Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

@Juan Carlos !!!

Can you find out for me please, if they would sell a non-starter pack (regular box) - without prescription.

I think they will gladly break the law if the buyer was an Americano who is going back to their home country tomorrow.

Wrong, pharmacy does not care who is buyer, can be from Mars. When pharmacy take drugs they are responsible for drugs, they have 10 trobalts, on list, and they have to give 10 prescriptions for it and to whom they sold it. If they do it like that they committed criminal act and we be held responsible affront a law as drug smuggler. They will lose licence, their pharmacist will lose licence to sell it and so goes away studies (diploma)etc.

If course for one that can say someone stole, but for 6 boxes well not, at least not in legal country's, 3rd would countries don't have a law.

 

[Christian78]

Juan Carlos was wondering about tapering off Retigabine, whether it is safe for people who don't have epilepsy. The alternatives are to taper off gradually or come off cold turkey, but epileptic are warned strongly not to do that, since you can have "rebound seizures". For people without epilepsy, it's one of those things that maybe it won't do anything bad...maybe it will do something absolutely awful. Unless we get some doctors on here that say it's no danger, I don't think anybody should try going cold turkey.

well at least take it slwoly give it 7 days
go dosage reduction if you dont have 50 pills...

like
300+300+300...
300+200+300...
200+200+300..
200+200+200...
200+100+200...
100+100+200...
100+100+100.
100+0+100
0+0+100
0

 

[Christian78]

Viking said in flupirtine thread that he had kidney problems with trobalt, i dont remember if said in this thread also. Any advice to avoid this problem? Should we all drink loooots of water while we are on trobalt? Any other advice about that?
I will be traveling for four days, wish u all the best
@Danny Boy are u there? How is it going?

well at least take it slwoly give it 7 days
go dosage reduction if you dont have 50 pills...

like
300+300+300...
300+200+300...
200+200+300..
200+200+200...
200+100+200...
100+100+200...
100+100+100.
100+0+100
0+0+100
0

45 pills

 

[Danny Boy]

well at least take it slwoly give it 7 days
go dosage reduction if you dont have 50 pills...

like
300+300+300...
300+200+300...
200+200+300..
200+200+200...
200+100+200...
100+100+200...
100+100+100.
100+0+100
0+0+100
0

45 pills

Are you gonna go up to 1200mg?

 

[amandine]

@Danny Boy

Glad to see you back. I and others have been worried about you....Have you started with this trobalt yet as I understand that you had some difficulties at first and wondered if you were continuing.
Be well danny and good to hear from you...

 

[Danny Boy]

@Danny Boy

Glad to see you back. I and others have been worried about you....Have you started with this trobalt yet as I understand that you had some difficulties at first and wondered if you were continuing.
Be well danny and good to hear from you...

Yep, I'm back on the trobalt. I need to really, otherwise T will kill me.

 

[amandine]

@Danny Boy

thanks for getting back so quickly.
How is it now with the trobalt? U okay with it?
Can you open your skype pls? Would like to have a chat with you if possible...

 

[Danny Boy]

@Danny Boy

thanks for getting back so quickly.
How is it now with the trobalt? U okay with it?
Can you open your skype pls? Would like to have a chat with you if possible...

Can't go on skype at the moment, I will later. I will say, trobalt does seem to hurt my eyes...So I suspect that it is toxic to the eyes. But I have no choice really, my tinnitus was too much to bare, so I guess I'll have to take the risk.

 

[Danny Boy]

Anyway, i took 3x 100mg a day and the sound is way lower...I'd say about 40% if not lower. I'm guessing this stuff works better on people who've had tinnitus for less than 6 months. But seriously, at the moment, I have mild tinnitus because of trobalt and I can see why people with mild tinnitus don't moan about it.

 

[RaZaH]

yes , on my good days , with mild T ..I could see myself just moving on if it stayed that way .
But it does not..so.

 

[Danny Boy]

Hopefully after a few months on trobalt I can be cured. Anyway, all tribal shows is how underfuned. Autifony will be the cure for sure. Still Auris might go out of business as AM-101 will be pointless.

