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I have noxacusis. Pain, burning, everything... Hmmm profound. I don't know if it's profound. I just know it's in the high frequencies. I had ganglion block the other day. No burning throat or ear on left, slight on right, increase in tinnitus. If I could get my tinnitus controlled, that is...

You always give very logical input. If I have high frequency hearing loss and high frequency tinnitus with hyperacusis, what might your opinion be on FX-322 helping with high frequency tinnitus? Looking for some hope.

@grate_biff did you ever get the real block?

@serendipity1996 did you ever try this ?

@xyz did you try the LDN or find something else?

@Sevv have you had set backs you came back from?

Is there a way to get emergency access going the FDA channel vs the compassionate use channel? My hyperacusis is ototoxic induced.

FX-322 with respects to regeneration, who here feels it will regenerate both inside cochlea and outside cochlea, for those who have hyperacusis with pain?

@SoundB0und the model I should get is emLas-520BC.

Dr. Santos Mass Eye and Ear (617) 573-3936 <3 @grate_biff is the doctor.

Do any of you have TTTS symptoms as well? Rhythmic thumping in ear caused by muscle contracting in ear?

@grate_biff I talked to a woman who successfully had this surgery. She said it worked to treat her TTTS. Is that what you have? I want to treat that and treat the pain I think it's causing.

Why can't we cut the muscle? It's minimally invasive I was told. That's the muscle that triggers the nerve. Then also can stop the thumping of over active TTTS?

So there is absolutely no way to treat pain hyperacusis? No nerve to treat?

Is there any way to convince Frequency Therapeutics to test for hyperacusis in their next trial? I know tinnitus is on the rating list to see how it's affected. I would like to know more about hyperacusis too. As many/many of us have both. Can we write them or petition? Just thinking out loud.

Can I find out more about your story?

@Nathan45 I'm interested in your journey and how you did it please.

Did your pain hyperacusis go down with gabapentin?

@alanisnotadj can you describe your pain? I just want to get to tolerable. I'm at suffering.

What do you do for the burning pain? I also have this. Progressed like yours

How are things now? I'm thinking of trying Gabapentin.

What caused your setback?

Is it possible to get an MRI with reactive tinnitus and wear ear protection to not go crazy for the 45 min?

I'm having some insane dizzy spells. This is new. The treatment today was ok I'm starting off very low. Just took them out. Now t is spiking was low all day. Nights around 8 are worst for tinnitus and hyperacusis.

Yes that is the treatment he will start with, then CBT and then we will see in 8 weeks to make adjustments.

I appreciate this thread. I'm in LA and meet with a specialist since 97 on hyperacusis. Today I will start my programming with him. Wish me luck.

She said yes? You qualified for the trial? What does your hearing test look like, may I ask?

Bill I accidentally just took some Vanquish my brother gave me thinking it was Tylenol based, not Aspirin. Then I reacted with pain in both my ears and ringing. Do you think this can be permanent? The pain was epic @Bill Bauer.

It became more noticeable in the last month. If I go to sleep I wake up with a drilling sound. Increase stress and the shakes. What do you do to deal with it?

I have reactive tinnitus in my left ear. I am sitting in mostly silence right now and don't hear anything but if I am exposed to noise then I get high frequency feedback till it calms down. It's debilitating. I have hyperacusis in the right ear as I hear everything and it causes initial pain in...

I tried as well. My hearing loss was not severe enough. On another note does anyone think FX-322 will help for hyperacusis? I've always had hypercausis I think and that was why I would wear my headphones so loud. Ironic right.

I think I'm developing this too.

Has anyone here tried to be a part of the FX-322 clinical trial?

@Bill Bauer I have reactive hyperacusis I think. If I'm in a quiet room every thing is quiet but as soon as I go around sound it gets loud. What would you recommend I do? I'm avoiding everything . My left ear started out this way and now my right is doing it. There is a sensation of pins and...

@Digital Doc if your tinnitus were to stay super low until you were around people then it peak super loud, what would you do? I am avoiding people and I know that's not good.

My new tinnitus is acting in a similar way. I would like to see what are the responses that you get.

@Digital Doc do you still wear ear plugs at night? My tinnitus goes away when I sleep and comes back in morning. Making habituating difficult I think. It peaks when the cars start going.

Do you think you might try any clinical trials? My story just like yours

I am waiting for a reply back from Neuromod. I know COVID-19 has things locked up. Wonder when Neuromod might open up again.

Had an interesting experience yesterday. Went to a hearing aid specialist to see what he might let me try. More of a sales man than compassionate. I asked him to look up FX-322 and his response was "this would put me out of business". He collects about $200 a month for 5 years from his patients...

Does anyone feel that their affected ear gets cold?

I definitely understand. No one told me don't fall asleep with headphones on. No one told me don't go to concerts, you might get a preeminent ringing in your ear. Sure maybe losing hearing was a thing I understood. But hearing aids I was prepared for in my 60s. I'm hoping Frequency...

When I emailed Frequency Therapeutics they were still accepting patients for the current trial. They said it was ongoing till Fall, and for me to then to check on status of the next phase of clinical trials. Is anyone actively trying to be a part of the clinical trial? Are most people...

Aloha: Where do you go to get support?

@Michael Leigh I have tinnitus that calmed down in both ears mostly in left but bearable. I've read almost all your advise. My hyperacusis is what seems most apparent in left ear. We sleep with ac on and I can sleep through the night. As soon as day starts the sound of water pressure in a hose...

My sister lives in Dublin. If I got Lenire would it maybe help the tingling on left side and hose noise? Would I be eligible to try FX-322 I wonder? Is it moving to phase 3 soon?

I have had my tinnitus about as long as you have. Mine is due to high frequency hearing loss. It is decreasing as well. I hope it will continue. I did get a spike last night. I have been wearing hearing aids as soon as I found out they might help my brain not look for the sound it is...

It's back. Was nice to have a day.

@Bill Bauer or anyone else who might have some input. Today I was able to go to work. It was amazing. I have slight tinnitus in the back of my left side today. No spikes no anything. That is two days in a row. Could this be a fluke. It is really strange. As I was preparing to fight...

Searching wine posts as it's what brought on mine. I will never drink again.

@Bill Bauer one thing you said that does give me hope is that my steady decline is a positive sign. You made my heart sing. Not to loud.. Ha ha... I honestly do not know what sets the tinnitus off. Since working at home I had increased coffee intake, reduced what I drank but had a bottle of...

I'm 39, soon to be 40. Female. I recently had my first episode of blasting tinnitus in mid April. It woke me up, at first I thought it was a bad hangover from the wine I had the night before. I at first doused it with diazepam that I had on hand to help me sleep. It kept blasting me. Then a few...

I would like to know more feedback on the stopping drinking. I had stopped my regular drinking to build immune system then a night I decided to have wine, a few glasses , triggered this t. Now 5 weeks in, gone from one ear for a week or very light, still bad in left