Retigabine (Trobalt, Potiga) — General Discussion

[RaZaH]

Yes dude , I took Rivotril for a year because of I was wrongly diagnosed with Essential Myoclonus.
Suffice to say that it turned me into a zombie goldfish so I decided to stop ...cold turkey as my doctor advised me !?
After about a week of torment I literally heard my hearing drop , day after that ....T.

Do not touch that stuff.

 

[RaZaH]

Also , I think we should be wary of getting our hopes up, as of yet this has only worked for one person.

 

[Viking]

There was a drug that is now banned called rivotril/clonazepam that was for epilepsy that was used a lot for tinnitus, any of you guys had used it ?

Yes i use it from 2007! It' sa benzidiazepine and i took it ta night. No important sode effects. If you take ti during the day Will be sleepy. Used for long time cause dependace fisical and psichical.
The most benzo used in tinnitus tha i know is alprazolam.
Which country banned rivotril?

 

[Christian78]

Clonazepam is not banned, it is used in Sweden, Serbia, Croatia, and Bosnia. 0.5 mg-2 mg pills.
EU Regulator: Trobalt Use Should Be Restricted Due To Eyesight Risks
Posted Jun 3 2013 in anti-epileptic drugs, including risks during pregnancy

An epilepsy drug called retigabine (brand name Trobalt) should only be considered after other therapies have failed due to possible side-effects affecting the eyes, the European Medicines Agency (EMA) has said.

IN EU retigabine has been restricted, as last line of defense, ONLY when all other meds don't have effect, to be used as aditional to ther medication , not as single medication.

I have been searching internet and there are evidence that affect prolonged usage retigabine courses sight loss, and until now there is not evidence it is reversible.

I started using Retigabine 2,5 days ago and i has minor side effects anxiety and dizziness, it is introduction dosage but no real good effects on tinnitus for now.

 

[Christian78]

There was a drug that is now banned called rivotril/clonazepam that was for epilepsy that was used a lot for tinnitus, any of you guys had used it ?

I used it even 2 mg per day, it is not banned in EU.

 

[James White]

Ok, well they stopped prescribing it in France i think...

edit: they still do under strict control

 

[Viking]

Ok, well they stopped prescribing it in France i think...

Where do you Read this news?

 

[James White]

Where do you Read this news?

Just to specify and not diverge from the original subject concerning Retigabine, i'm talking about Rivotril and i've just read on the french NIH that they don't prescribe it for more than 12 months and only in very specific conditions, GPs can't prescribe it anymore, only psychotherapeuts.
So it's still available in France.

 

[benryu]

Clonazepam is not banned, it is used in Sweden, Serbia, Croatia, and Bosnia. 0.5 mg-2 mg pills.
EU Regulator: Trobalt Use Should Be Restricted Due To Eyesight Risks
Posted Jun 3 2013 in anti-epileptic drugs, including risks during pregnancy

An epilepsy drug called retigabine (brand name Trobalt) should only be considered after other therapies have failed due to possible side-effects affecting the eyes, the European Medicines Agency (EMA) has said.

IN EU retigabine has been restricted, as last line of defense, ONLY when all other meds don't have effect, to be used as aditional to ther medication , not as single medication.

I have been searching internet and there are evidence that affect prolonged usage retigabine courses sight loss, and until now there is not evidence it is reversible.

I started using Retigabine 2,5 days ago and i has minor side effects anxiety and dizziness, it is introduction dosage but no real good effects on tinnitus for now.

Can you share the dosage you're using please ?

Here is the dosage I am was recommended by my doctor: (I haven't started the treatment yet as I have to import it from a foreign country, it's not available anymore in Canada)


EDIT: He also told me that I should not see any improvement before week 3/6.

 

[Mpt]

benryu.. I wonder why he said no improvement before at least week 3-- did he explain his thinking at all-- I would say I had all the "improvement" that I experienced by about 10 days to 2 weeks in-- of course I think I tapered up quicker than most people here are being advised to

 

[benryu]

benryu.. I wonder why he said no improvement before at least week 3-- did he explain his thinking at all-- I would say I had all the "improvement" that I experienced by about 10 days to 2 weeks in-- of course I think I tapered up quicker than most people here are being advised to

He told me that I had T. for a while (2008), so it may take a bit more time than for a recent T. (providing the drug works ). I guess it's also related to the fact that the brain will need time to readapt (plasticity) and understand that there's less T. sound or no T. sound at all.
Last but not least, the dosage increases importantly between week 3 & 6 so it might play a role.

 

[SteveToHeal]

I hope you get the drug benryu and get some relief. It would be great if we had two people on here that it works for!!!

