Retigabine (Trobalt, Potiga) — General Discussion

[Stakovic]

Trobalt cause me Visual Snow. Is the new symptom after two months from suspension. Other two people on this forum have take visual snow from trobalt. Is is the biggest mistake of my life. Trobalt ruined my life completly.

I had visual snow in my left eye in 2005 ,I had never taken trobalt befor. So you are not sur that trobalt caused your visual snow ,stop blaming your self.

 

[Marlino]

One general question:
If Trobalt helps, is Trobalt only giving temporary relief or does it last?

@ATEOS: if I'm right you mentioned to have a lasting reduction of 50%?!

 

[undecided]

You have to try for yourself.
Trobalt will either work for you, or it won't, or it will give some other permanent problem.
This has been the bottom line of 259 pages of mostly nonsense.

 

[snow86]

You have to try for yourself.
Trobalt will either work for you, or it won't, or it will give some other permanent problem.
This has been the bottom line of 259 pages of mostly nonsense.

Agree, some of us wrote pretty detailed posts about this here.

All in all: not worth it - potential short time relief followed by potential liver problems, urinary retention, chronic eyes floater, blurred vision, even worse T. All happened to me after almost 2 months with the higest dosage. In retrospect - wish I had not tried this.

 

[Marlino]

Well, it seems that when it comes to T almost everything is nonsense or at least highly questionable.

All I know is that in chronic pain therapie they try to end the ailment by intense analgesic treatment for a short period. Idea is to make the brain to unlearn the pain.

@attheedgeofscience. Your trobalt protocol reminds me of that.
Was this your idea? First fixing the ear problems with stem cells and then eraseing the neural imprint of it?

 

[Kyxwz]

ATTENTION/WARNING:

This is not meant to be a message to make terrorism. But unfortunately I have to report what happened for the good of all of you.
Me and two other members of Tinnitus Talk (I will not make the names) we found ourselves togheter on the Visual Snow FB page after use of Trobalt.
Unfortunately, as a result of its use (or use of paroxetine immediately after it or for both thhese drugs)) I developed the Visual Snow.

https://en.wikipedia.org/wiki/Visual_snow

This problem is much worse than tinnitus because you are no longer able to have an efficient vision (also the eyes are always tired; the feeling is that of being drunk without the "pleasant" effect).
It' probably Trobalt fault that give me floaters before and VS after a while so I report what happened.
Use at your own risk.

 

[undecided]

Took a lot of Trobalt, thank God it never gave me any other health issues (besides a slightly more orange-y pee which goes away as time goes by).

 

[Kyxwz]

Took a lot of Trobalt, thank God it never gave me any other health issues (besides a slightly more orange-y pee which goes away as time goes by).

Probably you don't have any predispostion. But i have use Trobalt not in a correct way. Taper on too fast and taper off cold turkey (because I was scared of Floaters).

 

[linearb]

ATTENTION/WARNING:
This problem is much worse than tinnitus because you are no longer able to have an efficient vision (also the eyes are always tired; the feeling is that of being drunk without the "pleasant" effect).

Hi Kyxwz,

I am really sorry this happened to you, I know massive visual issues suck, I've had severe permanent palinopsia and snow for nearly 2 decades. I just wanted to say, personally, I disagree with the "worse than tinnitus"; I've habituated to my visual problems much more readily than to tinnitus, and I personally would probably be okay with doubling the intensity of my visual snow if it would make my ears STFU. So, we are all different.

Of course, getting worse visual snow without actually fixing the tinnitus, is a tremendous bummer.

 

[Codaz]

Probably you don't have any predispostion. But i have use Trobalt not in a correct way. Taper on too fast and taper off cold turkey (because I was scared of Floaters).

Do you have them now? I got them and it's almost as worse as T. Very distracting. It's my luck that they came after the T so I was a bit used to a rollercoaster in my life. But yet another rollercoaster is still shit.

 

[Kyxwz]

Hi Kyxwz,

I am really sorry this happened to you, I know massive visual issues suck, I've had severe permanent palinopsia and snow for nearly 2 decades. I just wanted to say, personally, I disagree with the "worse than tinnitus"; I've habituated to my visual problems much more readily than to tinnitus, and I personally would probably be okay with doubling the intensity of my visual snow if it would make my ears STFU. So, we are all different.

Of course, getting worse visual snow without actually fixing the tinnitus, is a tremendous bummer.

Probably we are different but personally vision problem are worse than my tinnitus.
I develop also tons of floaters after Trobalt.

