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Yaffel_Chucklebutty

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Reply with quote  #1 
Hi guys, just signed up, hope you're all OK, i've got one hell of a story to try and explain so if i seem to go on too much, please bear with me...

I don't think i actually have Hyperacusis, but i do have sensitive hearing, a dog barking in front of me really does make me jump, or other little things that wouldn't normally startle people such as party poppers, balloons, car horns etc... I try everything i can to avoid these situations and it's lead to a lot of phobia treatments but none of them worked, i think the problem is my sensitivity to noises not "Irrational Fear"

I always disliked noises as a little boy, like most little kids i cried if a noise startled me, but i soon grew out of that and had no problems with noise at all for the rest of my childhood, i reacted to a loud noise like normal people and i remember staying at friends houses where they had dogs and i never jumped once despite the fact they barked all the time.

I'm certain that things changed when i was about 11 years old, our parents had just brought me and my sister two pet rabbits to look after and one time we had to get them in the house because it started thundering, I put my shoes on to go outside and this enormous explosion just totally rattled me, I didn't even know it was thunder at first, all i knew was that i was gripped with fear and started covering my ears not even aware my sister needed help, i was too scared to even move, why on earth was i acting like this? I felt so confused and shaken, i was just as scared by the way i was acting as i was of the noise itself!!

Pretty soon after (a year or so) i started to notice small irrational behavior towards things like balloons/ party poppers, and the fears i had as a child started to come back to me somehow, noise by noise i started to discover all the things that would make me jump that never used to, up until this point where it's hard to even get out the house without my ipod.

I don't generally have the same issues most Hyperacusis sufferers do, i can still talk on the phone, watch TV at a reasonable level, and most common sounds don't bother me at all really, it's just the super loud ones that startle me and most people don't even flinch!?

Does anybody know if this can be classed as a case of Hyperacusis or something else? I'd really like some answers, nothing has really worked for me, and i'm starting to feel there's no point in being alive anymore if i'm controlled by noises 24 hours a day. Any suggestions?? thanks for reading people, much appreciated.  :
 

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Johnloudb

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Reply with quote  #2 

Hard to know if you're dealing with phonophobia or just hyperacusis or both. Have you ever seen a TRT doctor and had your LDL's (loudness discomfort levels) checked. Phonophobia can lead to hyperacusis,  and vise versa, and things are rarely simple.

But, I'd suggest using sound enrichment ( a pleasant sound you hear all the time ), like nature sounds from a nature CD or nature sound radio. Also, listing more to Loud (sorry Breeze - she doesn't like this word) sounds you Tolerate Well, that don't cause a negative reaction. Maybe gradually take longer car trips.

Also, I always deal with the psychological/emotional aspect of this health problem, because how we respond to sound is all about beliefs. You can read more about that here:  http://www.tinnitus.org

This is very hard to deal with but try to stay positive, there is a path forward. 

Best Wishes,

John

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aQuieterBreeze

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Reply with quote  #3 
John,
I have nothing against the word loud,
and I have nothing against loud sound in general....
We need to know what we are able to tolerate though, and for many with hyperacusis especially when they first get these challenges - many are not able to tolerate anything in the way of sound,  that is anywhere close to loud.
And many may not realize what being around Loud sound at that time may do,
for someone with hyperacusis or tinnitus..

You have misunderstood what I have said and/or the reason I have said it.
The reason i have not cared for the way you have phrased that in the past, and finally commented on it -
is because I think it could be too easy for someone else,  
especially someone new to these challenges -
to misunderstand what you mean by that.
(Though  i do understand what you mean when you say that)
And for someone new to these challenges,
 especially someone with hyperacusis and/or tinnitus,
I really think they should learn a bit about these challenges, and the way they are affected by sound -  before trying to push or test their limits with Loud sound.
Or in being in loud environments.


And I still hope to get back to that other thread soon.
P.S.  I also  think having a healthy respect for LOUD sound is a good idea ....
even after someone with hyperacusis recovers their tolerances to sound.



