Retigabine (Trobalt, Potiga) — General Discussion

[Poyraz]

I've tinnits for a month and half now and my possible cause is wisdom teeth and benzodiazepines. Should I ask my doctor about these drugs? They look very exciting.

 

[Twitch]

Has anyone had tinnitus permanently worsened by trobalt?

I forgot to mention this in my progress report and cannot edit it but yes I have noticed my left eye twitching every now and again. I am on 300mg TID.

I've tinnits for a month and half now and my possible cause is wisdom teeth and benzodiazepines. Should I ask my doctor about these drugs? They look very exciting.

Let me tell you that Trobalt has quite dangerous side effects. Please educate yourself before even considering taking it

 

[RaZaH]

this eye twitch is now in both eyes , extremely annoying .

 

[Poyraz]

I forgot to mention this in my progress report and cannot edit it but yes I have noticed my left eye twitching every now and again. I am on 300mg TID.



Let me tell you that Trobalt has quite dangerous side effects. Please educate yourself before even considering taking it

Yeah I have read the comments and it looks scary but I'm aftaid if my tinnitus turns into chronic one I'd be late to try.

 

[Martin69]

I don't know if this helps anyone. But took Trobalt twice within 10 days. Each time 200 mg on empty stomach. Once it had no effect. Yesterday it put my T down from 8/10 to a 3/10 or 2/10. Also it had a "high" effect like a benzo and took my anxiety completely away. Felt normal again, like myself again. But was dizzy.

So currently I only take it from time to time to get some hours relief.

 

[Christian78]

Reading your posts above makes me think, can't you cut your auditory nerve and be gone with T if you're on the edge, instead of killing yourself slowly with numerous medications with severe side effects. Better deaf in silence than dead.
https://www.tinnitustalk.com/threads/cochlear-nerve-section-cures-some-peoples-tinnitus.1792/

that is not proven, but in most cases becomes worse as there is no input from outside it becomes stronger

 

[Christian78]

Hm I'm thinking that maybe they don't have to cut it right away, but somehow disable the nerv and see it it helps. Maybe doesn't work at all but that would be way better.

garamicine injection they give and kill cohlea, and often produces terible results

 

[lymebite]

Article on redesigned version of retigabine with more potency and reduced side effects:

http://medicalxpress.com/news/2016-03-team-redesigns-epilepsy-drug-potency.html

 

[papu]

RL-81 love the new name it is good news but if it's still in animal studies I will take a long time to get out to the public if at all, but it's good to know that they are still working and even improving on sf0034. Thanks for the share @lymebite

 

[Twitch]

So I posted an update in the user experiences thread and taking 600mg Neurontin alongside trobalt does seem to have a positive effect.

@preslys @papu I know you guys have taken Neurontin with Trobalt, a bit of a person question but can I ask what your body weight is?

 

[RaZaH]

Stopped completely in my Trobalt trial , no lasting benefit ...3 weeks of eye twitching ...sigh.

 

[Leon909]

@RaZaH I'm very sorry to hear that. How long did you maintain RTG on a high dose? Has your eye twitching gotten better now?

 

[papu]

@Twitch

79 kilos. Also i found during my trial that combining neurontin with retigabine gave at least three days of almost complete silence before it came back to what it was before the combo. After that it made no difference the combination so i stop taking it and after a month try again and got two to three really quiet days but always the effect was short lived *the most three days*.

 

[RaZaH]

How long did you maintain RTG on a high dose?

I took this stuff for almost 4 months , had to stop at one point when I ran out ...exactly at the point where I had been on a high dose for 3 weeks and got 3 awesome consecutive days and felt " this might be working?", obviously that might be and probably was a coincidence. Annoying though.

After a got a resupply , I started again on a high dose, lasted maybe 3 weeks when I gave up on the drugged effects , eye twitching etc. Didnt feel that it really worked as well when I reinstated.

Keep in mind that I really hate drugs , this whole thing was hard for me so I am glad Its over although I wish it would have had any lasting benefit ...I was not looking for temporary relief

 

[amandine]

why dont we just accept that this stuff doesnt work....even danny boy is still on it....and he started back in november 2015 and is now on two anti epileptic drugs that he takes one of which is trobalt.....the new trobalt will be out in a few years maybe which will probably work...
this temporary fix sounds very much like valeries experience too

 

[Mithrandir]

I've just finished my Trobalt trial, which lasted 2 months and 3 weeks at 1200 mg daily. I had some light improvements with my tinnitus. Nothing for my hyperacusis/ear pain/headache/fullness/crackling/popping.

I'm a bit disappointed... I had some bad side effects, nothing important but annoying...

I took my last 100 mg dose tonight. How long will the drug stay in my system after the last dose?

Good luck to all the brave souls trying Trobalt.

 

[Soul Reaver]

I've just finished my Trobalt trial, which lasted 2 months and 3 weeks at 1200 mg daily. I had some light improvements with my tinnitus. Nothing for my hyperacusis/ear pain/headache/fullness/crackling/popping.

I'm a bit disappointed... I had some bad side effects, nothing important but annoying...

