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I consider myself a success story. I'm mostly pain free after about 9 months. I did nothing at all, no medication, no therapy, just rested my ears the first few weeks when it got really bad. I was a 6.5-7/10 in the pain scale for 4-5 months until it got better. I did lose some hearing in the...

In September/Octorber 2020 I got an ear infection on my right side which had as immediate symptoms distorted/muffled sounds and sound sensitivity, followed by HOT ears (sometimes both for some reason), burning/acid burning in the ear and soreness. These symptoms escalated to a solid 6-7/10...

Hey, I have a question. You say your audiogram is normal yet you're hard of hearing? I have a problem that's similar. I am actually hard of hearing and have been my whole life, but lately feel like I hear worse ever since an ear infection, but the hearing tests don't show any objective loss in...

Is this all like a coping mechanism for you guys? Like if it's coming, it's gonna take a long time to do so still. Being hard of hearing on top of having hyperacusis I was hyped as fuck on this but now I'm just done.

I first started noticing it well before getting hyperacusis. Little sounds would sometimes sound a little auto tuned or distorted. It became gradually worse and now fluctuates after getting ear infection back in October 2020 which resulted in my hyperacusis manifesting itself.

Dilemma. I have hyperacusis but really bad hearing so I can ease it a little when my hearing aids are off. I'd still rather have your hearing though.

Very happy for you that you got one good day at least, but I am confused. Are you more bothered by your tinnitus than your hyperacusis?

What is a good day for you?

That's what I'm saying. But to be fair, that man was on every drug under the sun.

Let us know how it goes <3

You try it then man.

Yeah I had that acid thing too.

I'm very sorry about that. I also have it pretty slightly when listening to music, sometimes the voices will treble way too hard or sound robotic. I've just gotten used to that. But you said it eliminated your hyperacusis pain though?

You're the second one since Danny Boy then to have eliminated hyperacusis with Keppra? Or have there been more?

Keppra is a little bit on the no go list for me since the dude that recommended it first, @Danny Boy, died.

I see you. I hope this all goes away. I'm similar to your time frame, mine started October ish, mid October I'd say.

So that's good then, I guess?

You tried it yet?

Why are you surprised, and what are the caveats? Looking to get on it as of tomorrow.

Anyone know if people that were born with hearing loss and then additionally lost some hearing over the years will benefit from FX-322 or nah?

I feel like I'm sort of a Success Story. I had pain from my own voice which made me cry and now for the second time in 3 weeks I've had a week with basically no pain. I did not take any meds either. But I'm pretty sure the infection that caused all of this made me lose a bit of hearing.

I turn 25 in July, in the middle of my 20s, prime lol, I'm not about to not have sex anymore.

C'mon man, what? I'd rather kill myself at this point honestly.

The week is almost over and I have been about 80% symptom free, even went to postal office on my skateboard and all. Talking still tires me out though.

I hope someone is reporting this to Hyperacusis Research's official website.

Fuck yeah man, that gets me going.

Please keep the community updated.

How did your hyperacusis come by? How about your acoustic trauma? I'm not relieved by a long shot yet, I'm extremely cautious.

I really do feel like ear infections heal better or faster than acoustic traumas, I don't know though... At least when you heal you'll have actual functioning ear, I can't hear shit.

Before anyone claims I didn't have hyperacusis in the first place, I got it from an ear infection along with tinnitus at first. At my worst I couldn't stand my own voice or the cats playing on the wooden floor (something I can't even hear normally since I'm severely hard of hearing), and your...

My cochlear and vestibular thingy are both slightly malformed, I don't know anything about my hair cells.

Not cool news for people with born hearing loss to be honest.

There are still people that rely on hearing aids, people like me that were actually BORN profoundly hard of hearing and not because they decided to stand next to a concert speaker... Since FX-322 seems to be tackling acquired loss only, for me the ''cure'' is still a long way to go.

Did a pair of headphones mug you on the street or why is your answer to literally everything headphones?

I haven't either, for me it's more like a booming in my inner ear and also burning/acidy feeling.

Yeah most of the cochlear implant patients lose their remaining hearing. Nah, I find the newest CIs to be pretty cool looking and they would free up my ears finally, plus they are just wayyy more powerful than hearing aids.

Cochlear implants seem to help MOST recipients with tinnitus and hyperacusis from what I've garnered though. I asked around because I myself am pretty hard of hearing but not enough to be a candidate unfortunately.

Can CI patients get FX-322 too?

You can habituate to tinnitus, but it's impossible to habituate to severe hyperacusis.

You look about 22 though, don't stress about having kids unless that's a dream of yours in which case I'm sorry of course.

He should be held accountable for possibly worsening some cases of hyperacusis here with his religious belief in TRT.

Michael is a fraud honestly, but what did he do?

You have to take one for the team champ.

They do not do anything for your pain though, do they? I'm about THIS close to getting on Xanax.

That is indeed ill advised I must say.

So my infection would have been the tipping point so to say? Because I did, whenever I used headphones, usually blast it since I'm profoundly hard of hearing lol.

Why is everyone convinced they have it from noise exposure?

Who/what can?

So what did you do?

Do you think this could apply to hearing aids as well? Like turning up the treble on them?

Another thing, I have pretty recent CT and MRI results. Could they see cochlear inflammation? Because they said everything was fine according to the images.

How has this not had anymore traction? With Danny Boy's (RIP) post about Keppra, people were all over it.

Literally same.

I always felt like infection related onsets are more likely to recover, no? Or is that not the case?

Hmm yeah might be, I'm just so skeptical because my symptoms came like DIRECTLY after the ear infection. And I don't even listen to that much music, my friends all listened to upwards of 40,000 minutes this year on Spotify and I did about 19,000 minutes. But if there are that many treatments...

What is SPI-1005 aiming to do? There's so many treatments coming I have lost track.

I respond to you as I see you got it from an ear infection as well. What did you do to treat it? My hyperacusis suddenly got a little better from one day to another but I still feel my ear tightening up when I talk.

I feel like a LOT more people would experience hyperacusis if headphones were that dangerous. It's such a seldom condition that most ENTs do not even know about it.

How does one apply?

Yeah my hyperacusis and tinnitus came immediately after the infection. Yes I listened to music on headphones full blast before it all, but with hearing aids that were set at a lower volume and never had any struggles with that. Ear infection it is.