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aQuieterBreeze

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Reply with quote  #4 
Hi Yaffel,

You mentioned -
I'm certain that things changed when i was about 11 years old, our parents had just brought me and my sister two pet rabbits to look after and one time we had to get them in the house because it started thundering, I put my shoes on to go outside and this enormous explosion just totally rattled me, I didn't even know it was thunder at first, all i knew was that i was gripped with fear and started covering my ears not even aware my sister needed help, i was too scared to even move, why on earth was i acting like this? I felt so confused and shaken, i was just as scared by the way i was acting as i was of the noise itself!


It sounds like you had a very traumatic experience. You mention there was the sound of an explosion, that you later figured out was thunder,  What you describe sounds like lightening may have hit pretty close, as that is when thunder can be REALLY loud. Did it strike something near the house or near where you were?

To want to cover your ears from the sound of very loud thunder would probably not not be that unusual - it would seem like a built in reflex.
 (especially considering you mentioned you used to be startled by sound anyway)
You mention that your sister needed  help, was she OK, and were the rabbits alright?

Going through traumatic events can affect us in alot of ways.
Understanding what is going on can be helpful.
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SkaMasta097

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Reply with quote  #5 

OP, you might have ligyrophobia, which is similar to phonophobia. Google it.

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Johnloudb

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Reply with quote  #6 
Quote:
P.S. I also think having a healthy respect for LOUD sound is a good idea ....

even after someone with hyperacusis recovers their tolerances to sound.


Hi Breeze, I did get your point when you brought up you're concern over my use of the word loud. And I agree, and I try to explain what I mean about loud sounds more carefully now. Thanks for pointing that out. 

Many people get so concerned about loud sounds that they start completely avoiding sounds that are well within there tolerances. That just makes people's ears more sensitive, and quieter sounds start to sound louder. 

I think many people are way to concerned about hurt ears. Sure, you don't want to hurt your ears, and when ears are hurt it's important to take it easy with sounds for a period. And, desensitization needs to be done very slowly. But, if you know how to deal with your phobic mindset, hurt ears most often doesn't mean a setback or a big setback. 

Though like you've mentioned in the past loud sounds that hurt (i.e. slamming doors in my case) do to seem cause bigger setbacks. Took me about a month to deal with that one. My fault of course.

John 

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Johnloudb

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Reply with quote  #7 
Actually, my biggest setbacks have come from taking desensitization to fast, or just not being able to get out enough, due to other issues.
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Debbie

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Reply with quote  #8 
Hi Yaffel,

I'm not a doc, just a person with hyperacusis/tinnitus for the last two years who has read a lot on this board and elsewhere about auditory issues.
This startle reflex sounds to me like a bit different from hyperacusis.
It was, as Breeze noted, paired with a traumatic experience, in that sense it could possibly be a phobia,
in this case 1) Emotional Freedom Technique EFT or Meridian Mapping Technique MMT - which were developed in part to help soldiers "unwind" PTSD following war trauma in which they, for example, continue to dive under tables back home thinking it is incoming shrapnell...
these therapies, which are designed to be very fast and efficient at alleviating these entrenched responses, might be worth your while to investigate.
You would want to work with an experienced, thoroughly trained/certified and professional guide, feel free to ask me about assessing/finding a practitioner if you are ever interested.

These simple, drug-free therapies could be tried pretty cheaply (less than $75-$150 generally to find out if it will help you...with some follow-up to follow it through)

2) Along that same line hypnosis......have you tried?


3) If EFT and/or hypnosis with a great guide don't work, maybe see a reputable and compassionate/truly understanding (not a given) neurologist who works with conditions such as autism (not necessarily to see if this could be a component but because such practitioners see people who have different kinds of sound sensitivity as well) and see if that person has insight to get you to the next lead.

I hope this helps.

Debbie



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Yaffel_Chucklebutty

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Reply with quote  #9 
Hi guys, thanks for the responses, The inccident with the lightning strike felt like it was close to our back yard, my sister had a normal response and went back outside to try and get the two rabbits in despite the fact it sounded like a bomb had just gone off outside, I however was just curled up in a chair with my fingers in my ears and i couldn't even move, she was shouting at me "WHAT ARE DOING!!?" But i was so worried there was going to be another explosion that i didn't wanna move, so once the storm was gone it felt like someone had flicked a switch in my head and i knew i wasn't going to be the same again after that same experience.

But since then my tolerance to noises has changed, little things can startle me now that didn't used to, dogs barking or party poppers going off can make me jump now and i dont get why i'm so sensitive to those noises?

