Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

wich side effects are you refering? i am tapering off, now only 100x3 and i dont feel any of them.
I was thinking, i can do a 3 month treatment every year as it seemed to do some permanent improvement.
BTW i also had residual inhibition withouth trobalt too but surely with trobalt is way better and longer

I tryed to get of and i got parestesias, they now are mostly gone but i have hard time to get of 200mg becouse i get them again and also i have all king of pains in hands and legs, all tendrons, it is like oversensitive neurones, all blood tests are ok and the only possibility is CNS

 

[Juan Carlos]

I tryed to get of and i got parestesias, they now are mostly gone but i have hard time to get of 200mg becouse i get them again and also i have all king of pains in hands and legs, all tendrons, it is like oversensitive neurones, all blood tests are ok and the only possibility is CNS

I also got a little of parestesia when I jumped from 900 to 600 directly (I shouldn't do that) but now i dont have it

the H also came a little when did that jump down but definetly is NOT like before Trobalt
I think and really hope it will go away soon from u

this week im on 300/day, next 200 other 100, I think slow taper off is much more important than a slow taper up

 

[thesaint]

Hey all you retigabine trialers how about an update. Some info on who's off the drug and how they're feeling now would be good to know and also those that have just started, how is it going for them. Thanks!!!

 

[locoyeti]

off it almost 2 months. still going good, although ive had a few bad days in the last few weeks. id say ive had a total of 7 bad days out of the last 2 months which is pretty good. hoping for better improvement, i think the drug has primed me for habituation, as ive said before and others have confirmed. on my good days it is near silence with zero H and i am perfectly normal. on those few bad days i get the purified high pitch tone with slight H and it sounds a bit strange being so purified, also since my good days are so close to near silence, the contrast is much greater with the bad days and it has been a bit jarring. but i am getting used to it and it is bothering me less.

anyway i see that one of tzounopolos' new papers has come out, but i don't think it is the one with the new retigabine drug. the paper is here but it only has the abstract, so if anyone can get access to it and share that would be great.
http://www.jneurosci.org/content/35/7/3112.short
this paper according to the abstract doesnt seem like it has anything to do with the new compound but its possible they may have used it in the experiment. can anyone give any info on this paper or an update on the compound (Team Trobalt?).

 

[Rube]

off it almost 2 months. still going good, although ive had a few bad days in the last few weeks. id say ive had a total of 7 bad days out of the last 2 months which is pretty good. hoping for better improvement, i think the drug has primed me for habituation, as ive said before and others have confirmed. on my good days it is near silence with zero H and i am perfectly normal. on those few bad days i get the purified high pitch tone with slight H and it sounds a bit strange being so purified, also since my good days are so close to near silence, the contrast is much greater with the bad days and it has been a bit jarring. but i am getting used to it and it is bothering me less.

anyway i see that one of tzounopolos' new papers has come out, but i don't think it is the one with the new retigabine drug. the paper is here but it only has the abstract, so if anyone can get access to it and share that would be great.
http://www.jneurosci.org/content/35/7/3112.short
this paper according to the abstract doesnt seem like it has anything to do with the new compound but its possible they may have used it in the experiment. can anyone give any info on this paper or an update on the compound (Team Trobalt?).

I'm happy for you @locoyeti
Regarding your bad days, did you try to see if anything dietary or maybe outside noise caused the bad days?

 

[thesaint]

@locoyeti What awesome news!!!! So happy for you. Thanks for the update.

 

[DebInAustralia]

Sorry for my ignorance, but is retigabine available in the states?

i have a friend from California who is interested in trialling it?

thanks

 

[nills]

Sorry for my ignorance, but is retigabine available in the states?

i have a friend from California who is interested in trialling it?

thanks

Yes Deb, it is called Potiga.

Potiga (ezogabine) US, known as Trobalt (retigabine) outside the US, has been approved as an adjunctive treatment of partial-onset seizures ...

check the first page of this thread. It has some info on it.

x

 

[DebInAustralia]

Hi Nills,

we meet again..LOL

did you mean that retigabine is available in the states currently?

