Retigabine (Trobalt, Potiga) — General Discussion

I dont think trobalt was the cause ,we know that a lot of people have tinnitus have also vision issue (eye floaters,visual snow,flaches...).so don't blam your self.

 

@Stakovic . Hi. You have taken trobalt for two months that's not very long . I'm sure you will be fine. You said that you have had a eye test and that your eye sight was good .so that is reassuring. Im glad that you have stopped taking trobalt . It's far to risky to take it long term. I'm sure your symptoms will subside. Because a friend of mine was taking it for his epilepsy and had similar symptoms as you described. And his symptoms cleared. So there's a good chance your symptoms will to. Hope this was some help to you.

 

So is trobalt/retigabine also based on gaba, like lyrica/gabapentin/neurontin?

sorry if it's been asked and answered before, i couldn't find it if so, so if someone could point me in the right direction that would be much appreciated. thanks.

 

Retigabine is a potassium-channel opener. It does have effects on GABA, but otherwise its mechanism of action is unique among entiepileptic drugs. It's quite different from basically any drug that exists today, including lyrica, gabapentin, or neurotonin.

 

Thanks for your reassuring replies. I'm still worried my eye problems have something to do with trobalt. Since I’ve read about the vitelliform maculopathy I can't get it out of my head.
On the other side, I work in IT and have been very busy, stressed and make long days often so maybe my complaints are stress/tiredness related.

One positive thing about my eye issues: since I have eyesight issues my T is "Cured". It's still there as it always is (and will be probably) but I couldn't care about it anymore. I'm fully in peace with it now. I only hope there is nothing seriously wrong with my eyes.

 

Do you mean yout T was less intense when you were on drug? Was there any time period that you got "silence"?

 

@zoid . Stress on the human body can and will cause all sorts of problems. Try to find ways of to relax to heal your body of stress. I've found my way of coping with stress by listening to slow classical music and having Bowen therapy I find after having this treatment I'm compleatly relaxed. You will have to bring your stress levels down to feel better in yourself.

 

For me Trobalt is the 100% cause of floaters. I have a lot of floaters after few days on trobalt (just 8). During the last day i develop a lot of spots that i didn't have before. I ruin my life two time: tinnitus for a trauma accident (it's not my 100% fault) and now, tons of floaters for a personal error. I have others controls for my eyes that for now are fine but with these vitreous problems.

 

No,May be you have ruined your life one time only ,it's just your thought I had tinnitus since march 1998 and one
month later the eye floater in my left eye started ,I didn't take any medication in my opinion there is a relation between auditory cortex and vision cortex.

 

i have floters too, right since onset and i havent take retigabine

 

I dont think so only because i have take tons of floaters just AFTER trobalt not before. Before i had just one clear spot, a normal floater. And after some medications i had got three or four floaters (some with a black colour). But after trobalt... a nightmare. So in my case there is a correletion with peraphs a predisposition... i don't know.

 

is anyone using trobalt still?

 

@Danny Boy maybe?

 

if retigabine is to do with GABA, then do the GAD enzymes have anything to do with it?

Glutamate decarboxylase or glutamic acid decarboxylase (GAD) is an enzyme that catalyzes the decarboxylation of glutamate to GABA and CO2. GAD uses PLP as a cofactor.

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

 

Hi, after many of us I have take Trobalt and after some of us I have develop several floaters after using this drug.

After three eye exams with three different doctors I met a (great) ophthalmologist that he was able to finally explain how the Trobalt may have acted in the genesis of floaters. No one before had any answers and everybody remained incredulous.

I will try to write (and report) all of this in English so sorry for mistakes. An admin can correct my mistakes if he wishes it.

(after an introduction…)

Me: But I can’t understand… why after this drug I develop several floaters? No one can answer me and some of they speak about a coincidence but it's ridiculous!

Doc: Your eyes are healthy and you see perfectly. Retina adherent with a perfect macula. Just several floaters in both eyes. I don’t believe in this coincidence too. Who was the drug?

Me: It’s Trobalt, an anti seizure drug (and I tell him about Tinnitus talk and Tinnitus and why I have tried this drug).

Doc: I see. I'm so sorry. What is the active ingredient?

Me: retigabine…

Doc: I do not know this principle. But you're very prepared. Do you know where the drug acts?

Me: Yes, is a potassium channel opener.

Doc: Mmmh, seriously?!

Me: Yes. Do you think something about?

Doc: Oh yes, now I understand why all of this. The retina communicates with other components of the eye through an electrolysis process. If you go to act on potassium channels in a certain way you can vary this communication.

If the increase of the drug is too fast your system can not compensate for the change. Then the drug has led to open potassium channels in a way too strong. This means that the vitreous humor has not received active substances which have ended in other parts of the system (probably neurological system). This means that your eyes have suffered an immediate dehydration process. You have not had a vitreous detachment, but an absence of key elements that keep the vitreous compact. This has resulted in an immediate dehydration in the vitreous humor and you have manifested floaters.

Me: Ah, it’s incredible are you sure of this?

