Retigabine (Trobalt, Potiga) — General Discussion

@Steve721

I personally would not dismiss Trobalt based on one members feedback.
Some members are on a fairly small doses (300mg or 600mg daily) with good results and no side effects.
If you can get it I would say give it a go, start slowly and see how it effects you.
The question remains if it gives any permanent results.

This study has been withdrawn prior to enrollment.
(Development plan of retigabine XR in Japan was readjusted.)

Why?
 
@Steve721

I personally would not dismiss Trobalt based on one members feedback.
Some members are on a fairly small doses (300mg or 600mg daily) with good results and no side effects.
If you can get it I would say give it a go, start slowly and see how it effects you.
The question remains if it gives any permanent results.



Why?

I wouldn't have a clue why they terminated it. Very strange.
 
@Danny Boy Were you able to work while taking Trobalt? Or did the drunken/stoned feeling disable you? In addition, what would you say people that have had T for a few months have to lose by giving Trobalt a try?
Being on Trobalt is very unpredictable ... When I was taking it it would someties hit me while on my bike in traffic and it is very dangerous if you arn`t used to altered states ... and even I had problems driving straight or seeing everything that was happening around me.. One time I was walking and tried to jump a small bush and it went completely wrong ... operating machinery in the first 2 hours after ingestion is definitely a no go imo and ime.
 
@Markku

Would it be possible for you to email Trobalt users and get them to write their final results after stoping medication?
Not sure if this is possible but just and idea that would be useful for all of us, so no more speculations.
Thanks!
 
Two days of low doses (100mg TID) have apparantly led to unpleasant urological complications which have yet to resolve after 72 hours off of the drug.

The fact that it did seem to be working on my T, makes me think that AUT00063, should it come to market, will probably work for me -- but I'm a bit disinclined to take another stab at this one, especially after finding at least one credible report of someone ending up with a permanent need for a catheter following Trobalt therapy.

Tinnitus is a huge drain on my quality of life, but if I became unable to pee under my own power I think that would be worse... I realize that many people don't get this side effect at all, or it's self-limiting, but the fact that it showed up so quickly and strongly for me makes me think I may be unusually susceptible to it.
 
just small update

Las night I took one tablet of 200mg and went directly to bed ,I woke up at 1 am my tinnitus was really very low so I slept like a big baby until 8 am and as my T was very low I decided not to take another tablet,I spent the whole day in silence and even now as I write this update I heard it but doesn't bothers me .

Regarding side effect no big worries for now just drunked feeling.
 
Tinnitus is a huge drain on my quality of life, but if I became unable to pee under my own power I think that would be worse... I realize that many people don't get this side effect at all, or it's self-limiting, but the fact that it showed up so quickly and strongly for me makes me think I may be unusually susceptible to it.

That's is a very common side effect. And it doesn't resolve quickly.
One month after stopping RTG, my peeing routine is starting to go back to normal.
It didn't really bother me when I was on the drug though - drink lots of water and when you feel like peeing, massage the area below your belly button and voilà ;)

Don't know what would happen if I stayed on the drug longer though...
 
That's is a very common side effect. And it doesn't resolve quickly.
One month after stopping RTG, my peeing routine is starting to go back to normal.
It didn't really bother me when I was on the drug though - drink lots of water and when you feel like peeing, massage the area below your belly button and voilà ;)
Urinary hesitancy wouldn't have been as big a deal, but this felt like I had something stuck in my dick. Feeling like there's something stuck in my dick 24/7 is worse than tinnitus.

I only took the drug for 2 days, so I am hoping that it doesn't take a month to resolve :-p
 
I am considering trying Trobalt but I am worried about theeffects of sedation. For those who have used it or are taking it does the effect of sedation eventually go away as your body acclimates to the medication? How long does the sedation last? Danny Boy has stated that he was sedated for most of the day while taking it in the beginning. Did he eventually get over that? I am also looking into CBD's. I have read its effect with seizure disorders and wonder if anyone has tried it for tinnitus. Thanks.
 
Urinary hesitancy wouldn't have been as big a deal, but this felt like I had something stuck in my dick. Feeling like there's something stuck in my dick 24/7 is worse than tinnitus.

Trobalt is indeed eliminated by the kidneys did you check maybe you have a pill stuck there... ja ja ja Just joking my friend, you should be perfectly fine in a couple of days.
 
Today took 400mg rtg and nothing happened same as placebo.
The pills was empty.
I think glaxo has poor quality control..
 
