Retigabine (Trobalt, Potiga) — General Discussion

[Nucleo]

Mpt does not post here anymore so we dont know where he is at with T do we?

He did come back and posted he didn't have T anymore.

 

[LetyO]

Hey, did another trial yesterday, this time 40mg Cinnarizine + 100mg Trobalt, it seemed to potentiate Trobalt effect, as i felt like 200 trobalt. Just before going to sleep took another 100mg trobalt
This morning i feel quite tired. helped to sleep very fast. As cinnarizine is not ototoxic and quite safe maybe i will do this mix again.

I am really interested to find out if the results are consistent with this combination. Cinnarizine increases cerebral blood flow which may increase Trobalt availabity to the CNS. I will look into this more - it may also have to do with blood pH, decrease in protein binding, etc. It's not available in the US but can be pruchased via Canadian pharmacy. Thank you so much for taking the chance to try this out.

 

[Yo-Han]

ATEOS i do too, so many opinions and people, the whole damn world.
That is an official article of the US government (or am i wrong). Combine it with the official FDA warnings about RTG and we know that it is a fact that RTG is not a very safe drug and quite a bit risky for some. AND the effects vary strongly inbetween persons. That was my main motivation to post that article hence the text in bold. Psychiatric drug or not... i didn't mean that so precisely, but aimed more at the 'mind altering' part of a serious CNS depressant. If you want to call all of CNS drugs that, be my geust. A simple light painkiller can alter your mind to become happier to be in less pain.
So let us just call RTG a 'kind off nasty' AED drug with not to be taken lightely possible side effects. I recoginize certain error in my recation to put certain CNS meds into 'one big' category.

I''m not here to fight wars with words or judge people. Peace out. I like to respect ALL T sufferers and their views. But safety is always important when talking meds like this or when we're talking any care giving profession that involves 'risk'. Ones personal SAFETY is important here. It's easy to say: take this dangerous stuff, but you've read the banner so if you get in trouble... not our repsiblity, but your own. YUP the internet at some times!

The responsibilty should be a doctors one and most likely a neurologist. Most likely a caring one for your personal and genaral well being. And if he/she says no, they might not be an insensitive pesrson... they might have a good sensible reason too! I'm not doubting RTG lowers T for a bunch of us (wether temporary due sedative effect or forever due neuroplasticity is another discussion)

 

[attheedgeofscience]

People who worry about side-effects either do not have very severe tinnitus or are people who had better get themselves a tricycle to play with:

In addition, I suggest that those who wish, read my account from my 2nd stem cell treatment some almost two years ago (puts things into perspective, as they say...) - the account reads (in part):

Experimental medicine is - as stated - unproven. Essentially it is a bit like throwing mud at a wall, and hoping that some of it will stick. It's a dirty job. And indeed it did get messy with my second stem cell treatment in China. When I had my 3rd round of injections, I had apparently developed antigens against the stem cells. When that happens and you inject something directly into the blood circulatory system, the result will not go un-noticed. Within 30 seconds, my pulse went off-the-chart and I was sweating like someone with a 40 degree fever. I was "sick as a dog". The nurse did not understand what was happening. I knew exactly what was happening. I therefore squeezed the transfusion tube to prevent any more flow of stem cells. And sounded the alarm. Within 15 seconds, there were 4 nurses and 3 doctors in my room trying to figure out "what to do". I was on a regular ward, but fortunately the chief nurse from the advanced surgery ward also responded to the alarm. Coming from the 7th floor, she arrived 15 seconds after the first set of staff, pushed them aside, and started to "work on me". I was in intensive care for 3 hours.

 

[Yo-Han]

Dear ATEOS now we are truly finished discussing. I suffer from pretty severe T, TMJ pains and level 3 H if i got to give that a score.
I'm not here to insult. You seem te have taken something like an insult in my post considering your very immature reaction (the image). I'm not trying to insult here. But if its taken like that i'm out this topic/discussion.
A very out of the blue rection also. Otherwise i'm not even gonna ask why. I've read the whole damn half of the forum allready an many articles about stem cell research. Good bye and good luck, this ends here for me!