Hypnotherapy, Even a world famous phobia curer came to my own home and didn't cure me, the emotional tapping techniques i felt weren't any good, NLP, quick phobia cures, you name it i've tried it. I think they are trying to cure it as a phobia when in fact it could be it's not the thunderstorms that bother me it's the potential for another explosion that gets to me, if i didn't jump at a noise that wasn't loud, then i wouldn't have a problem, so by that i mean the problem could lie in my hearing.

The fear of the thunderstorms is rooted in another explosion happening again, not the storm itself, any potential for a loud noise and i enter flight or fight response, but the anxious response hasn't been the cause for my sensitivity to noises, sometimes i've been totally relaxed and found that a noise has startled me even though it wasn't generally loud, making me think it's a hearing problem.

Sometimes i think i need hearing damage just to reduce the amount of noises that startle me, even go fully deaf and use a hearing aid, it holds my life back in so many ways, i sometimes wish i could just walk around with ear protectors on all day.

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Johnloudb

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Reply with quote  #10 

Yaffel,

Phobias can and do lead to hyperacusis (increased sound sensitivity) and sound enrichment is helpful for both phobias and hyperacusis. I really recommend you read all the information on Dr. Hazell's site  (  http://www.tinnitus.org  ).

Yeah, that's the way it is with phobias. It's not the loud noise your afraid of, it's the way it makes you feel. I've dealt with phonophobia for years, and made progress. It involves facing these sounds and the disaffection and thinking good thoughts - retraining how you respond to these sounds. It takes time. But that's not how you treat hyperacusis!

I really suggest getting your LDL's checked though by a TRT trained doctor, to see if you have hyperacusis as well. 

But, If the sounds don't hurt your ears or make them ring you probably don't have hyperacusis. Still I'd have that checked for.

Also, cognitive brain therapy is also helpful in dealing with phonophobia.

Best of Luck,

John

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Debbie

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Reply with quote  #11 
Hi Yaffel,

Since neither acu-tapping 'emotional' techniques nor hypnotherapy seems to have helped, either:

a) The practitioners were not as skilled as they may have seemed;
acu-tapping for one depends on how precisely the emotions are paired with an underlying, corresponding belief...the insight with which to be able to identify this would not be equal in every practitioner.

Or:
b) This is NOT primarily or at all a "PTSD"-related situation.


Have you been to neurological specialists who treat people with sound sensitivities (again for example a specialist who takes many patients with autism-related sound sensitivity plus perhaps hyperacusis patients - just in terms of getting a practitioner who has seen different angles of sensitivity to loud noise)

You mentioned how close the lightening was.....do you or your sister think that maybe you received a dose of electricity?
I once got stuck in a storm and lightening shot along the ground and sent me flying upwards off my feet ......I remember the sense of electric charge, adrenilin and feeling of disorientation,  
I was wearing boots with very thick, rubber soles,
and I wonder what would have happened otherwise.

An electric charge/physical shock especially at age 11 might not only instill a primal emotional link but, only my guess that it logically could physically impact neurology of the central and/or peripheral/auditory nervous systems.....and the two impacts might compound one another.


I agree with John that emotions and beliefs can strongly impact how we perceive sound once we are already disturbed by it whether for physical or emotional reasons or both.

*A little tangent.............which may not even need saying but......
I think that applies to anything we are troubled by, for that matter.
Thoughts and beliefs can help us deliberately or unconsiously talk ourselves through many types of troubling experiences, buffering their impact...
or we can by the same token "talk" ourselves into an even higher, more maximal level of awareness, distress and disturbance.

I disagree with the idea (and I don't think this is what John necessarily meant but underlining this) that how we respond to sound is necessarily "all" about our outlook, or feelings, or perspectives.
There may are physical causes that may exist to one degree or another just as a break in a bone would, even if we can modify our perceptions and distress levels about it through the deliberate (or typically less conscious)
use of our emotions and thoughts.


Yaffel....have you met with any brilliant neurologists who can help you diagnose and/or refer you on?


A last idea:


c) You were age 11 when this happened, around a typical onset age for various neuro-biological conditions to emerge, possibly due to the combined impact of genetics, developmental stage within the brain and other internal and external factors - hormones, chemical or germ exposures for example. 
Who knows, maybe an electrical impact to the body could be another such co-factor.

