Retigabine (Trobalt, Potiga) — General Discussion

[Emmi]

Flupirtine is less 'safe' than trobalt.

@Alue

Why would you think so?

 

[ReyKalinic]

For a large subset of T sufferers, this drug is a VALID treatment.
I would encourage anyone having tried RTG to try Flupirtine. Just once, for the hell of it. Those drugs have a similar mechanism of action. You get the same effect, from the first pill.
Not placebo, not green day, not beyonce: EFFECT

I find it extremely disappointing that while these ACTUAL treatments are currently available for other irrelevant conditions (RTG for epilepsy, Flupirtine is a painkiller for fuck's sake), the tinnitus community remains an inconvenient mass of persons unworthy of any attention by the medical community (from the lowest nurse at the ENT office to the CEO of the biggest pharma corporation) and dismissed the moment they set foot in a medical establishment...

I'm reading threads on this site that a cure is years, maybe decades away. And it is.
But right here, in the treatments forum, two molecules that have been available for decades are TREATING the condition.
The actual reason why this condition is NOT treated right now is simply beyond my rational thinking or my imagination.

I repeat so there is no misunderstanding: A LARGE SUBSET (that's bold, capital and underline) of T sufferers could have (at least) an aspirin sort of drug NOW.

Rant over.

Ok but where are the scientific evidence? Can i kindly ask you to show a link in literature or clinical trial? You are talking about a forum not pubmed. I'd like to have scientific studies before sentence "it's a cure or not". If this was a cure GSK won the Nobel!

I got the same results with trileptal and not thanks to a "forum" over internet but Doctors!

 

[Alue]

@Alue

Why would you think so?

High incidence of liver failure.

 

[undecided]

Ok but where are the scientific evidence? Can i kindly ask you to show a link in literature or clinical trial? You are talking about a forum not pubmed. I'd like to have scientific studies before sentence "it's a cure or not". If this was a cure GSK won the Nobel!

I got the same results with trileptal and not thanks to a "forum" over internet but Doctors!

I actually couldn't give a shit about scientific evidence.
I've tried it, it's good FOR ME, potassium channel modulators are the way to go, I'm bored to death with being scientific.
This is a 260 pages thread, there are papers on RTG, Flupirtine and Maxipost acting on what is of interest to us, go do a forum search or re-read the thread.

edit: If you are interested in scientific evidence, please don't take the drug. And I never mentioned that it is a cure in my previous post, I mentioned treatment. A treatment is the basis of a long term cure.

 

[ReyKalinic]

@undecided

on this way you are talink about only a few of suffers? And what about all the others? Who develop visual snow... Urine retention, slurried speech and many other potential life threatening problem? We should be careful before talk about a "cure". For example, on me, trobalt did nothing. I understand your point of view about wasting time of scientific community but this don't mean that we can talk about a cure. We should ponder our sentences. Only this. I agree and understand your frustration, but if you are here, this for me mean that you are not cured. If you was cured, you was still celebrating till the moon (with me of course )

p.s. To be honest those are 260 pages of debate and side effects, help request, homemade dosages....

 

[undecided]

@undecided
on this wa....

I repeat so there is no misunderstanding: A LARGE SUBSET (that's bold, capital and underline) of T sufferers could have (at least) an aspirin sort of drug NOW.

What is it with large underlined bold letters? Do they get invisible?
I wrote "subset". That might not include you or the next person.

 

[Ian Mac]

Where to buy?

 

[SoulStation]

Benzos are a readily available type of "aspirin" approach. Who really cares. They're probably more reliable when only used sparingly.

 

[Pleasure_Paulie]

Benzos are a readily available type of "aspirin" approach. Who really cares. They're probably more reliable when only used sparingly.

Benzos are the preferred choice with less side effects than Trobalt, yes Trobalt potentially at high dosages could bring about more silence though. Both are shit though.

 

[papu]

Were the floaters and decreased visual acuity permanent after discontinuation, or only while on the drug? It seems most people that ran into trouble either tapered on/off very quickly or took it to very high dosages eg 400 TID.

it was worst while taking the drug once off it they become less and less evident with time to almost none existant (have to look for them). Visual acuity is back to what it was before trobalt (i suspended it over a month ago). I never had visual snow just floaters.

 

[PatrickG]

I took lowest dosage of Trobalt (50mg 3/day) for only 4 days. I got pretty severe visual snow, double vision, glare and floaters from nowhere, all at once. This was 8 months ago and it hasn't got any better. My vision is probably permanentaly damaged and it's affecting my life big-time in a very bad way.

