a sense of being 'crazy' due to the perceived craziness (non-sensical nature) of the symtoms are common to both conditions.
Both conditions tend to become more acute with close family or friends and at home.
Symptoms of both conditions vary in intensity depending on shifting co-factors which can make seemingly similar stimuli more or less likely to trigger the response depending on who, when or where the stimulus is associated with.
I could go on listing parallels.
To me the parallels are compelling.
"4S" does NOT seem audiological to me.
Nor does it seem psychological.
It seems as physical as a broken arm yet based in the brain.
It may be somewhat addressable by cognitive behavioral therapy (CBT) but as a management tool, not a cure.

This is my 2ยข.

Debbie

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Johnloudb

Registered: 07/31/09
Posts: 1,735
Reply with quote  #17 
Quote:
Ability to hear (measured by an audiogram) and dynamce range of tolerances (measured by the LDL test for hyperacusis or recruitment), has nothing to do with the diagnosis of either misophonia or 4S.


I don't think Dan said that it did.

But 4S is sensitivity to soft sound syndrome. The name implies sensitvity, but this can't be measured?

There seems to be no distinction definition wise between 4S and misophonia. It also seems the Conditions in which the sound is heard does matter with 4S, just as with misophonia. Conditioned Reflexes.

Quote:
Dozens if not hundreds of these people with 4S have been evaluated and treated by top psychologists and psychiatrists in the country and I have mentioned this many times, don't you imagine that some of them should have found substantial, persistent improvement as a consequence?


A psychologist/psychiatrist won't help with tinnitus, hyperacusis, misophonia, or global brain sensitivity. Except maybe offer meds. My psychologist diagnosed me as OCD. I had to explain my condition to her! A psychiatrist said "What you think I could do for you?!" but offered anti-depressants anyway.

Reversing conditioned reflexes is difficult and takes a long time. It also requires the openness the patient to do psychological work on themselves and the belief that they can make progress.

Quote:
To say that is one has a psychological condition versus a physiological condition will strongly affect the interest or desire of the person to 'recover' or 'improve', simply does not make sense to me.


It's not just psychological. It's a neurophysiological problem, but requires some psychological work.

Depends. If a person is told they have 4S and is permanent, it could keep them from finding help. What treatments are there for 4S that are different than treatment for misophonia. Medication?

People are all different and maybe if they haven't had success dealing with this through psychological means they should try medications. But, I think it's very wrong to diagnose someone as 4S just because they haven't had success with treatments for misophonia. How does that help?

Reversing conditioned reflexes is not easy, it's very difficult and can take years. There are ways to increase the plasticity of the brain. One is an antibiotic used for treating PTSD. Enjoyment, optomism, good thoughts also increase plasticity of the brain, and experiencing these sounds in positive circumstances can help change these beliefs.

Some local schools are using a computer game to increase brain plasticity, by making learning fun. Helps them learn. Learning, or Relearning is the key I think.


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Fang

Registered: 04/16/09
Posts: 9
Reply with quote  #18 

Perhaps there isn't even a consensus on what it means for a condition to be purely psychological and the distinction of "psychological" and "physiological" may not be clear-cut. Minds supervene on brains, in this sense every psychological phenomenon has a physiological basis. If a problem can be FULLY remedied by making conscious efforts thinking good thoughts, by trying psycho-cognitive therapies, by using the power of "mind over matter" AlONE,  mediated through neural plasticity, then I would call that purely psychological. Other than that there must be some physiological malfunction beyond one's control, which can not be fixed without seeking other means.

DanMalcore

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Dan
Registered: 04/25/05
Posts: 1,177
Reply with quote  #19 
DrJ

Thank you for contributing here.  Let's back track a little first...
Quote:
To illuminate a very important point 

I would still appreciate it if you could illuminate the difference you see between 4S and misophonia. 
Quote:
Ability to hear (measured by an audiogram) and dynamic range of tolerances (measured by the LDL test for hyperacusis or recruitment),  has nothing to do with the diagnosis of either misophonia or 4S. 

I disagree.  I think it is very important that a patient who verbalizes their concerns over sound 'bites' that are not loud and but they strongly dislike must have their LDL's tested.  If for no other reason it would discount whether their problem is hyperacusis or misophonia.  What kind of testing do you do on a patient with 'suspected' misophonia?
Quote:
I have attempted to keep an open mind to what might emerge during investigative research or advanced evaluation protocols, because, to assign this large group of people a psychological condition, well, it is not yet the time to do such and the whole subject deserves further investigation by trained researchers. To say that is one has a psychological condition versus a physiological condition will strongly affect the interest or desire of the person to 'recover' or 'improve', simply does not make sense to me.  

I have said time and time again DrJ that we are on a journey here.  Hopefully every stone will be turned over and looked at carefully.  This is my current view on misophonia and I welcome everyone's thoughts on this.  This is not a topic where one could say "How dare you think that".  Absolutley not.  You don't have to have a clinical background to investigate something that is near and dear to many people's hearts here.  My suggestion is that this is psychological in nature.  I have explained why I feel that way and welcome anyone to express their view.  Neither you or I own this investigation.
Quote:
Dozens if not hundreds of these people with 4S have been evaluated and treated by top psychologists and psychiatrists in the country and I have mentioned this many times, don't you imagine that some of them should have found substantial, persistent improvement as a consequence? Dan, some of the people with 4S ARE psycholigsts and MDs. 

Several points here.  First of all you are one of the only clinicians in the world using the term 4S.  The reasons for that elude me and it is better that I end it at that.  This roadblocks the clinican discussion of this problem among all people in the medical community.  Particularly in view of the fact that almost all are clueless about misophonia.  Based on that alone, they would be clueless on how to proceed with such a patient.  What treatment do you currently offer misophonia patients? 
Quote:
I would love to hear your reasoning as to why 4S and perhaps misophonia are both somehow only a 'psychological' problem..... 

I have, to the best of my ability explained my reasoning for that.  For your sake I will repeat myself.  Patients that are afflicted solely with misophonia (i.e. have no problem with any sounds except the SIGHT and SOUND of others eathing - not themselves eating - but OTHERS eating) usually produce a normal audiogram with normal LDL's.  If it were to the contrary one could argue that this is a physiological component here.   In my view this is not physiological but psychological.  Dr. Jastreboff has clearly defined misophonia as "abnormally strong reactions of the autonomic (nervous) and limbic (emotion/behaviour) systems resulting from enhanced connections between the auditory and limbic systems.  Importantly, misophonia and phonophobia do not involve a significant activation of the auditory system."  Another important distinction here is that misophonia is not the dislike of all sounds which has sometimes been misconstrued.  Misophonia can be limited to one sound.
 