Again...some ideas to possibly bring up with truly good neurologist(s) specializing in pediatrics, neuro-biological conditions, auditory conditions.


It sounds like you're at your wit's end, and what you are describing sounds extremely difficult to cope with.  Don't give up. You are much closer than you were to finding ways to get help. You may just be on the track to some insights into this and management tools which can really help you.


Debbie



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pattiluv

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Reply with quote  #12 
i can understand having a dislike of loud noises. the ear is connected to the limbic system directly bypassing the rational mind. if something gives you pain because it is too loud, you might easily develop an instinctual aversion to it. it caused you pain and discomfort.

earlier in my h someone kissed my hand and gave me a setback and i am still afraid of kissing noises, though they haven't caused setbacks recently, same with squeaky doors, which also inflicted real pain and setbacks that lasted for days. and let's not forget how i got h, someone laughed too close to my ear! i am still developing trust around people talking too loud who are super-close to me.

otoh, a loud balloon popped the other day and my ears have been ringing on and off for nine days. they say the db level of a balloon popping is 157 and i believe them! everyone in the store thought a gun went off!

but other than the ringing i didn't get a setback of h. so less afraid of those, though i'll try to steer clear of those the way i would guns or other loud noises.

i have never found tapping (eft, etc) to work for me, have tried it many times and even gone to professionals. i wish it did, has anyone else found it helpful, and if so, how?

to some extent i feel my body is reasonable in not wanting me to be in the same situation that caused so much pain and damage. i am just letting it learn how at its pace. i'd do more if i knew what to do.




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Debbie

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Reply with quote  #13 
Yaffel,

I have been reading about dystonias - "movement disorders" of many different types (with different sets of symptoms.)
Dystonias are distinct forms of muscle spacticity,
from tremors to myoclonus
to frozen-tight muscles such as one would see with chronic 'wry neck,' to vocal cord muscle disruptions
to the type of spasticity which is seen in Tourettes Syndrome.
The form of dystonia can be local or all over the body,
and involve additional symptoms depending on its type.

One type of dystonia, if I understand it, seems to correlate with the startle response.

Have you have seen a neurological specialist in not just specifically sound-related startle but dystonias - because exagerated & spastic response to sound may be consistent with dystonia.

There seem to be at least 12 distinct types of dystonias that have been identified so far, each linked to a specific gene variant and specific change within a small area of the brain stem (basal ganglia) which controls body movement & some other functions.
The change in that region may have been triggered by hormones, chemicals such as with medicines or by a physical trauma.

I am starting to consider that actually the more localized, involuntary ear
and head muscle tightness patterns seen with hyperacusis might be also classifiable under dystonia,
although for now may be another topic.

There do seem to be some interesting treatments for various kinds of dystonia and maybe looking at symptoms under this wider heading might yield some insight and direction
from the right neurologist.

Just a thought,

Debbie

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aQuieterBreeze

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Reply with quote  #14 
Hi Yaffel,

You mentioned-
i sometimes wish i could just walk around with ear protectors on all day.

Do you use them, or other forms of hearing protection  alot?  And if so have you been doing so for quite awhile?
I ask because using hearing protection (such as muffs or earplugs) too much, in environments in which it is not really necessary - can make ones hearing/ears even more sensitive to sound.
Some have used hearing protection so much they find it very difficult to go without it.
 Though there are situations in which it is recommended , even for those without these challenges. (and many people have no clue about some of the situations in which it really should be used, even for those without these challenges,
such as when using some loud power tools, or equipment or at loud events)
 
 You also mentioned -
 Sometimes i think i need hearing damage just to reduce the amount of noises that startle me
 
From what I have read and understand,
ones perception of loudness may at least sometimes be partially due to the difference between the background sound, or sound levels -
 and other sound that may occur.
 So if one (even someone without hyperacusis) tries to stay in a very quiet environment - I think other sound may seem louder, ....by comparison.....until one get used to the sound around them.

Do you try to keep the environment you are in  as quiet as possible?

I don't think being startled by sudden loud noise is that unusual, it would seem natural,
though to have  fear that something loud may happen, seems like it would be a bit different than being startled when something loud does occur. 