 

[preslys]

hi danny
telle me where can I buy trobalt ?Iwant to try it

 

[Zimichael]

Dear current trialees...I am getting a bit lost here (apologies, as other issues clouding my clarity), as to who exactly is still on Trobalt and at what doses. I realize doses are going to be variable, but there are a number of people with no "User Reports".
As things are getting very obvious now that the Kv channels are no longer a "theory" regarding tinnitus impact, this information we are gathering is highly significant. Thus the more accurate this info the better.

So my possibly incomplete, and probably inaccurate, list of TRIALEES:

- Mpt... Stopped (Possibly "Cured").
- Viking... Stopped.
- Hengist... Stopped.
- Zimichael... Stopped.
- Bogdan... Status please???
- Lep... Status please??? I think you are at 300 mg/day total as more than that blows you away?
- Soustation... Status please??? I think you are still taking it at 300 mg/day total to complete 1 month at that dose?
~ Johno... Active, at 300 mg/day total.
~ Christian... Active, at somewhat variable doses but averaging around 750-900 mg/day total.
~ Freddie... Active, but no idea what dose?
~ Locoyeti... Active, at 900 mg/day total.
~ Undecided... Active, but reduced from 900 mg/day total to maybe 600 mg/day total, or...???
~ Danny Boy... Active, potentially holding at 300 mg/day total to assess.
~ NGC891... Active, just starting and no info on dose or 'taper up' plan I can find.
~ Juan Carlos... Active, just starting, at 250 mg/day total. Intending to increase in few days.
~ Philemon... Active, at 300 mg/day total and upping to 600 mg/day total, etc. shortly.

* Martin69... are you taking Trobalt??? I can't quite tell from past posts, sorry.
*Anyone else on it or about to take it in next few days as have it in hand?

NOTE: Please, I am not trying to be "pushy" here, just trying to get clearer information. If anyone does not want to release information on what they are doing as per this request, please ignore!
Also, it appears that FIVE people have had very definite, objective improvements in their tinnitus, and a couple of others 'maybe' or too soon to tell. This is VERY SIGNIFICANT DATA!

Thank you all... Zimichael

 

[sticky]

Very interesting! Fingers crossed for everyone

 

[RaZaH]

Finally ! It went through , getting this next week !!

 

[undecided]

@Zimichael

I'm still at 900mg per day. The previous 2-3 days were damn good but today it was kinda loud.
Not giving up though. We'll see how it goes this weekend.

 

[Martin69]

Dear current trialees...I am getting a bit lost here (apologies, as other issues clouding my clarity), as to who exactly is still on Trobalt and at what doses. I realize doses are going to be variable, but there are a number of people with no "User Reports".
As things are getting very obvious now that the Kv channels are no longer a "theory" regarding tinnitus impact, this information we are gathering is highly significant. Thus the more accurate this info the better.

So my possibly incomplete, and probably inaccurate, list of TRIALEES:

- Mpt... Stopped (Possibly "Cured").
- Viking... Stopped.
- Hengist... Stopped.
- Zimichael... Stopped.
- Bogdan... Status please???
- Lep... Status please??? I think you are at 300 mg/day total as more than that blows you away?
- Soustation... Status please??? I think you are still taking it at 300 mg/day total to complete 1 month at that dose?
~ Johno... Active, at 300 mg/day total.
~ Christian... Active, at somewhat variable doses but averaging around 750-900 mg/day total.
~ Freddie... Active, but no idea what dose?
~ Locoyeti... Active, at 900 mg/day total.
~ Undecided... Active, but reduced from 900 mg/day total to maybe 600 mg/day total, or...???
~ Danny Boy... Active, potentially holding at 300 mg/day total to assess.
~ NGC891... Active, just starting and no info on dose or 'taper up' plan I can find.
~ Juan Carlos... Active, just starting and no info on 'taper up' plan I can find.

* Martin69... are you taking Trobalt??? I can't quite tell from past posts, sorry.
*Anyone else on it or about to take it in next few days as have it in hand?