A closing remark.  This topic is everyone's territory.  All views are welcome here.  How many times have non-medical people contributed to cures being found in the field of medicine.  It is because they have been motivated by either themselves or someone in their family being afflicted by disease or disorder but just as important their head is outside the box.  Their eyes are not fogged or framed in by their medical training or the day to day grind of medical practice. 
 
All I want is for everyone to express their views.  We are all investigating here.  Is it physiological, psychological, brain processing disorder, behavioural disorder - noone really knows for sure.  But what could be better than for everyone to talk about this in an open forum.  The way I see it, some of the most valuable information comes from people who suffer from misophonia and most notably - what has helped them 
 
As always, just my views...
 
Dan
Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #20 
Wanted to add something to my above post on kids (who become adults) with the condition discovered to be linked to an autoimmune response.
In that population of sufferers it took 20+ years of scientific attention to these disorders to draw the link between the strep throat event or other pathogenic event, the autoimmune response to antibodies, and the onset of neurological symptoms.
There is sometimes a delay between the bout with the pathogen and the sudden and subsequent onset of acute brain symptoms.
Once acquired by a normal child, a process of learning & psychological conditioning may help a sufferer manage the symptoms.
But again, the onset of the condition itself is independent of learning & conditioning.
The effectiveness of learning & conditioning processes to subsequently try to treat/mitigate symtpoms may be linked to the age of the brain at onset, the timelines of treatments, the degree of the original damage and other factors.
Early treatments are beginning to be attempted, including antipathogenic (antibacterial) ones as well as cognitive training to help recondition or re-loop the more indelibly affected brain region as for with those who have suffered a stroke.
Previous psychological associations might affect some nuances of the condition.
But psychological factors only somewhat 'color' the details of the condition, and do not affect it's central nature.
That is:
Intensely unpleasant emotions accompanying hyperfocus on specific details or aspects of daily, social functioning.
Without scientific research on the '4S' syndrome
(for example closer looks at patient health histories, experiments with early interventions after the onset of symptoms, and genetic studies)
who knows what might be discovered about the '4S' condition and how it might relate with different but similar conditions of other kinds.
Research is still developing clarity on the now known autoimmune affects to certain brains recovering from strep and other pathogens in terms of the development of specific forms of hyperfocus with intense and unpleasant limbic involvement.
This research has been developing for decades.
It takes a long time for some conditions to capture scientific attention and for progress in understanding and treatment to be made.
Nevertheless, when the stones are finally carefully turned, surprising and promising new twists in understanding & treatment often arise and become the standard assumptions.

That is, as scientific history shows us, until even further research continues the cycle of deeper, and often even more surprising understandings.

Debbie

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DrJ

Registered: 10/28/08
Posts: 222
Reply with quote  #21 
Debbie, your ideas run very closely to mine.  I have spent time investigating OCD and other types of sudden-onset conditions that could be studied as parallels for 4S.

4S is not an audiological disorder.  There is no such thing, actually.  Something can be an auditory disorder or an A-V disorder, or a CNS disorder, but that first term mentioned earlier I think by Dan, does not exist.

Audiological would imply something directly related to the work perhaps of an audiologist or a piece of audiological equipment, etc.

It is proper to refer to 4S perhaps, I don't really know, as having an auditory component, or an auditory aspect to the dysfunction.

Again, I cannot overemphasize that 4S does not belong here in the Hyperacusis World, it is something entirely different, I suspect, and the focus of this board and support group should be aimed at.....people with hyperacusis (and a little tinnitus).

There are other sites for those who suffer from these other complex issues, a new one is arising from the group of sufferers themselves.

I am sorry that this discussion continues to monopolize much of the time and energy here with 4S issues, and concern, and it is my own hope that once the other sites are up and running this network will return to its primary work of hyperacusis, a very important endeavor.

We are not mind OR body, we ONE being, in my own point of view, we feel, we perceive, we think, we emote, we react, we process, we are a collection of chemical and biological processes tightly bound up with beautiful souls and spirits. 

Dr J

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Marsha Johnson
DrJ

Registered: 10/28/08
Posts: 222
Reply with quote  #22 
I wanted to add one more thing here and then I am going to stop and get on with the work at hand....this post began with Albert Einstein who is one of my favorite figures in history, he was a sweetheart in many ways, a radical thinker, he could be the poster boy for thinking outside the box, and I admire his work and his struggles.  He was an unusual child who did not read until 12 years old and always had difficulties, you could say, fitting in.

His way of thinking was both naive and superbly sophisticated and he was gifted with an immense amount of astonished awe for nature and ideas and enjoyed a deep and rich inner imaginative life.  He could travel the universe inside of his own head, with his own thoughts, and he could see a different facet of life, perhaps, than others. 

His ideas were astounding and he was an open minded person I feel, and this quality is what allowed him to push far beyond his peers, rather in the same way all great thinkers have been able to do.

Keeping an open mind is a challenge and in our fast paced modern rapidly advancing world, in this age of information when we are very fact-oriented, perhaps this is harder than before.  We can google every subject, right?  We have the impression than because something is written, then it must indeed be true...

I would argue that Albert Einstein would be the first one in line to stand up and proclaim that there are many new avenues of thinking and picturing and examining and wondering that remain, areas that deserve our consideration prior to the stage of conclusive decision making.

If you want to explore this further, consider the many explanations for such fundamental questions such as how was the universe created?  How do atoms stay together or what does an atom really look like?  Read up on String Theory if you have some spare time, and then to really spark up your interest, study a little bit about the ideas on how our central nervous system (the brain) works......

The last frontier, some have called it.  How we think, feel, perceive, cognate, emote, wonder, wish, dream, imagine, create, communicate, transpose, and translate, our sensory impressions into electrical and bio-chemical sparks of patterned meaning, how we adapt, and how we yearn for more knowledge in this area...

Better than the theory of relativity, and more complex than any universe, the human being is the most fascinating and complex organism of all....

We need more Alberts in the world. 

