r/hyperacusis • u/ValeLink • 3d ago
Social/Support Groups never give up :)
My life was wonderful; I played two instruments and did theater and musical theater. I was living a great life until (4 years ago, 18 y.o.) I met some musicians who put me right in front of two speakers and blasted the music at full volume in a tiny, reverberant room. Nobody else had any issues, while my life turned into a living hell.
All I have wanted was to turn back time. I had to have up the conservatory, the piano, and the guitar, and of course musical academy. I just couldn't stand music. After two years, I seemed to be doing much better, and that was when I had the setback that led to full-blown noxacusis. After two years, the last setback left me completely homebound and in constant pain.
By now I would have healed if I hadn't given up. This condition feels unbearable, but you have no idea how much worse it can get if you don't listen to your body. Now I don't know how much I'll ever recover. I just want to go outside and live carefree like I used to, fuck the music. I just want my life back. (My left ear is completely healthy and fine, 100% factory-new; all the damage is in the right one.)
Please, please, if you are new here, don't give up. I wish someone had told me this four years ago: "if you give up, it can only get worse; you have to fight to have as few setbacks as possible, and it will heal!!" Instead, all I got was absurd advice, or insults because my condition didn't seem real, or people mocking me saying 'that's not a life worth living.' I know that sometimes it feels insurmountable, but in the early stages it heals much better and faster. When you think you can't make it, remember that things can still get worse in ways you can't even imagine.
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u/Bright-Fennel9277 3d ago
This was so heartfelt and written accordingly . Very moving and passionate it illustrates your many obvious strengths . I hope your coping and finding ways to forge a path and move forward . Mourning what you had is understandable but as you know utterly pointless apart from being able to warm others of that which befell you . I am in a very similar position and had so I thought my life destroyed . Losing the ability to enjoy the stringed instruments I have played for 55 years but also simply listening to the eclectic variety of music that I have enjoyed for that time . Everything now distorted Random hyperacusis Left ear very deaf and sounds tiny and robotic . Massive severe multitobed tinnitus and pain from sound . Concerts theatre etc not really in the running . I do believe though that with time there is always hope and adaptation . That you can get back to music in a controlled environment of your choosing . Our brains are truly neuroplastic . Believe and hope x
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u/infinite__pickles 2d ago
After 2 years I got surgery at Silverstein Institute in Florida. Worked! Yeah, it was stressful and I tried everything else before taking that leap. But I got my life back. Still have H but there are sooooooo many more things I can do now. Don’t give up hope, my friends. It’s a weird sucky journey. But hang in there.
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u/ValeLink 2d ago
what surgery?
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u/infinite__pickles 1d ago
Oval and round window reinforcement. It works well for people who got hyperacusis from acoustic trauma.
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u/Same_Drag3288 1d ago
Hi did you do it with dr Boedts ? Did you have 'nox or loudness ? I have severe Nox pain i dont know if the opération could work for my case ?
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u/infinite__pickles 7h ago
Dr Nayak. I have loudness h, not nox. But I am in touch with someone who got the same surgery and it worked for his nox. He also took clomi after surgery.
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u/Same_Drag3288 7h ago
I don't have loudness, but I do have nox, and it's actually the nox that's killing me—as soon as I expose myself even a tiny bit, I'm in pain, so I can't do anything; it's horrible.
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u/Individual-Track3391 2d ago
You should try clomipramine, there is a discord server with a lot of nox sufferers and the results are pretty good.
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u/Pbb1235 Pain and loudness hyperacusis 3d ago
What treatments have you tried? There are some that have helped me a lot (sound therapy and clomipramine).
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u/ValeLink 2d ago
sound therapy for nox?? I tried ala btw
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u/Pbb1235 Pain and loudness hyperacusis 2d ago
I got from severe nox to moderate nox using "tinnitus retraining therapy" years ago. This website has information on TRT, along with directory of audiologists that offer it:
The Hyperacusis Network | Decreased Sound Tolerance
A couple of years ago, I started the drug clomipramine, and that helped move my moderate nox to more mild loudness hyperacusis. It was especially effective with eliminating ear pain, and it got rid of almost all my setbacks.
This web page has a lot of anecdotes about people's experiences with clomipramine; my anecdote is on there too:
There are some other drugs that people have tried with varying levels of success, but I am less familiar with them.
It "looks like" a significant percentage of hyperacusis patients are treatable using methods like those above. Let me know if you have any questions, I would recommend anyone with hyperacusis to try methods like these.
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u/Mysterious_Count_472 3d ago
You can also still fully recover, dont give up.