I am considering trying Trobalt but I am worried about theeffects of sedation. For those who have used it or are taking it does the effect of sedation eventually go away as your body acclimates to the medication? How long does the sedation last? Danny Boy has stated that he was sedated for most of the day while taking it in the beginning. Did he eventually get over that? I am also looking into CBD's. I have read its effect with seizure disorders and wonder if anyone has tried it for tinnitus. Thanks.
The effect is not a sedation ... sedation is not what you will experience...

You will experience moments of memory loss, unability to think clearly, wobbly feet and problems walking straight, uplifted mood, surges of temporary happiness, brain fog and even possibly moments of severe confusion and accelerated thought processes ...they start around 20 minutes to 40 minutes after ingestion and last atleast 1 -2 hours .. but stomach content and other things will have an influence too.

For myself I found no issues with any of these to be honest. I just took it as it came ... Do have to say I have a lot of experience with psychedelic drugs so the effects of Trobalt were not `new` to me but I was amazed at how powerful this drug can be. When the confusion was there there was nothing to do but sit it out ... don`t even think you are going to make sense to anyone or even yourself. I said this before but there was one point I couldn`t even figure out how to put on my jacket for about 10 minutes ... seriously, my brain could not process how to get the hand inside the jacket and flip it around to put it on...

all of this is not permanent damage, I talked to y neurologist and he confirmed this and now I have quit taking it everything seems back to normal ...

I havn`t taken it more than 1.5 months so I don`t know if it fades away over time ... but my doctor said it will the longer you take it. Build up slowly is key to not being overwhelmed by side effects...

I build up too 400 tid in only 2 weeks while the suggested time span is around 7 weeks ...

hope this helps.
 
Today took 400mg rtg and nothing happened same as placebo.
The pills was empty.
I think glaxo has poor quality control..
you took 400 in one go or in seperate moments? 400 should be quit an experience :)
@nills , did you have any lasting effects to your T after stopping RTG ?
Sorry if you have explained that multiple times , this thread has just become very long .
didn`t have the lasting effect I was hoping for but I took it for a little time only ... I will start again today for a periode of 3 months.
 
Yeah , i tried the "aspirin" approach , taking it occasionally .
It worked for me , one 50 mg pill stopped the excruciating brain T .
I had a pretty good summer for some reason but I am back to the horror brain T so I am waiting for a prescription to do 3-4 months this time.

Last try :)
 
Wonder what GABA-"turnover" means?

Effects of GABAergic drugs on the GABA turnover in the substantia nigra and the corpus striatum of the rat.
Lindgren S.
Abstract
Changes in the endogenous GABA concentration and in GABA turnover following GABA receptor stimulation or blockade were studied in the substantia nigra and the corpus striatum of the rat. The GABA agonists, muscimol, baclofen and THIP decreased the accumulation of GABA following inhibition of GABA-alpha-ketoglutaric acid aminotransferase by gamma-acetylenic GABA (GAG) in both structures investigated. Only the effect of muscimol in the substantia nigra was inhibited by the GABA antagonist, bicuculline. Muscimol, baclofen and progabide reduced the disappearance rate of GABA in the substantia nigra following inhibition of the glutamate decarboxylase by 4-deoxypyridoxine. The endogenous GABA concentration was decreased in the corpus striatum following muscimol, THIP or baclofen, probably due to a decreased synthesis of GABA. Smaller effects were seen on the endogenous GABA concentration in the substantia nigra, since both the synthesis and the utilization of GABA were decreased by muscimol and baclofen. Thus, the turnover of brain GABA might be regulated by changes in receptor activity.
 
Thank you DB. What took you so long?:):););). Not sure I understand it though. Ill try and paste it for norwegian transelation.

Effekter av GABAergiske legemidler på GABA omsetningen i substantia nigra og corpus striatum av rotte.
Lindgren S.
Abstrakt
Endringer i den endogene GABA-konsentrasjonen og i GABA omsetning følgende GABA-reseptor stimulering eller blokade ble studert i substantia nigra og corpus striatum i rotte. The GABA agonister, muscimol, baklofen og thip redusert akkumulering av GABA etter hemming av GABA-alfa-keto-syre aminotransferase av gamma-acetylenisk GABA (GAG) i begge konstruksjoner er undersøkt. Bare virkningen av muscimol i substantia nigra ble hemmet av GABA antagonist, bicucullin. Muscimol, baklofen og progabide redusert forsvinningen av GABA i substantia nigra etter hemming av glutamat decarboxylase ved 4-deoxypyridoxine. Endogen GABA-konsentrasjonen ble redusert i corpus striatum følgende muscimol, Thip eller baklofen, sannsynligvis på grunn av en redusert syntese av GABA. Mindre effekter ble sett på den endogene GABA-konsentrasjonen i substantia nigra, ettersom både syntese og anvendelse av GABA ble redusert med muscimol og baclofen. Dermed kan omsetningen av hjernen GABA reguleres ved endringer i reseptor aktivitet.
 