DrJ

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Marsha Johnson
DanMalcore

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Dan
Registered: 04/25/05
Posts: 1,177
Reply with quote  #23 
DrJ
Quote:
I am sorry that this discussion continues to monopolize much of the time and energy here with 4S issues, and concern, and it is my own hope that once the other sites are up and running this network will return to its primary work of hyperacusis, a very important endeavor. 

I am truly sorry you feel that way because misophonia is a problem for many hyperacusis patients. 

I have asked you many questions in the spirit of learning and exploring this condition but you not only refuse to answer and discuss them but suggest we should focus only on hyperacusis here.  Nothing could be further from the truth.  Individuals with tinnitus, hyperacusis, phonophobia, misophonia, autism, hearing loss, Tensor Tympani Syndrome, TMJ, OCD, Aspergers....the list can go on and on have all benefited from this message board.  You yourself have posted here hundreds of times.

It seems to me that someone who hopes to secure a grant from the NIH to study misophonia should be open to discussing this at any time particularly in view of the fact that this is a subject that is pertinent to hyperacusis but also you promote your practice as a clinician who, aside from tinnitus, specializes in this disorder.  It's all about having an open mind like Albert Einstein.

Dan
Johnloudb

Registered: 07/31/09
Posts: 1,735
Reply with quote  #24 
Hi Debbie,

Given that people with 4S can successfully negotiate most sounds and even the same sound that bothers them under different conditions, I don't see how brain damage can explain it. Sure, anything that causes a change in the brain can cause the onset of different problems. Doesn't mean it's permanent and can't be treated by psychological treatments or sound treatments.

I had some obsessions with certain things when I was little and it went away.

Dealing with misophonia can be really difficult. I still can't stand right next to my bedroom window for more than about 30 seconds, yet I can stand outside without ear protection for about 10 - 15 minutes at times. There was a time when I could tolerate 2 hour long car trips in a LOUD car. But, could handle my Newt's filter pump in his terrarium for more than 15 - 20 seconds. Though I handle much better now, still not as good as the car.

Even Dr. Jastreboff and Dr. Hazell don't call TRT a 'cure' for tinnitus, as it's very difficult to completely eliminate. You can however reduce it's affect on peoples lives though habituation. Most of the time I'm not even aware of my tinnitus unless I listen to it. But, as I try to do more it can get louder and become noticeable. I'm no longer concerned about it and it gets less eventually. I've also gone for months with no audible tinnitus (habituation to perception). And when I first started TRT my tinnitus would get really loud at times as I tried to go from virtual silence wearing ear protection constantly, to venturing out in the world with no ear protection. It even got louder than most sounds in my environment sometimes. But, I understood the Jastreboff Model and knew it was nothing to be concerned about and it would die down.

Dr. J,

How do you distinguish between misophonia and 4S? Given the difficulty in dealing with misophonia I'm really interested in how you determine who has misophonia and who has 4S. It also seems some patients with 4S can make progress while maybe not a full recovery, at least in the the given time frame.

I don't see a lack of open mindedness here at all. I think we're looking for the truth and answers, though open and honest discussion.


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John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #25 
Hi John,

As far as I know,
it is the tendency,
versus the level of activation at any given moment,
for the brain to respond to a specific pattern of stimuli with extreme hyperfocus and hightened, negative limbic involvement
that marks obsessive disorders.
This includes those which are being directly linked to brain injury acquired through an autimmune response.
The reasons for the circumstantial variability of symptom intensity may be due to the fact that many cognitive functions come together in data processing, not just the ones affected by injury and a complex tapestry of influences come into play at once.
The entire arsenal of outside brain functions could be coached to respond to the injured functioning so as to mitigate the symptoms where possible.
By saying the cause may be a physical injury this is not to say that efforts to cognitively meet the challenge are unessential.
* On the contrary, *
until more pervasive or more effective means of injury prevention and interception are understood, this is THE course of management being used.
As with any other health condition, those who do the best are seemingly to me those who both apply themselves whole-heartedly to the best available treatments & management tools AND participate in efforts to find a cure.

I brought up what I did because with perhaps mistaken emphasis on psychology as the ROOT of the challenge, people might run in circles trying to fix failures in coping skills or self-adjustment, only to blame themselves when the symptoms persist.

How much more energizing for a patient
(than self-blame)
to acknowledge the limited nature of treatments to date,
apply him/herself to the help that is available,
and the rest of his/her energy
to persuits of happiness
& efforts to someday find even more effective treatments & a cure.

Debbie

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Rob

Registered: 05/02/05
Posts: 3,667
Reply with quote  #26 
Dr J writes --
 
To illuminate a very important point, Dan.  Ability to hear (measured by an audiogram) and dynamce range of tolerances (measured by the LDL test for hyperacusis or recruitment),  has nothing to do with the diagnosis of either misophonia or 4S.   
 
Marsha, in point of fact, Dr. Jastreboff does use the LDL test as a means to help diagnose misophonia.   
 
It was less than 125 years ago that schizophrenics were categorized as purely psycholigcally impaired  
 
Theoretically, there is also a partly physiological basis for obsessive-compulsive behavior.
 
I would love to hear your reasoning as to why 4S and perhaps misophonia are both somehow only a 'psychological' problem
 
Speaking just for me, I think it is both a psychological and a physiological challenge.  
 
Again, I cannot overemphasize that 4S does not belong here in the Hyperacusis World, it is something entirely different, I suspect, and the focus of this board and support group should be aimed at.....people with hyperacusis (and a little tinnitus).
 
Respectfully, Marsha, this is a term you introduced on this board.  You and some others view this challenge as a separate syndrome.  Others strongly disagree with you.  You and some others call it one thing.  Others refer to it as misophonia.  Misophonia is one of the focuses of this board.  Perhaps it would be helpful to explain a little more about what misophonia is, as defined by the neurophysiologist who coined the term, and then ask you to explain how misophonia differs in neurophysiological terms from the challenge we've been discussing, as you see it.   
beanbrown

Registered: 09/10/09
Posts: 22
Reply with quote  #27 
Ok, to extend the Einstien analogy further, I am going to become "Quantum Mechanics"...

I would like to capitalize on on the knowledge that seems to be floating through this thread on physical vs. psycological vs. physiological vs. neuro-physiological; apologies for speeling or misuse .

I have apparerntly taken a different road to "recovery" than most, it seems.  Regardless, I find myself finally able to live fairly adequately with some minor home changes that are socially acceptable, like not always eating dinner table, or minimizing crunchy foods around the house.  And, I endure situations like Thanksgiving, etc.  I am fortunate to have a wonderful wife that truely makes this all possible.

