Recent content by andrewdaniels

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.