Retigabine (Trobalt, Potiga) — General Discussion

[Juan Carlos]

@Freddie you say that Trobalt is available over the counter in Spain, yet I believe that @Juan Carlos has mentioned that it is a prescription only drug. I believe this is a matter that needs some clarification.

I explain: Officialy its totally forbidden to sell Trobalt without prescription, BUT some drugstores (SOME i mean around 50%) decide the break the law in order to earn more money.
Today I went to a random pharmacy and bought Trobalt, starter pack wich is 21x50mg+42x100mg for a total of 34€.
It was not available on the morning so they told me to come back at 5pm and there it was

On another note. An important note, I might add.
This shit WORKS. Been on 300mg TID for 2 days and there are times when my tinnitus is 70-80% lower. It is completely and utterly NOT bothersome.
you mean 300x3 = 900mg per day?

BUT.

The pill is a fuckin' nuclear warhead. I mean, amnesia, dizziness, weird (not unpleasant) feelings all over. For me at least. It makes me dumb.
I don't think I can do 300mg TID. I have to drive to work, work for 8 hours and then drive back. I'm risking my job and my life. The side effects last for about an hour. Then I'm good to go. But that hour, I can't even speak straight.
thats my biggest concern, so i though if i start i will take it at 5am, 1pm and 9pm, so i take only one during my job, instead of the typical 8am-4pm-12. i can walk to my job luckily
Don't really know where to go from here. I'll reduce to 200mg TID or I'm going back to benzos.
Retigabine is no joke. Be aware.

 

[dan]

@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.

 

[locoyeti]

forgive the stream of conscious-like writing: i don't know if someone previously said something about not taking naps, but i totally get that. today is my 4rth day on the drug. for whatever reason i had a very empty stomach this day, took it in the morning and had a pretty big effect on my T, super silent . ate a small breakfast directly in between, then took my second dose, and even further silence (like 0.3 / 10). previous to this i was eating a lot more than usual, and/or eating at the same time of dosage. taking this on an empty stomach is key. juan u might want to in the morning take a lower dosage with food or something. i have more to say regarding whoever is talking about dosage, but am in no position right now.

my t is as i said very low. i feel 'high' on marijuana (i smoked a lot many years ago, and still did so recreationally - once every 2 months - until i got T). i also got this strange psychadelic effect, when i closed my eyes, i would have wonderfully creative images flash before my eyes (i have tripped on LSD/mushrooms a dozen times in my life so i know the feeling). this is the first day i've had such effects, and they are..... awesome. but who knows what is going on in my head damage wise. best to be positive i suppose. i just took a nap and woke up, and a strange sensation of my t in both ears, as if they were trapped behind a wired fence trying to break through. this happened once before when i took the drug a few days back and woke up from a nap and its like the T comes back for some reason. thankfully they stayed back, and as i am writing to you i am experiencing something close to silence.

i must say though that monday and tuesday were not good days. i got a spike monday night, and tuesday was also quite bad. i was almost at the point of stopping this experiment, or only carrying it a another week. one strange side effect i have is that i am having brain 'zaps', particularly when i am trying to sleep. i had these maybe 1 or two times on maybe 4 well separated days since i had T, so i never worried about it. it feels something like a split second mini-seizure, everything sort of stops and i get a feeling of being short of breath. i have not since taking the drug been able to properly research but a cursory googling said that it is not serious, but some people just naturally have it, and it can go away. have any of you experienced that or know anything about it? it started at 300mg dosage sunday night, and is kind of affecting my ability to sleep because they will occur very frequently 30 to 60 times. my doctor friend said don't worry so i think i will just carry on. just wanted to share what is the only real bad side effect i've experienced.

 

[rtwombly]

I appreciate you're fighting to give us this much, @locoyeti, so just ignore this if it's too much to deal with right now. I'm going to give you some bullet point questions, multiple choice or yes/no. Fill in if you can.

1. Do you mean Retigabine is more effective on an empty stomach (good) or too strong on an empty stomach (bad)?
2. Have you had blurry vision?
3. Are you taking anything to help you sleep?
4. Did the decrease in your tinnitus happen gradually or all at once? Don't worry about the spikes for now, I just mean in general.

