Retigabine (Trobalt, Potiga) — General Discussion

[nills]

@nills
at the beginning you had an improvement, but what I see now it is not the case. Am I right ?

Yes, I had some effect on it at my first doses of 100mg even.. also at 200 there were moments of silence.. There is an effect actually.. There is a moment when i feel it coming on and a little bit after i`m just floating a bit in a drunk sate around the house not minding t T so much... Like at the moment my T is at a volume that if I wouldn`t know better I would get into a panic attack ... but I have had it for so long now that I`m just bored with it, you know. Like Oh yeah there you are again you mongrel. ... and I have taken my second dose of 200mg`s about 2.5 hours ago. I do remember sitting in the city amongst friends just silently withdrawing in the coming on of the `Trobalt-high` and myself enjoying the scenes that were playing out. There was mellow city noise but no T and usually I would hear it even in those moments. So yeah, something but don`t know what really.

 

[grate_biff]

I got 168*200mg and 63*100mg Trobalt freshly flown in from Spain.
The only thing stopping me from taking it right away is fear!
Fear of the sideeffects, fear of interactions with other medication Im currently on.
Fear cause my GP is strongly opposed to it.
But non of this really matters. The strongest fear is that it wont work.

My GP will help me to schedule an optic/sight test and en QT-test(heart) test before and after though so that is out of the way. I also need to figure out a viable plan on how to take this as I dont have any 50mg and they are not supposed to be cut. But I really do not think of that as a big issue. I mean, it will no matter what dissolve once its in your stomach, right?

I know I worry to much but Im also currently suffering from benzo-withdrawl. I´ll tell you its not easy.

Anyway. Im not really here to whine. Ill rather thank everyone on this forum who´s investigative mindset and guinea pig like mentality has led me to try this shit out for myself.

I will conscientiously fill out the forms when I start my "trail" with Trobalt, but I cant say for sure when.

It will also be very interesting to follow you @preslys for the next couple of weeks to see if it has some lasting effects after such a short timespell on the drug.

 

[nills]

I got 168*200mg and 63*100mg Trobalt freshly flown in from Spain.
The only thing stopping me from taking it right away is fear!
Fear of the sideeffects, fear of interactions with other medication Im currently on.
Fear cause my GP is strongly opposed to it.
But non of this really matters. The strongest fear is that it wont work.

My GP will help me to schedule an optic/sight test and en QT-test(heart) test before and after though so that is out of the way. I also need to figure out a viable plan on how to take this as I dont have any 50mg and they are not supposed to be cut. But I really do not think of that as a big issue. I mean, it will no matter what dissolve once its in your stomach, right?

I know I worry to much but Im also currently suffering from benzo-withdrawl. I´ll tell you its not easy.

Anyway. Im not really here to whine. Ill rather thank everyone on this forum who´s investigative mindset and guinea pig like mentality has led me to try this shit out for myself.

I will conscientiously fill out the forms when I start my "trail" with Trobalt, but I cant say for sure when.

It will also be very interesting to follow you @preslys for the next couple of weeks to see if it has some lasting effects after such a short timespell on the drug.

This sounds like a very healthy and sensible fear that shouldn`t just be overcome with courage but intelligence and knowledge. You got past the hardest part which is obtaining it. And when my GP was reading the side effects he said they were nothing abnormal for these drugs... it is just the question will you want to experience them ... so read about it, inform yourself, speak to doctors/neurologist and than make decision. I would care mainly about interaction with other meds ... here is a list.. and the source... all the best!


The following medicines may interact with Trobalt:

• carbamazepine
• clobazam
• clonazepam
• digoxin
• gabapentin
• lamotrigine
• levetiracetam
• oxcarbazepine
• phenobarbital
• phenytoin
• pregabalin
• sodium valproate
• thiopental
• topiramate
• zonisamide

The following types of medicine may interact with Trobalt:

• anaesthetics
• medicines that prolong the QTc interval

If you are taking Trobalt and one of the above medicines or types of medicines, make sure your prescriber knows about it.