A couple years ago, when I had my wisdom teeth removed, I noticed that oxycodone takes away my sound sensitivity (I'm going to refrain from using misophonia or 4S here, and explain a bit lower, hopefully).  I have worked with my psychiatrist and he was unwilling to diagnose a narcotic for an unknown (well, unknown to me at the time...now I guess I have a word), although he was ok to prescribe a very small quantity of oxycodone's much less potent sibling, vicodin, which I take 1/2 pill sporadicailly about 4-5 times a week (if that).  My goal was to be able to handle being at home effectively, so I endure any work sounds with noise-cancelling headphones.

Here is my actual question:  Why would hydrocodone/oxycodone (not oxycotton, the time-release) mute my misophonic response to sound, yet I still react to seeing others eat?  And, since I have been able to pre-empt the more distressing situations with vicodin and stay somewhat focused, how could this affect my migraines?  I ask about my migraines because since I have not had to endure the most distressful situations without some help by taking vicodin, I have had exactly 0 in the last 4 months; they were getting worse, about 2-5 a month.

Thanks for any thoughts on this,
Eric

PS- I would prefer not to split hairs over the differences between 4S and M in response to this, although if it is important to responding effectively, I can provide more detail about my sensitivity and then someone with more experience can actually label it.  In general (i.e. not in response to my question), please, split away
Johnloudb

Registered: 07/31/09
Posts: 1,735
Reply with quote  #28 
Quote:
Here is my actual question: Why would hydrocodone/oxycodone (not oxycotton, the time-release) mute my misophonic response to sound, yet I still react to seeing others eat?


It's a conditioned response, likely due to dislike or phobia of people's eating sounds. I don't why oxycodone would only affect you're response to sound.

I've had phonophobia, and sometimes just thinking I hear a sound (like a fan on high) that bothers me would hurt my ears. Often, I would later find that I was hearing a similar sound (the fan on low) but one that's wasn't a problem. Then the pain would go away, and it would no longer bother me.

Drugs can help with these problems sometimes, since they change the chemical balance in the brain. Thoughts can also change the chemical makeup in the brain. I know that no drug would have helped my situation. I had no choice but to deal with my phobic mindset. That is, face my disaffections and think good thoughts. And I don't like drugs, myself.

After all what is it you don't like about these sounds? It's your disaffections, right? It's a positive feedback loop.

It's hard to retain the auditory subconscious ... it takes work and time. And I just occasionally push ahead and slowly listen more to the sounds that bother me, and I actively think good thoughts.

Just a warning about using to much pain killers. You develop a tolerance to them. And then when you really need a pain killer like for surgery you could be in for a lot of pain. My mom was using a lot of pain killers leading up to her hip surgery. She was in terrible pain afterwards and there wasn't much more they could do for it. It was really rough.

Quote:
And, since I have been able to pre-empt the more distressing situations with vicodin and stay somewhat focused, how could this affect my migraines? I ask about my migraines because since I have not had to endure the most distressful situations without some help by taking vicodin, I have had exactly 0 in the last 4 months; they were getting worse, about 2-5 a month.


I don't know. I had migraine headaches occasionally do to my sound sensitivity. I get a dull headache now and then. But, it's not really a problem now.



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John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #29 
Hi Beanbrown,

This link (under "treatment") mentions Vicodin as a tx some have found helpful for obsessional symptoms while also cautioning about the addictive nature of Vicodin. the article focuses on OCD but may apply to other obsession conditions.

Glad you're getting blessed relief and although using Vicodin are being very circumspect.

Debbie

http://www.monstropedia.org/index.php?title=Obsessive_Compulsive_Disorder


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DrJ

Registered: 10/28/08
Posts: 222
Reply with quote  #30 
One helpful insight might be that reserach has demonstrated that an actual event and a 'possible' event, follow the same pathways in the brain and produce similar electrical signal patterns.

For example, lifting your right arm and 'thinking' about lifting your arm, produce similar brain wave patterns that can be measured.

Consider:  I am deadly allergic to spiders.  I am also terrified of them.  I don't have to see an actual spider to become concerned, all I need to see is a cobweb, a shed, an old garage, fall leaves, or whatever it is in my thinking that I now associated with spiders.

This kind of conditioning is very important for the survival of our species.  We have to be able to experience situations, draw conclusions, make judgments, and then remember and apply that information in the next experience. 

Those who don't, don't survive.

We are instant learners and we have strong associative capacities.  Forming associations (bad) with situation (eating sounds) and then rapidly (Bad = eating), can vault into (bad = anything to do with eating, sound or no sound).

Why does a central nervous system pain killing narcotic affect your auditory sensitivity?  I think that is a fascinating question and what do we know about pain killers...they slow and dull the pain receptors of the central nervous system as well as the peripheral nervour system. 

They operate on bio-chemical properties by penetrating cellular walls and replacing normal chemical processes with other substances.

They also elicit a pleasure response if taken in certain doses with a reward of a 'high' that drug abusers crave.

The body devours them rapidly and escalates its need/desire for them over time, one of the major concerns with oxycodone...they also make one feel a bit lazy-sleepy, relaxed, who cares, so what?

It is a very interesting clue in the pursuit of identifying causation.  Say, overactive nerve fibers are involved in this disorder?  Say, the medication calms them down and relaxes the overall grip of the effects.  Would that speak to a certain type of nerve fiber that is more likely to be involved?

Has anyone else had this experience?

Dr J

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Marsha Johnson
Rob

Registered: 05/02/05
Posts: 3,667
Reply with quote  #31 

Marsha --

Misophonia refers to a sensitivity to sound that is mediated through the limbic and autonomic nervous systems.  It is controlled by conditioned reflexes and is specific to a certain pattern of sound or sounds.  One way to think about misophonia is to imagine that each time one hears a specific type of sound he receives an electrical shock or experiences pain.  As a result, he develops an automatic, conditioned reflex reaction to this category of sound and a resultant dislike of the sound.     

One possibility that might explain these symptoms might be that there may be different acoustic resonances within the ear -- intra- canal acoustic reverberations within some people -- that have never been studied.  In that respect, it is possible the challenge could have to do with the ear itself.  But in that case, we would expect the same sound or sounds to consistently affect someone regardless of the context.  And yet we know that a number of individuals report how a given sound will drive them to distraction in some situations, but not in others.  For example, eating sounds which are perfectly tolerable when one makes the sounds himself may be intolerable when someone else makes them.  That is why I do not feel this challenge is a problem with the ear itself.     