The symptoms you describe sound like http://en.wikipedia.org/wiki/Aura_(symptom) accompanied by http://en.wikipedia.org/wiki/Partial_seizure. Aura = hallucinations, partial seizures = seizures in one hemisphere or lobe. Read the partial seizure symptoms if you can, please.

I'm concerned about the seizures. I think you might consider reducing dosage slightly to see if they go away. It sounds like you've hit a threshold with your tinnitus - really shaken things up - maybe you don't need quite so strong a dose to continue your progress. No pressure, leaving it all to you.

Take care of yourself, please.

Edited to add:

You might consider putting yourself on a low-carb diet while on the therapeutic dose, similar to the ketogenic diet prescribed to children suffering epileptic seizures. Atkins might work, Whole 30 would probably be great, but you'd need help; there's a lot of food prep.

 

[locoyeti]

I appreciate you're fighting to give us this much, @locoyeti, so just ignore this if it's too much to deal with right now. I'm going to give you some bullet point questions, multiple choice or yes/no. Fill in if you can.

1. Do you mean Retigabine is more effective on an empty stomach (good) or too strong on an empty stomach (bad)?
2. Have you had blurry vision?
3. Are you taking anything to help you sleep?
4. Did the decrease in your tinnitus happen gradually or all at once? Don't worry about the spikes for now, I just mean in general.

The symptoms you describe sound like http://en.wikipedia.org/wiki/Aura_(symptom) accompanied by http://en.wikipedia.org/wiki/Partial_seizure. Aura = hallucinations, partial seizures = seizures in one hemisphere or lobe. Read the partial seizure symptoms if you can, please.

I'm concerned about the seizures. I think you might consider reducing dosage slightly to see if they go away. It sounds like you've hit a threshold with your tinnitus - really shaken things up - maybe you don't need quite so strong a dose to continue your progress. No pressure, leaving it all to you.

Take care of yourself, please.

Edited to add:

You might consider putting yourself on a low-carb diet while on the therapeutic dose, similar to the ketogenic diet prescribed to children suffering epileptic seizures. Atkins might work, Whole 30 would probably be great, but you'd need help; there's a lot of food prep.

the highness has worn off, this thing only stays in ur system like 5 hours i think. t is still low though. its all very early so i may just be having a good t day, and the effects of the drug might simply be marginal. recall that i had spikes last two days, and there was the dreaded H that accompanied it. today was the best day i've had since i had T. i walked to the grocery store (i live in a super noisy city) and had not a bother in the world.

1. Do you mean Retigabine is more effective on an empty stomach (good) or too strong on an empty stomach (bad)? strong/effective might be the same thing really. but yea empty stomach or light stomach. i am experimenting tonight, i will eat a bigger dinner and see what happens (i always eat light breakfast, no lunch, and decent size dinner). tomorrow i will try to simply not eat much for either meal.
2. Have you had blurry vision? not really, very mild at times, but mostly i dont.
3. Are you taking anything to help you sleep? not taking any other drug while im on this.
4. Did the decrease in your tinnitus happen gradually or all at once? Don't worry about the spikes for now, I just mean in general. i woke up with it light, and then took the drug and it went super low. my t is just constantly changing all the time. it definitely felt as though the drug was working its magic. probably took a an hour or so, and i suppose was gradual but it was already light when i woke up (1/10).

The eye visuals / tripping was super mild and transitory, it is nothing to worry about i think. it happened when i was just feeling really high and sitting on my chair, not as i was trying to sleep. by the way sleep is much better on this drug (i have always had big issues with sleep, even before T). the partial seizures are a big worry for me, but weighing the variables, i think it is still worth it to continue with the drug for a week or so and then reevaluate.

