Retigabine (Trobalt, Potiga) — General Discussion

[Hudson]

yea, i'd say that my t has changed. i would have to be off it for a few weeks to really know though. this is all still in the early stages, i think most people need to understand that and not jump to any conclusions just yet.

are you planning on trying this @Hudson?

@undecided , after your two weeks off, did the t go completely back to what it was before your trial? do you have variable t or is there always at least some constant level? your max daily dosage from what i remember was 300mg TID and you were only on that for a week or so right? after your 300mg pill the other night, in the morning did it come back to your normal t level?

since my t is variable, it is hard to answer whether i have permanent change, since there are two dimensions... if i have t or not, and how loud the t is. i feel that i have had improvement in both dimensions. i'll know how much permanent the improvement is in a few weeks.

My psychiatrist back in October was supposed to set up an appointment with for me with a Nuerologist (apparently there was a lot of paperwork for the referral to happen between the two) but she never got back to me about their progress. I'm meeting with her on Monday and I'm planning on asking her about it again.

 

[undecided]

@undecided it is encouraging. Any drug that has any suppression qualities is helpful.
How long would you say it works for?
Do you wake up in the morning after taking it at night and feel it has any residual effect?

For me, RTG always 'works' for 3-4 hours after taking a pill (at least 150-200mg), I believe @RaZaH has a similar experience with 100mg. After that time-frame, my tinnitus goes back to its baseline.
No residual effect after waking up.

Seems that some members here report this. So that after around 45 minutes, T gets silent or much milder. Even if RTG would not cure T, if there is a relief for some hours, this would be helpful. Question would then be, like for every med, how long does this work before becoming addictive? And how much one needs to take (some report here relief with already 100 mg), and of course side effects.

RTG is a weird, weird drug. I'm sure that everyone following this thread must have realized the variability of its side effects and its potential for treating our condition. Some get better, some get a temporary relief, some have no change.

@undecided , after your two weeks off, did the t go completely back to what it was before your trial? do you have variable t or is there always at least some constant level? your max daily dosage from what i remember was 300mg TID and you were only on that for a week or so right? after your 300mg pill the other night, in the morning did it come back to your normal t level?

Yes, my T has gone back to its usual baseline. My T is quite variable, I have good days and 'so-so' days.
I was on 300mg TID for 10-12 days, after that single 300mg pill last night it has gone back to its normal level.

 

[OddV]

@attheedgeofscience is Team Trobolt tracking the age of people's T as one of the dimensions? It almost seems like the older the T, perhaps a different dosage approach might be needed.... So many variables

 

[Christian78]

I spoke with the Brai2n clinic, they were shocked to find out Trobalt helps and they will try it.

I hope Dr. Jan Ost will take things further and give and test their patients with Trobalt, because TT Retigabine effort was a hard failure.

 

[valeri]

I spoke with the Brai2n clinic, they were shocked to find out Trobalt helps and they will try it.

I hope Dr. Jan Ost will take things further and give and test their patients with Trobalt, because TT Retigabine effort was a hard failure.

Christian I think there's a lot of work happening behind the scenes and the whole petition hasn't failed.

I don't know any details but from what I read, team trobalt is working hard and a lot of communication has been done with some very important research people.

I think @attheedgeofscience and @Markku promised an update soon, so don't loose hope my friend, there are people doing their best to move things forward.

Waiting is hard, I know, especially with this crap in our heads!

 

[Steve]

I spoke with the Brai2n clinic, they were shocked to find out Trobalt helps and they will try it.

I hope Dr. Jan Ost will take things further and give and test their patients with Trobalt, because TT Retigabine effort was a hard failure.

As Valeri says, nothing has failed.

We're seeing what we can do but I guess that it's all happening in the background. We'll make sure to update very soon. Trust me though, the trial reporting has not been a waste, it's been incredibly useful and there are people taking notice. We can say properly soon, once we know exactly what's happening with it.

A petition to the ATA is most likely not the best course of action, they have limited funds to help people with tinnitus and even with our data the trial would be speculative so wouldn't be a good use of those funds. Plus it would ultimately be doing the leg work that a big pharma could do.

