Retigabine (Trobalt, Potiga) — General Discussion

[randomuser]

Thank you for your reply.
I'm just worried now that autifony won't work for me

Retigabine and AUT are different molecules targeted at different sites, the IC50 ("effectiveness") of both will not be the same, the maximum tolerable dosage of AUT is still unknown but it looks like it'll be safer and with less side effects. At the end, it's all about biochemistry, you have a small molecule interacting with a protein, the specifics of the interaction are exquisitely controlled and by no means two different molecules will have the same effect, plus AUT seems to be targeted at KCNQ3.x, while RTG is a "shotgun" approach.

I would expect less side effects with AUT, which means that we'll be able to take it at higher doses compared to RTG and achieve a better channel opening effect, then the expected repolarization will be achieved faster and with durable effects. And if it doesn't work, adding one atom here or there in the same molecule will help more. Don't forget that there's another molecule in development, SF34, which is essentially RTG with an added fluorine atom to increase its effectiveness, and it looks like would be, again, more potent, safer and better tolerated. For now, RTG, a "test molecule", is working for many people, I don't see why AUT, better targeted, more potent, better tolerated, wouldn't work the same way if not better. Then, the brain plasticity will do the rest.

Stay optimistic.

 

[RaZaH]

It makes sense to me that if having T for a long time will make it ingrained in your brain and less likely to go away then the opposite should be true. That is ...having less T with chemical assistance for an extended period of time (a few months) should have a permanent effect.

 

[dan]

For me it helps but just for a very very short time! Not promising

Actually that is promising. It would be much worse if you had absolutely no effect. Since you experience no side effects so far I would recommend following Danny Boy advice and going up to 400 x3.
I don't understand why you refused to buy pills when you had the chance and now you have to worry about your supply if you wanted to increase your dosage.

 

[Rube]

The GP felt bad for me knowing that I've gotten no useful treatment for it... but she referred me to an otolaryngologist in Boston who works at the Mass Eye & Ear center who should be able to help (where a lot of cutting edge researching related to tinnitus is happening). I should be able to get a prescription for Retigabine + Keppra from them and possibly get involved in any clinical trials. I would love to guinea pig for Autifony, obviously.

It's not easy being a programmer and having a ringing in your ear that you can hear over most things!

It sucks that the autifony trials in USA are only for age related hearing loss for the time being.
On a separate but related note, I had a discussion with one of my neighbors who works for the underground transit system in NYC and I just found out due to his job he has t and pretty bad hearing loss (he said almost all of his coworkers have t) so I informed him about the autifony trials which happens to also take place at a hospital 2 mins away from us. He was very interested so I'll keep following up with him and gently nudge him to apply. Of course I'll give full updates on the autifony thread!

 

[Rube]

well, put me in the "severe negative side effects" group; 2 days of 300mg TID did some bad things to my urinary system which have yet to completely resolve 4 days later. There is no way that anyone could convince me to take this drug for 6-8 weeks.

That said, it "worked" on the tinnitus, it's just that I value being able to pee under my own power and not feel like there are shards of glass stuck in my dick 24/7 even more than I value silence...

@linearb sorry that you had a negative side effect. But very encouraging to hear it did something for you. If you don't mind, when you say it "worked" can you expand on that a bit? Thanks!

 

[markoana]

Thank you for your reply.
I'm just worried now that autifony won't work for me

Krajisnice, u should not be worried, good sign is that it works for u for some time (even 20-30 minutes) so it means that it has effect on your brain chemistry. AUT works on different Kv channel, it will be more precise, more potent, as members already wrote here. So I do not see why u should be worried!

 

[nills]

@nills
@undecided

While on Trobalt did you experience only a temporary reduction of tinnitus?
For me it works maybe just after I take it and lasts for 30-60 minutes and then it's back to "normal".
Was your experience the same or you would get the lasting reduction for the whole duration while on it?
Thanks!

Hey Valeri,

yes initially the reduction was only a short time ... but gradually it seemed that it never went up to the bsaeline ... also early mornings became more and more silent ... late evenings more bearable ... but yes, first you will only have 10 or 20 min or 1 hour effects... don`t be disheartened by it ... just watch your health and side effects and continue ... it does something.

