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Hot dang... the gut-brain-ear axis now... The full study is here.

Hey buddy - I had my appointment with Dr. Stefane Maison at Mass Eye and Ear and signed paperwork to join a future trial for CIL001 if it becomes available. Dr. Maison mentioned hidden hearing loss or cochlear synaptopathy as possible causes of my tinnitus and hyperacusis. Their auditory...

One more data point. I had a CT of the head with and without contrast 3 weeks ago. No change in tinnitus volume or perception.

How did you get from A to B, if you don't mind me asking?

I'm really sorry to hear about the reactive tinnitus. Some have likened reactive tinnitus (unstable tinnitus) to migraine-like processes. Reactive tinnitus may respond to migraine prophylaxis protocols. How was the brain hemorrhage diagnosed?

I believe synaptic repair has been limited to animals only so far, and it's possible that the therapeutic was only effective when administered within three days of acoustic trauma (per the interview below). I would take a closer look at it. The discovery of cochlear synaptopathy dates back to...

I will say that the new AirPods Pro 2 is probably one of the best active and passive noise-cancelling mechanisms out there. I have to be cautious about loud noises being played through them. However, playing brown noise through them while in a grocery store with active noise-canceling turned on...

Do you experience any hyperacusis or sound sensitivity?

I'm glad you're feeling much better. What dosage of Anafranil and Quetiapine did you find helped most? Could you attend concerts with earplugs? Did you have any hyperacusis in the early years? If so, how is the hyperacusis today?

I don't think the trial has been firmed up just yet, but I'll be keeping an eye on the NIH repository and will update this thread as soon as I learn more. Hopefully, there will be multiple recruitment sites or facilities. It might also involve just a single intratympanic shot, which means there...

This sounds like vestibular/ocular migraine. I have had the same issue since an acoustic trauma in February 2023, as well as floaters and light sensitivity in my vision. Nortriptyline and Gabapentin are helping, as well as magnesium, riboflavin, CoQ10, and vitamin D.

@marqualler meant 5,000 IU. Dr. Djalilian's protocol at one point called for 10,000 IU Vitamin D, but the recommendation has since been revised to 5,000 IU per my Neuromed clinician.

It went well, thanks for asking. His extended audiogram might help explain why I have hyperacusis in my right ear only. There was a notable difference in hearing between my left and right ears past the 8 kHz mark. Dr. Maison's theory is that cochlear synaptopathy and "hidden hearing loss" are...

If we registered for tomorrow’s Q&A, were we supposed to get an email with a link to tune in?

I'm so sorry this happened to you. My acoustic trauma in a nightclub was in early 2023. I have been robbed of a life since that evening in a foreign country with strangers. What about trying something like Clomipramine potentially for hyperacusis? It's a tricyclic antidepressant that...

I'm sorry to hear that. I know the feeling all too well at 32. What was your acoustic trauma? Have you been evaluated by an ENT or audiologist in your country?

Ah, okay—I'll definitely keep that in mind! For such a live music city, I can't be the only one dealing with this issue. My friends are always going to shows, and I still can't believe I'm the one who got injured at 30. It's going to be a long road, whether it's recovery, acceptance, or...

Let's stay close, man. I see Dr. Maison on 8/26 and am flying to Boston from Austin to see him and get into the Mass Eye and Ear system in the event they're the ones that cure hearing loss, tinnitus, or hyperacusis. I don't know if I'm as pessimistic about hearing loss and big pharma. Just...

I used to live in Portland! Sorry to see Wellbutrin caused your issues. After an initial acoustic trauma caused my hyperacusis and tinnitus in the right ear, a drug called Auvelity (with wellbutrin in it) dialed my tinnitus up and exacerbated my hyperacusis terribly. I haven't been the same...

Have you found any helpful providers in Austin for the condition? I've recently returned to ATX, and Illuminear Audiology was the only provider I've seen, but I haven't been in a while.

Very interesting. Can you share that correspondence with @Hazel and @Markku?

My acoustic trauma was in Sweden, lol. It was definitely the lowest point of my six months there. But living in Södermalm was still cool. The pressure and fullness come and go. I take Magnesium and CoQ10 to manage my hyperacusis and tinnitus, as well as Nortriptyline 60 mg and occasionally...

Is your hyperacusis in one ear or both? How did it start?

Where are you at on the Dr. Djalilian protocol? What's the principal issue you're trying to address now? Tinnitus or hyperacusis? Bilateral or unilateral? I'll ask his nurse practitioner about it (or I may email him directly). The real issue here is the hyperacusis. It just feels like something...

In February 2023, after a night out at a club, I developed unilateral hyperacusis in my right ear. Over time, my tinnitus would fade, but the hyperacusis has persisted. I experience mild burning and occasional stabbing sensations if I am exposed to excessive noise. Otherwise, it is mostly...

Are you still on a regiment of Mirtazapine and Gabapentin that's helping? What dosages? I'm on Nortriptyline and Gabapentin now per Dr. Hamid Djalilian's protocol. My hyperacusis is improving a bit, but my tinnitus is about the same. I took Gabapentin instead of Topiramate or Lamictal, which...

Fantastic, please do! The frequency with which tinnitus and hyperacusis occur together is really interesting. I have both, and if I could have one disappear, I would choose hyperacusis. It's been debilitating. Please stay connected to the folks at Mass Eye and Ear like Dr. Maison and Dan Polley...

What was the trajectory of your hyperacusis? It has presumably improved? Over what duration?

