Retigabine (Trobalt, Potiga) — General Discussion

[Karl28]

I asked my Australian doctor today about Retigabine and getting it from overseas since its not in Australia.

He reckons its bad and I shouldnt take it because its not tested and not regulated here in Australia and therefor not safe as "anything could be really in it" since it wouldnt be upto our standards.

He said if I was desperate to try some epilepsy medicine I should just take the Australian equivalent of Retigabine, whatever that is but I dont like the sound of that....

 

[valeri]

He reckons its bad and I shouldnt take it because its not tested and not regulated here in Australia and therefor not safe as "anything could be really in it" since it wouldnt be upto our standards.

Whose standard? Australian?

It's made by GSK so it's not that its been manufactured in someone's shed!!!

 

[DebInAustralia]

Karl,

What I would do is this:

if you are really keen on trying retigabine, seek out another dr, but this time armed with the printed proof of members testimonials, to approach them about appealing to GSK to provide this drug to you on compassionate grounds.

I believe from speaking to another Australian that this is a possibility.

so, get a gp on side, and give that a go?

Just a thought.......

 

[nills]

I asked my Australian doctor today about Retigabine and getting it from overseas since its not in Australia.

He reckons its bad and I shouldnt take it because its not tested and not regulated here in Australia and therefor not safe as "anything could be really in it" since it wouldnt be upto our standards.

He said if I was desperate to try some epilepsy medicine I should just take the Australian equivalent of Retigabine, whatever that is but I dont like the sound of that....

well you can always try taking the equivalnt ... why not? I wondet though if anything works like rtg ...

and RTG is bad in many ways ... it is on europe`s blacklist .. so your Dr is actually stating the consensus.

 

[attheedgeofscience]

Others may already have spotted this, but it appears our Retigabine trial on TT has been picked up by some in the academic community, who are calling for a small clinical trial to test its effectiveness with tinnitus:

http://www.ncbi.nlm.nih.gov/m/pubmed/26609769/?i=1&from=tinnitus

Perhaps we should get in touch and offer to help by crowd funding though TT, and other organisations, BTA, etc.?

The article is the final output from the initial manuscript submitted earlier this year and which has since seen several revisions (and for which several members of TinnitusTalk were originally co-authors):

www.tinnitustalk.com/threads/retigabine-trobalt-potiga-%E2%80%94-petition-to-the-ata.6896/page-7#post-95890

 

[linearb]

It's made by GSK so it's not that its been manufactured in someone's shed!!!

I think that statement was a more general indictment of drugs "available online". RTG manufactured by GSK, will always be pure RTG. However, drugs bought over the internet which claim to be GSK manufactured RTG, very well may not be -- there are numerous documented cases of counterfeit epilepsy, AD, etc drugs showing up in online markets.

Unless you have a mass spectrometer, there's literally no way to know what's in a drug if it didn't come from a legitimate, registered pharmacy.

 

[Lloyd Carter]

Question... if this drug really does anything (which I would like to think all the testimony on TT proves it does), why aren't all the epileptics on Trobalt that also happen to have T (which is 20% of them) going to their doctors and raving about their T levels lowering?

 

[Mark662]

Question... if this drug really does anything (which I would like to think all the testimony on TT proves it does), why aren't all the epileptics on Trobalt that also happen to have T (which is 20% of them) going to their doctors and raving about their T levels lowering?

Retigabine skeptic, Dr Nagler, asked this very same question. I can only guess it's because this drug has "hit or miss" action.

 

[GrosBalou]

I think we would need more data on this,

How many epileptic patients has a neurologist ?
How many patients among these are taking trobalt ?
Then again, only one in five of those is supposed to have tinnitus. Mild ? Moderate ? Loud ? Some of them who are having it mild to moderate could not report the changes.

Also, other anti-epileptic drugs could have an effect on tinnitus. When switching to trobalt, you could not perceive much difference.

My point being, one doctor might have a few patients using trobalt. I don't think he would be able to associate trobalt to tinnitus reduction since there would be very few reports.

Finally, I have a friend who has brain disorders (tinnitus being one of them). He's taking anti-epileptic drugs but tinnitus is far from being his number one problem (seems to be at least moderate one, he hears it in loud places although he habituated to it) . He probably wouldn't report any improvement related to Tinnitus.

 

[RaZaH]

Question... if this drug really does anything (which I would like to think all the testimony on TT proves it does), why aren't all the epileptics on Trobalt that also happen to have T (which is 20% of them) going to their doctors and raving about their T levels lowering?

