The Hyperacusis Network Message Board
Sign up Latest Topics
 
 
 


Reply
  Author   Comment  
lk

Registered:
Posts: 185
Reply with quote  #1 

First I want to thank Joyce to show how noisy our world has become... and also ABC news what it is to have  hyperacusis/sound sensivity/misophonia and/or phonobobia ... 

see link:

http://abcnews.go.com/2020/video/everyday-noises-pain-wife-husband-living-ny-22421602

BUT.

For all newcomers to this message board and others who are in this situation, I can only give the following advice: 

- maybe you have to move (tempory) and live where it is more quiet .
- start a carefull sound enrichment program with proffesional help!! 
- go also for help when you have such great misophonic and phonofobic reactions to low sound levels..
- stop overprotecting your ears for normal soft sound, because this is making your ears more sensitive...
- give your ears nice gentle sound, ears are made for hearing  not for staying in silence ...

Good luck ,

Greetings,
lk

 

 

 

0
Delfade

Registered:
Posts: 16
Reply with quote  #2 
Can't listen what they are saying because I have H,
But thanks for the tips
0
maryann

Registered:
Posts: 3
Reply with quote  #3 
Is it possible to have this condition in one ear?  My ENT thought mine occurred from a car accident.
__________________
Mary Hughes
0
ArtIrish

Registered:
Posts: 153
Reply with quote  #4 
It was very exciting to have this piece of TV about hyperacusis.  I thought it did an ok job at showing what it is.  IT did not talk about possible treatments for improvements, but it made the point that this forces you into a quieter world, alone.  For some of us.  I have improved from the days of not being able to leave the house at all, let alone my bed.  For me, the tinnitus is the thing -  you may get pain and fullness I get hideous noises, hums, electrical swishes etc. .  I wish I just had hyperacusis.

An attention to this is good. 


__________________
IrishArtist
0
phacker

Registered:
Posts: 143
Reply with quote  #5 

Hi Maryann,

Hyperacusis can be in only one ear.  I had H in by left ear with my right ear normal for about 10 years. At this time, I had not idea what was going on and I went to two ENTs and was misdiagnosed with recruitment.  In the last year I have developed H also in my right ear.  H is selective as two people can be in the same environment and one person can start having issues with H and the other person is not impacted by the loud sound. 

I believe my grandfather also had H, he passed away about 40 years ago.   He repaired and tuned pianos and was sentive to sounds.  He knew that his ears were damaged from sound by his work on pianos. 

My point is that you need to be careful in loud environments as your normal ear can also develope the problem.

For 10 years I did eveything normal and went to sporting events, car races, venues with loud music as I simply put a ear plug in my left ear, but my right ear paid the price as I did not use protection in my good ear.  Today I cannot be in loud enviroments even with ear plugs as I get pain in my left ear from sounds above 60db and my right ear above 70db.

Our world today is louder than ever with music, tv, sporting events, city noise, car air bags deployed as a result more people are having issues with H.  The Super Bowl champions Sea Hawks pride them selves in having the loudest stadium in the NFL. My H issue started at a Oakland A's baseball game from a loud speaker by my left ear.   
 

0
maryann

Registered:
Posts: 3
Reply with quote  #6 
My ENT tried steroids, no help.  He then prescribed 1mg Xanax, it worked but left me goofy.  Can't have that and keep a job.  I just try to avoid using the speaker phone on my office phone.  That's the one thing that causes excruciating pain.


__________________
Mary Hughes
0
phacker

Registered:
Posts: 143
Reply with quote  #7 
Xanax is used to treat anxiety.  Did you get any temporary relief from loud sounds when using Xanax?

Low end speakers that are used in phone sets often have distortion and the frequency produced from distortion will cause ear discomfort.  If you need the speaker phone in your work environment, you may want to try a better quality auxiliary speaker connected to the phone. When in meetings using a speaker phone, I try to position my good ear facing the speaker phone and sit as far away as possible and ask that the speaker phone be turned down as low as possible and still have everyone in the room be able to hear. If I am still having discomfort, then, I will use a ear plug in the bad ear. At my desk I also try to use the hand set as much as possible.  

I am near retirement and the H is getting harder and harder to deal with at home and the work place. 

One thing that happens to me that I have not read on this site after exposure to loud sounds not only do I get pain from the loud sound, but I will have pain in my ear or ears for a couple of days after the exposure.  Sometimes it can be hard to sleep with the pain. When I brought this up to the ENT, he said that there are no nerve endings in our ears where the sound is produced, so I should not be getting ear pain days after sound exposure.
0
ontario78

Registered:
Posts: 186
Reply with quote  #8 
phacker look up 'tonic tensor tympani syndrome' you will find a possible explanation for your ear pain..
0
maryann

Registered:
Posts: 3
Reply with quote  #9 
The Xanax did relieve the pain.  But it was not conducive for me to take while at work, but I did for a few weeks once prescribed but only PRN.  It helped enough that I was able to stop taking it and now the pain is much reduced and infrequent.  Makes you wonder what might really be behind the extended period of pain after encountering to loud noise.
__________________
Mary Hughes
0
lk

Registered:
Posts: 185
Reply with quote  #10 
Of course it helps for TTTS pain, this little muscles in our ear are the reason of the pain...
and muscle relaxants like Xanax and other benzo's can help,
but
 they are not made for longtime use !!

