Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
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My mistake did not read the entire thread before respondingThe blue hands images are a joke. No need to quote dermatological studies
So Dan you've been on it for a year then you stopped. Then you've been on it for...? Then you stopped again. Now you're on it again.
Can you explain why and how long tou have been on Trobalt the previous times.
Have you triwd tapering down slowly instead of stopping cold turkey?
I don't know what that means man.
You seem to talk in riddles it's getting a bit annoying.
Danny you seriously should not post in this thread anymore.
You are contradicting yourself beyond crazy!
Not meaning to be rude but you are just adding to confusion of those who are desperate to get some valid feedback!
No. You're right. I am confusing people. I will say one thing. Trobalt is addictive and it can control your life, as in, the high feeling, the help it gives you to sleep and the control you have over tinnitus. It's addicting. I hope you can understand why I am confused and annoyed at the same time. Something so dangerous can be so lovely. I just wish SF would come out. I'm just as confused.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
@Danny Boy is someone who derives his personal identity from posting success stories about Trobalt. Probably a sign of loneliness (in the real world) which he counters by seeking "Internet fame" on TinnitusTalk (in the virtual world).
Here are a couple of clues:
(The absence of a refuting statement by @Danny Boy kind of says it all).There is few of us where he came and open up and tell he said so he would be success and make him interesting so he would be asked meny question and become "dr." danny
To which @Danny Boy replied:
I am not sure why certain members of this forum are so slow to pick-up on this: it's been pretty evident to myself for at least the past 6 to 8 months...
Lastly, if you do a search on the word "Trobalt" under @Danny Boy's name, you will - at present - get 596 listed items. For myself, you will "only" get 201 (and that's despite me being the "spokesperson" for the various initiatives here on the forum e.g. the petition to the ATA).
Quoting myself a few pages back, I said the Internet is a scary place. I mean that. With enough perseverance and desperation, it is possible to bait people into just about anything: taking drugs, buying useless books, gambling, bullying etc.
Who knows how many people @Danny Boy has tricked into trying Trobalt on a potential false basis.
Well I tried it after a long skype call with Danny. But I don't think it was on a false basis.
Anyway I tried Trobalt it worked fucking great. Amazing. Then suddenly the side effects got to weird for me. Now I'm going to stop cold turkey for 2 days to see if the side effects will go away.
So I'm going to be honest. Does Trobalt work? Yes.
Is it worth all the side effects? No.
Anyway I tried Trobalt it worked fucking great. Amazing. Then suddenly the side effects got to weird for me. Now I'm going to stop cold turkey for 2 days to see if the side effects will go away.
So I'm going to be honest. Does Trobalt work? Yes.
Is it worth all the side effects? No.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
You have to differentiate between permanent and non-permanent side-effects. In this regard, Trobalt probably has an okay safety-profile (for a short term course of e.g. 2-3 months). Remember: Trobalt was designed to be taken on a daily basis (as it is geared towards epilepsy and hence requiring a daily regimen of intake).
The reason I posted the images of the blue hands is because I got tired of all the whining I see in this thread. I have myself been on 1200mg per day for a couple of months without any significant side-effects.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
That's exactly what I tought in the beginning as well. I was taking 1200 and the only side effect I had was some weird dizziness for 30 minutes after each dose and I could feel my heartbeat. That's it.
Then few days ago I go really sick. 41 degree celcius fever with a cough and flu. I was still taking Trobalt but it got really fucked up. I got so many weird side effects and it's still here even after I got better. So I don't know if it was a mistake to take it while having a crazy fever or something else happned.
Mithrandir
Member
- Nov 17, 2015
- 336
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- Acoustic Shock Disorder (TTTS)
Taking Trobalt it's like when Indiana Jones was looking for the "Holy Grail". You have to be brave, smart, adventurer, and overall calculate the risks & benefits. Take some risks for a good reason & have enough "balls" to don't go back when you think "something weird happens"...
Trobalt is a safety drug, we make short trial with it and when I read the side effects, it's not worse than them from Zolpidem ! So yes, this thread is beginning full of non interesting post...unfortunately !
But I have one question...if someone can respond to me...I'm making a run of Trobalt, but I have the possibility to try AM-101 until the 24th of march...what a dilemma ?!
Would you be willing to talk about your experiences with Trobalt so far ?
I am assuming its doing its thing since you have been on it for a couple of months ?
What whining ? I might have missed it ?
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
I dont think Danny tricked anyone to buy trobalt but there vere people trying to get it and when they hear about that trobalt is not permanent fix or whater told me they dont want trobalt.
What we discussed was that danny boy was not cured, he just said he was cured, and then on a moment autifony failed he came out and said his tinnitus came back. He said he is not using Keppra he lost hyperacusis but he did not stopped keppra in that moment when it was all about keppra he was using Keppra.
Entire point is this: giving people hope and telling his fake success story while knowing he was actually same as other people who were using trobalt, while on it better. He claimed it is cure, not remedy. And then he worked the sorry up that he became banned on facebook for tinnitus, and well.
I just consider morally wrong giving false hope to a person who suffer because that person would feel good in short period of time and praise the person who gave him information about cure. And then suddenly take hope away and say tinnitus returned while it actually while it never went away. It was not fair. I think also people deserve to know that they have been fed false information. I understand you want safe ATA petition and it is not good to have progress rappost that is false.
But truth is trobalt monitoring form is false. Maybe that is normal becouse maybe all of them have some margin of false.
It is also not ok, i think, that Daniel comes and say I am sorry but my tinnitus come back 8 months before and all is forgiven.
Anyway m tinnitus got worse to next lvl 4 days ago and all this for me has no point. I know for myself what happen is that it is NOT OK. Not fair.
And if we are going to take logic well daniel advocated use of trobal and there is good in it.
To add it is different that I took it because i heard it might help. he took because it might help etc
and big difference is I got cured try it.
I hope member of the TT forum can read it and understand, no one has to choose side, as there is no side, except side against Tinnitus we are all on. I hope people can read and think about it, they can leave a comment.
like:
@Nucleo
@valeri
@amandine
anyone who think he might say something
I don't advise cold turkey becouse it causes strong parestesias, plus sudden stop may trigger syndrome of restless legs that may be permanent.
Mithrandir
Member
- Nov 17, 2015
- 336
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- Acoustic Shock Disorder (TTTS)
This topic is becoming "how to discredit a drug". I'd like to know the number of people who are criticizing Trobalt are taking/took Trobalt under the supervision of a neurologist...
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
I don't blame Danny boy , he can say what ever he wants, that's why the Internet is a scary place , and yes I agree he always says different stuff about Trobalt but at the end it's YOURE choice if you wanna take Trobalt or no , all up to you're responsibility and research and not basing other people experiences on the outcome , everyone has different results so the only way you'll know if Trobalt will benefit you is by trying it YOURESELF and not relying on other people such as Danny boy etc...
Depends on where you live. I haven't tried trobalt myself, but I see you're in a very early stage to tinnitus, so I would strongly suggest you to not try trobalt because the side effects are not worth it at this point. Many people here may disagree with me, but I believe in our bodys ability to recover. Give it time before you do anything drastically. Again, this is only my opinion.
Mithrandir
Member
- Nov 17, 2015
- 336
- Tinnitus Since
- 10/2015
- Cause of Tinnitus
- Acoustic Shock Disorder (TTTS)
It's complicated cause trobalt has been tested for very acute phase on the mice...So it could be a good preventive measure.
Maybe if you take trobalt right after the onset of tinnitus, then yes, but there are far better options in the treatment of acute tinnitus, like AM-101.
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