And I have every symptom of VS. In the sky or in front of a light (for example a window or a white wall illuminated by a source of lighe) I see tons of crazy dots that are in movements. I see afterimages, photophobia, glare, halos etc... But it is NOT these thing that bother me as the snow.
The "snow" for me is this one (i link you a video). Imagine this video with color and without too many dots. Pay no attention to the detuned TV effect (i see this effect but it's more strong) but see the image that jumps, trembling. THIS IS FOR ME VS! As if on the whole reality there was a continuous pulsing / flashing with dots on light but not indoor, Indoor there is this "jumping image", this flikering effect; it's clear and very fast. I feel sick; I have headache every day and I can not see well. I am always sickened by what I see.

Tinnitus? Personally I have a mild Tinnitus and only the obsession for it push me to make these errors. Yes, tinnitus bother me. I hate it. But this vision in my case is much worse than T. https://www.youtube.com/watch?v=UlwojjLEr4c

 

[Kyxwz]

Do you have them now? I got them and it's almost as worse as T. Very distracting. It's my luck that they came after the T so I was a bit used to a rollercoaster in my life. But yet another rollercoaster is still shit.

You means floaters? Yes I develop TONS of them with Trobalt. And after a month of stop (i used it only for 7 days) VS.

 

[swc5150]

FYI, most floaters can be eliminated with laser surgery. There are only 3 doctors here in the US that I'm aware of that do it, but we have one here in my state, and the treatment works great.

 

[linearb]

The "snow" for me is this one (i link you a video). Imagine this video with color and without too many dots. Pay no attention to the detuned TV effect (i see this effect but it's more strong) but see the image that jumps, trembling. THIS IS FOR ME VS! As if on the whole reality there was a continuous pulsing / flashing with dots on light but not indoor, Indoor there is this "jumping image", this flikering effect; it's clear and very fast. I feel sick; I have headache every day and I can not see well. I am always sickened by what I see.

Yup I don't have to imagine, I see all the same things and can identify 100%. I have no way of knowing if yours is worse than mine, but when I think about mine I realize it's constant and quite severe.

It drove me nuts for the better part of a year and then I stopped thinking about it almost completely. The only time it makes me a little sad is trying to look at stars in the night sky, but even that is something I can often do without consciously thinking about how completely insane my visual field is compared to what it was like when I was 15.

When my visual issues onset, I also had what I'd describe as mild tinnitus; years of firearms, rock music and lawnmowers have pushed that balance into a worse place.

 

[Codaz]

FYI, most floaters can be eliminated with laser surgery. There are only 3 doctors here in the US that I'm aware of that do it, but we have one here in my state, and the treatment works great.

There are no results of long term effects of the laser. It's not like a toy store flashlight that we put into our eyes.
Femtolaser is maybe the next step. Thing is that it needs at least 60k euro in crowdfunding to start the research, and that it will need 3 years. With this second thing that is not easily curable I'm beginning to loose faith in medical science and worry that I will get even more serious things in the future.

 

[Pleasure_Paulie]

So do people still take this drug or has the community stopped due to the complications?

 

[ReyKalinic]

So do people still take this drug or has the community stopped due to the complications?

Good sense would suggest yes. The risks are too high and far to justify the indiscriminate use. Many people that read on internet about retigabine went to their Docs with pages and pages printed about this discussion sayng: "we have a cure please prescribe it", and after they got a lot of healt issues even life threatning with 0 reports of benefits. Here there are a serious responsibility

 

[Alue]

Good sense would suggest yes. The risks are too high and far to justify the indiscriminate use. Many people that read on internet about retigabine went to their Docs with pages and pages printed about this discussion sayng: "we have a cure please prescribe it", and after they got a lot of healt issues even life threatning with 0 reports of benefits. Here there are a serious responsibility

I think it's a bit disingenuous to say 0 reports of benefits with life threatening health issues.
After reading just about this entire thread, one reoccurring theme I see is that almost no one took it as recommended by the manufacturer, either tapering on or off to quickly, or taking it to very high dosages. I think retagabine is a serious medication that one should weigh the pros and cons with, but you also have to realize most medications can have serious consequences when taken at very high dosages or taken inappropriately.

I do highly suspect 400mg tid is too high for safety. A lot of drug manufacturers recommend a maximum dosage that is too high then end up lowering it later.
J&J finally lowered the maximum dosage of Tylenol in 2011, but how many people died of liver failure caused by Tylenol before that happened?

 

[linearb]

J&J finally lowered the maximum dosage of Tylenol in 2011, but how many people died of liver failure caused by Tylenol before that happened?

I think the new guidelines are still pretty shoddy. 2 grams a day? 2 grams a month is probably better.