I did the atkins/ketogenic diet for a whole year before T, lost about 50 pounds to get to my goal weight. since T i have gained it all back (food therapy instead of benzos), and so i was actually thinking about doing the keto diet and retigabine at the same time for added effect (for those who dont know, keto diets are very effective for weight loss and also added mental acuity. i am usually high strung but on the keto diet my mind is at peace. it apparently counteracts hyperactivity, or more accurately one can say that a high carb diet is very excitatory from a neuronal perspective). i decided to not have two variables in the experiment, and so now i eat a keto breakfast, and then eat a little bit of rice for dinner so that i dont kick into the ketotic state. my plan if this trial run didn't work was to try again around next spring, fully in the ketosis and quite a few pounds lighter.

 

[Mpt]

Good to see others having some success... the thing that concerns me about the autifony trials is the short time frame- 4 weeks I believe, I definitely had an incredible reduction during that time frame but it was during my 2nd month on the drug where my tinnitus basically disappeared... locoyeti's experience sounds a lot like mine, I started experiencing something close to silence for long periods during weeks 2-4, after that I got to the point where I basically couldn't find my tinnitus when looking for it unless plugging ears, things have continued to improve- I do think there is some sort of brain plasticity that takes time to take place because I continue to check once or twice a day by plugging my ears, and for the past two weeks I haven't had any tinnitus sounds even with ears plugged- almost as if the reduced volume has allowed my brain to file whatever is left away-- I hate to say it because the mechanism is not known but this dovetails nicely with jastebroff's concept of subcortical filters

 

[locoyeti]

Good to see others having some success... the thing that concerns me about the autifony trials is the short time frame- 4 weeks I believe, I definitely had an incredible reduction during that time frame but it was during my 2nd month on the drug where my tinnitus basically disappeared... locoyeti's experience sounds a lot like mine, I started experiencing something close to silence for long periods during weeks 2-4, after that I got to the point where I basically couldn't find my tinnitus when looking for it unless plugging ears, things have continued to improve- I do think there is some sort of brain plasticity that takes time to take place because I continue to check once or twice a day by plugging my ears, and for the past two weeks I haven't had any tinnitus sounds even with ears plugged- almost as if the reduced volume has allowed my brain to file whatever is left away-- I hate to say it because the mechanism is not known but this dovetails nicely with jastebroff's concept of subcortical filters

Hey @Mpt, glad to hear that you are still going strong even off the drug. You should get a national medal for this man. I did a ton of research on retigabine in order to feel competent enough to say that it could theoretically work, but I NEVER would have tried this if not for you.

A quick question:
You said that you didn't really have any bad side effects, except for being a little fatigued (I guess mental fatigue rather physical fatigue). It is remarkable that you didn't experience any slowness ('high') or any other side effects. You didn't even get any orange urine? Was the evening fatigue really all that you experienced?

 

[RaZaH]

Man, I am getting so excited to try this , cant sleep...super bad T at the moment.
At least now I have some hope , thanks @Mpt

 

[RaZaH]

@locoyeti What is your current dosage on your 4th day ?

 

[locoyeti]

my taper up was:
100mg TID 3 days
150mg TID 2 days
200mg TID 2 days
300mg TID just finished 4rth day of this. i plan to stay on this for a month or so. i really didnt feel anything until 200mg TID and it was very mild. 300mg TID is where i really felt it.

TID = three times a day.

 

[dan]

I agree with Mpt, the brain has the ability to filter out some degree of tinnitus (a la Jastreboff), but not when it can be heard over traffic.

 

[Juan Carlos]

Here is what I bought yesterday, "starter pack", I chose this but I could buy 400mg pills for example. in the first random pharmacy where i went into without prescription. Total 34.5€
I Took a 50mg pill, I didn't experience any side effect, just my own nerviousness expecting them. 1h later i went to sleep, wake up with T around 30% lower, but it could be just a 'good morning', i dont necessarily attach the reduction to rtg but probably it is. I will consider the treatment when i come back from my trip to brussels next week.
Starting dose is meant to be 300mg per day, but next step is 450mg per day, Thats strange, first jump 300mg, and other jumps are all of 150mg,
as I understand taper up slow is meant to avoid big side effects, and taper off slow is meant to avoid reboud seizures on epilepsy, so i dont know if we (T people) should follow also the slow taper off, any ideas?

