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@Hazel, @Markku huge thank you for all you do for this community with these hopeful interviews. Suggestion: on the heels of the wonderful FX-322 episode, it would be interesting to get Pipeline Therapeutics' CEO Carmine Stengone on the Tinnitus Talk Podcast. Their drug is not specifically...

Tegretol didn’t do much for me. I stopped using it a long time ago. Sorry I haven’t been on here in about 6 months. I tried Misoprostol too - no measurable improvement.

Hi all - just wanted to come back and post an update. I know it was always hard when people disappeared, especially whose stories I was following in those early days. I still have tinnitus. It feels like it has improved a bit (maybe 25-30%). Is it habituation? I don’t know. I manage it all much...

Hi all - I am going to take a break from this board for a while. It's given me a wealth of ideas and information, and I appreciate the support and advice especially in my early days. That said, at ~3.5 months into tinnitus, I feel like I'm starting to get a grip on my emotions, certainly a lot...

Glad my advice helped you think through this. Re: your Philly trip. Resist your urge to tell yourself stories about this! We all do it. Your boss probably knows very little about tinnitus and didn't know that asking you would cause a lot of stress. We all want to stay on the good side of...

Hi Michael - it’s only been a week it could certainly be a temporary tone. Sounds like your tinnitus changes somewhat frequently - no reason to believe it won’t go away or change into something more manageable . For how long have you had tinnitus and do you have measurable hearing loss?

Hi all - for about a month, I've had this little pulsing annoying tone show up in my right ear. I started on Tegretol (no difference yet - although it's a small dosage at 100mg / day). I would also say that over the month, my general tinnitus continuous drone has had quieter moments, and has...

Hmm my math make not so good maybe. Probably some error of mine. 4g aka 4000 mg (right?) and I think this stuff is $8+ per mg, putting the course at $34k. I used a bigger human to get my $40k.

Thanks @JohnAdams. Funny that. Yeah my calc was pretty close, adjusted for fatness of my human in the math model. That puts each dose around $10k. So $40k for the treatment course. Woof.

Spinks- You’re probably going to be fine. Protect your ears, take some anti-inflammatory supplements like Curcumin, NAC, and Glutathione, stay away from excessive noise, take care of yourself (rest diet etc). Mask the sound a bit to give yourself a break, and try to keep your fingers out of your...

The rat-to-human dosing would be based on a pretty standard formula used in medical conversions. @JohnAdams I believe you worked this dosing out based on said calculation from the rat trial. I’d love to take a look at that math problem again and compare my math to yours, you know, JUST FOR...

Working on it.

Hi there - sorry you’re having a rough go of it. Your tinnitus sounds a lot like mine, minus the airplane issues. My idea: How about instead of the radio or podcasts in the car, stream some more effective masking sounds like white noise or train sounds or whatever works best for you. Mask...

Straight people, of course.

Thanks for sharing - I appreciate the detail on the sound component as we are all a bit sensitive to sounds and volumes. Re: your success - you ran only a 4 week protocol as well as I understand it, so perhaps with more time on the device your results could have improved even further, and some...

Question for you on this topic - the Lenire folks are saying that their devices sound like bleeps and tones and sad science music. Did the UM device use a similar approach? I ask because there’s a lot of talk about the placement of electrodes and somatic enablement, but not as much discussion...

I noticed a bit of dry mouth at 40/50mg but not so much at 30mg. I do get a touch of lightheadedness if I get up too fast if I’m above 30mg (which is a pretty low dose). I would totally get off of this pill if not for the sleeping benefits! Some report benefits to their tinnitus as well. There...

I’m on a low (30mg dose) of daily Nortriptyline and I’ve never slept better in my life. Solid 9 hours of glorious, uninterrupted sleep.

I can tell you that if I could get my hands on FX-322 I’d get it shot into my ear today. I have no material concerns that it would harm me given where it is in the approval process. People are literally killing themselves over tinnitus - the risks are worth the potential reward. Everyone’s...

Small update here; I spoke with my Neurologist who suggested Tegretol (Carbamazepine). I’m on a 100mg dose which is pretty low. I have to admit, this right ear warbler seems further away, quieter, and I haven’t been noticing it much at all. Curious to see what it does to my tinnitus overall...