 

[papu]

I still take 200 mg ocasionally ( one time a day for two weeks and then maybe two to three weeks off) it does help to make my tinnitus more manageable without so many side effects). When i take it, its effect is variable, sometimes it gives me hours of profound relief (4 to 5 hours), sometimes only 1 hour. I defineatly does something at least in acoustic trauma. I have always stated that at least in its current form (retigabine) its not a cure but more like an aspirin to be taken when tinnitus become very intrusive and bothersome. About floaters i have notice that i become very aware of them will taking trobalt and after leaving it for a couple of weeks they become much much less noticiable (almost invisible). Somehow it seems that trobalt affects rapid firing neurons involved with the retina that might make floaters not visible or less intrusive when firing properly. Just my two cents.... hopefully rl 81 or something like that (i forgot how the new version of retigabine on steroids its call). will fix the side effects will making tinnitus treatable like a headache or hipertension (you take a pilll everyday). =).

 

[Alue]

I think the new guidelines are still pretty shoddy. 2 grams a day? 2 grams a month is probably better.

The thing is, the liver is pretty resilient and is able to regenerate if given enough time to. 2 grams in a day will likely cause an increase in AST and ALT indicating the liver is working hard, but as we know from alcoholics that end up with liver cirrhosis, if you continue pushing it to the limit and don't give enough time to recover eventually you'll reach the point of no return.
2 grams a day for an extended period of time is a very bad idea in my opinion.

 

[Danny Boy]

Epilepsy drug Trobalt (retigabine) to be discontinued
The epilepsy drug Trobalt, also known as retigabine, is to be discontinued and will no longer be available after June 2017.

Trobalt, made by the pharmaceutical company GlaxoSmithKline (GSK) has been available in tablet form at 50mg, 100mg, 200mg, 300mg, and 400mg dosages.

Advice for healthcare professionals
Healthcare professionals are advised to begin seeking alternative medicines for existing patients as soon as possible and to ensure that all patients are withdrawn from this medicine by the end of June 2017 at the latest.

Patients' treatment should be withdrawn with a gradual dose reduction over a period of at least three weeks, following current prescribing information. All patients should continue to receive safety monitoring in line with the local prescribing information while they remain on treatment with Trobalt. No new patients should now start on this treatment.

Safety issues
In 2013 GSK announced that there were safety issues around the drug as it could cause a blue discolouration of the skin and eye abnormalities. Doctors were urged to review patients prescribed the drug and to re-evaluate benefits versus risk.

However now, due to the very limited use of the medicine and the continued decline in new patients being prescribed Trobalt, GSK is discontinuing the medicine on a permanent basis.

Trobalt has been prescribed as an add-on treatment for drug-resistant partial onset seizures with or without secondary generalisation in people aged 18 or older.

https://www.epilepsysociety.org.uk/...ne-to-be-discontinued-14-09-2016#.V-xuIpMrJsM

 

[Ian Mac]

you can't fix the ears with pharmaceuticals! bangs head on wall, still can't fix ears with pharma. you need to fix the damage. stem cells, gene therapy. pharma has no chance

 

[Stakovic]

I was in quite room this evening I tried for the first time 200 mg of trobalt ,20 minute later the drug reached the target and done the work.my tinnitus decreased at level that it was in 2005 ,but this decrease was lasted in short time, I felt like this drug said to my T "what's the matter with you ? T answered " I were waiting for you for a long time. I can say yes it works.

 

[Stakovic]

Forget to add
Iwant just to know if really this drug works .It was my first and last pill.

 

[SoulStation]

Well no one will be able to get it anyway.

 

[ReyKalinic]

Forget to add
Iwant just to know if really this drug works .It was my first and last pill.

There are only some reports on this "forum", unreliable. Furthermore there aren't even anectodal reports in the offical literature. More; all medications requires times before show an improvement (2 up to 4 weeks). Your seem the trivial example of a placebo. be wary of other people's experiences. Follow your neurologists

 

[papu]

I use it occasionally and it lowers it considerably sometimes for hours with one pill. The problem is the nasty side effects in my case floaters and visual acuity ( they become less and less noticeable while not on trobalt). Its not placebo as i once commented it probably has to do with the type or origin of the tinnitus. At least in my case one time acoustic exposure it did help a lot.

 

[undecided]

There are only some reports on this "forum", unreliable. Furthermore there aren't even anectodal reports in the offical literature. More; all medications requires times before show an improvement (2 up to 4 weeks). Your seem the trivial example of a placebo. be wary of other people's experiences. Follow your neurologists

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.

 

[Alue]

I use it occasionally and it lowers it considerably sometimes for hours with one pill. The problem is the nasty side effects in my case floaters and visual acuity ( they become less and less noticeable while not on trobalt). Its not placebo as i once commented it probably has to do with the type or origin of the tinnitus. At least in my case one time acoustic exposure it did help a lot.

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.

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.

Flupirtine is less 'safe' than trobalt.