 

[valeri]

Actually that is promising. It would be much worse if you had absolutely no effect. Since you experience no side effects so far I would recommend following Danny Boy advice and going up to 400 x3.
I don't understand why you refused to buy pills when you had the chance and now you have to worry about your supply if you wanted to increase your dosage.

Dan, back then I didn't have any of this crap hiss/sizzle reactive noise.
I tested Trobalt (1 box I got from Switzerland) for the "original" engine noise I have and it does nothing.
That's why I didn't buy any more, so nothing to do with money or anything but just a pure fact that I didn't need any more at the time.
But...things change and now I don't have enough to do proper run.

 

[nills]

Dan, back then I didn't have any of this crap hiss/sizzle reactive noise.
I tested Trobalt (1 box I got from Switzerland) for the "original" engine noise I have and it does nothing.
That's why I didn't buy any more, so nothing to do with money or anything but just a pure fact that I didn't need any more at the time.
But...things change and now I don't have enough to do proper run.

how high in mg`s did you go with trobalt?

 

[linearb]

@linearb sorry that you had a negative side effect. But very encouraging to hear it did something for you. If you don't mind, when you say it "worked" can you expand on that a bit? Thanks!

The tinnitus seemed greatly reduced in intensity by the second day I was on it. However, I also developed these uncomfortable bladder/urethra sensations the same day, which have not resolved (a week later and counting).

It's unclear to me at this time whether I'm experiencing an infection of some kind, a trobalt effect, or a completely unrelated flareup of CPPS symptoms (which I have had in the past, but never these exact symptons). I'm definitely worse off this week than I was when I was "only" experiencing tinnitus, and I won't proceed with Trobalt again (certainly not until I get a grip on these symptons!) -- but I really don't have any idea how much trobalt had to do with it, it could be coincidental -- from what I've read, it seems extremely unlikely that a total dose of 700mg Trobalt taken over 60 hours, would result in problems that last this long.

 

[Champ]

The tinnitus seemed greatly reduced in intensity by the second day I was on it. However, I also developed these uncomfortable bladder/urethra sensations the same day, which have not resolved (a week later and counting).

It's unclear to me at this time whether I'm experiencing an infection of some kind, a trobalt effect, or a completely unrelated flareup of CPPS symptoms (which I have had in the past, but never these exact symptons). I'm definitely worse off this week than I was when I was "only" experiencing tinnitus, and I won't proceed with Trobalt again (certainly not until I get a grip on these symptons!) -- but I really don't have any idea how much trobalt had to do with it, it could be coincidental -- from what I've read, it seems extremely unlikely that a total dose of 700mg Trobalt taken over 60 hours, would result in problems that last this long.

Yeah I would get checked with a doctor. 700 mg of trobalt isn't poisonous and shouldn't affect your bladder like that.

 

[valeri]

how high in mg`s did you go with trobalt?

800mg, 300-200-300, but results are short lasting.

With this hiss after I take rtg there's almost a physical sensation equivalent to shutting a door and the noise stops and my head become clear
I wish it would last!

 

[linearb]

Yeah I would get checked with a doctor. 700 mg of trobalt isn't poisonous and shouldn't affect your bladder like that.

I've seen a PCP and a urologist already; both thought it was possible that even the short-term, low dose has re-kindled my (largely long dormant) pelvic pain issues, but there's no way to have much certainty about that. In any case, obvious infections etc have been ruled out.

 

[Carlos1]

I've seen a PCP and a urologist already; both thought it was possible that even the short-term, low dose has re-kindled my (largely long dormant) pelvic pain issues, but there's no way to have much certainty about that. In any case, obvious infections etc have been ruled out.

@linearb hope you feel better soon man sorry to hear about the trouble your having

 

[gintas]

@Gill Hayes , yes , I have two kinds of T , one is the more "regular" T that I can hear in my ears and can be masked, those T days are my good days. Then there is the super high frequency , buzzing T that is in my brain , I can even "feel" it more then hear it. That one is the worst, no amount of masking helps ...if I could get rid of that I would be fine with the "eeeeee" audible T.

The tinnitus seemed greatly reduced in intensity by the second day I was on it. However, I also developed these uncomfortable bladder/urethra sensations the same day, which have not resolved (a week later and counting).