 

[Geo]

@nills
at the beginning you had an improvement, but what I see now it is not the case. Am I right ?

How long have u had T .. Seems like people with months with T get he most relief.

 

[Geo]

I got 168*200mg and 63*100mg Trobalt freshly flown in from Spain.
The only thing stopping me from taking it right away is fear!
Fear of the sideeffects, fear of interactions with other medication Im currently on.
Fear cause my GP is strongly opposed to it.
But non of this really matters. The strongest fear is that it wont work.

My GP will help me to schedule an optic/sight test and en QT-test(heart) test before and after though so that is out of the way. I also need to figure out a viable plan on how to take this as I dont have any 50mg and they are not supposed to be cut. But I really do not think of that as a big issue. I mean, it will no matter what dissolve once its in your stomach, right?

I know I worry to much but Im also currently suffering from benzo-withdrawl. I´ll tell you its not easy.

Anyway. Im not really here to whine. Ill rather thank everyone on this forum who´s investigative mindset and guinea pig like mentality has led me to try this shit out for myself.

I will conscientiously fill out the forms when I start my "trail" with Trobalt, but I cant say for sure when.

It will also be very interesting to follow you @preslys for the next couple of weeks to see if it has some lasting effects after such a short timespell on the drug.

I was also very scared but my T just kept getting louder and louder in a short time and i couldnt physically take the in the pain and severe ringing with severe H and basically came to the conclusion that i needed to take it and see if it works ..

 

[grate_biff]

If you are taking Trobalt and one of the above medicines or types of medicines, make sure your prescriber knows about it.

Well, my GP knows, but I dont think she will take any part of it.

Im on Remeron(for sleep) and Efexor(AD) and the occasional Diazepam so I guess Im in the clear. Even though all drugs ending on -pam is a benzo and in many ways basically the same drug I think, but what do I know.

Thank you @nills !!

 

[grate_biff]

I was also very scared but my T just kept getting louder and louder in a short time and i couldnt physically take the in the pain and severe ringing with severe H and basically came to the conclusion that i needed to take it and see if it works ..

Yes, you cant get away from tha fact that it is desperation driving us to do this. But I cant wait to say to myself: "What the hell", and pop one. Just need to be a little bit stronger mentally first!
As nills says, Im over the hardest part, obtaining it. But it really wasnt that hard. A friend in Spain is all it takes really. Costly affaire though!

 

[nills]

Well, my GP knows, but I dont think she will take any part of it.

Im on Remeron(for sleep) and Efexor(AD) and the occasional Diazepam so I guess Im in the clear. Even though all drugs ending on -pam is a benzo and in many ways basically the same drug I think, but what do I know.

Thank you @nills !!

I would advice you to see a neurologist. I don`t know your situation but Arn`t these medecins already helping you in some way? Trobalt is not a cure nor is it yet proven to very be effective in all cases ..

If you take these drugs already and I imagine the high I get from Trobalt on top of it you would just be knocked out unable to relate and operate in this world ... seriously ... yesterday I was eating in a small park and Trobalt started ... It really hit hard, little blurred vision, rapid eye movement, wobly on my feet and my brain was just a bit blobby ... I decided to leave this little square of grass I was sitting which has 2 small entrances and has like a 50 cm heigh and wide bush around it ... for some reason I didn`t take the exits and decided to walk in a straight line to my bike ... for another reason I decided to jump the bush ... of course I only made it half way standing with one foot on the gravle and the other in the bush ... I`m pretty athletic and felt ... whats the word again ... stupid! ... thats trobalt for ya

 

[grate_biff]

I would advice you to see a neurologist. I don`t know your situation but Arn`t these medecins already helping you in some way? Trobalt is not a cure nor is it yet proven to very be effective in all cases ..