You mentioned -
The inccident with the lightning strike felt like it was close to our back yard, my sister had a normal response and went back outside to try and get the two rabbits in despite the fact it sounded like a bomb had just gone off outside, I however was just curled up in a chair with my fingers in my ears and i couldn't even move, she was shouting at me "WHAT ARE DOING!!?"

If lightning hits fairly close, to remain aware, especially until the storm moves off -
that another lightening strike nearby may occur - is not such a bad thing,
It's not the time to be outside.

To be a kid and to have been frightened of the sound, from the very loud thunder that close would not seem too  unusual. 

Just out of curiosity - did you notice the flash of lightning that went with it?

Hi Debbie,

you mentioned -

I once got stuck in a storm and lightening shot along the ground and sent me flying upwards off my feet ......I remember the sense of electric charge, adrenilin and feeling of disorientation, 
I was wearing boots with very thick, rubber soles,
and I wonder what would have happened otherwise.


I and I am sure others around here are  glad you're still here,
and I imagine many elsewhere feel the same way.

Did that have the effect of making you afraid of storms, or the sound of thunder - for awhile?


Hi Patti,

You mentioned-
 i can understand having a dislike of loud noises.
 
There are some i have never liked the sound of - balloons popping is one of them ---
another is the sound of Loud fireworks.
Though I have enjoyed going to see some beautiful fireworks displays in the past.
My favorites were ones over water.
And I miss being able to do that, but it is one of the things that will most likely remain on the list of things i will not do in the future.....So much more used to be on that list though,
but For Me to go to a large fireworks display, I think would be foolish - even in the future, even if/when I am able to tolerate a whole lot more in the way of sound than i am now.

There are so many other things to enjoy,
and to be grateful for what we can enjoy, as we keep working towards being able to tolerate more in the way of sound - I think is part of the key to happiness when one has these challenges ......
And I think we can also be grateful that with these challenges, there are ways to improve.

Sorry to hear about the spike in your tinnitus  - hope it settles down soon!
P.S. I am hoping to  be able to tolerate more in the way of sound, in the future,
and expecting to be able to do so as welll  - and that is based partly on what I am able to tolerate now, compared to what i could before. And also partly on how far I seen others have been able to get, with regards to these challenges...
when they have worked on them, by desensitizing to sound -  in ways that were truly helpful for them to do so.

Keep working on it Patti, and may your path keep getting smoother.

Wishing you and everyone here much better days,
aQB
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Debbie

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Reply with quote  #15 

Hi Breeze,

Thank you, no - that experience did not make me afraid of thunderstorms for awhile. I love storms and have a very healthy respect for lightening storms though. The experience did not change much, it was an accident,  I was at someone's door waiting for them to let me in when the storm started coming down in buckets.
Overall I was glad to have had that experience because it let me feel another part of how the world works. I really didn't think it could have been a life/death situation........although..without those boots....I'm sure it would have been different....and on the other hand, without those boots keeping my feet dry from puddles, I might not have chosen to be at someone's door on a rainy night.
So it all just seemed to fit together and provide me with an interesting experience.
But now that I think of it...
how many times we may not realize when luck saves us, ends up in our favor, spares us....how often do we fully realize the unknown blessings, the narrowly averted disasters, the times when even though something might seem boring or bleak...we've received a precious gift? 
How often do we thank god for the miracle of another day?

So..thank you Breeze for inspiring that reflection, because life is not always as it seems...many things may have gone in our favor that we could be feeling extraordinarily pleased and grateful about if only we realized. 


Debbie 


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svenika

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Reply with quote  #16 
hi, i don't know if i am posting this correctly. i just found this site and can't believe how many people there are like me. i thought i was losing my mind and i haven't told very many people. certain noises like popping gum or chewing get to me so bad i have to remove myself from the area. i just graduated from nursing school and i don't know how i even made it through. sitting in a class with over 50 people all chewing gum and tapping their pens drove me insane. things got so bad i once handed in blank paper because the kid across from me kept popping his gum. it's actually painful for me to hear certain noises. i can't sleep anywhere except my own house because i need a fan on high next to my head and even then i have to sleep a certain way because i can hear my heart beating and it keeps me up. if anyone has advice it would be greatly appreciated. all i know is things have been getting worse every year...it's to the point now that these normal everyday noises are giving me anxiety attacks and affecting my work. help!
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goldie

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Reply with quote  #17 

About a month ago the Drs. section of The Press Enterprise Newspaper of Riverside Ca., explained about Hyperacusis and referred readers to this web.site for more info.. My hat's off to Dr. Donahue for sharing this info. and helping me to know I'm not alone in this sensitive hearing condition.