For anyone who donated to Hough (or any other Tinnitus and Hearing research and support orgs, or really any worthwhile cause for that matter) and work for Corporations that have a Donation-matching program, please consider submitting your charitable contribution for matching. I was delighted to...

In an effort to be proactive, I sent some emails to Frequency Therapeutics' leadership to see if they would share any light on the efficacy of FX322 for tinnitus patients with no detectable hearing loss. Let's see if I get a reply. I believe @Hazel has already tried to get these guys on the...

Hey @MrCrybaby - you don't seem like a crybaby at all. Your GP gave you great advice and sounds like an overall wonderful person. You're on the right track. Your life is not over at all, as you have already come to that conclusion. In the three months I've had tinnitus my pain, ear...

I agree. I had my audiology done up to 16 kHz and the taper was apparent after 12 kHz. Sure at 38 years old there should be some taper, but I cannot help but like my high frequency head tinnitus to that spectrum of hearing loss. If this drug helps restore the nerve / ear connection and hair...

@Yas You and me both. I’ve lost so much time over tinnitus. I’m trying to pour myself into work, friends and staying the course on the recovery plan I’ve made. At the end of the day, we may just need time to heal, and there’s not a damn thing I can do to stop the passage of that. You have...

I hear you on the dinner. I live alone far away from my immediate and extended family. In the second week after onset, my mother heard the panic and terror in my voice, and flew out to California the next day. She stayed for seven weeks. She made sure I ate and went to Doctors with me, and...

Perhaps it is discussed somewhere in the thread, but I wonder if this drug will work for people that have tinnitus and healthy audiograms that do not show hearing loss? Sure there could be hidden hearing loss but because this isn’t being tested for tinnitus without apparent HL, I’m not sure what...

“It will get better” makes me crazy. Physically or emotionally? Do you mean I’ll habituate and stop caring about it so much? Or do you mean that the sound in my ears and head will go away? Because unless “it will get better” means I will physically heal back to a quiet head, please don’t say...

Thanks great suggestion. His came and went quickly - very positive story. Hope you’re doing well, and thanks again.

Thanks for the positive reply!

Hey Bar - I’m experiencing the exact same Morse code tinnitus. Hoping to hear that yours faded out - any update?

hey there Suzerman- wanted to see how the Morse Code situation has evolved one year later. I’m experiencing Morse code tinnitus and it’s driving me nuts. Really hoping your subsided to give me some hope. Faint little wobbly Morse code sound at 1000hz in my right ear is really bugging me!!!

Hi all - Yay I’ve had tinnitus for three months tomorrow! In general I’m handling it better and have worked my way back to a normal life. I’m staying busy, tiptoeing around quiet rooms, hanging out and trying to make peace with this ridiculous situation. I’ve seen some improvements...

Hi - please do not lose hope, @Yas Please go get another opinion. And if that next doctor tells you something you don’t want to hear, find another one. Admittedly, I have no idea how the UK’s medical system works, but I know that a different doctor may very well have a different point of view...

Hi @Telis - so sorry about all this for you. You said one thing I do not agree with; you definitely do not deserve this. You’re beating yourself up for trying to have a normal night out. I’m with you on fading. I believe Tinnitus can fade and have heard this experience from plenty of people...

@ChrisBoyMonkey you were straight up gangster brave for the good of everyone to be part of this trial and I am totally gutted that you're experiencing this worsening. A month is not a long time whatsoever, and I believe you can and will improve naturally. You're super positive on here and you...

Absolutely. I will certainly let you know and would be happy to capture information and share. I may have to travel to Ireland that week, but otherwise I’m keen to attend.

21 nights: Tinnitus Mix did not knock out my tinnitus, although over the course of this protocol I would say my hyperacusis was eliminated. Whether that would have happened naturally is unclear but I believe Tinnitus Mix was a positive factor and for that alone it was very worthwhile for me...

It definitely doesn’t. At least that’s what my friend told me. It does the opposite. Said my friend.

Thanks for sharing the details about this event. I live in Palo Alto, so this is just a few miles away. Maybe I’ll attend, and report back to the forum. This is a true meeting of the tinnitus glitterati. Whose autograph to get first?!!!???

Hopefully they'll learn something new that will help advance our understanding, leading to a safe therapy.

Hi - I've been reading more about Lidocaine as a potentially effective tinnitus suppression therapy. It appears that Massachusetts Ear & Eye is trying to advance their understanding of this drug's efficacy for tinnitus with a new clinical trial that has not yet started recruiting. They are...