Edit: BTW its curious that starter pack is manufactured in United Kingdom and all the other boxes are manufactured in Spain, you can read that in one of the following pictures.
Also the composition is not exactle the same depending of the pills dosage, curious

r

 

[NGC891]

basically couldn't find my tinnitus when looking for it unless plugging ears, things have continued to improve- I do think there is some sort of brain plasticity that takes time to take place because I continue to check once or twice a day by plugging my ears, and for the past two weeks I haven't had any tinnitus sounds even with ears plugged- almost as if the reduced volume has allowed my brain to file whatever is left away-- I hate to say it because the mechanism is not known but this dovetails nicely with jastebroff's concept of subcortical filters

hello,
@Mpt
This is very encouraging to hear that your T is not here!
I'm very happy for you.
Could you remember if you have definitively stop Trobalt today? since how many times?
Could you confirm to us that your T have continued to decrease after cessation of Trobalt ?
Can you tell us what were your taper up, taper constant and taper down?
Thank you for your answers

 

[Martin69]

On another note. An important note, I might add.
This shit WORKS. Been on 300mg TID for 2 days and there are times when my tinnitus is 70-80% lower. It is completely and utterly NOT bothersome.
you mean 300x3 = 900mg per day?

BUT.

The pill is a fuckin' nuclear warhead. I mean, amnesia, dizziness, weird (not unpleasant) feelings all over. For me at least. It makes me dumb.

The stuff really seems to work.
But side effects are no fun. :-(

I agree with Mpt, the brain has the ability to filter out some degree of tinnitus (a la Jastreboff), but not when it can be heard over traffic.

Absolutely agree.
I had the one or other lower day recently. I can still hear T above most sounds.
But not oscillating and not the whole head is buzzing. So if it is lower, little bit better to handle.
But it is always on my mind, if high or lower.

 

[valeri]

Some really promising results again.
Hope the trend continues

 

[Robb]

Good to see others having some success... the thing that concerns me about the autifony trials is the short time frame- 4 weeks I believe, I definitely had an incredible reduction during that time frame but it was during my 2nd month on the drug where my tinnitus basically disappeared... locoyeti's experience sounds a lot like mine, I started experiencing something close to silence for long periods during weeks 2-4, after that I got to the point where I basically couldn't find my tinnitus when looking for it unless plugging ears, things have continued to improve- I do think there is some sort of brain plasticity that takes time to take place because I continue to check once or twice a day by plugging my ears, and for the past two weeks I haven't had any tinnitus sounds even with ears plugged- almost as if the reduced volume has allowed my brain to file whatever is left away-- I hate to say it because the mechanism is not known but this dovetails nicely with jastebroff's concept of subcortical filters

This is amazing news @Mpt ! Just wondering did you stop taking or still on it?

Thanks so much

 

[Juan Carlos]

This is amazing news @Mpt ! Just wondering did you stop taking or still on it?

Thanks so much

he is completely off from some weeks ago

 

[NGC891]

this is the starter pack right ? here in spain this 3 boxes cost 35€

Yes! Here in France, these 3 boxes cost 23,93€

 

[locoyeti]

woke up to near silence again. lets the good times roll. brain zaps were note much of a problem (they seem to occur mostly when i close my eyes to sleep. maybe had 4 of them before i passed out.).

 

[Rube]

woke up to near silence again. lets the good times roll. brain zaps were note much of a problem (they seem to occur mostly when i close my eyes to sleep. maybe had 4 of them before i passed out.).

Awesome news and I'm glad the brain zaps are less. I wish we could find out if @Mpt had any of these side effects in detail and if they subsided as soon as he tapered down. The other question is how long should a person stay on before dosing back down to see if the results are permanent.

 

[Rube]

woke up to near silence again. lets the good times roll. brain zaps were note much of a problem (they seem to occur mostly when i close my eyes to sleep. maybe had 4 of them before i passed out.).

I thought u mentioned it increased ur H, is that still the case?
Thanks for all your information!

 

[Zimichael]

Another "mixed post" here but shorter...Very amazing news with latest trialees. No need to elaborate there!