It's unclear to me at this time whether I'm experiencing an infection of some kind, a trobalt effect, or a completely unrelated flareup of CPPS symptoms (which I have had in the past, but never these exact symptons). I'm definitely worse off this week than I was when I was "only" experiencing tinnitus, and I won't proceed with Trobalt again (certainly not until I get a grip on these symptons!) -- but I really don't have any idea how much trobalt had to do with it, it could be coincidental -- from what I've read, it seems extremely unlikely that a total dose of 700mg Trobalt taken over 60 hours, would result in problems that last this long.

so you took 200mg in a day ?

 

[papu]

It's unclear to me at this time whether I'm experiencing an infection of some kind, a trobalt effect, or a completely unrelated flareup of CPPS symptoms (which I have had in the past, but never these exact symptons).

It seems to me without having all the facts and your medical history that you might be suffering from chronic prostatitis. (hesitation will urinating, pain while voiding, the sensation of having already pee and get the urge to go almost inmmediatly, pain over the bladder region, pain between rectum and scrotum, uncomfortable or painful eyaculation and sometimes lower back pain) do you have something like that?

 

[nills]

800mg, 300-200-300, but results are short lasting.

With this hiss after I take rtg there's almost a physical sensation equivalent to shutting a door and the noise stops and my head become clear
I wish it would last!

as long as you don`t reach 1200 it`s not possible to make final conclusions ... sometimes 300 had less effect than the first 100 ... best effect was at 3 x 400. but it comes for a price .. you`ll be `trobalt high` for a big part of the day.

 

[linearb]

It seems to me without having all the facts and your medical history that you might be suffering from chronic prostatitis. (hesitation will urinating, pain while voiding, the sensation of having already pee and get the urge to go almost inmmediatly, pain over the bladder region, pain between rectum and scrotum, uncomfortable or painful eyaculation and sometimes lower back pain) do you have something like that?

Yes, I have a history with this condition, and one theory at the moment is that something (possibly muscle/nerve glitches from Trobalt, possibly unrelated) has caused a flareup in this which is causing my present symptoms.

Whatever the case, my constant 14khz dog whistle seems like a walk in the park in comparison -- I've missed 2 and a half days of work in the past week, compared to maybe a combined total of 3-4 days over the past 5 years for Tinnitus issues.

 

[papu]

@linearb how old are you? if I may ask?

 

[Yo-Han]

Yes, I have a history with this condition, and one theory at the moment is that something (possibly muscle/nerve glitches from Trobalt, possibly unrelated) has caused a flareup in this which is causing my present symptoms.

Sorry to hear that. I had kidney surgery (mechanical problem) and i know i was freightened then and sometimes in very serious pain. The pain from my problem was caused by hydrophrenosis (obstruction of urine leaving the kidney beacon) and was indeed nothing to be compared about ... even to H and loud screechy T days

Your problem might be caused by trobalt since retigabine/ezogabine effects the smooth muscles of the bladder and has known side effects on the urinal tract (causing retraction). It's very likable that the symptoms will recede off course if its from the trobalt, given time. Maybe you even pee'ed out a small kidney stone since you wrote about sudden pain in the d!!k

http://www.ncbi.nlm.nih.gov/pubmed/22428574

 

[linearb]

@linearb how old are you? if I may ask?

34.

 

[grate_biff]

The reason I asked about GABA-turnover is because I once got Sodium valproate, when hospitalised for my benzo addiction in january this year. It seemed to attenuate my T somewhat and I have since wondered why. According to the antiepileptic "map of targets" you posted it targets the GABA -turnover. But it also targets the Voltage-gated Na+ channels and the LVA Ca2+ channels(wtever that is) which also ofcourse could be what reduced my T. I have heard that Tegretol(Carbamazepine) also helps and that also affects the V-g Na+. Seems to me K+ ions are not the only overactive neurons responsible in the brain regarding T. Recent research also tells us there are several mechanisms at play here. I´m going nuts trying to understand it all.

