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catlady2323

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Reply with quote  #1 
Hello,

I am new and wanted to introduce myself.  I am married, have three successful, young adult children, 2 cats a dog, and can remember when John F. Kennedy was shot. 

I also have hyperacusis (LDL of 50dB) along with hyperacute hearing (hearing at 0dB at both the lower and higher frequencies).  I was born with both conditions and was diagnosed as "borderline autistic" at 2 years old.

I graduated college with a Bachelors degree in Business Adm. when bell bottoms and disco dancing were the fashion, and "Jive Talkin'" was a hit song by the Bee Gees. 

I have also spent 4 decades trying to navigate in a world that is far too loud and busy for my sensitive nervous system.  Along the way I have found some things that do help, and some that don't, and some that are just plain silly and only show the ignorance of those suggesting I try them. 

Since my hyperacusis is the result of improper brain development (and not from a traumatic hearing incident), there is no scientific evidence supporting TRT as an effective means of treatment in my case. Since there is no cure for me,  I have gradually over the years found tools and attitudes that have enabled me to negotiate and navigate my way through relationships with those who do not have hyperacusis. 

I now enjoy a stress free life, without the constant pain and frustration hyperacusis and hyperacute hearing caused me for years.  I still have both conditions (only oddly enough I do not have tinnitus) and have done extensive research on both of these neurological conditions. 

I look forward to reading your stories, and contributing what I can to the discussion when appropriate.

With regards,

Sharon









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markbergemann

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Reply with quote  #2 
Sharon, welcome to our group. 

I too remember when Kennedy was shot.  I do not remember where I was for that, but I do remember being in the basement of my parent's house when Oswald was shot. 

Mark


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Mark Bergemann
The Hyperacusis Network saved my life (that's the way I see it)
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catlady2323

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Reply with quote  #3 
Hello Mark,

Those were the "good ole' days"  weren't they.  I was very young when JFK was shot, but did live through that era.  I more clearly remember the Beatles ("Love Me Do", "I Wanna Hold Your Hand") probably because I was singing those songs.  LOL

I was born with hyperacusis and hyperacute hearing, so I have never known anything else.  How lovely it would be to be able to be in public and not hear the sounds of things like fluorescent light bulbs (they hum).  I can imagine I would be able to be very productive if I did not live with the constant onslaught of noise!  I enjoy the sound of pink noise, but alas the sounds of "civilization" routinely go outside the frequency boundaries of pink noise.  If I worked beside an ocean I would be fine !  LOL

You said this community "saved your life".  How so ? 

I have both a low tolerance for noise level (LDL 50dB) and a low tolerance for the amount of noise I can handle (at 50dB) within a single day.  Kind of like having a very very very small bladder, and thus requiring "relief" from that uncomfortable feeling many times a day. 

Have you found the hyperacusis becoming less severe as you age, or more severe? 

Thanks for the welcome to this community.

Looking forward to reading your posts,

Sharon

 

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Jackie169

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Reply with quote  #4 
Hi catlady (sharon)
Welcome to the site - it is fascinating to learn of those with hyperacusis. I had never heard of it before my accident let alone know that people are born with it. I look forward to learning from you as you state you have done lots of research in this.
Thanks for advice on my post.
take care
Jackie
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markbergemann

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Reply with quote  #5 
Sharon asked how this community saved my life.  It is because instead of living the life of a hermit, I am living a normal life, thanks to this network and the treatment it lead me to find.  My hyperacusis is still a big issue, but it is under my control and not controlling me.  In case anyone wishes to read it, I posted my story in a forum on Feb 4th.  I pasted a link below that may work, or you could simply look up all the posts I made and go to the one on Feb 4 (not that many posts as I am fairly new here).

http://www.chat-hyperacusis.net/post/show_single_post?pid=38671329&postcount=5

Mark

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Mark Bergemann
The Hyperacusis Network saved my life (that's the way I see it)
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Johnloudb

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Reply with quote  #6 

Quote:
It is because instead of living the life of a hermit, I am living a normal life, thanks to this network and the treatment it lead me to find.

Careful Mark, don't let Sharon hear you say the word hermit. 

http://www.chat-hyperacusis.net/post/show_single_post?pid=38833874&postcount=4

Quote:
Since my hyperacusis is the result of improper brain development (and not from a traumatic hearing incident), there is no scientific evidence supporting TRT as an effective means of treatment in my case. Since there is no cure for me.

