Retigabine (Trobalt, Potiga) — General Discussion

[preslys]

@preslys Yes lol, my wife did the thing you should never do and that is read the leaflet, she is not a big fan of Trobalt, but than again, she does not have T either.

she does not know how you are suffering ,if she is in your case she will take all kind of epilepsy drug.

 

[Lloyd Carter]

@Danny Boy Why do you think Trobalt cured permanently and not Keppra?

 

[linearb]

@Danny Boy Why do you think Trobalt cured permanently and not Keppra?

we need to keep in mind that the timeframe in which Danny experienced significant healing is the timeframe during which a majority of people who get tinnitus following ear trauma experience significant healing without taking any drugs at all.

 

[Bart]

she does not know how you are suffering ,if she is in your case she will take all kind of epilepsy drug.

I am not really suffering anymore, it is just those random spikes and bad days that are annoying, I pretty much learned to live with it.

But I got these pills and I keep hearing good things about it that I am willing to give it a try now that I am still within a reasonable time frame so I do not have to blame myself in a couple of years for not trying everything.

Habituation is good, but less t or no t is better !

Anyhow, I am on a low dose and while the pills are active the T is reduced but the effects do not seem to last, off course I just started but if the side effects are too much I will stop taking them, in any case my GP advised me to stop by every 5 to 6 weeks to have a checkup and evaluation, for now I will continue I guess.

 

[undecided]

Anyhow, I am on a low dose and while the pills are active the T is reduced but the effects do not seem to last, off course I just started but if the side effects are too much I will stop taking them, in any case my GP advised me to stop by every 5 to 6 weeks to have a checkup and evaluation, for now I will continue I guess.

That's pretty much my experience.
The pills start kicking in about 20-30 minutes after the dose, their effect (reduced t, slight drunkenness) lasts for a while (45 minutes up to 2 hours max in my case), then it goes back to baseline.
It did have an effect though, that is a fact.

Maybe the effect lasts longer for people with more recent t (although the first time I took Trobalt was 5-6 months after getting t, so I believe I was still in the acute phase), maybe I should have tried more > 400mg.
Maybe I should be taking a dose every 4 hours instead of every 8. Dunno, didn't have enough pills to experiment with...

 

[locoyeti]

we need to keep in mind that the timeframe in which Danny experienced significant healing is the timeframe during which a majority of people who get tinnitus following ear trauma experience significant healing without taking any drugs at all.

while this is true, i am sure danny would tell you that the stark contrast between his T experience before and after intervention with RTG is salient, and revealing. i can tell you from my experience it was a stark contrast. while there were some gradual improvements over the 8 months of T i had before i took RTG, the improvements while on RTG, and then after, were incredible. the H basically went away. the various tones purified, and many of them went away altogether, so instead of dealing with a cacophony of sound i now just had to tune out a more homogenous sound... much easier to habituate to. and the volume went down quite significantly. my only regret is not using it sooner, like danny did.

by the way things have been great for me. at this point half my days are in near silence, and the other days its very low and not even an issue. i have a stash of RTG that i had intended to do another trial with later this year but i have decided i don't need it anymore. if anyone in the USA is interested in them PM me.

 

[1MW]

Iam starting to build tolerace to rtg.
1200mg of rtg+ 400mg flupirtine and slight effect to tinnitus also very slight stone effect.

 

[markoana]

Iam starting to build tolerace to rtg.
1200mg of rtg+ 400mg flupirtine and slight effect to tinnitus also very slight stone effect.

For how long are u on rtg? And how long on 1200mg?

 

[undecided]

Iam starting to build tolerace to rtg.
1200mg of rtg+ 400mg flupirtine and slight effect to tinnitus also very slight stone effect.

1200mg as a single dose? Or split evenly throughout the day?

 

[1MW]

I take rtg about 1 month like aspirin and 1200mg 3x400mg 2 days
but the result is no good.
2 things can happen bad quality control from glaxo to pills
or i have build tolerance because 400mg do not hit me anymore.
When i got rtg first time 200mg hit me more.

 

[Lloyd Carter]

@locoyeti If RTG worked so well and your T is now very mild, why wouldn't you continue taking the pills you have and see if it goes completely?

 

[linearb]

I take rtg about 1 month like aspirin and 1200mg 3x400mg 2 days
but the result is no good.
2 things can happen bad quality control from glaxo to pills
or i have build tolerance because 400mg do not hit me anymore.
When i got rtg first time 200mg hit me more.

don't you take a whole bunch of other stuff, too? That may complicate things...

 

[RaZaH]

Interesting, I might give this another go .

 

[RaZaH]

@locoyeti for how long did you take Trobalt ?

 

[linearb]

I'm taking 100mg TID as of a couple days ago. We'll see...

 

[preslys]

my only regret is not using it sooner, like danny did.

@locoyeti
So if the members of this forum don't take trobalt in acute stage they will regret not having tried it sonner ?