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Debbie

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Reply with quote  #18 
Hi Svenika,

What you are describing is not considered to be hyperacusis but 'misophonia.'
You might also see it under the heading of 'soft sound sensitivity syndrome' or '4S.'
Sounds emerging from the others mouths, throats and noses....and clicking noises at the office are frequently mentioned triggers for the extremely discomforting symptoms.
Some here guess that these symptoms are due to a past psychological/emotional life event.
On the other hand there is reason to believe that this set of symptoms emerges from a physical change in the brain unrelated to emotional life events.
This problem has not been carefully studied yet from a scientific standpoint.
You can search this site for 'misophonia' and find many posts and threads on it and there is also a different website devoted to those dealing with this cluster of symptoms.
So far, people have been using sound masking and/or self-talk to make the symptoms less bothersome.
Maybe in the future more will be known about this condition and how to significantly help or cure it.
Wishing you the best,

Debbie

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aQuieterBreeze

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Reply with quote  #19 
Hi Debbie,

Thanks for your reply and for sharing your story of what happened, and for sharing your perspectives! - I will probably reply a bit later.

Hi Goldie,

You mentioned -
About a month ago the Drs. section of The Press Enterprise Newspaper of Riverside Ca., explained about Hyperacusis and referred readers to this web.site for more info.. My hat's off to Dr. Donahue for sharing this info. and helping me to know I'm not alone in this sensitive hearing condition.

Thanks for letting us know - do you  have a link for the article and/or  perhaps remember the name of it?

Hi svenika,

You mentioned -
i can hear my heart beating and it keeps me up. if anyone has advice it would be greatly appreciated. all i know is things have been getting worse every year...it's to the point now that these normal everyday noises are giving me anxiety attacks and affecting my work. help!

Some people who  find sound difficult for whatever reason, whether it is from hyperacusis - or because they do not like certain sounds, or are bothered by them..... may use hearing protection alot in environments where it is not really necessary - and overuse of hearing protection can make one even more sensitive to sound .....

And because you mention that your situation has been getting worse, i wonder if you have been using hearing protection alot?

Also, you mention that you hear the sound of your heart beating.
you said -
i can hear my heart beating and it keeps me up.

Could that also be described as the sound of your pulse, that you notice hearing, in your ears?

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pattiluv

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Reply with quote  #20 
aqb,
you are such an inspiration!
i must admit, it is tough sometimes having h
yes there is so much to be grateful for
but i find i don't really enjoy being around old friends any more
i feel like i don't have as much in common with them
and that makes me sad...
they go to movies, and plays, parties and dances,
and when they come over they don't know whether to whisper or i feel them feeling sorry for me
so...
i am doing what i can to make a new life for myself
being alone seems easier -- i do have a few close friends, that's it
less emotionally challenging
warmly
patti

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kimberleydust

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Reply with quote  #21 
Hi Yaffel,
I can relate to your situation well - loud sudden noises like doors banging, thunder etc - noises that aren't even that loud but can be clanging, sharp and sudden - also make me startle and jump and that triggers off a movement reaction in my body.  It causes the right side of my body to jerk and shake - usually my shoulder and arm but can be leg as well.  I was very interested to read the comment from Debbie..
"One type of dystonia, if I understand it, seems to correlate with the startle response.... Have you have seen a neurological specialist in not just specifically sound-related startle but dystonias - because exagerated & spastic response to sound may be consistent with dystonia."

I have a brainstem tumour and one would think that this would have something to do with my responses but my Neurologist has seen how I respond to banging doors and the distress it causes - I was even put into hospital and drs saw a video of me when I was having an 'episode'...they said that it wasn't a movement disorder and promptly sent up a psychiatrist!  I still have the problem and this is part why I avoid many situations to avoid these reactions - they just cause too much stress and setbacks...for me it is more than a phobia of loud noises because it hurts the ears (which actually doesn't happen with me).  It's a self preservation because of the complication of effects it has on so many levels...