Hi Sharon, 

I wouldn't completely rule out TRT, just because you were born with this condition. Some autistic people can overcome the condition with retraining. The brain is very adaptable and people often overcome the effects of brain damage through retraining and good thoughts.  

I don't know what you've tried up till now, or if TRT can help you, but it might be worth investigating. 

I have global brain sensitivity as a result of phonopobia (fear of sound). It's kind of like a second cousin to Autism. I have many of the same challenges autistic people face. Of course I wasn't born with it, and can and do make progress.

But, I've heard people say Autism is a developmental disorder, and maybe there is hope for progress with retraining your auditory system. I don't know.

People can increase their IQ too, through learning. So, given that we learn sounds maybe you could retrain your hearing to respond more normally to sounds. 

Just my thoughts. 

Best Wishes,

John


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markbergemann

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Reply with quote  #7 
Sharon, you are an inspiration with all that you have accomplished.  You seem to be very informed about hearing issues, so I'm interested in listening to more of your wisdom.  I would join John in mentioning that recently discovered medical knowledge shows we can all develop new brain cells and connections at any age.  Even though you were born with hearing issues, that may no longer mean that improvements are impossible. 

I used the term "hermit" because that's what I felt was happening to me.  I saw myself becoming a sad hermit.  (Sharon says she is a happy hermit.)  I still had an active life, but was wearing such heavy hearing protection that I could not really hear what I wanted too hear.  I was close to eating only soft foods as I could not eat anything crunchy.  The network informed me that I was taking the wrong path.  I did not know how to live with hyperacusis.  I now know how to live with it, and how to work to improve my situation.

mark


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Mark Bergemann
The Hyperacusis Network saved my life (that's the way I see it)
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catlady2323

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Reply with quote  #8 
Hi Mark,

I read your story from the link you posted. Your journey with both tinnitus and hyperacusis was interesting to read. I wanted to comment on several experiences you have had that made me recall some of my own. 

First of all I suspect when that firecracker exploded in your face, that the loud "bang" damaged both your eardrum and the hair like cells in your inner ear causing the tinnitus you have subsequently experienced.  Of course this is an educated guess, as I am not an ENT.  Since you then had a period without tinnitus it sounds like the eardrum healed but may have been left partially damaged (like having a weak knee after a healed football injury).  So then as you continued to use your ears the already weak eardrum (and possibly damage done to the inner ear also) caused the tinnitus to return. 

Oddly enough I do not have tinnitus.  My hyperacusis is not from damage to the inner ear.  It is further along the path of translation of sound to the brain.  Most likely in the brain stem.  My ears are fine, and my hearing excellent. (I also hear right through 30dB reducing earplugs). 

I had to laugh when you mentioned wearing ear plugs with ear muffs at church.  I wore Bose noise canceling headsets to church!   I not only looked ridiculous (like a bug with large ears), but it did no good.  I heard right through them!  We had one speaker who had a voice that went right through me.  I was miserable!

My two daughters played basketball, one daughter's team won the state championship, and it was torture for me !  LOL

Have you had yourself tested to find out your LDL ? 

I am curious about your LDL because I have no trouble at all with the sound of my own eating (or anyone else for that matter).  So I wonder if possibly your LDL is more severe than mine, which is 50dB, or if you also have hyperacute hearing which is "better" than mine.  I hear at 0dB at both the low and the high frequencies.

Well thanks again for the welcome to the hyperacusis network.  I look forward to participating in the many lives and discussions at this forum. 

Sharon

P.S.  I have studied neuroscience extensively (one of the many advantages of being a hermit, time for extensive study !  LOL )  The plasticity of the adult brain to form new neurolpathways is a new concept and not well understood.  Since TRT is designed to "re-habituate" the brain to noise after trauma induced hyperacusis, the implication is that the person started with a normal brain with normal neurolpathways that then were disturbed by the trauma.  Hence the treatment will return the brain to normal functioning (like exercising a muscle that has lain dormant due to an accident).  In my case, I did not begin with normal neurolpathways, and hence there is nothing to "retrain". 

I do listen to pink noise on my laptop (while doing research !) at my comfort level (50dB).  As it turns out, pink noise is comforting to the central nervous system (possibly because nature sounds are what we are habituated to from an evolutionary perspective ?), and so this makes studying a relaxing experience.  I hold no illusions however that it will increase my LDL, and have no plans to increase the volume to uncomfortable levels.









 

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Rob

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Reply with quote  #9 
Hi Sharon.  Glad to see you making yourself at home here.  
 