 

[Emmi]

@PatrickG
I am very sorry to hear that, but thank you that you shared it. I was starting to think about trying Trobalt once as well, just to know if there is something that can eliminate it. But now I won't do that. I really hope that it will get better for you!

 

[Pleasure_Paulie]

It's somewhat sad that Trobalt is coming to an end. I wonder if the drug will now be available as a generic somewhere in the world still

 

[Kazue]

Trobalt will be coming back to the market soon after being revamped. Since it was causing eye problems and people to turn blue, they have to make it not have a lot of side effects. Once it's shown to be safe, it'll be back on market.

 

[PatrickG]

It's somewhat sad that Trobalt is coming to an end. I wonder if the drug will now be available as a generic somewhere in the world still

And permanently fuck up your vision like it did for me and two others here. Don't touch that poison.

 

[Andrea White]

I read that Retigabine (trobalt?) is being refined to get rid of those horrible side effects - the newest version of it (SFOO34 I think) as SciFluor? the manufacturer has applied for a patent, which sounds a little bit promising. Pobably will have to go through clinical trials all over again. Does anyone know any more info?

 

[ReyKalinic]

the trial about the safety was expected during this year but i don't find anything on clinicaltrials.gov and officiale website. Always the same story. backbreaking

 

[Pleasure_Paulie]

I read that Retigabine (trobalt?) is being refined to get rid of those horrible side effects - the newest version of it (SFOO34 I think) as SciFluor? the manufacturer has applied for a patent, which sounds a little bit promising. Pobably will have to go through clinical trials all over again. Does anyone know any more info?

That is correct, I would like to know an update as well. The other spin off is RL-81.

 

[Andrea White]

What is RL 81 - is it significant for Tinnitus?

 

[Pleasure_Paulie]

What is RL 81 - is it significant for Tinnitus?

RL-81 and SF0034 are both theoretical compounds based around Kv7 channel openers (Similar to Trobalt) but with an improved side effect profile. SF0034 should have started phase 1 trials this year, but it appears to have stalled at this point for unknown reasons.

 

[Breezer]

people to turn blue,

People were turning blue?

 

[PatrickG]

People were turning blue?

You can turn blue after a couple of years on high dosage. The smurf side effect.

 

[Breezer]

The smurf side effect.

NEAT

 

[trancerobot]

I'd never heard of visual snow as an actual disease you could get until I read this thread. Holy cow.

 

[Marlino]

Thank you guys for warning here. I have a box of trobalt at home but your stories keeping me away from it. It's very very responsible of you to tell your experiences.

 

[ReyKalinic]

I'd never heard of visual snow as an actual disease you could get until I read this thread. Holy cow.

contact Kyxwz or search in some pages before this . He developed a serious neurological condition from trobalt called visual snow. Copy and paste his message; "hi; on dannyboy advice i took trobalt and developed a rare neurological serious condition called visual snow and i'm full of floaters. Even him have those, but hi is really crazy. Now the damage is done"

Thank you guys for warning here. I have a box of trobalt at home but your stories keeping me away from it. It's very very responsible of you to tell your experiences.

don't take this drug!

@trancerobot
https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-258#post-197584

 

[undecided]

Why all the paranoia?

Get yourself checked beforehand, be in touch with your neurologist, get checked afterwards, do a proper taper up-down schedule and maybe this drug could be beneficial.
Some people in this thread were helped by it.
But don't do it alone, out of desperation or because you're in suicide mode or because someone else was "cured" from using it... This drug is sort of a coin-toss. Take all the precautions you can.

 

[Belle4412]

@Mpt keep going with the updates ... keen to hear how you are going.

 

[PatrickG]

Why all the paranoia?

Get yourself checked beforehand, be in touch with your neurologist, get checked afterwards, do a proper taper up-down schedule and maybe this drug could be beneficial.
Some people in this thread were helped by it.
But don't do it alone, out of desperation or because you're in suicide mode or because someone else was "cured" from using it... This drug is sort of a coin-toss. Take all the precautions you can.

Because three of us got brain damage. Most probably permanent. And I got it after three days on lowest dose. That is why there is paranoia.

 

[RaZaH]

This crap definitely had a negative effect on my eyesight , noticed floaters although that has subsided somewhat or i have stopped noticing them , mostly it just seems to have worsened my eyesight .
Also I timetraveled on this shit so...