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I agree here. He wants some evidence/guarantee that XEN1101 will be effective - no one has it, or will until it’s released and people try it. His comments have been antagonistic throughout. I feel like I’m echoing what @Kleiner said already - Retigabine worked for some folks. Kv7.2/7.3...

I’m not an expert, but I am guessing that Gabapentin isn’t as potent of an activator compared to Retigabine. If that were the case, I’m not sure why there is currently a race to remake Retigabine (XEN1101/BHV-7000) if Gabapentin has similar efficacy. I remember reading previous stories of...

This was also my understanding? That the second gen (i.e. Zyrtec, Aerius, etc.) are not a problem, and instead ones like Benadryl are more concerning. I would love to know as I fight allergies daily.

I also recall Dr. Shore saying that 6 dB was roughly 50% of perceived volume (but I could be wrong).

I felt the same... Lots of hopium reading the posts from 2013... similar to now :(

I don’t think anyone will know the answer to that until they’re out, and even then, I doubt folks will know! I’m so desperate lately, I’m trying to hold on to hope.

An interesting read if you haven’t come across it before: XEN1101: A Novel Potassium Channel Modulator for the Potential Treatment of Focal Epilepsy in Adults It seems to imply that XEN1101 will also impact Kv7.4/7.5 as well, albeit not as strong. If Kv7.4 is involved, there is a chance that...

I do remember reading that one of the companies were aware about the potential to help tinnitus. Part of me wonders if they are not doing a trial due to the subjective nature of tinnitus... It is much easier to measure number of seizures than an objective tinnitus rating. The current objective...

I don’t think any of these options will completely eliminate tinnitus. If any of them can eliminate it by even 50%, I’ll take it. I don’t know enough about pharmaceuticals, but if Gabapentin is a potent activator of the same channels, why would they not bother to use it for seizures as...

Thank you! Gives me hope. I am not sure what the mechanical issues are, but I assume those could be rectified already, if people have them?

Thank you for this detailed explanation. Totally makes sense. I hope one day, 3 years from now, with devices like this and pharmaceuticals we will not even have to think of tinnitus (or at least it will be much milder :)) My tinnitus is not from hearing loss, so I’m hopeful this will still work...

Not doubting at all, because I’m eagerly awaiting Dr. Shore’s device as opposed to trying Lenire. However, what would you say the major differences are (besides the double blind study)? Is there a different mechanism of action in the stimulation (i.e. cheek and neck vs. tongue) that makes a...

I’m not educated enough, but been reading a lot on here. Many are saying that Gabapentin has helped reduce their tinnitus. I believe someone also said it works on potassium channels? But that it is short lived. Didn’t Trobalt also impact GABA? Could the impact from Trobalt be from GABA itself...

Did you find any relief? I am in Ontario, too, so I thought I’d ask! Or even a good ENT that you’d recommend.

Me too! I’m trying to be optimistic, however, I’ve seen a lot of optimism here over the last ten years... I pray this is the one.

I’m wondering if it’s even longer, unfortunately... I can’t remember if it was here where someone posted how long it took Neuromod to commercialize Lenire. Wouldn’t surprise me if Dr. Shore’s device was out 2026-2027... Thank you for taking the time to look into this. Makes me think they needed...

I also do wonder. Maybe it’s because there are a variety of epilepsy drugs on the market? Just none that work on that mechanism from what I can gather. I’m hopeful the trials will wrap up next year and they can rush to production in 2025. Happy to try it out, as based on the size of their...

Fingers crossed. I’ll take a reduction at this point, I don’t even care about a cure. If I have to listen to be able to hear it, that’s a win. I feel like, based on previous Trobalt experiences, and all the research out there regarding Kv7.2/7.3 channels, that XEN1101 will likely quiet tinnitus...

Would you say that Trobalt had an impact on most folks? Looking at the thread, it seemed to be mostly positive to some degree at reducing the tone/volume. Of course, not favorable side effects that impacted many - leading to a stop of the medication/no impact. Here’s to hoping those are figured...

Maybe some need to use the device longer? It’s also hard to control some variables - i.e., did they truly follow through with the 30 minutes consistently, or did they miss a few days each week? I’m a little worried, only because I don’t think my tinnitus is somatic (or if it is, it is very...

Keep holding on, it will get better. I had habituated for two years, but I’m in a new, loud spike and feel like I’m starting over again. I hold on to hope because it honestly seems like the two most anticipated treatments are coming in the next couple years (Dr. Shore’s device, XEN1101/BHV-7000...

I also spent a lot of time in that thread. And it was nice to see how it helped many folks. The ones that didn’t (or reduced slightly), I wonder if it would have been different had they stayed on the drug longer.

I guess that’s my question too. I totally understand why they did not report the week 13-18 based on study parameters/bias. However, inquiring minds would want to know why the treatment really didn’t seem too effective for the second group after weeks 13-18. Makes me wonder if they needed a...

I am praying and hopeful this isn’t the case. I hope it will follow in the footsteps of Trobalt and provide even temporary relief for chronic tinnitus folks.

Any thoughts on if XEN1101 will work for those of us who have had tinnitus for a while? I’m at 2.5 years, I’m guessing 4.5 years by the time this medication is out... Wondering if it’s one of those “use it in the acute phase” drugs. I read through Trobalt reviews and it seemed to help regardless...