Please explain the clinically significant differences between misophonia -- as Dr. Jastreboff uses the term -- and the challenge we have been discussing in this thread. You have written that misophonia and what you call 4S "both appear to have strong connections with the autonomous [sic] nervous system in provoking severe emotional and psychological reactions and behaviors."  One explanation for that is because they are the same thing.  What is your explanation? 

beanbrown

Registered: 09/10/09
Posts: 22
Reply with quote  #32 
Dr. J, thank you for your interested response.

To give a bit more about what has happened (and to partially or fully answer John), I am not sure what my intial sensitivity to sound was.  The first time I remember having this overwhelming sound-induced-rage, and even realizing it was illogical was at age 5, when my mother was reading my brother and I to bed.  I just began crying uncontrollably and wanted to run away (but at 5, where would I go?).

I also despise drugs.  It's ironic I suppose since I would have been a bit closer to this recovery journey a bit earlier in life, potentially.  I have no urges for indulgence and I suspect that training myself to overcome my misophonic urges through intellect taught me more self control than anything else I could have ever done (ultimately a survival instinct, I suspect).  Anyway, I think that my sensitivity to sounds (perhaps fear, as you point out, John) made me really not enjoy the Dentist (I'm guessing at least some people reading this are nodding thier heads).  So, when it came to wisdom teeth extraction, I opt'd to be knocked out.  So, after a couple hours I was still quite groggy and my wife gave me the oxycodone for the mouth pain, -which I had none, although I was too groggy to pay attention-.  A couple hours later was when I noticed the lack of sensitivity to noise.

And, now, working with my Psychiatrist, I am trying to reverse the "Pavlovian effect" as best I can by slowly introducing more and more "bad sounds" into my area of effect while I am under the influence of vicodin.  I am no TRT expert...heck, not even casually, but I would have to imagine this is similar, albeit different components and stimuli.  I have found that I am slowly using less and less, and initially I would take the entire prescription, but now I have quite a large amount of leftover (not even Thanksgiving will drain me, haha).  My goal is to be free of any sort of "per week" dosage and only have something around for special occasions where I need to be social, but know that I could possible lose it as well. 

I am fully aware that I will have to endure certain reactions for the rest of my life, which is of course no different than in the past, except that I feel I have at least found the top, and am hopefully on a descent into managing typical situations with more confidence than I've ever had before.

On a side note, I have to say with all the talk of physioligy and brain-talk, I didn't really expect lectures on the addictive nature of vicodin, rather a more enlightend reaction...more along the lines of, "wow, how can we make this solve other peoples problems?" or "why would a narcotic behave this way; that implies psychological or neurological or...[fill in educated 'ical' here]"  ...anywho

And, I'm still very interested in further educated thoughts since I seem to be the only one on this particular journey at the moment...most threads I am reading are largely support groups, which was extremely helpful to me initially since I really felt elated to know I'm not alone.  However, it feels like it's time to move at least partially on to resolutions or at least attempted resolutions (even if they fail).  However, I still enjoy seeing and sometimes welcoming new faces here since it makes me remember when I first found the site.

Oh, also...something that is developing, and I think addresses a question by Dr. J, it seems I am sensitive to gluten.  My wife has had some personal issues and she knows some celiacs and wanted to try this diet to address some of HER issues potentially.  I wanted to support her, but didn't really get the impression it would be helpful to me.  I'm NOT a fan of diets...never been on one, ever.  However, after about a month, I've been apparently coming out of some sort of detox?!  I have had some phantom pain (as best I can describe) in my legs for years now, although it has slowly been getting worse, as well as in my hip.  I hope I am not premature in my supposition that they are due to gluten since the pain is nearly gone (not completely, but mostly).  I also have more clarity of thought and a less "edgy" perception on things...even my sensitivity to noise is dampened (but not gone).  Honestly, I was just waiting for the day I could drink beer again, since I work at an artisan, craft-style brewery and I really enjoy the many flavors and test brews, etc.. however if things keep going the way they are going, I'll be happy to never drink another beer again.  It is truely astounding to me that a diet change can affect me so profoundly.  I think I accidentally got some gluten recently (accidentally, at a resturaunt...same cooking place for all foods apparently is a no go), and had very painful stomach issues, and to quote the lab rat-gangster in the animated film, Flushed Away, "I had a bum like a Japanese flag".

Cheers,
Eric

DrJ

Registered: 10/28/08
Posts: 222
Reply with quote  #33 
You are welcome, Eric, and I like your ideas.  I think many people feel a lot of relief with discovering they are not alone and not 'crazy' in their behaviors, and reactions, and yes, the ideal step is to send out 10,000 pioneers in a way, advance soldiers, to scout out what could possibly help and what does not help.

Rob, I am actually going to take a break for a while on trying to tell you what I think 4S is versus misophonia.  I realized the other day that when you quote people who are not here and not directly involved in this discussion, it creates one of those situations that are uncomfortable for me and for others, too.  Those kinds of conversation when one person says, well, so and so told me x or I read y in this person's article, and so on, is not really an exchange, it turns into more of a debate.  I can only bring here in a helpful way what I observe in the clinic and in treatment or therapies, and that is what I have to offer to this group, instead of arguing endlessly about names, terms, quotes, and so on.  So please forgive me if this is not very satisfactory, but I have found these exchanges exhausting and distracting right now.  Y

Keeping an open mind for these instances is the best thing we can do at this time, I suspect, and I hope you agree.  I have heard you quote this quite a few times:  'misophonia is mediated through the limbic and autonomic nervous systems.  It is controlled by conditioned reflexes and is specific to a certain pattern of sound or sounds.'  And I wonder if you know what that actually means.  That would be a good discussion, I think. 

The second statement is of course part of human nature and also related to our personal preferences or styles...for example, when I think of fried chicken (my grandma's) my mouth can really start to water, that is a thinking pattern that produces a physiological response.  I don't mouth-water for ALL fried chicken, though, KFC makes me a little bit ill, whereas Popeye's Spicy, I like pretty well....So these are all chicken, but my conditioned responses vary considerably....

