Retigabine (Trobalt, Potiga) — General Discussion

[linearb]

Your Doctors must be the top 10 T-documented doctors in the world. In my case no one would prescribe me absolutly nothing for my T. Just "dont care about it" 200mg.

I visited 6 different Doctors in my acute phase. No one even talked about corticosteroids. Fu** them all.

I don't think my doctors are rock stars, I've just been persistent and seen lots of them. 6? I've probably seen 30 different doctors in the last five years. Yes, I am privileged, because sadly having good insurance is a privilege.

I get that not everyone is in this situation, and I get that many doctors are woefully uniformed on this condition. That's bad, but it's totally orthogonal to the question of whether it's ever a good idea to take unqualified medical advice from the internet.

For all the good medical care I've had, none of it is what has helped me begin to turn the corner on the suffering in my life, I don't think.

I also understand that people with less resources are going to be much harder pressed to turn the corner at all: I don't see myself as a strong person, and I've got a lot of shoulders to cry on (literally, in many cases). People without that are in a tougher spot, but this also makes them more vulnerable.

My only concern here is that vulnerable people who pop drugs they buy online based on well intentioned but unscientific advice without supervision, are at a much higher risk of suffering severe, disabling, potentially lethal effects. As far as I know, no one in this community has died as a result of what's gone on here. This is not the only forum I post on, and I've read more memorial threads than I'd care to.

 

[Christian78]

dear friends , i know i told you that i am finished. I want to tell u that i took 600mg and my t almost disappeared. I try to find it and nothing. Either i am habituated so i can't find them.

I was to doctor psychiatrist asking for help but she was real bad doctor showing how doctors dont know nothing.

 

[papu]

dear friends , i know i told you that i am finished. I want to tell u that i took 600mg and my t almost disappeared. I try to find it and nothing. Either i am habituated so i can't find them.

You mean gone for a few days or you just took it and so far in this few hours it has gone down??????. You have to be a little more specific

 

[1MW]

Last days i have terrible HF T.
I got trobalt but it doesn't work.
Any new working treatment here?

 

[linearb]

dear friends , i know i told you that i am finished. I want to tell u that i took 600mg and my t almost disappeared. I try to find it and nothing. Either i am habituated so i can't find them.

I could say the same thing after taking 2mg clonazepam; I don't think you're habituated, you're just on drugs.

 

[gintas]

Over the past couple years, this forum and these threads specifically have gravitated further and further towards the kind of reckless, thoughtless, desperate drug use which is usually found on places like bluelight, and not on support forums. It frightens me, and so I will continue to be vocal about it for as long as it persists (or until I move on with my life sufficiently to not be posting here, which is looking more and more likely).

yes. because everyone know on this forum that doctors are useless. and doctors themselves know it . for me for instance doctor prescribed Trobalt because i said that on forum i read that it helps.

 

[Stotoph]

I'm so fucking drowsy and feel like sleeping during the day. Even if I've slept for 10 hours it makes feel like going to sleep so bad during the day that I have to fight to stay awake and get this weird brain zaps. This goes on for like 1 hour then it subsides.

I read this on a epilepsy forum:

"My doctor lowered my midday dose and added to my night time dose - this might help for you if you experience the same issues during the day. The only other significant side effect is clumsiness - I've never been a clumsy person but Potiga has caused me to trip and walk into things all the time - I have plenty of bruises Overall, it might seem like a lot of side effects for one med but I have tried a lot of meds to reduce seizures and this has helped immensely. In addition, after being on Potiga for about two months my side effects are beginning to ease. I can deal with walking into tables if it means that I spend the rest of the day seizure-free. Let me know what is going on with you and your Potiga-life."

Has anyone tried doing this?

For example if you are taking 400x3

Morning dose: 500mg
Miday dose: 200mg
Evening dose: 500mg



Has anyone tried something like this?

 

[Christian78]

dear friends , i know i told you that i am finished. I want to tell u that i took 600mg and my t almost disappeared. I try to find it and nothing. Either i am habituated so i can't find them.

I was to doctor psychiatrist asking for help but she was real bad doctor showing how doctors don't know nothing.

Now morning after tinnitus is still here that is expected, but I never believed that will happen a single moment in life where I who is is such pain will have a chance to , i don't know how do describe it, to ... have that wonderful experience of total silence once more in life. This is morning after.

PS/ I am sorry that @dan can not becouse side effects to get this effect as i have

 

[linearb]

yes. because everyone know on this forum that doctors are useless. and doctors themselves know it . for me for instance doctor prescribed Trobalt because i said that on forum i read that it helps.