 

[nills]

I feel I could reply to your question by copy pasting my previous one. Yes, it is called Potiga. Retigabine and ezogabine are same same ... but different

 

[amandine]

did you mean that retigabine is available in the states currently?

it is available in the states and is massively expensive too in the states unless insurance pay for it which is hopeful but maybe doubtful...........
it is available also thru canadian pharmacy on line but it is really expensive there too
more expensive in the states than in canada...
it is highly dangerous and can cause all sorts of problems so be careful....
Christian has now numerous neuro problems which may or may not be due to the Trobalt/Potiga/Retigabene that he took.
Need to check eyes and kidney function before use and during use.
It is not something to be trialled lightly.......just to give it a go.....it is a black flag drug due to its side effects..........just saying debs is all.........

@Nils.....sorry hope you dont mind me muscling in on your postings with deb....how are you by the way nils?

 

[nills]

a box of 50mg 84pills is 24 euro or 27 dollars here in Belgium. I didn`t count how far it goes, but seems an ok price.

 

[DebInAustralia]

Thanks Nills. Im aware of the different trade names for this drug. that wasn't my question. But thanks all the same.

Thanks Amandine. I will pass on this info to my friend. Side effects noted. X

 

[amandine]

a box of 50mg 84pills is 24 euro or 27 dollars here in Belgium. I didn`t count how far it goes, but seems an ok price.

That seems to be a good price Nils and certainly cheaper than some members have been paying for it.
Seems that 900 mg or 1200 mg is the desired dose per day once tapered up to kick it into touch although of course some have used less than that too. Then after the required months using it then is the taper down. So you can do the maths.......
Seems that danny boy for example uses about 2 boxes a month of 100 mg x 84 pills...but he is on 1200mg a day at 400 mg each time x 3 so 36000mgs a month......but Juan Carlos has been using less I think and dont know how much locoyeti has been using but his seems to be permanently lowered by it even once he is off it entirely.

 

[1MW]

i have serious problem to obtain this drug from europe.
Any online european pharmacy witch accept electronic prescription ?
(dan sold out)
thank you!

 

[Dennis Skoglund]

Hi all.

thanks for intressant reading. Are there any of you who come from Denmark, and know where I can buy it?

Sorry for my bad English...

 

[Moha94]

Im French of Paris, i have 200mg Trobalt unlimited thanks to my best friend because he has buisness of trobalt

 

[Mo_Mo]

@Moha94 have you started taking it?

 

[Christian78]

I got this new t level and i think i will not survive it. I am almost sure i will not, this is second time it got worse. Somehow only that trobalt keeps me in life...

 

[1MW]

@Christian78 how you got T ? from what acoustic trauma and what meds ?

 

[Moha94]

Yes i begin trobalt with 50×3 ! One question with 50×3 is there a risk floaters eyes or no riisk because i don't have a floaters Eyes ?

 

[amandine]

Yes i begin trobalt with 50×3 ! One question with 50×3 is there a risk floaters eyes or no riisk because i don't have a floaters Eyes ?

50mg is a very low dose so not much risk.
However, with this drug there is a risk always although I would think that you would be safe with such a low dose. Other people have taken it and had no problems at all and some have had a few problems.
I dont think that anyone has reported floaters though. Some have reported getting blurred vision but it cleared up afterwards.

 

[Christian78]

@Christian78 how you got T ? from what acoustic trauma and what meds ?

was and automatic guns few times as teen, but then tinnitus started with sep 2013 with medicine, wellbumentrin, eritromicin, iboprofen couse second worsening, and last i dotn know... i dont know why and what and where i just know IT IS

 

[DebInAustralia]

This may have already been posted..

But in case it hasn't, I have had email contact with Thanos Tzounopoulos, whom many of you are familiar with because of his work with retigabine and epilepsy. He said that his team have developed and tested a novel compound, that is a more specific KV7.2/3 (KCNQ2/3) activator, that works much better than retigabine for both epilepsy and tinnitus, with less side effects. The results of this study are going to be published soon. He is hopeful that this new compound will proceed to clinical trials.

 

[Rube]

This may have already been posted..

But in case it hasn't, I have had email contact with Thanos Tzounopoulos, whom many of you are familiar with because of his work with retigabine and epilepsy. He said that his team have developed and tested a novel compound, that is a more specific KV7.2/3 (KCNQ2/3) activator, that works much better than retigabine for both epilepsy and tinnitus, with less side effects. The results of this study are going to be published soon. He is hopeful that this new compound will proceed to clinical trials.

Good news! Thanks for the info. Someone has to eventually have a break through.

 

[marqualler]

This may have already been posted..