Maybe your situation is  neurologically based  like mine and perhaps it would be worth seeing a neurologist and at the least have an MRI?  I'm not saying you have a brain tumour (we don't really know if mine is the cause of my problems or not but say it is most likely as there isn't any other explanation) but it may be worth getting it checked out...
Hope this helps a little....

Lou

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Debbie

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Reply with quote  #22 

Hi Lou,

Oh Dear, why Dr.'s who are doing treatments on an individual's brainstem and cerebellum, and treating a tumor within the brainstem, would attribute symptoms which began during treatment and/or with the growth of this tumor would overlook the (outrageous) possibility that impacts to these structures, which play critical roles in movement regulation and equalibrium, could have something to do with the person's symptoms...
and instead leap to the (obvious?) conclusion that the individual must be having psychological problems seems bizzare.

Is it so challenging for a doctor to begin with the premise that the majority of patients who are describing symptoms are sincere, insightful, sane, and truly in need of medical help instead of a premise that patients, above and beyond those in the general population, are given to dillusion/psychosis?

Sure, some with psychosis show up at medical doctors offices to treat psychosomatic illnesses...but where is the  discernment?


Is the line drawn closer to the doctor's lack of current understanding about how something could lead to the presenting symptoms...
or to deep discernment about what constitutes signs of dillusion in an individual? 

In my opinion, within that discernment, there needs to be an especially wide berth to account for the fact that crazy neurological conditions can leave a patient in disorientation, pain, fear and overwhelm...in addition to any other basic signs of the condition.

For a Dr. not to become a detective in most cases, tracking down how and why the patient's symptoms could result from a physical origin even if not at that moment understood by the doctor, is a great disservice on many levels.

Validation and at least an attempt at compassion by a doctor is itself a mental health support to a patient, and can support the compassionate energy of friends and family, save the patient enormous time and energy in getting to direct symptomatic or curative help, and can lead to new research that furthers all of the above.

Dr.'s must realize the psychologically and physically harmful effects of the all-too-common fallback on the assumption that a patient is expressing signs of mental instability or dillusionment when it comes to the complaint of bizzare symptoms.


And on another note entirely,
I know that Lou did not mean to say that a given symptom might be due to any given cause...

It seems that very different sources of impacts to the brain might lead to similar symptoms if those impacts have been able to affect similar brain regions, in ways which might or might not show up on imaging.

I agree with Lou that meeting with a neurologist (a good one) should help determine IF something which COULD show up on imaging seems important to rule out.
And also want to say that aside from tumers and gross injuries, it may be difficult or impossible to "image" even some conditions with known relationships to changes in certain brain structures. 

Ok, getting off my soapbox!
Wishing everyone the best possible day,

Debbie




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kimberleydust

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Reply with quote  #23 
Yes Debbie this is true ...
"aside from tumers and gross injuries, it may be difficult or impossible to "image" even some conditions with known relationships to changes in certain brain structures."
This is the difficult thing -if only imaging could show up the finer things going on in the brain then they would be able to see if my sensitivity is caused by the tumour or RT because then they would be able to see exactly what the nerves are doing - eg whether they are being strangled by the tumour or whether RT has burnt them together and adhereing to the tumour/brain tissue etc.  Will be a good day when they can see such fine detail.

Also very true... 
"It seems that very different sources of impacts to the brain might lead to similar symptoms if those impacts have been able to affect similar brain regions, in ways which might or might not show up on imaging."

This actually happened to me in the beginning of diagnosis and is quite a common occurence - before I had the MRI it was considered I had MS due to my symptoms (given that BT's are less common - and also my Mum had MS).  The symptoms were the same for both MS patients with lesions in the brainstem and tumours in the brainstem in the same area.  The symptoms are the same if the same nerves are being affected - it doesn't matter what the cause of the effect is in this case - same if RT starts affecting the nerves - on imaging they can't tell if it is tumour effect or RT effect.  It may not be any of the above - it could be a stroke or other disease but if the same nerves are being affected then the end result - the symptoms you have to put up with - will be the same/similar.

I am hanging a lot of hope on the professors (from Dr Hazell's site) I have written to, to give me some answers. 

Lou
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