Below are the supplements recommended and dosages. Gabapentin, I think they mentioned, is not really going above 900 mg for tinnitus, though Topiramate is their first recommendation. They mentioned Gabapentin, Lyrica, or Lamictal being an option if Topiramate (first-line recommendation) isn't...

Hey man - how is your tinnitus with the Djalilian protocol?

I don't see very much on Aripiprazole in circles for pain hyperacusis. Clomipramine is what you read about most of the time. Could Aripiprazole possibly work for pain and loudness hyperacusis?

Everyone else? LOL, you're on Jupiter for sure. Who else will there be but the highly motivated bunch that is us to test this thing? Get in line, try it out, and speak the truth if it works or not. I'm not sure what you're even cautioning for. I still have hyperacusis in one ear, which is...

Ah, me too, man. I'm a week in. Let's share progress notes. Do you have any hyperacusis or purely tinnitus? Do you know the root cause? I went to a nightclub in February '23 and have had unilateral hyperacusis and brain tinnitus since. I hope the Nortriptyline benefits me as I ramp up.

I saw an interview once with Ross O'Neill where he said tinnitus patients with hyperacusis had better outcomes than non-hyperacusis patients with tinnitus when using Lenire. He wasn't super clear what those better outcomes were - an improvement in hyperacusis, tinnitus, or both. Needless to say...

Can somebody record the entire thing?

Thanks so much @Hazel. Were there any interesting/compelling presentations on hyperacusis?

Is Taurine helping with your tinnitus?

They’re 100% related to me. Hyperacusis, tinnitus, floaters, light sensitivity, eye pain, and blue field entoptic phenomenon all emerged simultaneously.

Thanks for sharing this, @Nick47. I had to drop from the Lidocaine study at Mass Eye and Ear due to the extensive MRI use, but this one seems much more plausible. If it's not longitudinal and I could fly in and fly out, that would be great. It's just comparing "pre-injection baseline to 4-6...

I'm here for you. I damaged my hearing in a nightclub, and my life hasn't been the same since. Give yourself a little grace. You have incredible awareness, and you're learning so much about your condition and yourself. I appreciate you sharing your experience with me. You are not alone. I feel...

Clomipramine is purported to help hyperacusis and is also a very 'dirty drug.'

You are wise to know your body. I had to turn to Mirtazapine for relief when my hyperacusis/tinnitus came into my life at age 30, almost a year and a half ago. There's some reason to believe tinnitus, hyperacusis, and MEM/TTTS are the same hyperactive neurology that produces panic and anxiety in...

Ah okay! I'm taking it some nights. My sleep doctor said 50 mg; giving it two weeks is an adequate trial. Have you ever had a sleep study done? Most these days are at home with a little ring on your finger, or you can get a more accurate in-lab one done. On nights when I get more deep sleep...

Thanks for the well-thought-out post. You are not alone. If you're from Austin, TX (a guess from your username), I was just across town from you, struggling with this condition until I moved last year. I'm 30 years old, a former musician and concertgoer. It was a DJ in a nightclub that gifted me...

What's the insomnia drug?

Which was worse, Sertraline or Lexapro? When you say negative effect, do you mean an increase in tinnitus or something else? It was interesting to see a study on Sertraline vs Melatonin on tinnitus.

SGB = Stellate ganglion block? Do you have a preferred GABA agonist? I'm also trying to figure out what the deal is with my unilateral hyperacusis and tinnitus. Should I be approaching treatment or nerve blocks any differently?

Have you tried Honeywell's Howard Leight Laser Lite® Earplugs? I find them to be good along with Macks.

My psychiatrist had no issues prescribing Clomipramine on the basis of my anxiety and depression attributed to the hyperacusis and my prior history of health anxiety. Unfortunately, I had to discontinue it after a few days due to insomnia and increased anxiety. That is par for the course for...

The ATA sent an email today on tinnitus research grants and I wish they would just divert some of that funding to this research. I wish this was enough of a theory for the neurology and pharmacology fields to repurpose an existing drug to treat hyperacusis. Or should I just take Clonazepam for...

I almost did a clinical trial in Boston for tinnitus via intravenous Lidocaine but they were doing so many fMRIs before and after the infusion that it was a no go with my hyperacusis. But that will be an interesting one to see. Mayo Clinic is supposed to be reputable. Do you have any knowledge...

Your life isn't ruined. I'd even venture to guess that you would benefit from 7.5 mg of Mirtazapine and a good night's sleep. I've taken it too. Did it give me tinnitus? Maybe, who the fuck knows, everything is multi-factorial. When I take a low dose, I drift easily to sleep and wake up, giving...

At a point, you have nothing to lose. I took a Gabapentin last night because "fuck it," I deserved a break. The same goes for those taking Clonazepam or Ativan to give themselves the occasional respite. Why torture yourself on a night when you're not sleeping? Everything else falls apart for me...

Man, you need to be the one we go to for words of wisdom! 34 years is longer than I've been alive for. I'm one year into this mess at age 31 and am feeling like I will not really get to live life to the fullest because of the condition. My only hope is maybe a cure or medication in the next...

Neuro-otologists have little interest in tinnitus and I've seen two now at Johns Hopkins. Eventually, audiology, neurology, and ENTs will have to get in a room and sort this shit out.

What else did you do in the last year, though? Did you stay at home in silence, eat soft, non-crunchy foods, listen to this file only, rinse and repeat for 365 days, and so on? I'm not saying this guy's audio file is worth squat, but there are too many causative factors at play here for you to...