If you take these drugs already and I imagine the high I get from Trobalt on top of it you would just be knocked out unable to relate and operate in this world ... seriously ... yesterday I was eating in a small park and Trobalt started ... It really hit hard, little blurred vision, rapid eye movement, wobly on my feet and my brain was just a bit blobby ... I decided to leave this little square of grass I was sitting which has 2 small entrances and has like a 50 cm heigh and wide bush around it ... for some reason I didn`t take the exits and decided to walk in a straight line to my bike ... for another reason I decided to jump the bush ... of course I only made it half way standing with one foot on the gravle and the other in the bush ... I`m pretty athletic and felt ... whats the word again ... stupid! ... thats trobalt for ya

Been on them for years due to a long history of depression. Tried to taper off of them many times, but always had to crawl back on them again. I will prepare myself as best as I can, thats all I can really do. I am actually in contact with a girl working at my local pharmacy. She had a friend that is a neurologist and she would try to make contact between us. But I think it will be crucial to find the right one I suppose. In my country they seem to have little or any knowledge regarding T. Even the so-called T-experts seems clueless.

 

[nills]

Been on them for years due to a long history of depression. Tried to taper off of them many times, but always had to crawl back on them again. I will prepare myself as best as I can, thats all I can really do. I am actually in contact with a girl working at my local pharmacy. She had a friend that is a neurologist and she would try to make contact between us. But I think it will be crucial to find the right one I suppose. In my country they seem to have little or any knowledge regarding T. Even the so-called T-experts seems clueless.

That is what I meant with `you made it past the hardest part` ... obtaining the meds without anyone believing they actually help with Tinnitus or not or losing their license trying to help you. But he can at least advice you and monitor you ... now from a very objective point of view ... if they really think something is truly dangerous or going wrong they can actually tell you ... I`m mean it is our brain we are playing with ... I have the meds i`m taking them and i`m still going to see a neurologist ... it`s all good.

 

[nills]

Ok a bit of succes at 250 mg ... the highest wistle tone has lowered in volume settling in with the lower hissing tone ... it`s a step forward ... also i`m only little high and managing well .. seems my body is getting used to it now after one week ... still hopefull ... oops don`t think about there it is again ... I`m off! ssee ya

 

[Geo]

Ok a bit of succes at 250 mg ... the highest wistle tone has lowered in volume settling in with the lower hissing tone ... it`s a step forward ... also i`m only little high and managing well .. seems my body is getting used to it now after one week ... still hopefull ... oops don`t think about there it is again ... I`m off! ssee ya

250mgx3??? Is it a big improvement ?

 

[nills]

250mgx3??? Is it a big improvement ?

well today I will do 250-200-200 ... so the 250 pill this morning is what i`m referring to. It is actually quit a diffrence in experience. it is lower and now i finally can forget about it. It`s at the level that people say `I have T but if i`m around sound and don`t search I don`t hear it` ... so there is a big relief in my experience of life at the moment ... i`m actually dancing and singing around the house!

 

[Geo]

well today I will do 250-200-200 ... so the 250 pill this morning is what i`m referring to. It is actually quit a diffrence in experience. it is lower and now i finally can forget about it. It`s at the level that people say `I have T but if i`m around sound and don`t search I don`t hear it` ... so there is a big relief in my experience of life at the moment ... i`m actually dancing and singing around the house!

Would you say your T was very severe?? And it lowered it s mild state... So most likely it was the higher dosage at one time that did the trick.. Ima barely going to do 200 200 100 dammit..

 

[Harold]

costco store sells 3 mg pill of melatonin......gaba.....and l theonine......for sleep! seems ok for t sleep

 

[nills]

I have had terrible T moments in the past ... days or nights of horrible sounds that you wouldn`t last very long to be honest ... so I feel that what I have in daily life now is far more bearable but still a big dumper on life ... I hear it always and have trouble really focussing on people or working still I have to go ahead with. But i`m sure i`m not in the highest group of sufferers ... I rate it a 6-7 ... but when I told my ENT she said ... oh so your fine! ... and no, i`m not fine.. So now it is mild bearable and even forgettable sometimes ... I went to the cellar little while ago and usually when i`m there i get depressed with my fate ... now I was just doing what I needed tot do ... sorry for long explenation .. Trobalt gives me lot`s of creativity and pushes my brain in faster mode.