 

[linearb]

People who worry about side-effects either do not have very severe tinnitus or are people who had better get themselves a tricycle to play with:

If you don't think that even people with severe, intrusive tinnitus can be irreparably damaged by drugs, you do not know what you're talking about and for your sake I hope you never find out.

You do know that there's a case in the literature of someone who ended up pissing through a catheter for the rest of his life as a result of trobalt use... right?

 

[attheedgeofscience]

If you don't think that even people with severe, intrusive tinnitus can be irreparably damaged by drugs

Well... that quite clearly is not the argument I am presenting. I leave it to yourself to figure out what the point of my argument is...

 

[attheedgeofscience]

You do know that there's a case in the literature of someone who ended up pissing through a catheter for the rest of his life as a result of trobalt use... right?

No... I didn't know (although I am aware of urinary retention issues with Trobalt). What I do know, however, is that in addition to my own account above from my 2nd stem cell treatment, I actually asked the doctors of the hospital to inject me with my 4th round of stem cells despite the obvious consequences (i.e. another intensive care unit stay). Of course, they - the doctors - refused.

 

[papu]

You do know that there's a case in the literature of someone who ended up pissing through a catheter for the rest of his life as a result of trobalt use... right?

It's only one case and trobalt has been out since 2013 I think? Unless you know him personally and he has died or have a crystal ball you can not say such strong words as he will piss through a caterer for all his life . Maybe he has already recover or had as yourself a preexisting condition that made his experience with trobalt worse. My point is we simply don't know. How many people in the world ingest tons of Trobalt and only one case I don't know it is simply to hard to swallow. If they were 50 cases documented then maybe it would be of some weight.

I also read of one case of retinal detachment of a person taking trobalt but only one case of so many people it's hard to attribute it absolutely with no hesitation to trobalt when retinal detachment can occur without any previous condition in people not taking trobalt and also urinary retention from prostatic problems or urethral strictures that may pre exist and made worst by trobalt action on the bladder.

The point that I am trying to make is that as drugs go there are worst than trobalt and also there are plenty of drugs with less side effects than trobalt . I am not advocating the use nor making it out to be the devil's pill. I am just telling people to read about the risk and make their own desicions hopefully with the help of their personal doctors.

 

[papu]

So... I have joined the folks trialing Trobalt

post in partipants experience so we can see your progress...

 

[LetyO]

Keep in mind that even "harmless" medications can generate an idiopathic adverse reaction. We are all adults and we assume the risks. Most doctors will not undertake such a trail due to liability and ignorance of what they are dealing with. No one is the bad guy here. We are all dealing with a horrible affliction and not advocating the use of potentially dangerous medications but providing alternatives. It's just a matter if the individual is willing to accept those risks (it is each one's responsibility to become informed of their own treatment). I do agree that mixing medications would be best done under a doctor's supervision since we are not sure how they may interreact. I am a Trobalt user under a doctor's supervision. He does not know a thing about this medication therefore I am trying to make a more informed decision by meeting with a neurologist. Knowing what I do about the medical profession in general I am not optimistic

BTW I think it's important that all feel free to post their opinion without criticism. I don't believe anyone is trying to be insulting, just informative. It allows us a chance to view anothers perspective and possibly gives us additional information to help make more informed decisions. No one's suffering should be compared - it's all relative

 

[attheedgeofscience]

A simple light painkiller can alter your mind to become happier to be in less pain.

That's not the point: painkillers of the NSAID-type (as opposed to opioids), do not significantly affect the CNS. So yes, a person may feel better (i.e. what you describe as "can alter your mind") - but we are not talking about the psychology of drugs but instead of how the pharmacological mechanism-of-action works.

For the 2nd time: I hate the Internet. Sometimes...

 

[attheedgeofscience]

post in partipants experience so we can see your progress...

I would prefer to stay out of the loop as I have so-called "author status" - the implication being that an author cannot also be a trial candidate at the same time.

 

[Silvio Sabo]

I would prefer to stay out of the loop as I have so-called "author status" - the implication being that an author cannot also be a trial candidate at the same time.

Your experiences would still be invaluable to the community. So if you can, please share your experiences in any way you can.

