Prof. Thanos Tzounopoulos Receives $2 Million Grant

Are they also working on a redesigned Trobalt? That is does it also work on the ion channels to calm our hyper active neurons down? Then probably the trial you are referring to is

https://clinicaltrials.gov/ct2/show/NCT03796962

Completion is then probably delayed because of COVID-19 from July 2020 to beginning 2021.

 

Yes they are. I don't have the link on me but in one of their presentation a while back they said they'd managed to increase selectivity, enhance potency and resolve the unfortunate pigmentation issues that hampered the old Retigabine.

 

200-300mg as a single dose would do the trick.

 

From what I have read it was not only the pigmentation issues which were quite troublesome. But this would be great if we had some Trobalt with less side effects. So this is already a trial with 300 participants. Seems to be already quite far in the making.

 

Hi @valeri.

Did you start using Trobalt after you had a few years of tinnitus? I'm wondering if it works more for acute tinnitus or chronic tinnitus.

 

I took Trobalt for over a year and it really seemed to help me. I guess I was lucky that the side effects were only temporary. It temporarily made my tinnitus almost inaudible, got rid of hyperacusis, and generally improved my mood. It would be interesting if they were able to develop a potassium channel opener with fewer side effects.

 

Did you have loudness or pain hyperacusis? I can't wait for the reformulation to hit the market.

 

Mostly loudness, pain past a certain threshold that is much higher than the loudness, but I rarely let it get to that point with protection.

 

Did Trobalt resolve your hyperacusis permanently?

 

This is really interesting that it seems to help both loudness and pain hyperacusis since according to @valeri it also helped with burning symptoms.

 

Yes I had had tinnitus for about 4 years when I took Trobalt.

 

I swear to you it was as if someone flicked the switch and my ears and head felt clarity I haven’t had in years.
Honestly I forgot what it’s like to feel “normal”.
I really really have high hopes for this drug, I just wish it was happening quicker.

There was some talk here about use of Keppra (epilepsy medication) for hyperacusis. I never tried it.

 

That's so good! Xenon's reformulation is about to start phase 2b, I think that's the one that's furthest along.

 

I read a more complete transcript of the Xenon conference call and the CEO said that they’ll be sharing their plans for using XEN1101 for conditions besides epilepsy in the coming months.

Really hope this fixes my sensitivity. As it is I doubt I will be able to return to my job in July.

 

I took 50mg and it did nothing for my tinnitus. Did you feel anything at a low dose, or did you start off with 200mg?

Thanks Val.

 

Good find - could you link the transcript if possible?

 

https://www.fool.com/earnings/call-...maceuticals-inc-xene-q1-2020-earnings-ca.aspx

“Given its unique mechanism of action, we also continue to explore potential indications for a Phase 2 proof of concept trial with XEN1101 outside of epilepsy, and we look forward to going into more detail as these plans develop over the coming months.”

Anyone know what other conditions besides tinnitus he could be referring to? I think ALS was another potential target... really scared to read in two months “we’re starting a new phase 2 trial for... erectile dysfunction!” lol

 

Hopefully that solves all of our issues if FX-322 doesn’t work for pain hyperacusis. I still believe pain hyperacusis is caused by the damage of the outer hair cells and once those are restored it should stop sending pain signals to the type 2 nerve fibres.

 

Unfortunately no. It was gone while I was on it, but it's still there after I got off it. I wouldn't say it reduced my tinnitus permanently either, but when I got off it my tinnitus didn't seem to bother me as much as it did before.

 

I'm trying to figure out why Trobalt would temporarily treat tinnitus but permanently increase visual snow for some people.

 

I know this might sound a little creepy but could you describe what it was like to experience that sort of relief? It says you've only had tinnitus since 2016 and I don't know how severe it is but I have to imagine that relief like that would be akin to color blind people suddenly seeing color with those special glasses.

TRY NOT TO CRY CHALLENGE #1, EnChroma glasses

 

I have tones of expired Trobalt. Sometime I just want to wash all the pills down. Unfortunately after 2 pills of 100mg I started getting intense after images and my VS was worse so I couldn't keep up with it. Was sad about it because this medicine could have helped.

 

The smallest dose I ever had was 100mg which didn’t do anything.
300g dose gave me best relief.
That’s the maximum I would take as one off dose.

As I said before, availability and price was a big issue for me, I never had enough to give it a meaningful try.

But what I did use definitely helped, not so much for my low frequency drone, but for hissing and burning it was God sent.

 

Thanks Val, so it seems I still have a shot because I could never know if Trobalt would help me - my first try dose was sub therapeutic it seems (50mg was too low to have any effect on severe tinnitus).

Thanks again for replying.

 

Isn't it because it causes changes to the retina?

 

Visual Snow is caused by a problem in the brain, not the eye.

 

That is a separate problem of Trobalt. As @aot pointed out, VS is a brain disorder affecting people with normal retinas.

 

The FDA stated that Trobalt changes the pigment of the retina, which can lead to serious eye problems and vision loss. I'm guessing that those changes can start visual snow in the brain, much like tinnitus. I would post the link but the FDA took it down after Trobalt was discontinued.

 

Are you refering to just Visual Snow, or Visual Snow Syndrome, which has Visual Snow as a symptom?

Visual Snow Syndrome has to do with the part of the brain that processes vision. It doesn't actually have anything to do with the eye itself. I haven't heard anything about problems with the actual eye causing it. That being said, I'm far from an expert so I could be wrong.