 

[Geo]

I have had terrible T moments in the past ... days or nights of horrible sounds that you wouldn`t last very long to be honest ... so I feel that what I have in daily life now is far more bearable but still a big dumper on life ... I hear it always and have trouble really focussing on people or working still I have to go ahead with. But i`m sure i`m not in the highest group of sufferers ... I rate it a 6-7 ... but when I told my ENT she said ... oh so your fine! ... and no, i`m not fine.. So now it is mild bearable and even forgettable sometimes ... I went to the cellar little while ago and usually when i`m there i get depressed with my fate ... now I was just doing what I needed tot do ... sorry for long explenation .. Trobalt gives me lot`s of creativity and pushes my brain in faster mode.

Im the same way man.. My T is just a monster that keeps growing its not constants it keeps evolving with sounds it sounds crazy but it does idk why... I hope this gives me relief also.. Do you think the severity doesnt matter and all volumes will go mild because of how the trobalt works?? You have given me more hope because it has worked for u you..

 

[nills]

We need to be strong ... but certainly untill next year jan-feb-march ... We will have 1 trial that will deliver - finally - some results ... hopefull for it ... and we will have another safer and more specific medicin on the market if FDA approves it ... Brivaracetam ... let`s not forget that one!

 

[Danny Boy]

We need to be strong ... but certainly untill next year jan-feb-march ... We will have 1 trial that will deliver - finally - some results ... hopefull for it ... and we will have another safer and more specific medicin on the market if FDA approves it ... Brivaracetam ... let`s not forget that one!

The only issue is getting prescriptions. I honestly think they need to treat us with epileptic drugs not antidepressants.

 

[Geo]

The only issue is getting prescriptions. I honestly think they need to treat us with epileptic drugs not antidepressants.

do you think the severity in t matters? or no matter how high the volume it'll go down to mild?

 

[Martin69]

I have had terrible T moments in the past ... days or nights of horrible sounds that you wouldn`t last very long to be honest ... so I feel that what I have in daily life now is far more bearable but still a big dumper on life ... I hear it always and have trouble really focussing on people or working still I have to go ahead with. But i`m sure i`m not in the highest group of sufferers ... I rate it a 6-7 ... but when I told my ENT she said ... oh so your fine! ... and no, i`m not fine.. So now it is mild bearable and even forgettable sometimes ... I went to the cellar little while ago and usually when i`m there i get depressed with my fate ... now I was just doing what I needed tot do ... sorry for long explenation .. Trobalt gives me lot`s of creativity and pushes my brain in faster mode.

Thanks nills for keeping us informed. I am wondering sometimes if Retigabine really closes the potassium channels or just calms down the nerves and brain stem. Like it is with all the benzos. At least it looks like it makes people high. Since research has seen the potential in Retigabine for treating T, I hope and believe it can be more than just calming down the brain for a while.

 

[Danny Boy]

do you think the severity in t matters? or no matter how high the volume it'll go down to mild?

Well, mine was pretty bad and it's lowered it to a managed level.

 

[Geo]

Well, mine was pretty bad and it's lowered it to a managed level.

what was your dose where you saw change?

 

[Danny Boy]

what was your dose where you saw change?

Big change was 400mgx3.

 

[Geo]

Big change was 400mgx3.

did u see anything at 600mg ? im barely creeping onto 500mg today and nothing

 

[Danny Boy]

did u see anything at 600mg ? im barely creeping onto 500mg today and nothing

What 200x3? Nah, nothing.

 

[Geo]

What 200x3? Nah, nothing.

then i got a ways to go

 

[Danny Boy]

then i got a ways to go

You can fast taper up. MPT did it.

 

[Geo]

You can fast taper up. MPT did it.

ill just go like was

 

[Christian78]

ill just go like was

I did up like MPT
1 day 300/day
2nd day was 600/d for 3days i think
and then 300mg