I took my last 100 mg dose tonight. How long will the drug stay in my system after the last dose?

Good luck to all the brave souls trying Trobalt.

There's a general consensus on 2 weeks to clear your system of drugs. I imagine Trobalt would not be an exception.
Someone correct me if I'm wrong.

 

[valeri]

why dont we just accept that this stuff doesnt work....even danny boy is still on it....and he started back in november 2015 and is now on two anti epileptic drugs that he takes one of which is trobalt.....the new trobalt will be out in a few years maybe which will probably work...
this temporary fix sounds very much like valeries experience too

It's not that it doesn't work but for most of us the results are not permanent and simply all over the place.
I had some of the best and worst days on trobalt.
My trial lasted only 6 weeks and now I'm back to square one, exactly where I was before trobalt.
The only improvement I notice is that I'm not getting much of fleeting tinnitus any more.
My only hope is that if I responded to trobalt I would be even better off with newer formulas, if they ever come out
I simply doubt that t will be cured or helped by few months of any drug, it's more likely to be a lifetime of taking something to keep it under control.
And I don't have problem with that at all.

 

[Aussie Lea]

it's more likely to be a lifetime of taking something to keep it under control.
And I don't have problem with that at all.

As long as the bad side effects don't make our lives miserable

 

[Richard zurowski]

This drug is unpredictable and to dangerous to take for tinnitus. That's why I won't take it .

 

[Christian78]

I've tinnits for a month and half now and my possible cause is wisdom teeth and benzodiazepines. Should I ask my doctor about these drugs? They look very exciting.

Both are possible, long term benzo with sudden stop (and as we know benzos do kill neurons and make brain to spunge), and wisdom tooth is also usual case. One of 500 different types of tinnitus

 

[Christian78]

This drug is unpredictable and to dangerous to take for tinnitus. That's why I won't take it .

Good for you, I am right now in Belgium in tinnitus clinic where they are discussing to make trial of 200 patients on trobalt for tinnitus to see effect and finally it has been understood that tinnitus has many different types, so trobalt work on one, rTMS on other, and so on, there will hardly be one medicine ever for all types of tinnitus or rather one treatment.

 

[Christian78]

I've just finished my Trobalt trial, which lasted 2 months and 3 weeks at 1200 mg daily. I had some light improvements with my tinnitus. Nothing for my hyperacusis/ear pain/headache/fullness/crackling/popping.

I'm a bit disappointed... I had some bad side effects, nothing important but annoying...

I took my last 100 mg dose tonight. How long will the drug stay in my system after the last dose?

Good luck to all the brave souls trying Trobalt.

I am sorry to hear this, i had good effect that ended. What I hear now from doctors is that there are at least 500 different types of tinnitus. For example my t is not located at all in auditory cortex.

Now they start to do categorisation. AUT063 could work , and maybe it does, BUT FOR ONLY ONE PART of T sufferers, tinnitus is so diferent from person to person...

 

[Christian78]

why dont we just accept that this stuff doesnt work....even danny boy is still on it....and he started back in november 2015 and is now on two anti epileptic drugs that he takes one of which is trobalt.....the new trobalt will be out in a few years maybe which will probably work...
this temporary fix sounds very much like valeries experience too

stuff works, but only on one of 10 types of tinnitus, there will never be simply one pill, becouse as they discovered, someone had tinnitus becouse of neck, someone becouse of jaw, someones t is in centre for attention , someone is in auditory cortex, it is so different, so many types and subtypes. The New way is to try to treat only major types and they are not even discovered.

 

[Onnie]

Good for you, I am right now in Belgium in tinnitus clinic where they are discussing to make trial of 200 patients on trobalt for tinnitus to see effect and finally it has been understood that tinnitus has many different types, so trobalt work on one, rTMS on other, and so on, there will hardly be one medicine ever for all types of tinnitus or rather one treatment.

Is this in Antwerp or some place else?

 

[Richard zurowski]

Well!! So there's ten different types of tinnitus. Like the common cold there's a dozen or more strains that cause it. And they can't even find a cure for a cold so what are the chances that they will find a cure for tinnitus ?

 

[Christian78]

Is this in Antwerp or some place else?

Yes Antwerp, I am right now here in Antwerp.

 

[Mithrandir]

@Christian78 are you better now ?

 

[dj_newark]

I've had tinnitus for about 26 years. And I just got my doctor to write a prescription for a 30 day supply of Potiga at 100mg each.

It's not much. He says that he wants to ramp me up slowly and monitor the effects. I'd like to get up to 300mg at 3x per day like MPT has.

But what I want to know is if there is any history of this helping someone who's had tinnitus for a really long time? I read that MPT has had it for 5 months before it started helping.

Any ideas there?

Thanks

 

[amandine]

But what I want to know is if there is any history of this helping someone who's had tinnitus for a really long time? I read that MPT has had it for 5 months before it started helping.

point is that no one knows.....there are people who have had it a short time and it has not helped and others had it a short time and it helped....also people who had it longer and it helped and others longer who it didnt help....that is the point....