 

[Mark662]

I would prefer to stay out of the loop as I have so-called "author status" - the implication being that an author cannot also be a trial candidate at the same time.

But it isn't a "trial", it says in the header on the first page. ATEOS, your experience is valued the same as anyone elses

This is not a trial; it is a way for members to share their experiences which can get lost within the long conversations in the main thread. It is in no way an endorsement for Retigabine, which is an unproven treatment for tinnitus at this time and has potentially serious side effects.

 

[Christian78]

ATEOS i do too, so many opinions and people, the whole damn world.
That is an official article of the US government (or am i wrong). Combine it with the official FDA warnings about RTG and we know that it is a fact that RTG is not a very safe drug and quite a bit risky for some. AND the effects vary strongly inbetween persons. That was my main motivation to post that article hence the text in bold. Psychiatric drug or not... i didn't mean that so precisely, but aimed more at the 'mind altering' part of a serious CNS depressant. If you want to call all of CNS drugs that, be my geust. A simple light painkiller can alter your mind to become happier to be in less pain.
So let us just call RTG a 'kind off nasty' AED drug with not to be taken lightely possible side effects. I recoginize certain error in my recation to put certain CNS meds into 'one big' category.

I''m not here to fight wars with words or judge people. Peace out. I like to respect ALL T sufferers and their views. But safety is always important when talking meds like this or when we're talking any care giving profession that involves 'risk'. Ones personal SAFETY is important here. It's easy to say: take this dangerous stuff, but you've read the banner so if you get in trouble... not our repsiblity, but your own. YUP the internet at some times!

The responsibilty should be a doctors one and most likely a neurologist. Most likely a caring one for your personal and genaral well being. And if he/she says no, they might not be an insensitive pesrson... they might have a good sensible reason too! I'm not doubting RTG lowers T for a bunch of us (wether temporary due sedative effect or forever due neuroplasticity is another discussion)

Doctors dont care. They care for themselves only, not to lose job. What they give you is drug that is supposed to be given for problem one has. I had got some AD Wellbumetrin. From it i got Tinnitus. When i went to court they said doctor gave you this medicine that doctor consider outweighs bad side effects. On the end I got tinnitus, and hell of life, to live rest of it in hell. Doctor who gave me and done it in 12 min talk. I cant do nothing. They just said you got right pill. No one expected that it will kill your life and make it into hell.

 

[attheedgeofscience]

But it isn't a "trial", it says in the header on the first page. ATEOS, your experience is valued the same as anyone elses

I will add my input to this thread; not the experiences thread - that's what I intended to convey. Indeed this isn't a trial, but the data has in the past been collected by researchers for a publication (of which I was a co-author). See the thread related to the petition to the ATA. Also "other data" is being collected here on the forum.

 

[amandine]

I will add my input to this thread; not the experiences thread - that's what I intended to convey. Indeed this isn't a trial, but the data has in the past been collected by researchers for a publication (of which I was a co-author). See the thread related to the petition to the ATA. Also "other data" is being collected here on the forum.

Well anyway how are you getting along with the trobalt? Have you noticed any effect on your T yet and any noticeable side effects? What dose are you on now? and how quickly are you tapering up? thanks as ever

 

[attheedgeofscience]

Well anyway how are you getting along with the trobalt? Have you noticed any effect on your T yet and any noticeable side effects? What dose are you on now? and how quickly are you tapering up?

I will add a more general update at some point (when I have a better overview as to whether Trobalt has any real lasting effect, or not).

Currently on day 6, I am already at 900mg / day. By normal tapering protocol, I should not be at that level before some 5 weeks...

I taper up with about 100 mg / day (based on how I feel). I may stay at 900mg for a couple of days.

Side-effects at this point (i.e. 900mg) are surprisingly tolerable. Better than Flupirtine...

 

[amandine]

Side-effects at this point (i.e. 900mg) are surprisingly tolerable. Better than Flupirtine...

Thank you for your post. And most importantly and the reason for taking this stuff is - has your T lowered at all or is it so low normally that you wouldn't notice a difference?

 

[skoupidis]

An interesting amateur interview, I guess we all know our dear friend If posted before sorry, I just came up with it.