In the context of hyperacusis, plasticity doesn't necessarily mean to change the way the brain functions with respect to sound back to the way it used to function.  It refers to the potential receptivity of the brain to learn to process sound differently than it currently does.  
 
You sound convinced that desensitization therapy would not help you because you were born with a decreased tolerance of sound.  I don't think anyone can say for sure whether that is true or not.  I certainly don't know, but I don't know that it is impossible either. 
 
My LDLs were in the 30s and 40s.  They are now in the 90s and 100s.  I've had my LDLs tested several times, and I regard it as an excellent test when administered accurately as well as a very good way to determine one's progress.  
 
You may have written this elsewhere, but are you able to tolerate speaking voices?  
 
The reason the Bose noise cancelling headphones did no good is because they do not cancel all frequencies, some of which you are particularly sensitive to.  They do an excellent job with very low frequencies, but do not cancel most of the frequencies associated with the speaking voice.  That is why when we wear them on an airplane, the headphones block the low rumbling sound of the airplane engines but allow us to clearly hear sound of someone's speaking voice.   
 
Rob
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catlady2323

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Reply with quote  #10 
Hello John,

Thanks for your thoughts on TRT.  I am familiar with the Jastreboff model, which in my opinion, would be a highly effective treatment for the brain of developing children (for say usage with children on the autistic spectrum).  The developing brain is very different from the adult fully developed brain, and hence the plasticity is different.

The Jastreboff model (which led to the development of TRT) says "
Tinnitus Retraining Therapy can restore totally or partially the normal level of sensitivity to sound."  Notice the word "restore".  You cannot "restore" what never existed.  I cannot train my brain to "restore" the  wings on my body, no matter how positive my thoughts nor how diligent any other efforts I might make towards that goal.  I cannot "restore"  what was never there to begin with. 

I am sorry to hear that you have phonophobia. That must be difficult for you with your love of all things audio.  I have no fear of sound or noise.  So long as everything stays at 50dB  LOL.  No seriously, I don't feel that panicky emotional response some people have when anticipating or confronted by noise outside of their LDL.  I just calmly deal with the source of the noise, or take steps to handle it while exposed, or remove myself from it. 

<maybe there is hope for progress with retraining your auditory system. I don't know.>

My ears have been exposed to normal sounds for 5 decades !  If there was going to be any habituating, it would have occurred by now !  LOL   I attended college, married, raised three children to young adult hood, all with no knowledge of hyperacusis as an actual medical condition needing treatment.  All that is different now is that I have a fancy name for my misery during those years, LOL, and alot more knowledge of neuroscience. 

Thanks for your thoughts and good luck with your endeavors to navigate through the world of noise and sound,

Sharon








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catlady2323

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Reply with quote  #11 
Hi Jackie  ,

I have to admit, I am also finding it fascinating that there are others who can relate to a life lived experiencing both the discomfort and even pain from "everyday" noise.  Imagine my relief when I discovered that hyperacusis is "real" and for some primarily a neurological condition.  Who knew ! LOL  It certainly helps explain the years I spent crying in bathrooms from noise overload, and the years I spent craving silence (which I now enjoy to my hearts content, without guilt). 

I have only recently begun studying hyperacusis, origins, causes, and treatments.  I have however been studying neuroscience for several decades, so do have a basic understanding of neurolpathways, brain structure and functions, etc.  This has helped immensely in understanding my own particular "brand" of hyperacusis. 

Hope you find something useful from the study I have done, and/or from my experiences with hyperacusis,

Best regards,

Sharon




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catlady2323

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Reply with quote  #12 
Hi Rob,

Thanks for the welcome.

You are correct, plasticity does refer to the potential for the brain to lay new neurolpathways, and this is an ongoing process.  But there are still limits to exactly what can be accomplished with a fully developed adult brain.  I can say for sure that I was born with a decreased tolerance for sound based on the recollections of my mother and grandmother who both cared for me as an infant.  Noise and touch were both so painful to me, they would leave me in a dark quiet room for hours and hours as a baby and young child, because if anyone approached me I would scream incessantly.  They found that only by keeping me in a totally quiet room that I would settle down.  Through out my babyhood I was sequestered from the rest of the family.  So although no diagnostic exams were performed for hyperacusis (which of course was not even recognized as a medical condition at that time),  I did respond in such a way that it was obvious that noise was very painful to me. 