@NGC891 ...Thanks for the pictures. Those boxes look totally legit to me. Same 'braille' type dots, and appearance, etc.
Also I will PM you as if you "updated" your profile I see nothing there except... Male; Location:Europe; Tinnitus Since:1998 > 2008 > 2014 and then the frequencies. Would be kinda nice to know more detail. Also your height and weight would be of interest to me. (Ref. minorly relevant mg/kg dosage aspect)

@Juan Carlos ...No need to add more really to long post yesterday, but "cost" of your proposed schedule for me to get to the supposed "therapeutic dose", etc. would be considerable. (Over $2,000)...Also, as we are seeing, and as I have often stated, one can get "effects" at lower doses and very quickly.

@undecided ...Regarding the "nuclear bomb" effect. I would just take it slower on the taper as did get the sense that this matters IF have some significant side effects. When I backed off from 450 mg/day to that 'holding pattern' of 300 mg/day for 3 days then realized I was not going to get any more supply, the jump up to same 450 mg/day = zero of those side effects. Worth considering.

General comment: Regarding what we see with Christian, and Locoyeti, and ???... This is what I wrote in a PM with respect to "feeling high" and sleep, etc. during and after Trobalt:

Interesting about the "high". I felt indeed very positive and unusually good energy and attitude during the whole Trobalt period, even when I was tapering off. I initially put it down to "hope" and the power of that, but it was a little too much really as I am not that easily influenced by "thoughts" and "expectations" - have been beat up way too many times! Thus I think there is an sort of anti-depressant effect with the stuff, maybe just for some people. Could be worth putting out as a question on the Thread?
I don't recall getting this "drunk" feeling however, though a bit hazy on it all right now. I think it did make me sleep a little more deeply though.....Uhhhh, maybe not. I'm looking at my detail log. There were periods of my normal shitty sleep, awake 10 times a night. So scrap that, nothing conclusive re sleep.
Also I wrote in my log: "Am definitely not as sharp and clear since Potiga!" That was day 17 when back to 300 mg total/day when waiting for new stuff that did not arrive, etc., etc. A few days later was going up to 200 mg TID, so the 600 mg/day total and was a bit dizzy/woozy and having naps in afternoon...but no "brain fog". Quite clear, etc. Not confused or any of that "zingo verbal-language-speech" stuff...Interesting! Was that due to a delay of a few days allowing 'adjustment', or...??? Overall though I was mostly 'very clear' throughout when I look more closely at my log.
When tapering down soon after the 600 mg, (as running out), the lack of "bummer" and "shit it did not work" still did not affect me until a while after quit totally. Thus this the anti-depressant effect??? Or was I just relieved to be off it and have the extra > in hyperacusis slowly easing off?! Not sure.

Self explanatory yes?!

Good luck all, and I'm looking forward to your reports especially @NGC being a "T long termer".

Zimichael

 

[locoyeti]

I thought u mentioned it increased ur H, is that still the case?
Thanks for all your information!

had spikes with H on monday and tuesday.
H was gone yesterday, gone today too. i only get H like once every few weeks anyway.

 

[john2012]

its weird that retigabine costs a fortune in some places and yet just a few euros in europe
i am thinking of giving this stuff a try, the reviews look good
we're all very grateful to mpt for starting this movement
mpt had his T for about 20 weeks before the retigabine cleared it
has there been any long-term T cleared in a similar way?

 

[RaZaH]

Good question , I am almost at 3 years . Will try this as soon as I get my hands on it. Hopefully tomorrow.

 

[Juan Carlos]

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?

 

[rtwombly]

as I understand taper up slow is meant to avoid big side effects, and taper off slow is meant to avoid reboud seizures on epilepsy, so i dont know if we (T people) should follow also the slow taper off, any ideas?

Well, maybe it doesn't matter. But the risk is too great, IMO. Please don't try.

 

[dan]

Well, maybe it doesn't matter. But the risk is too great, IMO. Please don't try.

Don't try what?

 

[rtwombly]

Don't try what?

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.

 

[RaZaH]

I agree , epilepsy or not ...please do not stop strong drugs cold turkey. No real reason to do so and it have can terrible consequences. I in fact got T from doing so.