So, a doctor has been willing to help you, to the extent of prescribing an experimental drug based on your own idea.... And your conclusion from that is that doctors are useless?

The cognitive dissonance in that thought is staggering.

 

[PatrickG]

@linearb you are on the war path now I really appreciate your balanced and rational thinking when it comes to many subjects. In this case I think @gintas ment that the doctor prescribed a very serious drug based on very loose facts. It can be perceived as a bit unserious. At the same time the doctor is doing what she/he can to help. Good and bad at the same time! Personally I think it's good if the patient is really suffering. But it should be done with a protocol and frequent checkups to see the state of the body like blood values, liver, kidneys, eyes and other side-effects...

 

[snow86]

dear friends , i know i told you that i am finished. I want to tell u that i took 600mg and my t almost disappeared. I try to find it and nothing. Either i am habituated so i can't find them.

I was to doctor psychiatrist asking for help but she was real bad doctor showing how doctors dont know nothing.

Well, I am "finished" too....As it happens I took 600MG yesterday before sleep too.
Cause theres no way I could have fallen asleep. Had like 12 different sounds in orchestral volume. (deep drones, rotating machines, high pitched sounds)
This is just f*cked up. Unbeliveable. I cant function anymore and its gettin worse and worse. It is so unstable.

Well my T went to about half volume, so it was quite enjoyable for my level of suffering and I could fall asleep.

BUT I had the weirdest sideeffect. My Brain "forgot" how to breathe automatically. I thought, if I fell asleep now im gonna suffocate. Well this feeling subsided after about 10min and the T came back a bit.

(usual sideeffect: light pains in the urinary areas, harder to pee on next day)

Comparison: 6 Months ago, 400MG at once could silence my 6-8 sounds (back then) for 1-2 hours. (sometimes it didnt work at all).
Now I only take trobalt sometimes and it barely reduces the T and when it does, its for 5-10 minutes before it comes back.
Either my body has built a tolerance for trobalt or my T ist just a too strong 10 headed monster, which cant be beaten even by such brutal drug. :[ ... This drug clearly only suppresses the severe T.

Now it is time for another day of full volume, gettin worse over the day. Hooray.

 

[Christian78]

Well, I am "finished" too....As it happens I took 600MG yesterday before sleep too.
Cause theres no way I could have fallen asleep. Had like 12 different sounds in orchestral volume. (deep drones, rotating machines, high pitched sounds)
This is just f*cked up. Unbeliveable. I cant function anymore and its gettin worse and worse. It is so unstable.

Well my T went to about half volume, so it was quite enjoyable for my level of suffering and I could fall asleep.

BUT I had the weirdest sideeffect. My Brain "forgot" how to breathe automatically. I thought, if I fell asleep now im gonna suffocate. Well this feeling subsided after about 10min and the T came back a bit.

Comparison: 6 Months ago, 400MG at once could silence my 6-8 sounds (back then) for 1-2 hours. (sometimes it didnt work at all).
Now I only take trobalt sometimes and it barely reduces the T and when it does, its for 5-10 minutes before it comes back.
Either my body has built a tolerance for trobalt or my T ist just a too strong 10 headed monster, which cant be beaten even by such brutal drug. :[ ... This drug clearly only suppresses the severe T.

Now it is time for another day of full volume, gettin worse over the day. Hooray.

can I publish our recording somehow, it is half 75%
english and parts swedish....

 

[RaZaH]

Trobalt works in mysterious ways .

 

[linearb]

@snow86 you've probably told me this before, but what effect does clonazepam have on your ringing?

 

[gintas]

p.s.i was to 11 different doctors. have a surgery for that. and nobody except Trobalt helped me. it is pity that i didint used a wisdom of that forum early . just after 6 month i began to use Trobalt. those 6 month was like a live in hell. now i can live almost normal live. sure i don't know how will be in the future. maybe hell is ahead

So, a doctor has been willing to help you, to the extent of prescribing an experimental drug based on your own idea.... And your conclusion from that is that doctors are useless?
.

my experiences are such. and yours is different ? someone helped you ?

 

[monacco]

Yesterday I spent the quietest day since my T started September 2015, at 08:30 pm I took my hunting rocket and a bottle of water before leaving home, I took my first tablet 200mg of Trobalt, after 28 minutes exactly my T almost disappeared so the day started well at 12:30pm I took another tablet despite my tinnitus was zero and I add another tablet at 16:25 pm. in total 600mg made my T absent for the hole of the day, I really enjoyed myself with my friends (02 Hares in the pocket) oh my god give me other days like yesteday.