With Eric, we have a good case here of someone with experienced reactions to particular external sounds, and this is a first hand report of a drug that appears to have a positive effect on his reactions. THAT is interesting and I am interested to share it with other providers I know, so we can think about it from a pharmacological point of view.

The auditory system itself is very responsive to medications, some more than others, as is the CNS, and this makes for interesting thinking and speculation.

Eric, your psychiatrist might have more good information about how this drug affects the CNS and I would certainly do some research on PUB MED to see if anyone else is using that one for different purposes. 

Some anti-alcohol drugs, anti-epilespy, and anti-chronic pain drugs have been tried for tinnitus, as well as other classes of meds.  Often unexpected results turn up in clinical trials for something entirely different, i.e., viagra was discovered during a cardio trial or something, an accidental find.

So Eric your work is important and your goals are perfect and I would try all sorts of options as they are made available to you and then keep track of what seems to work well, and what does not.

With so few people affected by 4S, like other orphan disorders, it can be hard to attract attention of the big guys in research or drug testing or genetics.  The one study that House Ear mentioned would cost about half a million dollars just for bloodwork for 500 volunteers to search for genetic clues.....

There are plenty of people with 4S who have had adversive therapy which appears to have less success than hoped for...

DrJ

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Marsha Johnson
Debbie

Registered: 08/26/08
Posts: 1,512
Reply with quote  #34 
Hi Beanbrown,

I posted the link referencing the success that others, too, have reported using Vicodan because it seemed to speak to your post.
I know how precious relief from what we bring to this board can be
& I meant to express sincere gladness for yours.
I hoped to highlight the special care you are taking with Vicodin for the sake of later readers, as
I know superstar people who were casual about starting perscription meds and had them get out of their control.
I'm very glad that you ARE conscientiously using this tool and that you are getting relief.

Debbie

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Breathing is good.
aQuieterBreeze

Registered: 02/03/08
Posts: 2,083
Reply with quote  #35 
Hi Eric,

You mentioned -
I ask about my migraines because since I have not had to endure the most distressful situations without some help by taking vicodin, I have had exactly 0 in the last 4 months; they were getting worse, about 2-5 a month.

I'm not in the medical field, but stress can have a lot of effects on the body and mind,
it can raise blood pressure, make sleeping more difficult,
increase levels of some hormones,  and at times cause us to be on high alert, and also at times to experience the "fight or flight" responses in reaction to  that stress, or to what is causing it. If we do nothing about that fight or flight response, (such as effectively dealing with the situation, or somehow diffusing our reaction to it - my thought is it probably  makes things worse. (Increases the level of stress)
So my thought is that by pre-empting your most stressful situations, by eliminating or reducing the stress-
you eliminate or reduce a possible trigger for the migraines.
By knowing there are things we can do in certain situations, and things we can do about certain situations,
it can take some of the stress and fear out of being in, or potentially encountering those situations.
Just my thoughts though.

It's wonderful you are making some progress.
Also did your migraines continue after your wisdom teeth were taken out?
Rob

Registered: 05/02/05
Posts: 3,667
Reply with quote  #36 
Marsha -- 
 
With respect, you haven't answered Dan's questions or my questions.  
 
In his book Tinnitus Retraining Therapy -- Implementing the Neurophysiological Model, Dr. Jastreboff writes about the challenge we have been discussing in this thread as follows.  
 
"Examples of misophonia include ... a dislike of other people eating or chewing."      
 
Since you bring up what you have observed in your clinic, I'd like to point out that on your own website, you write the following.  "Since the summer of 1997, unusual cases of hyperacusis have contacted my clinic to report symptoms that stray outside the 'regular' pattern of hyperacusis.  One of these variations involves strong negative reaction to soft sounds, in particular, sounds associated with eating, breathing, speaking, or lip smacking."
 
Would you not agree this is incorrect?  We haven't been discussing hyperacusis in this thread, and misophonia is not an "unusual" case of hyperacusis or an irregular variant of hyperacusis.  With hyperacusis, the sensitivity to sound is mediated via the auditory system with respect to loudness.  With misophonia, the sensitivity to sound is mediated through the limbic and autonomic nervous systems.  It is controlled by conditioned reflexes and is specific to a certain pattern of sound or sounds.  According to what I quoted above from Dr. Jastreboff's book, a strong negative reaction to "sounds associated with eating" is misophonia.  It is not a separate syndrome.  As for "treatment", the use of broadband noise as emited by wearable generators does not affect a conditioned response.  For misophonia to be effectively treated, the conditioned response must be addressed.   
 
Rob
DrJ

Registered: 10/28/08
Posts: 222
Reply with quote  #37 
I did respond to Dan and have in other places as well.  And anyone can search my name here on this board and see what I have written and explained ad nauseum.

Like I said, I have chosen, for myself stop arguing about third party definitions for now, perhaps for the month of December, and I am going to concentrate more on providing helpful advice for people who come here or elsewhere.

Cannot resist one tidbit, however, you have to recall that back in the 90s there was no talk of misophonia.  And the definition of misophonia has certainly enlarged over time, which could be helpful, and perhaps not. Initially it fell under the hyperacusis umbrella as clearly it is closer to that than to tinnitus.....years from now, there will be new info, no doubt.

I am content to let it rest and focus on current situations for a while.  The group of people wtih these symptoms are rising and forming and taking up their own cause, which was my intention from the get-go.

Dr. J

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Marsha Johnson
beanbrown

Registered: 09/10/09
Posts: 22
Reply with quote  #38 
aQB, I think you are correct.  I did have migraines after my wisdom teeth were pulled.  In fact it took 2 years of experimenting with various drugs (prescribed by my Psychiatrist) to try to emulate the effect, but as the migraines grew worse and more frequent, we turned to that as a problem that we thought we could solve with pain medication.  And, indirectly that is exactly what happened.  I felt more desperate as time went on, knowing that there was something out there that could help, but having no legitimate way to obtain Vicodin.  So, in effect, I think my desperation of knowing that I was missing precious time, I was causing more migraines.

I will try to formalize the other drugs that I tried at some point, since I do think that is a good suggestion, although I didn't realize it would be useful to anyone at the time, heh.

I would be curious Dr. J of what any of your pharmisutical friends have to say as to WHY they think this is happening, since I think that may be a significant clue in at least some of the sound sensitive peeps like me.  Or, anyone else that has knowledge of the systems that a narcotic affects and the chemical reaction.