Since getting T I have like most of you tried to really understand what mechanisms is at play here, with this tormenting affliction, that T is.
I am sure GABA and Glutumate has something to do with it cause benzo helps lowering T. But that way is out of the question for me as I am fighting for my life to try and get out of it and have been since 2012. Its really crazy how long it takes to overcome benzo-withdrawl-symptoms. I´m in the middle of it and I still don´t believe it. Neither do my doctors really. Still Im sitting here with tremors shaking from the core of my body, periods of extreme anxiety,depression and nausea.

Suprisingly my new doctor prescribed 50 mg Trobalt to me. ( My plan is to start off easy with 3*50mg) I showed him that I had already acquired boxes of 100 mg and 200 mg from Spain. I think this is a smooth thought of "ice-breaker" in that respect should Trobalt prove effective for me. If it works and I want more, how could they deny me? Atleast I don´t have to worry about going to Spain.

Went to the pharmacy to pick it up today as they had to get it from central depot. To my suprise it expired 04/2015 so they have to get me a new box, but not until a couple of weeks. I is just not in stock anywhere. She called several other pharmacies in town. No one had it! I guess it just underlines that this drug is not excactly a best selling commodity. In fact its extremely rare.

Sry, Im just rambling here...

Just some questions to you who have tried Trobalt:

I think what I dread the most in life(besides T) is dizziness. Did any of you have really bad dizzy-spells when taking Trobalt and if so at which dosage were you on?

It is very important to me to get fit and I like to go jogging three times a week. Were any of you active while on Trobalt? Did that do anything regarding the sideeffects?

Did you drink alcohol when on Trobalt? If so, did that have any effect either way?

Thank you!

 

[papu]

@grate_biff
1) yes at 300 mg three times a day
2) exercise is good for everything even the soul so exercise away jus don't go running near cliffs
3) one or two social drinks is OK just don't over do it and tried not to do it right after ingesting pill

Just my 2 cents

 

[Danny Boy]

@grate_biff
1) yes at 300 mg three times a day
2) exercise is good for everything even the soul so exercise away jus don't go running near cliffs
3) one or two social drinks is OK just don't over do it and tried not to do it right after ingesting pill

Just my 2 cents

"Physical exercise has been demonstrated to be neuroprotective in both clinical and laboratory settings."

So get jogging people lol

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2920558/

Actually, this explains why whenever I went out on long walks I always came back with zero tinnitus, even when I was on trobalt, if I sat around the house it would be like a 2-3, but always zero when I came back...Also trobalt reduces glutamate in the brain and exercising normalises it.

Glutamate[edit]
Glutamate, one of the most common neurochemicals in the brain, is an excitatory neurotransmitter involved in many aspects of brain function, including learning and memory.[61] Glutamate regulates certain exercise-related memory processes primarily via cotransmission with dopamine in the dopaminergic projections from the ventral tegmental area;[62][63] in particular, exercise has been shown to modulate (normalize) glutamatergic cotransmission in the mesocorticolimbic dopamine pathway.[31]

 

[Yo-Han]

@grate_biff

This article will explain more then the short exerpt posted before a few pages back (too small of a bit in the big picture) -Hardcore link-

http://www.intechopen.com/books/anx...f-glutamate-gaba-harmony-in-anxiety-disorders

Chapter 2 is about gaba turnover, its not easely explained in 1 sentence

Gaba turnover is part of the complex gaba glutamate cycle (glutamine->glutamate->gaba ... -> ), not novice stuff. You gotto at least understand benruy's stuff in this thread to dive into this material wich delves deeper. The krebs or TCA cycle is where i quit, that's too complex. But i know its the cycle that converts your food(carbs, fats, proteins) into amino acids and neurotransmitters(very simplisticly said) or in short: food->energy

And if all this is too complex (it breaks my head to sometimes) i find this article a great read (not super easy, but the bottom line in as simple terms as possible) A holostic site, but facts based on science:

http://www.holistichelp.net/blog/how-to-increase-gaba-and-balance-glutamate/

ps this kinda ads to dannyboys's post above about glutamate... gaba is the counterpart, the one that calms things down. But they are odd twins gaba and glutamate, they need each other cause glutamate is a gaba precursor (needed to produce gaba). I think the balance is also a probably critical point in some T people!