 

[Mpt]

He told me that I had T. for a while (2008), so it may take a bit more time than for a recent T. (providing the drug works ). I guess it's also related to the fact that the brain will need time to readapt (plasticity) and understand that there's less T. sound or no T. sound at all.
Last but not least, the dosage increases importantly between week 3 & 6 so it might play a role.

best of luck... i'll be so thrilled if this is able to give you and any others the type of relief that I have gotten, I'm not sure if I'm able to convey in my previous comments how great the effect of this has been... even though I struggled so much for 5 months, looking back on it now the whole ordeal (being assaulted by the sound, being scared to get out of the shower, etc) almost doesn't seem like it was real, like it was a nightmare that I woke up from or something-- I genuinely wish the same result for you

 

[benryu]

I hope you get the drug benryu and get some relief. It would be great if we had two people on here that it works for!!!

Me too, it's pretty hard to import drugs in a country, I guess it would be easier to smuggle cocaine

 

[Johno]

I started is 2,5 days ago and i have side effects of mental missuses like headache slight, more dizziness, slumber speech a bit i control it but dizziness and weakness is strongest side effect for now.

What induces your Tinnitus?

 

[SteveToHeal]

best of luck... i'll be so thrilled if this is able to give you and any others the type of relief that I have gotten, I'm not sure if I'm able to convey in my previous comments how great the effect of this has been... even though I struggled so much for 5 months, looking back on it now the whole ordeal (being assaulted by the sound, being scared to get out of the shower, etc) almost doesn't seem like it was real, like it was a nightmare that I woke up from or something-- I genuinely wish the same result for you

I think your story woke every T sufferer up and gave them hope that they too might get relief from this affliction once and for all, as you have. I really hope that this is the beginning of the end for all T sufferers. Going on 8 months now and no real improvement.

 

[Johno]

Me too, it's pretty hard to import drugs in a country, I guess it would be easier to smuggle cocaine

We can make a deal

 

[jazz]

I have been searching internet and there are evidence that affect prolonged usage retigabine courses sight loss, and until now there is not evidence it is reversible.

@Christian78 Yes, these risks are cited in this thread. Specifically, the FDA talked about the potential for irreversible blindness. The EU also talks about vision risks as being common. Do you have more or new evidence? If so, please include the links. In addition, alcohol should not be consumed with the drug.

If anyone's vision is affected, I hope he or she would immediately discontinue the drug. I would not wait it out.

Here is a 2011 drug application for Retigabine with the FDA:

http://www.accessdata.fda.gov/drugsatfda_docs/nda/2011/022345Orig1s000ClinPharmR.pdf
​

The application includes ethanol and Retigabine and notes the two should not be combined. Ethanol and 200 mg of Retigabine resulted in blurred vision. This excerpt appears on p. 70:



Here is more information on that ethanol trial from p. 66:



I suggest everyone interested in the drug read the application. We also need detailed information on the totality of adverse effects from the drug.

 

[lapidus]

best of luck... i'll be so thrilled if this is able to give you and any others the type of relief that I have gotten, I'm not sure if I'm able to convey in my previous comments how great the effect of this has been... even though I struggled so much for 5 months, looking back on it now the whole ordeal (being assaulted by the sound, being scared to get out of the shower, etc) almost doesn't seem like it was real, like it was a nightmare that I woke up from or something-- I genuinely wish the same result for you

I agree with @SteveToHeal
If anything this proves that T can be treated and that Autifony hopefully is on to something. I hope you realize that you're being part of something historical here.

 

[jazz]

I agree with @SteveToHeal
If anything this proves that T can be treated and that Autifony hopefully is on to something. I hope you realize that you're being part of something historical here.

Yes. This is proof that Autifony will work. But MPT's tinnitus was not chronic, >12 months. We need to see improvement here too. Like @benryu notes, reversing chronic maladaptive plasticity may be a function of dosage and duration. That needs to be determined, and many here appear willing to try.

 

[lapidus]

Yes. This is proof that Autifony will work. But MPT's tinnitus was not chronic, >12 months. We need to see improvement here too. Like @benryu notes, reversing chronic maladaptive plasticity may be a function of dosage and duration. That needs to be determined, and many here appear willing to try.

Yes, of course. I'm not statisfied until the researchers has sort all this acute/chronic bullshit out. To me "acute" T is like a couple of days, even hours after onset. If this potassium channel stuff will help people like @Zimichael for example, then I'm convinced that T can be treated, no matter if it's chronic or not. But then again, I'm actually only interested in treating H at the moment, and no one knows if this will treat H too.

 

[Viking]

Started trobalt today with a very low dosage 100mg. Consider i have dependece of rivotril 2mg. I want reduce risk of eccessive sedation.
I Will inform you about hoped for result
Ivan

 

[SteveToHeal]

I agree with @lapidus . This is a historical moment. Yes, there are lots of potential side affects. Mpt is willing to be out there on the front lines for himself ... and we get the benefit watching his progress. With possibly more recruits following shortly... I agree with all the posts so far that safety should be taken seriously.

