Surgery to Make You Deaf for Relief from Hyperacusis — Any Doctor Willing to Do It?

I have extremely bad hyperacusis. I can't even walk comfortably because the sound of my footsteps hurts. I also can't talk. I'm planning to commit suicide honestly. I've tried so many treatments and none have worked. I would be so much happier and at least still alive if I could go deaf though.

Does anyone know how to find a doctor willing to make me deaf?

 

Well you’ve lasted 6 years. You could hold on for another few, there’s a few potassium channel drugs coming out that have already majorly helped people with hyperacusis. I think a couple more years in hell in exchange for a lifetime of H-free hearing is worth it. Or you could email these companies, see if they’ll get you in a trial.

there’s also the stellate ganglion block.

 

Where did you learn about the potassium channel drugs and clinical trials? My H recently got much worse and it is probably going to get even worse unfortunately because I get setbacks easier when my H is more sensitive. I'm not sure if I can hold on but I will try.

 

The latest podcast gives you plenty of information.

 

I'm so sorry for you, but I don't think becoming deaf, will help your hyperacusis.

There is a surgery that maybe could help, but I don't know much about it myself. Hopefully somebody else can tell you about it.

 

Why do you think it won't help? What is the name of the surgery?

 

Have many people with tinnitus tried the trobalt to see if it would help their T before they discontinued it?

 

I think it came to two dozen or so. You can look through this thread here to see exactly how many people tried it, and what their experiences were:

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/

 

I've read some experiences from people in this thread: https://www.tinnitustalk.com/threads/prof-thanos-tzounopoulos-receives-2-million-grant.32693/

 

How long ago did it get that bad?

 

About a week ago. From experience with my hyperacusis, I know I don't recover from setbacks like other people with hyperacusis do. It just gets worse.

 

This is very surprising, as normally hyperacusis gets better more often and faster than tinnitus...

Is it the case that back when you haven't recovered, you had been protecting your ears from all of the noises that felt uncomfortable, and it still never got better?

 

@Oceans63
Surgery for hyperacusis can include cutting the tympanic muscle. Another procedure is round and oval window reinforcement.

 

Have you considered Keppra? Danny Boy (deceased) and Viking both reported resolution of their hyperacusis with this drug.

 

You can still get nasty tinnitus as a result of that surgery.

 

That's also what I thought. When my tinnitus is from hearing loss (and my normal audiogram didn't show any) I really don't want to know what that sounds like when I am deaf.

Probably that's also the first thing I would try. Some drugs. But why have only two tested this Keppra out? Has it similar side effects as Trobalt? I am just wondering because there are quite a few on here with bothering pain hyperacusis, I think.

 

It affects totally different channels than Trobalt, there are a few who have tried it. There are own threads about it. I have bought a truckload of it as I did with Trobalt. But I never dared to take any of them. On too many drugs as it is. And I tend to experience blurred eyesight and dizziness on anti-epileptics. Tried a few.

 

There are several members on here who have hyperacusis that gets worse and worse even though they are careful. It happens.

 

Hyperacusis can change. In my case it has gone from very severe hyperacusis (all and every sound was perceived extremely amplified) to some hearing loss, tinnitus and some hyperacusis, above a certain decibel threshold

 

Honestly, I’d probably check the dark web for stuff like that. No legit doctor would do it but I bet there’s some corrupt, morally bankrupt (society’s words) doctor who would do it for you.

Not that I’m recommending it, just saying that’s probably the only place you’ll find it. That said, I’d try any treatment possible first.

 

You would have to do your homework on this drug. I haven't looked into it myself. Just thought I would mention it in case it helps.

 

Really sorry for what you're going through, please consider other options, i'm sure going deaf is not a solution. Get in touch with Dr. Silverstein Institute, there's a procedure going on there that helped some people. I was like this a couple of years ago. Still have hyperacusis and will probably have forever but it got a lot better.

 

I just came about this site

https://dizziness-and-balance.com/disorders/hearing/hyperacusis.htm

There is also a surgery section and there seems to exist something to make you deaf in a "potentially reversible" way:

There has been a single report of treatment of hyperacusis via purposeful reduction of hearing via surgery to disrupt the ossicular chain (so-called "disarticulation"). This method of treatment would necessarily sacrifice hearing, but is potentially reversible. We think that it would be best to avoid this surgery unless symptoms are extremely severe, as in essence it involves causing deafness.