Greetings,
lk
0
Rob

Registered:
Posts: 4,049
Reply with quote  #11 
LK had several sensible suggestions earlier in the thread.  I thought I would place his suggestions in the context of the segment on hyperacusis that aired on ABC.    

start a carefull sound enrichment program with proffesional help!! 

I thought the segment showed what can happen when a person with hyperacusis chooses to not get into treatment.  Ms. Cohen doesn't use sound enrichment and hasn't sought the help of a professional with regard to treating her condition.  As the segment made clear, Ms. Cohen's strategy, unfortunately, is to avoid sound and to spend an inordinate amount of time wearing hearing protection.  As tempting as it may be for a hyperacusic to avoid normal sound and overuse hearing protection, particularly when exposure to sound causes ear pain, this approach will serve to make us more, not less, sensitive to sound.      


go also for help when you have such great misophonic and phonofobic reactions to low sound levels..

Just as it is so important to treat hyperacusis, it is equally important to recognize and treat the other aspect of decreased sound tolerance.  Ms. Cohen's reaction to her soft-spoken husband's voice is a case in point.  In the segment on ABC, we were told "The sound of [her husband's] voice puts Joyce on edge.  She shushes him constantly."  Interestingly, Ms. Cohen could tolerate the sound of the interviewer's voice although Ms. Vargas spoke a little louder than Ms. Cohen's husband and Ms. Vargas's voice is, of course, higher-pitched.  Ms. Cohen's reaction is a textbook example of someone who suffers not just from hyperacusis, but from phonophobia or misophonia.  

Ben does not have hyperacusis.  He was administered a loudness discomfort level test when he was posting here, and his results were normal.  I was struck by his reaction to sirens.  At the end of the segment, the sound of a distant siren caused Ben to immediately seek refuge in another room where he felt safer.  And yet, early in the segment, he and his wife were sitting on a couch being interviewed when another passing siren was heard.  In this case, Ms. Cohen reached for hearing protection and her husband was calm, consoling, and remained by her side.  The interesting thing was that the sound of the siren when they were seated on the couch was noticeably louder than the siren that sent Ben into another room at the end of the segment.  I'm not suggesting that Ben's responses to sound aren't genuine.  I am suggesting that he and his wife are both badly in need of treatment with someone who is experienced in diagnosing and treating their conditions.           



stop overprotecting your ears for normal soft sound, because this is making your ears more sensitive...  

When asked if she ever goes outside without the industrial grade ear protection she wears, Ms. Cohen responded "Almost never.  Too hazardous."  In fact, it is rarely hazardous for folks with hyperacusis to go outside without hearing protection.  It is important for hyperacusics to slowly and purposefully expose our auditory systems to as many different kinds of normal sounds as we can, as part of therapy. 
 
- maybe you have to move (tempory) and live where it is more quiet.

Asked why she and her husband don't live in a quieter town or city, Ms. Cohen answered "No place is safe."  This isn't accurate.  The key is to be properly diagnosed, to get into treatment for decreased sound tolerance, and to stick with it.  The vast majority of people who do that are able to re-establish their tolerance of sound.  This is true for individuals with minor or average hyperacusis and for individuals whose loudness discomfort levels are very low.  It is true for folks who experience immediate pain when exposed to sound and for folks who also feel constant, nonstop pain in their ears.  


give your ears nice gentle sound, ears are made for hearing  not for staying in silence ...

The auditory system thrives on sound.  Depriving the auditory system of sound is not good for us, even if we are diagnosed with hyperacusis. 


Rob
0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,456
Reply with quote  #12 
I am usually thrilled when hyperacusis receives good media attention.  But not this way.  Likely someone on ABC saw Cohen's Buzzfeed article and was drawn to it.

The real shame here is that neither Cohen's utterly depressing Buzzfeed article or the 20/20 segment offered any hope for individuals suffering from hyperacusis. 

Joyce and Ben met through this network so many of us have had an opportunity to know them well.  I am happy they found each other and fell in love.  However, when it comes to hyperacusis, instead of just explaining what they consider their permanent plight in life they needed to tell people where to get help.  Why didn't they - because they not only refused to take the proper steps to recover but choose to live in one of the noisiest cities in the world.  The text of the 20/20 segment online only mentions Hyperacusis Research as a link.  This does absolutely nothing to help people recover.

I am also disappointed in ABC who routinely does a poor job of telling the whole story on any segment.  They sensationalize everything.  If ABC would have taken 10 seconds and googled 'hyperacusis' they would have quickly learned how to tell the whole story here.  Instead, they only chose to capitalize on the oddity of this little known auditory phenomena. 

This could have been great.  Rob was spot on with his assessment.  When Ben and Joyce were regular contributors to this message board he did everything he could do to help them.  They resisted every step of the way.  This is why they are the wrong people to tell the story of hyperacusis.  If they think for one minute that I am jealous that ABC did not contact the network they are wrong.  Anyone with hyperacusis can tell this story of what they have been through and what they did to get their life back.