Just a thought ... With it being such a momentous historical moment ... should we not be shouting this from the rooftops? Like be telling Autifony that there is someone here that is 99.99% cured and that they need to look into this drug. Has Mpt stumbled upon the cure? Or if Autifony can tell us that their drug is 'similar'?

Would be good to know. They might also be able to advise on the side affects side of things instead of everyone playing Russian roulette. Then again, they might want to close this info down, as it could be competitor to their own drug.

Just thinking out loud here. Any ideas how to get this info out there or does Mpt prefer to remain anonymous? Just now you'll have reporters with cameras rocking up at your Notting Hill doorstep ;-)

 

[cullenbohannon]

Autifony will work more specifically on the part of the brain causing the t. But is similar to this. That's why matt had the idea to try it.

I agree with @lapidus . This is a historical moment. Yes, there are lots of potential side affects. Mpt is willing to be out there on the front lines for himself ... and we get the benefit watching his progress. With possibly more recruits following shortly... I agree with all the posts so far that safety should be taken seriously.

Just a thought ... With it being such a momentous historical moment ... should we not be shouting this from the rooftops? Like be telling Autifony that there is someone here that is 99.99% cured and that they need to look into this drug. Has Mpt stumbled upon the cure? Or if Autifony can tell us that their drug is 'similar'?

Would be good to know. They might also be able to advise on the side affects side of things instead of everyone playing Russian roulette. Then again, they might want to close this info down, as it could be competitor to their own drug.

Just thinking out loud here. Any ideas how to get this info out there or does Mpt prefer to remain anonymous? Just now you'll have reporters with cameras rocking up at your Notting Hill doorstep ;-)

 

[Mpt]

I agree with @lapidus . This is a historical moment. Yes, there are lots of potential side affects. Mpt is willing to be out there on the front lines for himself ... and we get the benefit watching his progress. With possibly more recruits following shortly... I agree with all the posts so far that safety should be taken seriously.

Just a thought ... With it being such a momentous historical moment ... should we not be shouting this from the rooftops? Like be telling Autifony that there is someone here that is 99.99% cured and that they need to look into this drug. Has Mpt stumbled upon the cure? Or if Autifony can tell us that their drug is 'similar'?

Would be good to know. They might also be able to advise on the side affects side of things instead of everyone playing Russian roulette. Then again, they might want to close this info down, as it could be competitor to their own drug.

Just thinking out loud here. Any ideas how to get this info out there or does Mpt prefer to remain anonymous? Just now you'll have reporters with cameras rocking up at your Notting Hill doorstep ;-)

I have been in contact with researchers who did the initial retigabine rat studies- I was told that they are still conducting retigabine studies on two fronts: how long how long after insult retigabine can be given to prevent permanent tinnitus, and investigative studies on retigabine in regards to "curing" tinnitus that has become permanent already

 

[Mpt]

i'm not sure of their definition of "permanent" in the rat model, or if they have formulated that definition.

 

[Mpt]

the fact that this worked in a rat model, and that it worked on me-- coupled with the similarity of autifony's pottasium channel modulator and its success in rat models, coupled with lidocaine's effect on calcium channels and short term relief of tinnitus (and their interaction with pottasium channels)--- I really can't believe this is all due to dumb chance -- I really think its a question of "when" a cure will be brought to market and not "if" that will happen anymore because the research is on the right path

 

[RaZaH]

I'm not sure about this Acute vs Chronic thingy . It might be an issue it might not .
This is where the lack of knowledge about T might be in our favour.
Maybe if they come up with a drug or even Retagabine in this case , it might not matter.

In any event , lets not start screaming from the rooftops until a few other people have tried this and we know more.

There is always the change that:
A : It was a fluke .
B: Mpt´s recovery was tied in with how he got T in the first place.
C: Time of onset might matter.

D: We got incredibly lucky and It might be a "cure" ?

 

[RaZaH]

On another note , funny how my T is that much more bearable today now that there is a glimmer of hope.
Goes to show ....having no hope sucks.

 

[Mpt]

I'm not sure about this Acute vs Chronic thingy . It might be an issue it might not .
This is where the lack of knowledge about T might be in our favour.
Maybe if they come up with a drug or even Retagabine in this case , it might not matter.

In any event , lets not start screaming from the rooftops until a few other people have tried this and we know more.

There is always the change that:
A : It was a fluke .
B: Mpt´s recovery was tied in with how he got T in the first place.
C: Time of onset might matter.

D: We got incredibly lucky and It might be a "cure" ?

I agree this might not work for other people, although I really hope it does, but what is not a fluke is that these chemical channels are being researched and targetted for the first time ever-- thats why I think its just a matter of time now, I believe more than ever that the it will never/ can never be cured crowd are wrong