Talk to your doctor, get a blood test for this and other key vitamin links to Tinnitus, develop a plan with them. Great to know your blood baselines on vitamins before you supplement. I supplement B12 and B complex intravenously and intermuscularly. It has helped me mentally and physically...

Everything you’re saying in this post summarizes my feelings and experience thus far. In the short time I’ve had this miserable tinnitus, I’ve tried a lot of things, and spoken to a lot of doctors and “experts”, who were all sort of useless. Tinnitus Mix, supplements, avoiding loud noise...

I too had no idea how I could sleep while listening to this insane sound playing on headphones. Now I don't know how I'm going to sleep without it. It's crazy, but you'll get so used it is quickly.

@R. David Case Not to give legal or commercial advice, but I really think it is in your best interest, if you have not already, to investigate patents for this sound and method / protocol. Someone is going to catch on and make money from this. You've created a protocol that has enough...

I would say pain, sensitivity especially to higher pitches, and it was always accompanied by ear fullness on a flareup. On a scale of 1-10, I'd give it a five. Pain and fullness wasn't constant, but would really sneak up on me in the car, and especially when on the phone or video calls. The...

@AfroSnowman @Lurius would you be so kind as to reminding us when you submitted your interest to Neuromod? I believe it was summer, 2019, but helpful for folks on this list to understand potentially where they may be in the line. Thank you!

I’m super happy for you, John. I haven’t been on here long, but I’ve read enough of your odyssey to know that you’ve been through a lot to get to this point. It’s inspiring to see someone who woke up every day and grinded through this affliction and all of the treatment trials and tribulations...

One callout on that; every one of these guinea pigs got tinnitus the same way. Us humans have a large variety of root causes for tinnitus, which adds variability into potential efficacy. But I fully agree - this is a really great remark and I’m excited to see this device launch! Feels like the...

10 nights down. My hyperacusis doesn’t exist anymore. I have been readjusting everything back up to civilian-levels of sound. So grateful for that. Seems like my very high frequency head-oriented tinnitus is gone too. Haven’t heard it in a while. My tonal tinnitus is still there, coming and...

@linearb When you were in the Michigan study, were you testing two devices - conceivably a “real” device and a “placebo” device? Having a hard time understanding how they designed this to get a scientifically reputable result? Feels like it would be fairly easy to tell which device is which...

Re: Trobalt & Prof T's potential potassium opener / Trobalt reboot drug - I believe ATEOS used Trobalt before it went off the market in 2017 and if I recall correctly, he felt it was the treatment that got his tinnitus from a 4/10 to a 1/10. Trobalt wasn't a lifelong drug - the max course was...

@Mathew Gould I see your issue - the headphones do make it a challenge to side sleep. I would just add that I am able to position the earpiece part of the headset in between two pillows and it's pretty manageable to sleep on my side. Same here with the residual inhibition from headphones.

You certainly could do that, however Mr. Case is quite adamant that the Koss KTX-PRO1 headphones are an elemental and requisite success factor in his tinnitus protocol. Some folks have said they listen via speaker. I know a lot of people are leery about headphone usage, and are thusly a...

Two things: 1) I feel like you were kind of Mukbang-ing Curcumin for a while per your posts, which could actually be a really useful Mukbang + Tinnitus vlog. Possibly changed the entire trajectory of your tinnitus for the better, as per recent posts. 2) Re: Giant Lobsters + McD: not sure...

Sounds like the opening theme to "Roseanne"

Finished Night 6 - yesterday was a normal, medium-ringing (3/10) AM which built over the course of the day and ended at about a 6 or a 7 /10 by bedtime (standard for me). I slept a solid 8 hours listening to Tinnitus Mix with the Koss headset (which I find easier to sleep in than the Bose)...

Does anyone know if people on the current Lenire waitlist will be offered spots in the soon-to-be-open German Clinic (more relevant for travel patients), or if Germany will have their own, separate queue of patients? Would hope that they'd balance supply of appointments and demand from patients...

Update: Day 2: Only could sleep about 4.5 hours on the second night because I had to wake up at 3:30a and fly to the midwest for a meeting, then turning right around and fly back. So I didn't listen to the Tinintus Mix much that night, and my day was a stressful mess. Woke up to a 3/10...