 

[dan]

I spoke with the Brai2n clinic, they were shocked to find out Trobalt helps and they will try it.

I hope Dr. Jan Ost will take things further and give and test their patients with Trobalt, because TT Retigabine effort was a hard failure.

They will be even more shocked when they see the results.

 

[1MW]

retigabine has no permanent effect. It does not cure T.
For those that have fluctuating T have little effect and only temporal sometimes worsening.
For example to me 200mg does not stop T completely only lower for 2 hours
with lorazepam 1.5mg T can stop completely for 8 hours.
I think the mechanism retigabine works is that enhances GABA action but lower than benzos.
If it has addiction & tolerance such as benzos iam not see some good here because has bad side effects.

 

[Viking]

let loose associations such as ATA. They try to bring the T-gone treatment. It is clear that it is boastful compromises and more desperate than people suffering

 

[Mark662]

I wonder if Valeant, the patent holders of retigabine, know what's been going on here? I am sure they would be in interested

 

[Mo_Mo]

Is @Mpt still on RTG? and the same dose? with his T still diminished?

 

[lapidus]

Is @Mpt still on RTG? and the same dose? with his T still diminished?

No he quit Retigabine a long time ago and is still T free.

 

[amandine]

Is @Mpt still on RTG? and the same dose? with his T still diminished?

As far as we know he is not taking RTG anymore. He was cured of his T completely. This is what he told us,

 

[Dr. Nagler]

As far as we know he is not taking RTG anymore. He was cured of his T completely. This is what he told us,

Correct me if I'm wrong, but as I recall he also said that while he thought RTG may have played a role in that wonderful turn of events, he could not be certain because several other things were going on.

stephen nagler

 

[amandine]

Correct me if I'm wrong, but as I recall he also said that while he thought RTG may have played a role in that wonderful turn of events, he could not be certain because several other things were going on.

Please Dr. Nagler could you clarify this? I have had a look but cant find any reference to @Mpt saying this at all. But of course I havent been able to search everything on his threads. If you are aware and recall any of these other things he said he had going on that will have contributed to his eradication of his T, please would really appreciate that information.
Thanks....

 

[attheedgeofscience]

@Mpt attributed his improvement to the following...

I have no doubt that retigabine is responsible for my initial volume reduction.butto tell you the truth the continued improvement that I have seen in the past couple months-- I'm not sure if its from retigabine (because I am off of it now) or through brain plasticity being able to file away the insignificant sound that I was left with

 

[Dr. Nagler]

Please Dr. Nagler could you clarify this? I have had a look but cant find any reference to @Mpt saying this at all. But of course I havent been able to search everything on his threads. If you are aware and recall any of these other things he said he had going on that will have contributed to his eradication of his T, please would really appreciate that information.
Thanks....

I cannot find the reference off-hand, but I'm pretty sure it's accurate because it made such an impression on me at the time. I don't think he listed what else was going on - only that he couldn't attribute his recovery entirely to the Retigabine.

stephen nagler

 

[amandine]

@Dr. Nagler
thanks for your reply.
@attheedgeofscience
thanks for posting that but surely the brain plasticity was created as a result of taking the RTG in the first place?

 

[Dr. Nagler]

surely the brain plasticity was created as a result of taking the RTG in the first place?

What we know for sure is that Mpt is tons better, which is absolutely fantastic! In fact, best I can tell from his postings, he is cured.

What we do not know is why, how, or exactly what role Retigabine played in it. I think your comment "surely the brain plasticity was created as a result of taking the RTG" is a stretch. You may be right, but the "surely" part is wishful thinking at this point.

Team Trobalt is apparently hard at work behind the scenes. I think we all owe them a debt of gratitude, and I am looking forward to seeing the fruits of their labors.

stephen nagler

 

[RaZaH]

I can say with some certainty that just being able to take the occasional break from T via Retagabine does give you a sense of control which goes a long way towards habituation (coming to terms with T) I can imagine that a prolonged break from T via using Retagabine at a proper doesage for some time could help immensely although Retagabine itself does not cure T , if that makes sense?