Its the balance that counts, not many psych meds try to increase Glutamate i read somewhere. Could be dangerous. The effect off trobalt on glutamate is kinda an extra i thought and blocks excesses instead of lowering glutamate too much(not 100% sure, lost article) Excercise and brain training will do (unless you have a real serious off balance) and exercise will also have a good effect on serotonine levels.

 

[undecided]

The reason I asked about GABA-turnover is because I once got Sodium valproate, when hospitalised for my benzo addiction in january this year. It seemed to attenuate my T somewhat and I have since wondered why. According to the antiepileptic "map of targets" you posted it targets the GABA -turnover. But it also targets the Voltage-gated Na+ channels and the LVA Ca2+ channels(wtever that is) which also ofcourse could be what reduced my T. I have heard that Tegretol(Carbamazepine) also helps and that also affects the V-g Na+. Seems to me K+ ions are not the only overactive neurons responsible in the brain regarding T. Recent research also tells us there are several mechanisms at play here. I´m going nuts trying to understand it all.

Since getting T I have like most of you tried to really understand what mechanisms is at play here, with this tormenting affliction, that T is.
I am sure GABA and Glutumate has something to do with it cause benzo helps lowering T. But that way is out of the question for me as I am fighting for my life to try and get out of it and have been since 2012. Its really crazy how long it takes to overcome benzo-withdrawl-symptoms. I´m in the middle of it and I still don´t believe it. Neither do my doctors really. Still Im sitting here with tremors shaking from the core of my body, periods of extreme anxiety,depression and nausea.

Suprisingly my new doctor prescribed 50 mg Trobalt to me. ( My plan is to start off easy with 3*50mg) I showed him that I had already acquired boxes of 100 mg and 200 mg from Spain. I think this is a smooth thought of "ice-breaker" in that respect should Trobalt prove effective for me. If it works and I want more, how could they deny me? Atleast I don´t have to worry about going to Spain.

Went to the pharmacy to pick it up today as they had to get it from central depot. To my suprise it expired 04/2015 so they have to get me a new box, but not until a couple of weeks. I is just not in stock anywhere. She called several other pharmacies in town. No one had it! I guess it just underlines that this drug is not excactly a best selling commodity. In fact its extremely rare.

Sry, Im just rambling here...

Just some questions to you who have tried Trobalt:

I think what I dread the most in life(besides T) is dizziness. Did any of you have really bad dizzy-spells when taking Trobalt and if so at which dosage were you on?

It is very important to me to get fit and I like to go jogging three times a week. Were any of you active while on Trobalt? Did that do anything regarding the sideeffects?

Did you drink alcohol when on Trobalt? If so, did that have any effect either way?

Thank you!

Tegretol is a sodium channel blocker, seems to work best on the typewriter kind of tinnitus.
It is however an ototoxic drug with serious side effects, so you'll be playing with fire.
A safer option as far as sodium blockers go is Neurontin... Pick your poison.

Benzos work for tinnitus mainly because they act as a brake in the brain through GABA and secondly because they are quite potent sodium channel blockers as well, a fact that is not commonly mentioned (that's part of the reason they are effective as anticonvulsants).

Another option is Ca+ (calcium) blockers such as stugeron and sibelium. These have quite a calming effect for the labyrinth and the vestibular system so they may be worth a try, they're quite safe for a short trial.

But it seems that potassium is the way to go for tinnitus. All the research is focused there. In my opinion, the drug that cures tinnitus will have to be a dirty cocktail targeting all the above neurotransmitters.

Maybe one day I'll take all the above simultaneously and see how my tinnitus is after they revive me in the ER.

 

[RaZaH]

@Danny Boy , When would you say that in the 10 month period you were on trobalt you felt that you reached zero T.
Was it gradual or ?

 

[Danny Boy]

@Danny Boy , When would you say that in the 10 month period you were on trobalt you felt that you reached zero T.
Was it gradual or ?

Well, I have no clue...It just disappeared one day and I stopped trobalt straight away and it hasn't came back. It was random.

 

[uae96]

Well, I have no clue...It just disappeared one day and I stopped trobalt straight away and it hasn't came back. It was random.

I know u probably have answered that before , but how long did you take it after you're t ?

 

[Danny Boy]

I know u probably have answered that before , but how long did you take it after you're t ?

Three months.