 

Wow, thank you! I will look into it more.

 

Honestly the thought has crossed my mind and assuming they were willing (I have absolutely no concrete research to back this up this is just my own logic from my background in anatomy and biology speaking) I don't think it would be possible surgery wise. With removing eardrums, that's all find and dandy, but a lot of the auditory stimulation we receive isn't picked up through our eardrum but is actually coming in from our temporal bones vibrating. This is why car rides can be such living hell for those of us with severe hyperacusis, our whole body is vibrating and stimulating the cochlea, not just the eardrum. This is also how cochlear implants work if you've seen those, the hearing aids with the magnets that go up on the sides of people's heads; they function by vibrating the temporal bone instead of the drum.
At my lowest point I considered asking my doctor if he could just drill a hole through my skull and just pump botox into my cochlea and paralyze it and give me a break for 3 months until the toxins wore off, but then I remembered that you know - I ain't no doctor - but I'm pretty sure the inner ear is embedded in the thickest part of the skull and that would be quite the hole.

I am very sorry. I'm not going to give you that "I know exactly how you feel" bull crap, I hate when people say it to me. No one knows what it's like to lose your life, your identity, to lose who you are. I should know, I lost me for so long I was terrified I would never find myself again. There for a while all I you would see when you looked at me was a puffy eyed shadow of the girl I used to be, a pathetic excused for a person.
But to show you that there is hope, hear me out. Listen to my story.
My life was miserable. That's the only way to describe it honey cakes. I would stay up till 2 or 3 AM I didn't want to sleep, but I don't know if not sleeping was worse. Then in the morning I'd wake up too early but would have a pit in my stomach so heavy I felt I was going to sink right through the ground and fall forever.
And then I would cope. All day long. Extreme, awful, intense pain. Migraines, tinnitus, hyperacusis, depression, and now to frost the cake of this joke we have the audacity to call my life I'm developing visual snow. Life is misery.

But

I held on, and I found myself again. I'd say the moment it all changed for me was when I sat down in front of a google doc entitled "My Identity, Who is Tavia?" and I typed pages of things that all these diseases could never take from me no matter how hard they tried.
Who am I? I'm the kind of girl that mixes sun dresses with leather jackets and too tall high heels.
I'm the only person in my entire class at culinary school with enough spine to stick my bare hand in a pot of 300 degree F boiling sugar to test if it was at a hard crack yet.
And I'm the nicest person you'll meet but the kind of girl that doesn't remember your name the first 3 months we're friends.
This went on for pages and pages. When I finished typing it up and read through it I cried and I cried. I couldn't believe it. For so long I had believed that all I was was pain. Pain and misery. Hyperacusis is misery, what we're going through is misery, but not us. We are not misery. We are ourselves. We just have to find out who we are again under all that pain. Yes there are parts of my identity that I lost, Huge parts that I may never get back! Like the piles of instruments sitting under my bed, the fact I could never see my favorite band live, or even listen to them on the radio, or the crushing pain that you know guys just aren't that into a girl that's really pretty but looks like a freak with huge earmuffs and looks like she's gonna cry all the time and jumps every time there's a loud sound. But you know, these last few weeks, I've found this peace that I haven't felt in months and it's because I found myself. Underneath all the pain, prescription medications, doctors appointments, therapy sessions, and just bull crap, I found me.
Sit down and write out who you are. If pain is your only identity, like it was mine for so long, you're going to drown, and there's no escaping that. No matter how bad it gets, no matter how much hyperacusis takes from you, comes into your house in the night like a thief and steals your life away, you can't let it steal your identity. You can't let it steal who you are. You can't let it win
Send me a message if you need anything, I check my inbox daily, I have other correspondences that I'm keeping up on so I would love to talk to you. Oceans, I've been there. Not exactly where you've been, but I've been through hell and I've definitely seen the devil. He hasn't gone away, I've just learned to live stronger. I hope the same for you.