My case is different with you locoyti and danny boy ,only two week after stoping trobalt my tinnitus returned gradually to its initial level .

 

[RaZaH]

@preslys how long did you take it ? And for how long did you have t before doing this ?

 

[inadmin]

we need to keep in mind that the timeframe in which Danny experienced significant healing is the timeframe during which a majority of people who get tinnitus following ear trauma experience significant healing without taking any drugs at all.

As far as i remember his T was not a result of an ear trauma.

 

[marqualler]

As far as i remember his T was not a result of an ear trauma.

@Danny Boy's tinnitus was induced by otitis media (ear infection) -- which would classify as an ear trauma.

 

[preslys]

how long did you take it

I took my firts dose of retigabine end of june 2015 and this for 20 days then I have done a break of 15 days I started taking my second trobalt box and this also for 20 days ,My tinnitus was very low. two week only my tinnitus returned gradually to its basic level and now I am going to take my third box .

And for how long did you have t before doing this ?

my tinnitus started since may 26 th/2014 and I took my first trobalt pill june 29 th 2015.

 

[Bart]

Thanks @preslys , your T started about the same date as mine than.

I could be wrong here but didnt Danny and Locoyeti take it for much longer than 20 days at fairly high doses ?

 

[preslys]

@Bart

I will take my third trobalt box at high doses I'll see what i twill give.

I hope this time I will cruch it like that.

 

[erik]

Thanks for the updates!

 

[Danny Boy]

Here's a guide for AED for y'all!

http://www.epilepsysociety.org.uk/sites/default/files/attachments/Chapter25Sills2015.pdf

 

[Robb09]

Happy for you Dan, I saw a document link from you earlier in thread and i was thinking of printing it and showing it to Doctor, but 9 pages seem long. Should I do it anyways and maybe highlight the part where it can be a treatment for T? Or this site instead short and simple? (2 links) http://www.ncbi.nlm.nih.gov/pubmed/24681057

 

[linearb]

After several days at just 100mg TID, I think I am experiencing some improvement -- which makes me what to stick with this.

I am also definitely seeing a urinary side effect, and I'd like some feedback from anyone else who has been through this and had the same thing. My bladder is more difficult to completely empty; at the end of my urination, it turns into a dribble, and there is a very slight burning sensation along with it. That's not a big deal, but along with that I have the uncomfortable feeling (constantly) of having something a little bit stuck in my penis, which is distracting and fairly uncomfortable.

My question, for anyone who has had this symptom, is, was it constant for the whole time you were on the drug, or did it get better after some adjustment period? If the latter, great, I'll just chill out at 100mg TID until it resolves -- if the former, I do not know how I feel about escalating the dose.

 

[nills]

After several days at just 100mg TID, I think I am experiencing some improvement -- which makes me what to stick with this.

I am also definitely seeing a urinary side effect, and I'd like some feedback from anyone else who has been through this and had the same thing. My bladder is more difficult to completely empty; at the end of my urination, it turns into a dribble, and there is a very slight burning sensation along with it. That's not a big deal, but along with that I have the uncomfortable feeling (constantly) of having something a little bit stuck in my penis, which is distracting and fairly uncomfortable.

My question, for anyone who has had this symptom, is, was it constant for the whole time you were on the drug, or did it get better after some adjustment period? If the latter, great, I'll just chill out at 100mg TID until it resolves -- if the former, I do not know how I feel about escalating the dose.

for met it remained the same even when at high doses... color was more dark .. but just drink lots of water to flush your system and urinary track ... 2 liters at least and best 3 or a bit more (winter summer north south depend) ... little bits throughout the day..

 

[nills]

@locoyeti If RTG worked so well and your T is now very mild, why wouldn't you continue taking the pills you have and see if it goes completely?

because it is very very very unhealthy ... if it wasn`t we could take it our whole life ... but it is nasty stuff.

 

[Jaw]

Hi All

Been watching this forum for nearly 12 months but first time posting. I have had T for just over 12 months now but in my left ear only. Noise level has gotten slightly worse over the last year and i am desperately seeking some relief cause i can't see anything improving by just waiting it out.

Trobalt seems to be getting some great results and i am very interested in giving it a go myself. Does anyone know if it is available in Australia yet? Or can you get it shipped in with a prescription?

 

[valeri]

Hi All

Been watching this forum for nearly 12 months but first time posting. I have had T for just over 12 months now but in my left ear only. Noise level has gotten slightly worse over the last year and i am desperately seeking some relief cause i can't see anything improving by just waiting it out.

Trobalt seems to be getting some great results and i am very interested in giving it a go myself. Does anyone know if it is available in Australia yet? Or can you get it shipped in with a prescription?

No it's not available in Australia!
Yes it can be shipped as long as you have a script, no problem with customs.
Although some members here received it even with no script.
So if you have anyone overseas who can buy it for you go for it