at present on 4x 200mg /day,and if you gradually build up the feelings of being out of control are not too bad.What,and how much you eat play a big part on the effects of Trobalt I`ve found.When you take it therefore is important ,if you have to still function "normally".I am doing a trial ,which will build up to 1200mg/day,I have played around with the dose,at present taking 4x 200mg,in 4 separate lots,or 8x 100mg ,dividing the day into 8 periods ,and found no real change between the two ways.Tinnitus has altered in pitch and volume,because I am trying to hear the tinnitus in order to evaluate the use of Trobalt,I am more aware of the sound,there are large parts of the day when I am not aware anymore of the Tinnitus.If this lasts all good and well,if it doesn`t last then I will continue on maintenance dose,and see if that works.Either way the relief,is well worth the trial,and you do get used to the effects of Trobalt,which appears to effect us all differently,I for one have found that it has improved my peeing,,but I am hungry most of the time no ,which is a pain.
 
I have a question about retigabine but the effect of retigabine is not like a benzo? It's like you are a littel bit stoned and you not percived your tinnitus?
I took a Xanax once and a rohypnol once ... the rohypnol I don`t remeber a thing of that night ... the Xanax was very strong ... hmmm ... it might have a small window of 1-2 hours you could sense something similar ... a bit mellowed out ...
 
I took a Xanax once and a rohypnol once ... the rohypnol I don`t remeber a thing of that night ... the Xanax was very strong ... hmmm ... it might have a small window of 1-2 hours you could sense something similar ... a bit mellowed out ...
Also can retigabine stone littel bit? Why if I take 5mg of xanax during the day i don't percive my tinnitus but i'm completly down...
 
I have a question about retigabine but the effect of retigabine is not like a benzo? It's like you are a littel bit stoned and you not percived your tinnitus?

Being high on trobalt is nothing like a benzo "low".
Benzos will mellow you out and make you sleepy, that's about it.
Trobalt will add clumsiness, confusion and cognitive problems into the mix. Its an interesting feeling but you don't want to be doing anything complicated while it lasts.
You get used to it though, after a couple of months it doesn't hit hard at all.
 
I have had a massive improvement a few days after getting on retigabine, but I wanted to give it awhile before reporting anything to reduce the chance that I'm reporting on a placebo effect. I've been taking it exactly two weeks as of today, and I can pretty confidently say that the improvement that I've seen is not a placebo effect or habituation. My tinnitus is/was pretty loud. Before taking the drug I was starting to habituate, but the sound hadn't changed, if anything when I checked it by sticking my fingers in my ears, it sounded louder than it originally was 5 months ago when I got tinnitus, my reaction was just better. Now though, I literally don't hear the ringing, its still there, but I can't even hear it in quiet rooms—I literally have to be in a quiet space and plug my ears in order to hear it, if I plug my ears in a room with decent ambient sound… air conditioning, tv.. I can't even hear it in those environments with my ears plugged. A few weeks ago I could hear it driving down the interstate at 80mph with the radio on. Retigabine is a potassium channel modulator KV7, (Autofony is a KV3 modulator). The brand name is Potiga in the US and Trobalt in Europe. My father-in-law is a gp and prescribed it for me off label. Obviously I'm going to keep taking it if these results persist. Thought you guys would want to know.
Tinnitus probably has different etiologies like other brain diseases, epilepsy, etc--- and yes it a disease--- that's like saying epilepsy isn't a disease, seizures are just a symptom, just a semantics debate for authorities within the tinnitus community to spin their agendas with… if anyone can get a Dr to give them this off label I think its worth a shot—I'll keep everyone updated
how do you take it ? doses ? thanks
 
That's is a very common side effect. And it doesn't resolve quickly.
One month after stopping RTG, my peeing routine is starting to go back to normal.
It didn't really bother me when I was on the drug though - drink lots of water and when you feel like peeing, massage the area below your belly button and voilà ;)

Don't know what would happen if I stayed on the drug longer though...
and no more T when you ended trobalt ?
 

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