Retigabine (Trobalt, Potiga) — General Discussion

[locoyeti]

I went to a different doctor today. This doctor syringed my ears in December last year, before I got tinnitus. I was telling him about the past few months. It turns out he has tinnitus too! I told him all about retigabine and he looked it up online and he saw the medical benefit it could have. He gave me a prescription for it! However, it's a very low dose. It says 50mg x30 on it so I think it's a 30 day dose of 50 mg, which isn't high at all unfortunately. He said if it helps in any way, I should go back to him.

Now that I have found a doctor willing to prescribe this to me, does anyone have any advice on how to get on a higher dosage if the drug helps me at all? I'm going to start taking it tomorrow after work and I will post in the user experiences thread.

key is to see how u respond at higher dosages. u want to try it at 600 at least. i would just wait (u would have to calculate this all out), perhaps a week or so to save up the pills for this. then do a fast taper to 600 (maybe others would suggest 300, or 450) at a few days and taper down a bit. thats my advice. i waited a week so that i could taper up faster.

 

[1MW]

Don't "fix" you audiogram because there risk to loose hearing and make the T permanent.

 

[locoyeti]

Don't "fix" you audiogram because there risk to loose hearing and make the T permanent.

Ahem.... i think the birdie was implying that on your audiogram you should try to fake saying that you hear some of the lower frequencies, which might make your audiogram show that you have hearing loss.

 

[rtwombly]

@Christian78 It sounds like you have reached the limit of what Retigabine can do for you at this time and you should consider tapering down. Hopefully you will find that the increase in your tinnitus that you are experiencing is like what Zimichael experienced with his hyperacusis. It went up when he was on the medicine, then went down to its normal level within 8 days of stopping.

Since you had good success for some time, hopefully in your case what you are experiencing is a secondary effect, unrelated to your previous progress. You may be able to taper down and find you have a lower baseline. That is my hope for you, at the least. Please be careful if you are tapering down and do not go too fast; it seems that tapering down rapidly erased any progress Ricardo had made, sadly. For 118 days you had ups and downs, but you did have ups! You know it is possible you can get better. We now know there are two medications that have been invented that could be better than what we are trying. Please keep your hope that we will shortly have more relief.

 

[SteveToHeal]

@Christian78 We now know there are two medications that have been invented that could be better than what we are trying.

Are you referring to AUT00063 and AM102?

 

[Zimichael]

Man a bunch of stuff today...though my comment about "variability is here to stay" does seem warranted.

@attheedgeofscience I remember reading something something about gsk selling their shares in autifony . The autifony website no longer lists them as an investor either. I wonder if you might have some resource to confirm or deny this if you get a chance. I will try to find what ever it was that I read.

Cullen... Could you please try and do this. If GSK has pulled out of Autifony it has some strong relevance to something else being pursued right now. I would appreciate a PM on this if you find the source, or where you got the hint of it even. Thanks much.

Another piece of interesting information, a bit old though, don't know if anyone has posted it before
Activation of voltage-gated KCNQ/Kv7 channels by anticonvulsant retigabine attenuates mechanical allodynia of inflammatory temporomandibular joint in rats

Conclusions: Our findings indicate that central sensitization is involved in inflammatory TMJ pain and
pharmacological intervention for controlling central hyperexcitability by activation of neuronal KCNQ/M-channels may have therapeutic potential for TMDs.

As we know TMJ and tinnitus somehow has relation, the story is getting more interesting

xanaxvictim...Yeah agree with Locoyeti re into the research aspect. Good for you.
Also, anyone with any hint of variability with their T in relation to head or neck or TMJ issues should IMHO absolutely see some specialist who works in that field. Personally I just plain don't "understand" variable tinnitus. I'm not saying it is not real as I'm 100% sure it is as so many on TT have it. It's just foreign to my experience that's all (and what I used to think - that all T was "stable"). If my volume goes up - apart from a short term sound caused spike - it stays up. Solid and stable and unchanging, well except for sound activation (= sound reactive T). Let's leave out the H of this.

So if your T varies all over the place, then before taking Retigabine I would consider if it is TMJ or neck/cervically caused, etc. and check that route first.
If you are taking Retigabine and have variable T, then...darn it. Good luck in your reporting attempts! It could be a real challenge figuring out what the hell is doing what when. But I guess, just keep doing your best to keep us informed.