Who says they dont ? Since when have Doctors listened to their patients ?

 

[papu]

Question... if this drug really does anything (which I would like to think all the testimony on TT proves it does), why aren't all the epileptics on Trobalt that also happen to have T (which is 20% of them) going to their doctors and raving about their T levels lowering?

They are probably not members in this forum.
At least i have not heard from a single member here say hi guys i have tinnitus and also epileptic.

plus they might not even be taking trobalt in their treatment for epilepsy

 

[LetyO]

@papu How long were you on Trobalt 200mg before you increased to 300mg TID. Sorry having a hard time focusing to read User experiences right now. I had a spike after 4 days of 0 to near silence so I increased to 300mg TID (I don't have anymore 50mg tabs and these are not meant to be split if not scored - not evenly distributed in the pill). I am pretty much back to baseline with days of spikes then back to where I was before. I find that I tolerate the T than before. So back to baseline. I am going to discontue Gabapentin because the sedation with both is profound - even when I separate the dose. Also did you have a positive response after beeng on the 200mg before you transitioned to the higher dose? Thanks. I'm trying not to get too discouraged

 

[linearb]

They are probably not members in this forum.
At least i have not heard from a single member here say hi guys i have tinnitus and also epileptic.

plus they might not even be taking trobalt in their treatment for epilepsy

no, this is a reasonable line of inquiry. 1% of the population has epilepsy; 15% of the population has tinnitus, therefore 1 out of 7 epileptics probably has tinnitus, and the total population in the US of people with both conditions is a half a million or more.

Hence, if this really worked gangbusters for a significant amount of people -- someone would have noticed, you know, like they did in the case of deep brain implantation.

 

[papu]

therefore 1 out of 7 epileptics probably has tinnitus

Its more probable that the one that has tinnitus its not taking trobalt since its not a first line of treatment for epilepsy and even now less since its been as you yourself quoted branded black label. Although i do not have that fact the percentage of epileptics taking trobalt in the general population must be very low.

I value your input its fun to have a debate although my part is based in intuiton not in real facts.

 

[RaZaH]

In Iceland there are 3 people taking Trobalt , me included.

 

[Bertman]

I wish I could try trobalt.. No way I'd be able to get it in Canada though

 

[LetyO]

wish I could try trobalt.. No way I'd be able to get it in Canada though

Why is that? I get my prescription from Canadian pharmacies? Is it that you can't get a Rx from a doctor?

 

[Atlantis]

A thought: has anyone experimented taking 10 or more grams of Trobalt at once? What if it zapped the tinnitus?

 

[markoana]

A thought: has anyone experimented taking 10 or more grams of Trobalt at once? What if it zapped the tinnitus?

Who is gonna be guinea pig for that...I suppose there is some percent of possibillity that kind of chemistry shock could reset the brain...but it sound risky at least..

 

[uae96]

Trobalt on the way

 

[Bertman]

Why is that? I get my prescription from Canadian pharmacies? Is it that you can't get a Rx from a doctor?

I thought I read posts before that it wasn't available in Canada

 

[Danny Boy]

I thought I read posts before that it wasn't available in Canada

I heard that too. Maybe it's changed?

 

[Bertman]

I heard that too. Maybe it's changed?

I doubt it. I think you can order it from Canada, but it's not available for prescription here. My guess anyways

 

[Danny Boy]

I doubt it. I think you can order it from Canada, but it's not available for prescription here. My guess anyways

Makes sense. Well, I thought it got taken off the market over there, same with Germany.

 

[Bertman]

How are ya doing these days @Danny Boy. Back on trobalt?

 

[Danny Boy]

How are ya doing these days @Danny Boy. Back on trobalt?

I'm clean, totally. Gosh, I sound like a drug addict, I'm not really. Withdrawal really was, I didn't feel the urge to eat for a few days.

 

[valeri]

I'm clean, totally. Gosh, I sound like a drug addict, I'm not really. Withdrawal really was, I didn't feel the urge to eat for a few days.

Danny can you please be a little clearer?
How's your t?

 

[Danny Boy]

Danny can you please be a little clearer?
How's your t?

It's low. I'd say 1-2. I feel so lucky to have come this far...It was a journey that's for sure.

 

[valeri]

It's low. I'd say 1-2. I feel so lucky to have come this far...It was a journey that's for sure.

Good news!
So you're off Trobalt now for how long?

 

[Danny Boy]

Good news!
So you're off Trobalt now for how long?

Few weeks and thank you ^_^.