I had my LDL tested in July 2009.  My LDL was 50dB , with normal adult hearing in the medium frequency ranges, and 0dB hearing at both the low and high frequencies.  My ears are perfectly normal.  I have no pain, no feeling of fullness, no tinnitus, did not suffer ear infections as a child, have never been exposed to loud music or noises, in other words this is not trauma induced hyperacusis.  I suspect if my parents had known to use TRT when I was a child, it would have helped raise my LDL. 

I have no trouble with speaking voices.  In fact I enjoy one-to-one conversations immensely. 

I had to laugh when you mentioned that the Bose headsets only cancel out certain frequencies.  That would of course be true  LOL  since they were designed for use on airplanes, and in other situations where you would still want to be able to hear people talking to you.  I returned the headset after using it for just under one week.

The human brain is amazing, and neuroscience is a young field with ever more discoveries being made concerning its intricacies.  Everyone has limits they must live within, mine just happen to be narrower when it comes to noise and sound exposure. 

Thanks again for the welcome,

Sharon



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Rob

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Reply with quote  #13 
Sharon --
 
Here's something to think about.  How were you able to tolerate the sound of your own incessant screaming as a baby or young child?   
 
Here's something else.  Speaking voices are usually above 50dB.  Since you can tolerate them and enjoy having conversations, your LDLs are likely higher than 50dB. 
 
Rob
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catlady2323

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Reply with quote  #14 
Hi Rob,

You are so funny.  I just laughed when you had the quick thinking to ask "how were you able to tolerate the sound of your own incessant screaming as a baby..."  

First of all, do you have any children?  This made me laugh because either it was a tongue in cheek question, or just a lack of knowledge about babies.  LOL

A baby does not have the cognitive skills to understand that its own screaming is causing it pain.  When in pain, babies scream, period.  No matter where the pain is coming from.  When left completely alone, as a baby, in a silent room, I did not cry nor scream.  This remained true for me as a toddler ( I am on the autistic spectrum so I did not do normal exploring like non-autistic children.  I was content to spend hours alone in silence spinning spoons). 

I also had to laugh when you said speaking voices are usually above 50dB.  Dang man! Who are you talking to ?   Either I have very quiet people talking to me, or you are in louder environments where people are by necessity speaking louder.  I have noticed that when I first wake up in the morning the sound of my husbands voice is too loud for me.  I have to gradually acclimate to his voice and other sounds like running tap water, and I will often ask him to whisper or be quiet until I get fully awake.

By the way, I love your idea about using music to increase LDL's.  Great idea !  Do you think that protocol played a significant role in your own recovery?  I have used music to prepare me for difficult tasks (like childbirth) with great success.  Never occurred to me that you could also use it for hyperacusis.  Genius idea !

Sharon 

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Rob

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Reply with quote  #15 
Believe me, I wasn't asking out of ignorance of kids or to be funny.  You had written that as a young child you screamed incessantly and I was asking how you were able to tolerate that given your decreased tolerance of sound? 
 
Normal speaking voices are usually closer to 60dB or a bit higher.
 
The music protocol was very helpful to me.  So was the use of broadband noise, putting some neutral background sound in the room while I slept, and getting out in the world.  Ironically, for a long time I wasn't able to tolerate the pink noise CD available from this network.  The reason that's ironic is I made the CD with a couple of colleagues.  But I worked with less ambitious broadband noise which covered a smaller bandwidth, and gradually increased the top end frequency.   
 
Rob 
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catlady2323

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Reply with quote  #16 
The screaming occurred as a baby only.  I misspoke.  As a young child I was very quiet (no screaming) and was content to be left alone in a silent room for hours.  Very perceptive question, by the way.

LDL refers to discomfort level, and yes I feel discomfort when I am exposed to constant talking.  It only becomes painful after hours of exposure. 

That is ironic that you could not tolerate the pink noise CD you helped to produce.  I also use noise when I sleep, from a sound machine on low volume, set to the rhythms of the ocean.  During the day, I have a soundtrack on my laptop that allows me to listen to numerous natural sounds that are within my frequency tolerances.

 I have found the noise and sound tolerance levels that allow me to remain pain free.  I have not decided to try and expand those tolerances.  I have to be careful as I have other neurological difficulties and I get what I call a "kickback effect" if I wander to far outside my noise tolerance level.    Since my problems are literally  "all in my head", and not from any actual damage to my ears, all the pain I feel is emotional/psychic pain, not physical pain in the ears.  I have great ears !  LOL

Sharon









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