Probably its time for u to taper down.
@Zimichael experienced the same issue. His t got worst but it dropped down as soon as he started to tapper.

Nogood...I agree that I think it is time for Christian to drop it, but I thought that a while back and the choice of course is his/yours @Christian78. Your T variability is beyond "variability". It sounds absolutely impossible. Best of luck either way though.
And for the record...my Tinnitus did not really get worse on Trobalt it was my Hyperacusis that went up about 50%. Yes the T "piggy-backed" onto that and maybe felt a but louder but it would be hard to conclude that it was not just overlap from the > H. My "sound reactive T" was never given a chance to be 'evaluated' as there was no way I was going to be dumb enough to let myself anywhere near sound that could get close to it's "activation threshold". For clearly obvious reasons!

Best, Zimichael

 

[RaZaH]

My T varies all the time like crazy , through the day , through the week, month etc.
Had silence yesterday , going nuts today.
I could donate my brain to be used as a true random number generator.

 

[theekarwash]

key is to see how u respond at higher dosages. u want to try it at 600 at least. i would just wait (u would have to calculate this all out), perhaps a week or so to save up the pills for this. then do a fast taper to 600 (maybe others would suggest 300, or 450) at a few days and taper down a bit. thats my advice. i waited a week so that i could taper up faster.

I'll see how the prescription comes out, I'm picking it up tomorrow after work. I'll let everyone here know what I decide to do and the outcome of this all. He said he would be willing to prescribe me more at a higher dosage if the smaller one has a positive effect. He said he doesn't believe it will cure anything though, just that when I am taking it, my T should be quieter, which seems to be a trend around here. We'll see how it goes, wish me luck!

 

[1MW]

I have not read all the thread but
iam the thinking the possibility that @Mpt cured of its own and not from trobalt.
I say that because none other who taking trobalt cured and some was more bad than taking trobalt.
Cure is to completely stop T 0db for long time if trobalt stopping T only for some days is not cure.

 

[Martin69]

I have not read all the thread but
iam the thinking the possibility that @Mpt cured of its own and not from trobalt.
I say that because none other who taking trobalt cured and some was more bad than taking trobalt.
Cure is to completely stop T 0db for long time if trobalt stopping T only for some days is not cure.

That's possible. But therefore people here trying to find out.
As far as I remember, Mpt took it for around three months.
He himself was absolutely sure that Trobalt cured him. He went from a 8/10 to a 0/10.
But of course no one would ever know if Trobalt cured him, something else or if it went away on its own.
What we know is that Trobalt seems having a positive effect on T for most.
This is not a double-blind controlled study, but something done by brave, but desperate sufferers.
I guess I will also join this game sooner or later. Still working on this habituation thing.
But I see it as not fair letting others try and we are watching.

 

[rtwombly]

Are you referring to AUT00063 and AM102?

AUT00063 and the derivative of Retigabine that ATEOS posted about previously. Less toxic, more effective, according to the researcher/developer. We should hear more about it in a month or two.

Hopefully in another 12-18 months we'll be looking back on this thread saying, "Those poor folks who only had Retigabine to try! Now we have much better options."

 

[Albertus]

You can try retigabine and if this does not work then wait for other medications. On the other hand I think mixing several drugs including antidepressants with RTG is a mistake. RTG should be taken alone or in any case with natural products (Vit B, Omega 3, etc...). Benzodiazepines and antidepressants can cause tinnitus, for my eg taking antidepressants is like putting out a fire with gasoline . A clear example is mixed GABA with Xanax. My tinnitus is triggered till hell. I personally recommend leaving any drug before trying this . Do not mix .

 

[111]

Another piece of interesting information, a bit old though, don't know if anyone has posted it before
Activation of voltage-gated KCNQ/Kv7 channels by anticonvulsant retigabine attenuates mechanical allodynia of inflammatory temporomandibular joint in rats

Conclusions: Our findings indicate that central sensitization is involved in inflammatory TMJ pain and
pharmacological intervention for controlling central hyperexcitability by activation of neuronal KCNQ/M-channels may have therapeutic potential for TMDs.

