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Sadears

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Posts: 62
Reply with quote  #1 
Hello everyone,

It has been a while since I have posted on this forum, but I relied on it heavily when I first developed Hyperacusis in 2014. I wanted to share my story in hopes of helping others suffering and offering advice to improving their condition. I succeed with pink noise therapy, sound therapy and desensitization. The Hyperacusis network and the forum offered much support and information to me which I am eternally grateful for - a big thank you to Dan, Andrew and John [smile] I am a musician of 10 years and still write, play and listen to music in every way that I could before I developed the condition. I hope my story can help someone dealing with this condition. It can get better. I never thought it could for me and it did beyond what I imagined.

I would be happy to answer any questions. The video link is below.

Cheers,

-Adam






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Rick

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Reply with quote  #2 
Adam, thanks for taking the time to post this video. This is such a miserable, life-altering condition. And most doctors are pretty useless when it comes to treating it, or even knowing about it. So it's really good to hear a success story. Very inspiring. And good luck with the music. 

Rick 

P.S. I actually saw Dr Jastreboff in person. He helped me a lot, too, as far as changing my attitude towards H and T. And just realizing that 80 db is not going to make me worse. I gotta pick up his book. I'm sure it helps to re-read it every now and then.
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saab1216

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Reply with quote  #3 
Thanks for sharing. As a musician ,I can relate to this. I'm on limited time but will continue watching this video later. Thanks again.
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rodmccain

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Reply with quote  #4 
Hi Adam!  Thank you for posting, as I have thought about you from time to time.  I am so very happy to hear that you are doing well....at last!

This is extremely hopeful.

God bless,
Kathy McCain 
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makarakam

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Posts: 14
Reply with quote  #5 
Thank you for the video, it is great to hear someone with the good news for a change, and I wish you best of luck. I have a question regarding this video, as another musician with that problem - you mentioned several times in your video how much you suffered after going to some loud gig and such; my question is, how you even managed to go and survive there? Do you have some great hearing protection, and if you do, what is it? I am currently using alpine pro earplugs for musicians with highest protection (gold filters), and it enables me to survive rehearsals but we are playing at extremely low volume because of my condition. And I still have pain and setbacks sometimes when something louder happens (ie drummer forgets to be careful for one song or singer yells something and such), and as for having rehearsals at normal volume or even gigs, I can only dream about it, can't even walk past the open doors of the bar with live or loud music in it without problems... Loud noise of any kind hits me with the force which I literally feel as a blow, I loose my balance, get terrible headache, nausea, confusion, everything gets super loud again, and I can't even recover my concentration and awareness long enough to run from that place of noise, it  takes me a minute or so to regain my comprehension enough and then I run from there, and suffer greatly for a period of several days, weeks or months depends of the damage I took. Any playing and suffering for it later is totally out of the question, since I can't stand upright or remember my name or anything... 
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Ghirin11

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Posts: 17
Reply with quote  #6 
Hello Adam,

I am so grateful for your video. Everything you described is where I am at right now. I have been to countless specialists and no one knows. It has been going on for a year. It completely alters your life. I have been on the verge of crumbling to pieces many times. I hold a full time job in an office. It is quiet other than a cube mate that has a loud bolstering voice. Luckily he is not always there. I have yet to start TRT training. My brain is so scattered from the daily barrage of alered sound, pain, aural fullness that I actually found an old post of mine back in June where I said I was going to pursue it but never did. Everyday is such a struggle that I force myself to go through the motions of life. I am assume that’s one of the reasons I didn’t pursue it. I finally went to an Audiologist last Tuesday and she let me wear some sound generators. They seemed doable: They masked the extreme fullness. I was taken aback when she said the treatment was $3,000. That includes the generators and a call from her once a month. That may be a typical price but I was not aware it was so expensive. I am trying another Audiologist on Dans list. Not just because of the price but when she was baffled by my aural fullness and said she had not heard of that with hyperacusis. That was not only disappointing but kinda a red flag. I have a phone consult next Tuesday with Roger Fagan in Portland ME. Anyway, thank you so much for your story. It is so comforting to know it can be overcome. Also to know not to give after many months. I didn’t know it could take up to two years.
Sincerely;

Mona

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Mona Ghirin
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Aplomado

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Posts: 711
Reply with quote  #7 
Mona, ear fullness is 100% normal with hyperacusis, it is odd that the doc didn't know that.  

The sound generators are very helpful to me (at least).  In my opinion they are worth the high price of 3,000 which is typical.

I would not be surprised that you want a more knowledgeable doc though.
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flying_dreams

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Posts: 6
Reply with quote  #8 

Congrats Adam! 

I totally relate to the misophonia aspect - I'm no longer negatively affected by the sound of sirens, traffic, dishes etc. but music still poses a 'threat'. Slowly building back a tolerance and I feel good about my progress. 

Like you, I'm a musician and am very focused on retraining therapy so I can get back to making music more often.

I'm curious about how frequently you went to shows during your recovery process. I have only gone to a few concerts/clubs since hyperacusis/tinnitus set in (with plugs) and would like to edge my way back in. The thought of going to a loud show can be enough to rev up my hyperacusis and trigger anxiety and I would like to combat that. 

 

 

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Ghirin11

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Posts: 17
Reply with quote  #9 
Aplomado,
Thanks for the reassurance that fullness is indeed part of hyperacusis. After 8 doctors visits and finally getting to see what I thought was an “informed Audiologist,” you can imagine my disappointment. I am not saying she was the least informed doctor, heck no! At least she knew about hyperacusis and was trained in the Jastreboff method. She also doesn’t take my insurance which was another reason I sought out an alternate Audiologist. Well the good news is that I am scheduled to see Roger Fagan in Portland ME. I did a brief consult on the phone and he seemed knowledgeable. After a year of this I am so ready to have a live person that understands. No one can fully understand it’s life altering grip on you. I hate being grumpy to the ones I love because I have to save my good face for work. It is draining. I hadn’t really researched the price of treatment but I see now, it is anywhere between 3,000 and 5,000. Any amount of money is worth a better quality of life. Thanks Again

Mona

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Mona Ghirin
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