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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...
You always give very logical input. If I have high frequency hearing loss and high frequency tinnitus with hyperacusis, what might your opinion...
@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...
@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...
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...
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...
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...
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...
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...
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...
I am so so. I am actually on a plane today to get to California as my family is there and I need support. How about you
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...
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...
@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...
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...
Just telling me time will be my friend
Do you think you might try any clinical trials? My story just like yours
I can't tell I have losses but it's in 8000 area
How are you
At the audiologist looking for hope
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....
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...
When I emailed Frequency Therapeutics they were still accepting patients for the current trial. They said it was ongoing till Fall, and for me...
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...
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...
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...
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...
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'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...
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...