NOTE: Please, I am not trying to be "pushy" here, just trying to get clearer information. If anyone does not want to release information on what they are doing as per this request, please ignore!
Also, it appears that FIVE people have had very definite, objective improvements in their tinnitus, and a couple of others 'maybe' or too soon to tell. This is VERY SIGNIFICANT DATA!

Thank you all... Zimichael

@Zimichael
From what I can see we have some members who have a decrease.
And some more who will take it soon.

I don't take it since not available in Germany. :-(
Had some little bit milder days behind me (first time in about 13 months).
My T is today full force, 2-3 high-pitched tones, loud, oscillating.
Today, I would take any pill you would give me.

I know someone who made vacation in Spain four weeks ago.
If I would have known it is so easy getting it there, I would have asked him.
Since Autifony is still slow with phase 2, Trobalt seems being the only option we have - besides habituation.

 

[Zimichael]

@Zimichael

I'm still at 900mg per day. The previous 2-3 days were damn good but today it was kinda loud.
Not giving up though. We'll see how it goes this weekend.

Thanks much for clarification...You are also super good at updating your User Reports.

 

[Danny Boy]

Just been on Autifony's page...It looks like they are a corporate member of the BTA now...I don't know if this is good or bad news...

 

[lapidus]

Finally ! It went through , getting this next week !!

Saw in the Naltrexone thread that you have started that too. You gonna quit Naltrexone before trying Trobalt?

 

[SoulStation]

hi danny
telle me where can I buy trobalt ?Iwant to try it

Dude read the thread.

 

[RaZaH]

@lapidus , yes , I will quit the LDN before I try this.

 

[john2012]

were all grateful to mpt for this thread
his T has been effectively cured by retigabine
but his T was only about 20 weeks old
has any long-termer come close to replicating this success?

or, has ANYONE come close?
any other encouraging success stories so far?

 

[SoulStation]

were all grateful to mpt for this thread
his T has been effectively cured by retigabine
but his T was only about 20 weeks old
has any long-termer come close to replicating this success?

No

 

[RaZaH]

I am not sure if any long termer has had the time for Retagabine for two months ? Am I wrong ?

 

[RaZaH]

Obviously , for a drug that affects your ears , there is always the issue of whether it will mess with your hearing , so I will monitor my hearing during Retagabine . I have the proper gear to do that "professionally , actually better then most dr's. Will report.

 

[SoulStation]

Has anyone thought that maybe the reason why this thread is so crazy and "hopeful" is because this med hasn't been "disproved" yet to be scientifically effective yet with a double blind study (as opposed to most other meds on this board)?

 

[valeri]

@Dr. Nagler

I know you have no opinion on this drug but from your long term medical experience has there ever been a drug in the past that had any positive effects on tinnitus?

I know this one is still very unproven but it still has some positive results.

 

[Dr. Nagler]

@Dr. Nagler

I know you have no opinion on this drug but from your long term medical experience has there ever been a drug in the past that had any positive effects on tinnitus?

If you mean have there been any scientifically reliable and verifiable studies demonstrating any sort of positive effect of any drug at all on tinnitus, the answer is No. (The "scientifically reliable and verifiable" standard is the standard used by the FDA. It means that a double-blind randomized prospective study with sound methodology has demonstrated statistically greater positive effect than placebo and that the results have been independently replicated. Thousands upon thousands of drugs have met that standard over the years for all sorts of maladies, but to the best of my knowledge no drug has yet met that standard for tinnitus.)

I know this one [Retigabine] is still very unproven but it still has some positive results.

I do not want to rain on anybody's parade here, but many many drugs have had "some positive results" in terms of tinnitus. Retigabine has a lot of company in that regard. Will Retigabine be the very first drug ever to meet the well-established standard for efficacy I just referred to? I'm not holding my breath on that one. The historical odds are against it. Would I like to be wrong? Of course! And here's hoping I am.

Dr. Stephen Nagler

 

[valeri]

@Dr. Nagler

Thank you for your answer.

So the results we are seeing here are not unheard of or something to rave about?