But in case it hasn't, I have had email contact with Thanos Tzounopoulos, whom many of you are familiar with because of his work with retigabine and epilepsy. He said that his team have developed and tested a novel compound, that is a more specific KV7.2/3 (KCNQ2/3) activator, that works much better than retigabine for both epilepsy and tinnitus, with less side effects. The results of this study are going to be published soon. He is hopeful that this new compound will proceed to clinical trials.

That is a great tidbit of information. Thanks Deb! That is the same guy that @attheedgeofscience has been talking about, I believe.

 

[Stink]

This may have already been posted..

But in case it hasn't, I have had email contact with Thanos Tzounopoulos, whom many of you are familiar with because of his work with retigabine and epilepsy. He said that his team have developed and tested a novel compound, that is a more specific KV7.2/3 (KCNQ2/3) activator, that works much better than retigabine for both epilepsy and tinnitus, with less side effects. The results of this study are going to be published soon. He is hopeful that this new compound will proceed to clinical trials.

when are the results released? did he tell you anything more?

 

[DebInAustralia]

No..he said results will be published soon. I can ask him if you like

 

[Philemon]

This may have already been posted..

But in case it hasn't, I have had email contact with Thanos Tzounopoulos, whom many of you are familiar with because of his work with retigabine and epilepsy. He said that his team have developed and tested a novel compound, that is a more specific KV7.2/3 (KCNQ2/3) activator, that works much better than retigabine for both epilepsy and tinnitus, with less side effects. The results of this study are going to be published soon. He is hopeful that this new compound will proceed to clinical trials.

Thanks for the info ;-)
Did Thanos Tzounopoulos tell you how they tested this new compound ? 'pharmalogical' tests (if that means something) or animal studies (preclinical) or a phase 0 on human (like here : http://en.wikipedia.org/wiki/Phases_of_clinical_research) ? And did he tell you why he thinks their new compound could work better than retigabine ?
Sorry if it's too much questions and thanks again anyway.

Just a quick update : it makes now 10 days that i've stopped trobalt, and T reduction that i got from trobalt is still lasting, i'm still on the same pattern than while i was using it, which means 3-4 good days and 1-2 days a bit more bothersome ... but anyway my T is still quite better than before i started using this drug

 

[nills]

This may have already been posted..

But in case it hasn't, I have had email contact with Thanos Tzounopoulos, whom many of you are familiar with because of his work with retigabine and epilepsy. He said that his team have developed and tested a novel compound, that is a more specific KV7.2/3 (KCNQ2/3) activator, that works much better than retigabine for both epilepsy and tinnitus, with less side effects. The results of this study are going to be published soon. He is hopeful that this new compound will proceed to clinical trials.

Thanks for the info ;-)
Did Thanos Tzounopoulos tell you how they tested this new compound ? 'pharmalogical' tests (if that means something) or animal studies (preclinical) or a phase 0 on human (like here : http://en.wikipedia.org/wiki/Phases_of_clinical_research) ? And did he tell you why he thinks their new compound could work better than retigabine ?
Sorry if it's too much questions and thanks again anyway.

Just a quick update : it makes now 10 days that i've stopped trobalt, and T reduction that i got from trobalt is still lasting, i'm still on the same pattern than while i was using it, which means 3-4 good days and 1-2 days a bit more bothersome ... but anyway my T is still quite better than before i started using this drug

hey Philemon,

Check this thread here ; https://www.tinnitustalk.com/threads/prof-tzounopoulos-university-of-pittsburgh.8280/#post-97928 I posted some videos and I think you`ll have some info you look for. I suspect they are cleaning up the compounds to target more specifically the sites they want to influence after having discovered what really is going on with these potassium channels. Truly I don`t know what would cause side effects and how it is possible to illiminate them more from a compound addressing similar receptor site. It is probably getting rid of some atoms that really don`t matter but do influence effects on the brain ... imagine having a compound with to many oxygen atoms ... it could be very dangerous because if these oxigen atoms raom freely in our brain they can destroy other cells ... hence they say we need anti-oxidants to stay young. Cause an anti oxidant removes a single oxigen atom from the body that is trying to connect to cells but can`t because he does not have 2 oxigen atoms and thus doesn`t fit the puzzle. Anyone can give some backup on my thoughts on this. @benryu

And great to hear your results form Trobalt! ... This drug is really revolutionizing Tinnitus history ... specially the pioneers trying it out ... I`ll be starting soon, have to wait a bit more untill I see my neurologist on the 18th ... that will be my starting date!