Cheers,
Eric
DrJ

Registered: 10/28/08
Posts: 222
Reply with quote  #39 
I do know a very high level pharmacologist....I will take that up and contact her and see what she has to say.  It will be an interesting task, we should research on PUB MED and see if any one has written on the subject. 

Pain management and pain protocols are good resources for the person wtih T or H who is using meds, too.  I know someone who manages a pain clinic and maybe they can also help us.

Dr. Johnson

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Marsha Johnson
Johnloudb

Registered: 07/31/09
Posts: 1,735
Reply with quote  #40 
Quote:
I did have migraines after my wisdom teeth were pulled. In fact it took 2 years of experimenting with various drugs (prescribed by my Psychiatrist) to try to emulate the effect, but as the migraines grew worse and more frequent, we turned to that as a problem that we thought we could solve with pain medication.


A year and half ago, I had this crack in my tooth that kept get worse. My tooth started becoming sensitive to cold, but my dentist said it was not decayed and was keeping a eye on it. He said if the pain got to bad he could put a cap on it.

Anyway, sometimes I'd put cold on it and my world would go black for about 30 seconds. I noticed that when avoided putting cold on it my other teeth started to get sensitive to cold also.

It just seemed natural to do TRT on my tooth, since I've been dealing with all these other sensitivities the same way. I just kept putting cold on it and sometimes I could handle it okay and I'd leave the cold on it longer. I just didn't avoid cold and toughed it out for a couple months. After about 3 months I noticed that the cold sensitivity was gone.

I was suspicious and figured my tooth was dead, and I scheduled an appointment to have it fixed. My dentist said the tooth was still alive and had no problems other than the crack.

Anyway, I decide to go ahead and have the cap put on since I figured the crack would probably get worse and tooth would eventually go bad.

That's probably not the solution most want in treating tooth sensitivity. But I didn't want to end up taking meds for it.

I've found TRT works good on back problems I've had too. A physical therapist told me people with back problems often completely avoid activities that have hurt their back in the past. She gets around it by doing different activities that work the same muscles.

Don't know how that would have helped your migraines, maybe good thoughts would help with that to ... Don't know.

But a lot of pain is psychological, or can be treated through psychological means. TRT even explains the mechanism behind chronic pain.


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John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
aQuieterBreeze

Registered: 02/03/08
Posts: 2,083
Reply with quote  #41 
Hi Eric,

You mentioned-
 I did have migraines after my wisdom teeth were pulled.......

Actually I wondered if your migraines had quit, after your wisdom teeth were taken out, as dental problems can cause headaches, literally - and migraines as well. I am not prone to them thankfully,
but know others who have them (migraines) and know they can be very  difficult.

Thankfully I've been able to deal with my hearing challenges, and the stress sound can cause,  by methods other  than what you mention.
Sometimes changing the way we think about and view things can be quite helpful.

And I found reading just a little about and seeing a diagram or two- 
about the Neurophysiological model and "the limbic and the autonomic nervous systems" had a lot of impact, and was quite helpful to me.

Just an added note ----
I also think that  if we can eliminate or reduce the stress often enough in situations that had been stressful,
by experiencing those situations (or perhaps in some cases, similar ones) as less stressful, 
we may find they become much less stressful overtime. 
As that is something I have found to be true with some other things in life ....
though I do not have a problem with the sound of people eating -
But it seems like some others on this board appear to have found that to be true, when dealing with the type of challenge you mention.

I think being able to tolerate stressful situations in ways that they become less stressful overtime - can be helpful,
And hope that you will be able to do that without the help of the meds you mentioned, before too long goes by.

Also it was Dr. Johnson that suggested that you to detail your journey, about what you have tried, so please direct any further comments about that to her. Thank you.
beanbrown

Registered: 09/10/09
Posts: 22
Reply with quote  #42 
Thanks, aQB. I may not have said this already, but after my wisdom teeth were pulled, my migraines got worse. I know I felt more helpless knowing that there was relief but I was not priivy to it.

I almost didn't pick up my last prescription because I had about half left over from the previous month, since things have been going so well. I think also the gluten free diet may be helping...at least I have had more energy to devote to overcoming my issues mentally instead of always feeling so worn out.

When I get some time (perhaps in the new year), I will try to more accurately document my journey and perhaps -as you suggest, aQB- send it to Dr.J.

It's a funny thing on this board that so many people are so quick to attempt to control conversations (as in this thread, the example of the 4S/M debate, or the "suggestion" that I send my comments directly to Dr. J, just to name a couple on this particular thread). I have noticed this a bit, and it actually makes a lot of sense since most people on this board are quick to identify and attempt to control even very subtle stressful personal situations (perhaps I could say especially subtle stressful personal situations). If a conversation goes somewhere that makes a person uncomfortable, then control is applied. Most of us have been doing that when we can, our entire lives. I also find this is true with intellectuals (example in the original quote by Dan about Einstein, which started this thread), which there seem to be plenty of here.

Anyway, I don't mean to diverge from Dan's original goal of discussion, which, if I can paraphrase correctly: sound sensitivities are evil. Or perhaps sound sensitivies are cold...not sure which, hehe

Cheers,
Eric
kanga

Registered: 11/25/09
Posts: 1
Reply with quote  #43 
Hi, I'm new to this board and like many others am relieved to discover that I'm not the only one who suffers from misophonia. Eating noises, throat-clearing, organised rustling sounds and really anything that suddenly appears to be excessive and unnecessary (however unfair this assumption may be) make me want/need to scream. My poor partner has had many a hole dug into his leg suddenly from my nails at a crowded dinner table! This has happened for as long as I can remember and has had a huge impact and burden on my life and on my family and on my sense of self and self-worth. The shame I felt for being such a source of pain to my family when I reacted them eating was heartbreaking and yet the sense of frustration and isolation from not being better understood by them hurt more.

I have seen a lot of debate between causes of misophonia as being psychological or physiological, and, for my own part, though it does definitely feel physical and beyond any hope of control in me, I rather think that it, along with everything else in our bodies are governed by our minds. Not only because, as some have astutely said above, it is not the noises that are the problem but our reaction to them (however much it may feel good to defer responsibility onto external factors), but also because of my gradually deepening understanding of the way the mind works and just how much it really has to do with the rest of ourselves and our physical condition.

As Rob mentioned above,
Quote:
For misophonia to be effectively treated, the conditioned response must be addressed.