Slightly edited for clarity.

 

[amandine]

@RaZaH

Doesnt really make sense as we just dont know and therefore cannot make categorical statements like that - it does or it doesnt 'cure'.

We know that Mpt is pretty much ok now but we are unsure whether it is cos of the Trobalt or any other reason. So maybe its best to lets keep it open in that respect.

I can imagine that a prolonged break via using Retagabine at a proper doesage for some time could help immensely although Retagabine itself does not cure T , if that makes sense?

Sorry maybe I am dumb but no sadly didnt make sense to me. As I am sure that you have a valid and important point to express, any chance you could re word it please?
cos taking breaks from RTG and then restarting is an important issue for many taking this drug...thanks

 

[RaZaH]

Ok, let me try and explain.

I take the occasional 100mg Retagabine.When I do , I get a break.
Just knowing that I can do that has helped me a lot .

Using Retagabine on a more regular basis like some people here are doing could help with habituation simply because you do get some time (a month or two-three) with very low T . This gives you time to breathe and assess your T from a different perspective. Which I can imagine is helpful in the long term.

So, not a cure but might help.... a lot.

 

[Hudson]

Ok, let me try and explain.

I take the occasional 100mg Retagabine.When I do , I get a break.
Just knowing that I can do that has helped me a lot .

Using Retagabine on a more regular basis like some people here are doing could help with habituation simply because you do get some time (a month or two-three) with very low T . This gives you time to breathe and assess your T from a different perspective. Which I can imagine is helpful in the long term.

So, not a cure but might help.... a lot.

Still, the fact that we're sitting here in 2015 talking about drugs which actually have a tangible effect on tinnitus is huge. Back in the day it was "We think maybe lidocaine does? But no one gives a shit because it's a dangerous drug."

 

[Dr. Nagler]

We still do not know whether it is the pharmacological effect of the Retigabine or the placebo effect of the taking of the Retigabine. That's where the studies will be so helpful. I realize that a number of folks here are absolutely convinced that they can tell the difference, but that just goes to show you the power of placebo. We just do not know!

stephen nagler

 

[SoulStation]

I personally feel like I am WAY more stable without RTG . I feel like the whole trial for me was a rollar coaster of ups and downs. I still have a supply but chose to stop almost a month ago. I think loosing control of certain cognative abilitys at higher doses made me appreciate my brain a lot more. I also feel like this drug has potentiall for temporary relief - which is no cure - but something for those who need it and can tolerate it. But it doesn't work for everyone and it needs real studies.

 

[RaZaH]

I agree, and that is why I only take it when I am on the cusp of freaking out.

 

[just1morething]

I agree, and that is why I only take it when I am on the cusp of freaking out.

@RaZaH Do you have many side effects on your occasional 100mg dose of Trobalt?

 

[Steve]

We still do not know whether it is the pharmacological effect of the Retigabine or the placebo effect of the taking of the Retigabine. That's where the studies will be so helpful. I realize that a number of folks here are absolutely convinced that they can tell the difference, but that just goes to show you the power of placebo. We just do not know!

stephen nagler

That's absolutely right.

All we can do here is gather data which can raise interest and hopefully progress to a trial. There are some interesting things and very interesting reports but until it is progressed to a "gold standard" clinical trial it's purely speculative.

I like to think that what we've seen so far can give us confidence that it is not just a placebo effect. However, as has been seen many times in the past, until you test it in a clinical setting you just don't know for sure.

Steve

 

[RaZaH]

@just1morething , not really no. Might not have noticed yet and it will hit me later ?

Btw: If Retagabine is placebo then I have completely lost it , which is entirely possible

 

[just1morething]

@just1morething , not really no. Might not have noticed yet and it will hit me later ?

Btw: If Retagabine is placebo then I have completely lost it , which is entirely possible

Thanks! I may try it on a occasional basis like you if I can get it prescribed.