 

[uae96]

Yesterday I spent the quietest day since my T started September 2015, at 08:30 pm I took my hunting rocket and a bottle of water before leaving home, I took my first tablet 200mg of Trobalt, after 28 minutes exactly my T almost disappeared so the day started well at 12:30pm I took another tablet despite my tinnitus was zero and I add another tablet at 16:25 pm. in total 600mg made my T absent for the hole of the day, I really enjoyed myself with my friends (02 Hares in the pocket) oh my god give me other days like yesteday.

So how's t right now after yesterday ?

 

[linearb]

p.s.i was to 11 different doctors. have a surgery for that. and nobody except Trobalt helped me. it is pity that i didint used a wisdom of that forum early . just after 6 month i began to use Trobalt. those 6 month was like a live in hell. now i can live almost normal live. sure i don't know how will be in the future. maybe hell is ahead

I am glad to hear that you are feeling so much better; it took me a lot more than 6 months to climb out of hell. Maybe taking some Trobalt early on would have helped; who knows! I'll be very interested to hear how your tinnitus settles out after you stop taking Trobalt.

my experiences are such. and yours is different ? someone helped you ?

There are doctors I'll say lots of good stuff about, but I also saw more than 11 doctors. A lot more. And, I do live in a metropolitan area with access to some of the better medical staff in the US in general, which simplifies things significantly.

The people who have been the most instrumental in allowing me to have (mostly) a good quality of life, are mostly not MD-trained doctors. I have walked a myriad path.

 

[monacco]

So how's t right now after yesterday ?

30 minutes after eating the two hares with my freinds My T tinnitus began to fight back ,today is hell as usual.

 

[Mithrandir]

@monacco what is your daily dosage and how you increase it since the beginning ?

 

[PatrickG]

@monacco whats a hare? You mean the animal?

Keeping my hopes up Trobalt will help you longterm!

 

[RaZaH]

I might have said this before but its strange how on certain really bad days (I will know this when I wake up) Trobalt has no effect at all, whatsoever .

 

[OnceUponaTime]

@valeri Hey Val, how are you feeling?? Did the spike go down to base??

 

[Stotoph]

Yesterday I spent the quietest day since my T started September 2015, at 08:30 pm I took my hunting rocket and a bottle of water before leaving home, I took my first tablet 200mg of Trobalt, after 28 minutes exactly my T almost disappeared so the day started well at 12:30pm I took another tablet despite my tinnitus was zero and I add another tablet at 16:25 pm. in total 600mg made my T absent for the hole of the day, I really enjoyed myself with my friends (02 Hares in the pocket) oh my god give me other days like yesteday.

So you took 200mg every 4 hours?

Why did you stop taking it?

 

[Philip]

When you stop taking it does the tinnitus go back to the way it was before or does it actually rebound and become worse?.

I think I would have probably tried it a year or so back but I'm used to it now.

It's an annoyance now that I can currently live with (fingers crossed it doesn't spike in the future again).

I used 2CE last summer when it was still legal where I lived

It's a powerful psychedelic that increases ones ability to hear all the different frequencies of sound that the human ear can pick up.

You'd think as a tinnitus sufferer that would be a living hell...but it actually put my tinnitus in it's proper place as a simple backround noise that should be ignored.

I became much less afraid of it after.

I'm not touting this as a cure but for a lot of tinnitus sufferers habitating is the most difficult thing to achieve.

On any psychedelic ones tinnitus does go up but no extremely like with stimulants.

 

[attheedgeofscience]

it has been proved and stated by the people using on this forum it it is dangerous, not very effective, and temporary ...

"Proof" is something which takes place on a clinical trial.

 

[Mithrandir]

@attheedgeofscience Hi guy, how's your trobalt experiment of january, did you have some good improvements. I think you're one of the most documented person on this website. I'm very curious to know your situation. Now a lot of people take trobalt, and nobody publishes his results... that's sad for the community...
Actually I'm looking for a doctor who'll give me Trobalt...'cause I'm just using neurontin after 4 months since my acoustic trauma.

 

[snow86]

@attheedgeofscience Now a lot of people take trobalt, and nobody publishes his results... that's sad for the community...

What do you mean nobody? For example; I wrote several very detailed posts in this thread about my experience with Trobalt and extreme T but you werent even a member of this board back then.

 

[Mithrandir]

@snow86 I mean only a few people post on "the retigabine user experience". I see different functions for each thread. But at the end the most important for our cause & credibility is the "retigabine user experience" more scientifique. This thread is more like a FAQ with a lot of interesting informations.

 

[monacco]

So you took 200mg every 4 hours?

Why did you stop taking it?

I take trobalt only when I go to the quiet places like forest for hunting ,room conference in my work,quiet public places...)