 

[Danny Boy]

An interesting amateur interview, I guess we all know our dear friend If posted before sorry, I just came up with it.

This was done at 6AM in the morning, when I was about to go to sleep. I was simply not prepared. I will say this, I have low tinnitus and virtually no hyperacusis or reactive tinnitus anymore. So really, I've managed to save my life. I won't be talking about drugs anymore, in a favourable light and I aim to get this taken down.

 

[skoupidis]

This was done at 6AM in the morning, when I was about to go to sleep. I was simply not prepared. I will say this, I have low tinnitus and virtually no hyperacusis or reactive tinnitus anymore. So really, I've managed to save my life. I won't be talking about drugs anymore, in a favourable light and I aim to get this taken down.

Why not? I would be interested to know exactly what helped you. But I don't know if you can pinpoint that, I mean is Trobalt alone enough?

 

[Danny Boy]

Why not? I would be interested to know exactly what helped you. But I don't know if you can pinpoint that, I mean is Trobalt alone enough?

I've answered this before. I took a combo of trobalt+keppra. When I was taking trobalt for a few months, I noticed the amplification of hyperacusis just vanished. However, the reactive tinnitus and sound sensitivity remained, so when Viking spoke of keppra I thought I'd try it. I took it and noticed the reactiveness and sound sensitivity vanished. Honestly, I wish I never had to take prescription drugs, but I had little choice. I had tinnitus and hyperacusis really, really badly and this path was my only option.

 

[ady]

I've answered this before. I took a combo of trobalt+keppra. When I was taking trobalt for a few months, I noticed the amplification of hyperacusis just vanished. However, the reactive tinnitus and sound sensitivity remained, so when Viking spoke of keppra I thought I'd try it. I took it and noticed the reactiveness and sound sensitivity vanished. Honestly, I wish I never had to take prescription drugs, but I had little choice. I had tinnitus and hyperacusis really, really badly and this path was my only option.

How was it you managed to get both Trobalt and Keppra, living in the UK? NHS doctors don't prescribe...

 

[Danny Boy]

How was it you managed to get both Trobalt and Keppra, living in the UK? NHS doctors don't prescribe...

Spain.

 

[amandine]

This was done at 6AM in the morning, when I was about to go to sleep. I was simply not prepared. I will say this, I have low tinnitus and virtually no hyperacusis or reactive tinnitus anymore. So really, I've managed to save my life. I won't be talking about drugs anymore, in a favourable light and I aim to get this taken down.

So what is wrong with it? It is the truth - isn't it?! Except I thought that you didn't stop taking it completely the trobalt but maybe I am mistaken. Why does the truth need to be taken down? I did not see it before but just now and I cannot see why it is not allowed on here?

How was it you managed to get both Trobalt and Keppra, living in the UK? NHS doctors don't prescribe...

He Danny Boy says it in the video and it is well documented all over this thread - spain is the main source for trobalt without prescription in europe! Did you listen to the video or maybe english is not mother tongue?
It is bought and sold without prescription for the very reason that people cannot get a prescription in EU or America or even to see a neurologist in their own country in UK.

 

[Dana]

@dannyboy
I find your interview very informative. Please don't take it down.

I won't be talking about drugs anymore, in a favourable light and I aim to get this taken down.

You didn't talk about the drug in a favourable light, you made it very clear that it is dangerous, with very bad side effects, (gave a scary example), "a last line drug", and you started it while having 10/10 , devastating, not livable with kind of T and you would NOT recommend it in other cases. I think what you said was ethical, do not worry about that.

 

[just1morething]

@Danny Boy
Did you wake up from naps and regular sleep with very loud noise like many of us here? Do you think that Keppra alone would help with awakening spikes? Such a terrible way to start out a day. I never really considered Trobalt because of the Black Box warning and some of the bad side effects, but maybe Keppra would be worth a try?

 

[Danny Boy]

@Danny Boy
Did you wake up from naps and regular sleep with very loud noise like many of us here? Do you think that Keppra alone would help with awakening spikes? Such a terrible way to start out a day. I never really considered Trobalt because of the Black Box warning and some of the bad side effects, but maybe Keppra would be worth a try?

Sadly, I can't advise on this as I took them as a combo.