As we know TMJ and tinnitus somehow has relation, the story is getting more interesting

You know a thread is getting way too long, so not practical to read, when things start to get repeated, I posted the below link for exacly the same article on page 61 of this thread.

http://www.molecularpain.com/content/6/1/49

 

[Rube]

AUT00063 and the derivative of Retigabine that ATEOS posted about previously. Less toxic, more effective, according to the researcher/developer. We should hear more about it in a month or two.

Hopefully in another 12-18 months we'll be looking back on this thread saying, "Those poor folks who only had Retigabine to try! Now we have much better options."

12-18 months? Just curious how you came up with that timeframe? I certainly hope it's a good guess

 

[dan]

12-18 months? Just curious how you came up with that timeframe? I certainly hope it's a good guess

12-18 months is when phase3 would start for Aut63 and I think many of the restrictions would be lifted and you would get to try the real drug most likely, if you got the placebo.

 

[Danny Boy]

I love you trobalt and I want you now...You're just too good to be true, I can't take my eyes off of you, you'd be like heaven to get ahold of, at last love has arrived, I love you trobalt and if it's quite aright, I need you to warm my night, with silence. Can't take my eyes off of you. Pardon the way that I stare, there's nothing else to compare, you're just too good to be true. Oh, trobalt, now that I found you, stay.

 

[SoulStation]

I love you trobalt and I want you now...You're just too good to be true, I can't take my eyes off of you, you'd be like heaven to get ahold of, at long last love has arrived, I love you trobalt and if it's quite aright, I need you to warm my night, with silence. Can't take my eyes off of you. Pardon the way that I stare, there's nothing else to compare, you're just too good to be true. Oh, trobalt, now that I found you, stay.

Danny you sound high as the sky... But I'm happy to see you are good now bro but I have to say your reactions seem quite manic.

 

[Danny Boy]

Danny you sound high as the sky... But I'm happy to see you are good now bro but I have to say your reactions seem quite manic.

I'm not drunk or anything, just happy! Really freaking happy! Seriously, tinnitus is pure and utter evil and need to be eradicated! Autifony may not cure tinnitus, but it'll lower it to the point where it doesn't bother you.

 

[dan]

I'm not drunk or anything, just happy! Really freaking happy! Seriously, tinnitus is pure and utter evil and need to be eradicated! Autifony may not cure tinnitus, but it'll lower it to the point where it doesn't bother you.

The question is, will Autifony's effect wear off like Trobalt seems to do ???

 

[xanaxvictim]

You can try retigabine and if this does not work then wait for other medications. On the other hand I think mixing several drugs including antidepressants with RTG is a mistake. RTG should be taken alone or in any case with natural products (Vit B, Omega 3, etc...). Benzodiazepines and antidepressants can cause tinnitus, for my eg taking antidepressants is like putting out a fire with gasoline . A clear example is mixed GABA with Xanax. My tinnitus is triggered till hell. I personally recommend leaving any drug before trying this . Do not mix .

I just discovered that my country's drug office lists Xanax as a more dangerous and more restricted material than Trobalt. Trobalt is classified as Part I, First & Third Schedule Poison, while Xanax is classified as Part I, First & Third Schedule Poison & Part I Dangerous Drug. Part I Dangerous Drug means that it is in the same category as Cocaine. F..k, why the hell did my Doctor handed it out like handing out M&Ms? I got T because of this sh.t.

 

[Danny Boy]

The question is, will Autifony's effect wear off like Trobalt seems to do ???

Well, Autifony's drug is more precise and aimed at tinnitus, whilst trobalt isn't.

 

[Christian78]

I need advice for you all so you can send it inbox too:

I dont know did i built resistance/tolerance whatever on trobalt:

1. Do you know can I lose resistance/tolerance?

2. I want to make a brake with trobalt but not to go down 4 months, i want faster stop with it and so how would you go down and how many days to stay from it?

(know that trobalt variate in blood extremely so if you take 300mg at 12 concentration jumpt to 600mg, but stay in bed until 12 next morning you have 200 mg.
that said if you take same dosage and have also on evening 600mg, and dont take dosage 24 h, you have in evening 600 mg, after 8h 300, after 8h 150, and after 8h 75mg, medicine is not stable...)

 

[Christian78]

Well, Autifony's drug is more precise and aimed at tinnitus, whilst trobalt isn't.

May God hear you, and give us mercy, from this life destroyer...