Doc: Pretty sure. But there is nothing to do, probably you know that…

Me: Yes…

Doc: but… there is some room for improvement because you don’t have a PVD. The vitreous has a transport mechanism of the substances that can be supported. This mechanism in a young individual, without detachment of the vitreous, can be improved with some elements (hyaluronic acid etc...). These elements are absorbed by the eye in very small amounts but they can ensure that some floaters become smaller or might be replenished in the vitreous humor. This process could take several months or years but they could become better.

Me: And when I will have a natural PVD my floater have a secure worsening?

Doc: Yes but… is too soon for that! We hope that in future could be something for remove floaters.

(We speak about other things and about floaters it’s all).

End.


So… I have take bad floaters from trobalt. I suggest to stay away from this drug. Tinnitus did not improve under trobalt or just a little in some moments (for me) so the damage was much higher than the benefit in my case. I was so stupid and I now live with many floaters and tinnitus. One more problem for a one more difficult life.

Hope that this message could be interesting.

@Markku i think that is important for who want try trobalt, could you stop this message on board so everyone could read it?

@Danny Boy @Leon909 @RaZaH and for other people that have take floaters from trobalt.

 

Maybe you could add your trobalt protocol? I mean, one painkiller is not gonna kill you, but several dozens in one go might just do that. What doses did you take? Did you taper slowly?
Very sorry to hear about your floaters though. Hope they will vanish in the long run.

 

If this is the case, then the laser treatment for removing floaters (as described on wikipedia) could work, or am I missing something?

 

Nope, laser treatment for now is not a safe method in contrast to what is said. This also because the eyes doc could see just few floaters and probably They are those that disturb less because they are in the periphery. Baddest floaters are central floaters and an eyes doc can't remove these because they are too close to the retina and the central of our eye.
For now the best way is the vitrectomy or partial vitrectomy but is better to do this thing when a PVD begin. At the opposite the vitreous It is still too adherent to the retina and you can have a retinal detachment.

But the best thing WAS to don't try trobalt.

 

What I understood from @Kyxwz 's doctor post is that there should an exact dose of Trobalt for every person and not the typical 400mg or 300mg doses that people use just because some other forum people used in the past.

 

Not exactly: you must to taper on and of slowly this drug and don't take it like an aspirin; is not about the right amount of dose for a person: for everyone, if you take a single shot too high you have an high percent of probability to develop floaters. I committed this error because i have read about some people like @monacco that take single doses without problem but other like @Leon909 on 300mg (like me) develop this.

 

Who knows, probably not...

 

Metabolism in vitreous humor is really slow so I think that the dosage increase should be pretty extreme before it had an effect that your ENT is suggesting (if it even is possible - I don't know). Additionally floaters aren't mentioned in any side effect lists I've seen (even the people who have been taking big doses for a long time).

 

Hey all ,
I try trobalt a month ago and now i regret it big time
I loose a lot of acuity on one of my eye I was on very low dosage 300 by day for 1 week only
Every doc that I see told me that s not possible but my vision is blurred since trobalt !!
I even call the lab they say it should come back (I m still waiting) .
I drink alcohol the day I stop maybe I should not but my doc told me that there was no interaction (the lab told me the same )
Now I have tinnitus plus eye pb that cannot be fix by glasses .
Think about it if you want try this poison !

 

Has anyone in Australia had success in finding a doctor to write a script for Trobalt so they can import it themselves? It's TGA approved and so they will allow it into the country. It's a Schedule 4 so you need a script for it. Any doctor can write the script. But nobody seems to want to write the script. So catch 22.

I called GSK today and they again said they had no plans on making it available here, and it was approved in 2013 so after 3 years if they haven't done it yet chances are it won't happen anytime soon.

So, now I just need to find a doctor in Australia who might write a script. Any help would be appreciated. Thanks.

 

I'm from Australia. Are you sure it's as simple as getting the doctor to write you a script? I would think there is obvious laws etc that may prevent this or call into question the physician licence; despite being approved by the FDA.

 

Yes. feel free to call the TGA yourself to check though. They don't care what something is prescribed for as long as a doctor writes the script.

Most doctors will probably refuse because they don't want to prescribe something off label, but it's legal according to the TGA.

perhaps if you double check my findings with the TGA , Glaxo Smith Kline and your GP then we'll know for sure if they are incorrect.

 

It's intriguing that GSK has yet to sell the product in Australia. It's not like that importing would be a difficult process or expensive since their distribution channels have already been established. Nor would marketing be expensive either as it's only sold to chemists and marketed to GPs -- it would be just tacked on the list of products already being marketed. And there are no more certification roadblocks to overcome.

It should be a no-brainer for them to sell it in Aus. Hmmm.

 

Trobalt has gradually been withdrawn from most European countries as a potentially unsafe and ultimately insufficient adjunctive treatment for epilepsy. Why on earth would GSK want to import it to Australia?

 

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.

 

Yes please avoid it at all costs. Not worth it. A very dangerous medication!