[wave]Dan





__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0
Mamie

Registered:
Posts: 1
Reply with quote  #13 
So everyone recovers???  [smile]
0
lk

Registered:
Posts: 185
Reply with quote  #14 
No, not everyone recovers ...
But 80% does improve their LDL's after treatment!! 
An article like NOISE KILLS and the ABC news item without a single
reference to possible treatments are not good for new hyperacusis sufferers ! 
Because often these people are already in anxiety and panic
and it is not good to take all hope of (partial) recovering away ..
It is even dangerous! 
And wich therapy Joyce ever followed ? 
no therapy ... 
And how can she tell everyone that therapy is not working
when she never had one herself?

Greetings,
lk
0
gpost

Registered:
Posts: 1
Reply with quote  #15 
Dan, I wanted to weigh in on the ABC News segment on hyperacusis.  I did hear mention that the couple met through the Hyperacusis Network.  I was then rather surprised that nothing more was said regarding the work you do and the support the Network offers.

It used to be news organizations were about gathering, validating and reporting information.  Now it seems to be more about sensationalizing everything, as you suggest.  That seemed to be the theme of the entire hour long show.

The real interesting stories are the ones you and your the message board posters share each and every day.  Keep up the good work!

__________________
Greg Post
0
saab1216

Registered:
Posts: 400
Reply with quote  #16 
To be in love and have someones identical condition only defines why they do nothing. when you struggle on your own and face the odds like losing a marriage and a job,you fight to get better.
0
Essayons

Registered:
Posts: 14
Reply with quote  #17 
That is a very interesting perspective.
0
Mummy_D

Registered:
Posts: 85
Reply with quote  #18 
Paul I agree - that takes far more guts. Keep fighting!
0
saab1216

Registered:
Posts: 400
Reply with quote  #19 
Thanks
0
matts123

Registered:
Posts: 73
Reply with quote  #20 
I was suprised and happy that 20/20 was doing a story on Hyperacusis, but as mentioned it is too bad that they didn't go more into detail on how to improve ones Hyperacusis. All they mentioned was wearing ear muffs which isn't a long term solution.
0
saab1216

Registered:
Posts: 400
Reply with quote  #21 
Yes, the 20/20 showing did no good.offered nothing in hope. It made a sideshow of this ever tormenting condition. If anything, there will be no sympathy offered to us anytime soon by the general public. Ive just learned to keep my pain to myself.
0
ontario78

Registered:
Posts: 186
Reply with quote  #22 
Well today I was told that the ent that was supposed to see me, says H is psychological and caused by anxiety...maybe he watched 20/20...my doc is sending me to another ent who she says is more symptathetic...a debilitating, tormenting condition, that we must fight on our own...aside from a few knowledgable doctors, but even then....
0
Johnloudb

Registered:
Posts: 1,951
Reply with quote  #23 
Hi Ontario,

Hyperacusis is purely audiological and is defined as increased central gain in the sub cortical pathways in the brain. This results in lowered LDLs. It is not damage. Misophonia/phonophobia is different and is a limbic and autonomic nervous system response to sounds and is neurophysiological in nature. Most people with hyperacusis have some degree of misophonia/phonophobia. This can also cause lower LDLs when people over use ear protection or over protect their ears.

Anyway, most ENTs don't really get it right, as they don't treat hyperacusis for the most part. The main reason to see an ENT is to rule out, or diagnose other physical conditions that can cause sound sensitivity like Lyme disease, brain tumors, and so on.

You do want a sympathetic doctor for sure, I agree with ya, and want a good one who knows their stuff.

Anyway, just felt like chiming in here ... I know this is all frustrating but you'll eventually get your answers, just keep at it!

John
0
ontario78

Registered:
Posts: 186
Reply with quote  #24 
Hi John :-)

Well you just answered the question I asked my husband, that if Audiologists are trained to diagnose and treat H, why do ENT's such as this one, only believe it's caused by anxiety...anyways the point is, my doctor is working hard to see that I get the best treatment and quickest. This ENT said I would wait 8 mths to see him, and doc said he has no bedside manor lol, so she has referred me to another, wait time is 8 weeks and apparently he is sympathetic :-) ..8 weeks is long, but Enza does require a ent note, so it will have to do...I need to figure out something for the meantime.

Thanks for your explanation!
0
matts123

Registered:
Posts: 73
Reply with quote  #25 
I would encourage everyone to like Hyperacusis research on Facebook. The more people that know about this condition the better. [smile]
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.



This message board is for informational purposes only. It is not intended to substitute for any medical advice. MANDATORY BOARD ETIQUETTE: 1. No personal attacks. 2. No profanity or use of inappropriate usernames. 3. No self solicitation of goods or services. 4 No discriminatory remarks based on race, gender, or religion. 5. Prohibitive postings include the following: discussing or suggesting the intent to end one's life, moderating or actions made by the moderators, and/or revealing personal information (full names, address, phone number). Rule infraction may result in either a warning or ban, depending on the severity. Kindness matters.