My question is, has anyone considered hypnotherapy as a way to deal with misophonia? Or, like the conditions we are discussing, has it too got some way to go before being recognised as a credible notion? I plan to explore this avenue myself and will keep everyone posted on my progress but just thought I would poke my head into the forum now and say 'hi'.

Rob

Registered: 05/02/05
Posts: 3,667
Reply with quote  #44 
Kanga --

Welcome to the board.  I enjoyed reading your post and wish you well as you explore approaches to find what helps you. 
beanbrown

Registered: 09/10/09
Posts: 22
Reply with quote  #45 
Welcome Kanga!

  I feel your pain...I still don't talk to my Dad and barely to the rest.  Anyway, I have half-heartedly tried hypnosis a couple of times, but as you can imagine, all the little sounds in the room (of course the quiet is supposed to be soothing) kept me from concentrating.

  I suspect it will be worth trying with a hypnotist that understands how to make a misophonic comfortable, and would also be interested in other's experiences on this topic.

Cheers,
Eric
Johnloudb

Registered: 07/31/09
Posts: 1,735
Reply with quote  #46 
Kanga,

I've also considered hypnosis approach as help in dealing with my phonophobia. But, I didn't really know where to find that kind of help. The biggest step forward with my progress was done with the help of visualization.

I visualized the hour long trip to a TRT doctor for a month, and only allowed myself to think good thoughts about it. This loud car had been a big sensitivity for me in the past. So this was a huge step for me. In the end I had a great trip.

Definitely interested in knowing how that works for you.

__________________
John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
ukeablooey

Registered: 07/10/09
Posts: 5
Reply with quote  #47 
I wonder if we respond to the sounds through some well built emotional filter that sucks up all eating sounds and turns them into pain or if by our reactions to the sounds our brains have actually built up specialized pathways of pain, creating a terrible self-sustaining system.  In other words, is it mostly physiological or is it psychological?  This is important to nail down so we can focus on the most successful treatments.  Probably it will take treating both simultaneously.

BTW, wouldn't it be nice to have a device that you wore like a hearing aid that filtered out only eating sounds (or whatever your particular sound)?  Imagine if we could sit at a dinner with friends and not feel like jumping up and run screaming out the room.  Eventually, the strength of the reactions to those sounds would decrease, possibly dying entirely.  Mealtime anxiety would disappear.  We could have more meaningful relationships (or any at all for some of us).  We should get Adam and Jaime to work on that.

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I don't tell anyone anymore about my misophonia (eating sounds) because they think I'm some kind of manners snob and proceed to do it louder and on purpose.
Guflu

Avatar / Picture

Registered: 06/10/08
Posts: 354
Reply with quote  #48 
Quote:
Originally Posted by ukeablooey
Eventually, the strength of the reactions to those sounds would decrease, possibly dying entirely.  Mealtime anxiety would disappear.  

I reckon the anxiety would then disappear for the time being, so that would be good to come to rest. But you would always need to keep on wearing the device.

Imagine being phobic of spiders and for the next five years you would have a device that would block every spider from your sight...
First, you'd probably be aware that there might still be spiders, so you would still be on the lookout. Over time, you would grow dependend on the device, for if you weren't wearing it, the anxiety returns that in every corner of the room there could be a spider. AND, in the end, when you think you are cured, and you would come across a living spider... You would probably freak out so heavy that you would need to be reanimated.

I would say tackling the response to the sound is the way to go. The sound is not the problem, the emotional response is.

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It's the sparkle you become when you conquer anxiety. [Bjork-Crystalline]
cbBen

Registered: 12/16/07
Posts: 1,378
Reply with quote  #49 
I'm with Dr. J.  

First of all, misophonia is diagnosed by hyperacusis rule-out.  In other words, if the LDL's are above a certain level, the diagnosis becomes misophonia rather than hyperacusis.  Just read Minor's success story on the home page or NHentrick's story here:  http://www.chat-hyperacusis.net/post/show_single_post?pid=27953944&postcount=6

I am posting the relevant portion of NHentrick's story at the bottom of this post.  Please read it.

With Lyrica my LDL's can be raised past 90db to the point of a misophonia diagnosis, but without it they may result in a hyperacusis diagnosis.  So Lyrica changes my condition from an auditory one to a non-auditory one?  Ridiculous.

Also what of one who is tougher with respect to pain threshhold and therefore the LDL's are higher and  misophonia diagnosis ensues -- suddenly the condition is not auditory, whereas a lower pain threshhold would make it auditory?  Again, ridiculous.

And what no one seems to understand is that misophonia is diagnosed by hyperacusis rule-out.  In other words, high LDL's plus sound sensitivity - misophonia.  Therefore the toughness of the patient, the pain level on the particular day of testing, meds such as Lyrica, etc., all change the condition from auditory to non-auditory.  

I don't buy it.  I believe the answer has to be, at the very least, some of both.

The bold, underlining, and word enlargements are mine.  Please read and take note (again this is from NHentrick's post after diagnosis from Dr. Jasterboff himself):

Since my LDL readings were generally in the range of 95-100 dB, Dr. Jastreboff concluded that my sound sensitivity "condition" shouldn't be classified as hyperacusis, but instead as misophonia (dislike of sound). He explained that this isn't necessarily a conscious "dislike" as one might infer from the description, but rather a collection of involuntary responses by the hearing organ and various levels of the nervous system in response to sound(s) that would not cause such reactions in "normal" people.

Misophonia... responses by hearing organ and nervous system -- both.  

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Please resist the temptation to pick apart my post by quoting it piece by piece.
DrJ

Registered: 10/28/08
Posts: 222
Reply with quote  #50 
cB  you always hit that nail right on its head.  Maybe you are a lawyer in your other life, or a journalist.

I would add that I have decided to pursue a survey of people who have been 'officially' diagnosed with misophonia.  Not self-diagnosed from things they have read here. 

I am going to collect some data on these folks and try to ferret out some kind of conclusions or even educated guesses.

If you HAVE been diagnosed with misophonia, I will post the link on this website so you can visit the survey site and help fill in the data points, please.  It will take you less than 5 minutes, I promise.

But you do have to have been diagnosed by a professional audiologist or physician.  That means you have to have had the auditory evaluation along with an interview or case history.  Not sure how many there are out there, seems like perhaps a handful.

Dr. J

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Marsha Johnson
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