 

[Juan Carlos]

I need advice for you all so you can send it inbox too:

I dont know did i built resistance/tolerance whatever on trobalt:

1. Do you know can I lose resistance/tolerance?

2. I want to make a brake with trobalt but not to go down 4 months, i want faster stop with it and so how would you go down and how many days to stay from it?

(know that trobalt variate in blood extremely so if you take 300mg at 12 concentration jumpt to 600mg, but stay in bed until 12 next morning you have 200 mg.
that said if you take same dosage and have also on evening 600mg, and dont take dosage 24 h, you have in evening 600 mg, after 8h 300, after 8h 150, and after 8h 75mg, medicine is not stable...)

I dont have experience on tapering off but I would follow the prospect: 150mg/day less every week
For sure side effects tend to fade but i dont know if that's because of tolerance and that tolerance will affect the effect on T also (till know i was only tapering up so i cannot know on my experience). maybe some doctor can help on that @Dr. Nagler ?

 

[cullenbohannon]

Cullen... Could you please try and do this. If GSK has pulled out of Autifony it has some strong relevance to something else being pursued right now. I would appreciate a PM on this if you find the source, or where you got the hint of it even. Thanks much.

Ok so i found this press release dated Nov.20, 2014. It says that GSK still retains equity in the company, so apologies if i confused anyone. I most likely got it confused with something else i read.

http://www.autifony.com/publication..._initiation_Press_release_20Nov2014_FINAL.pdf

 

[Zimichael]

Ok so i found this press release dated Nov.20, 2014. It says that GSK still retains equity in the company, so apologies if i confused anyone. I most likely got it confused with something else i read.

http://www.autifony.com/publication..._initiation_Press_release_20Nov2014_FINAL.pdf

Thanks Cullen...Yeah, that was why I was wondering as remember seeing this myself a while back and saying to myself that now we know for sure that GSK is involved! And presumably still is.

Z.

 

[Philemon]

2. I want to make a brake with trobalt but not to go down 4 months, i want faster stop with it and so how would you go down and how many days to stay from it?

I dont have experience on tapering off but I would follow the prospect: 150mg/day less every week

Hey Christian,

I fully agree with Juan Carlos on this : don't taper too fast as it is not advised ... 150mg/day less every week is very close to what @Mpt did (100mg/day less every 5 days) ... i you are still doing 900mg/day, then it would take a bit more than 6 weeks (45 days if i'm correct) and not 4 months ! ... If you really want to fasten a bit the process, maybe an advisable limit would be 100mg/day every four days, so 36 days/5 weeks ... anyway, the manufacturer and FDA/EMA advise to do a taper at least in 3 weeks, but even 3 weeks seems to be too fast IMHO
Hope this helps and keep us posted about your taper down

1. Do you know can I lose resistance/tolerance?

Oh, and i don't know about tolerance, but my intuition would be that if you're off the drugs for several weeks/months, i don't see any reasons why you could not lose it, but i'm just saying ...

 

[john2012]

ive asked dannyboy, but does anybody know of any uk gps happy to prescribe trobalt?

 

[Larry OT]

@sticky

No, not a placebo not a chance . If I will be forced to retract that I will eat my laptop
The correlation between when I take it and when I get a break is too strong..ca 40 min, no doubt.
What remains a question is if I would get the same relief with benzo, I have discussed this with others off board who have experiences with benzo and apparently with a benzo you care less and its not a true reduction.

I took one 100mg 40 min ago and I have 98% silence now. Barely there when I hold my ears , an hour ago it was insane.It will probably last for about 2 hours .At the very least its a clue for further research.

RaZaH,
Can you get this effect as needed by only taking drug during a spike?
Does it seem like T is suppressed while drug is in effect then you need a dose just two hours later?

 

[xanaxvictim]

I just informed my Otoneurologist (top T expert in my country and director of rTMS clinical trial in a local University) about the AUT 00063 trial, surprised that he had never heard of the Autifony trial but he seems to be interested and he will be gathering some info from his friends (even though it won't be possible for me to get in because I don't have hearing loss). Maybe I will also touch on issues regarding Retigabine and Kv7 channel openers during my next appointment, to see if it's possible for his research team to investigate the possibility of a small scale Retigabine pilot study in my country. That's all I can do now, hoping that he might somehow be interested. I will also mention Retigabine to my family Dr. and a neurologist I'm going to see, hoping that I can return with some positive news.