Retigabine (Trobalt, Potiga) — General Discussion

[Zechariah]

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...

Not everyone has ability or education to decide whether to take Trobalt or not. Everyone is responsible of what they say regardless where it happens (internet or real life). You should know this basic stuff.

 

[Christian78]

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...

I took it, and was tested, last test done 12 days ago, complete blood work.

 

[Christian78]

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.

People in pain decide is it worth, when you have more gain than side effects it is worth, so for you maybe it is not worth but for Daniel is worth becouse it helps him and he has no side effect so that medicine is good for him. Bad side of thaT MEDICINE IS THAT TWISTES ONCE personality, i know it on myself, one moment you fry other you are down, next you say stupid thing, and again it gives ... everyone has right to do what their wishes.

difference of opinion of me and danny was praising the medicine and saying it is cure when he knew it did not cure him.

Now I think subject is ended, is in the past, no one is going to tell you take trobalt it will cure you, you may hear try trobalt it might help you (and add what written above with help of doctor (and doctors don't want to help, in Sweden they told me such drug does not exist))

 

[Christian78]

It's complicated cause trobalt has been tested for very acute phase on the mice...So it could be a good preventive measure.

Well good for mice, they been cured by autifony too!

 

[Leon909]

wow, this discussion is taking a lot of twists and turns.

Anyways, I was wondering if anyone other than preslys and papu has tried taking Trobalt together with Neurontin. Did any of you try it and what were your experiences (effects, side effects)? I'm considering trying it.

 

[Twitch]

I've recently had an increase in my T and wanted to give Trobalt a try. If anyone can help me get Trobalt or point me in the right direction, I would appreciate if you could drop me a PM (use this link to PM). Thanks!

 

[Christian78]

Not everyone has ability or education to decide whether to take Trobalt or not. Everyone is responsible of what they say regardless where it happens (internet or real life). You should know this basic stuff.

point was not to know or not to know, point was to maipulate by saying it is cure.

you can add me to that list as #1, anyway.

no one is citisizing Trobalt, you may have or not benefits or side effects, but it is not fair to claim it is cure and play a role of cured person advocating use of medicine. Only period of time is in the question not trobalt itself as medicine. And every medicine made by west have good a nd a lot of bed sides, but doctor gives you one if he thing good outweights bed sides.

 

[Christian78]

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...

Not how discredit a drug! Drug will always have same effects or not, we can add experience how to use it or not, well i at least started aug 2014. I survive urinating blood, and kidney stones, and memory holles, waking up in middle of night and hitting my head against walls because trobalt knock me and i dont know where i am and i want to go to toilet, i tried stopping it so i had 1 month of paresthesias and restless legs syndrome and after that i cant sleep without my socks.

I seen what is trobalt, when you need to buy something but you can not write it down by your hand. I know what is trobalt and what it can be. Going to toilet to pee and have a smell or rotten fish. But it was giving me chance to sleep. Now less as my condition worsened for 11 time. I have tinnitus but I dont know what is in the behind of it and I will not say I have it bad becouse of trobalt. I have been diagnose with retina color change too.

In all this i said not that trobalt is fault, it is just Gods wish that I shell end this life in suffering and progressively fast. Now just a 14 months ago i was going to gym and aet a diferent food, not i cant eat almost 99%, i eat chicken, eat pasta potatoes, tomatoes, no seasoning, no aditives, plane like plastic food.... this is not life, nor it is surviving... this is plane existence in hell on earth

 

[Blackbird26]

 

[Philemon]

nothing has been proven @nills. sorry it didn't help you but it has helped other people on this forum (including me).
what i don't get is why people want to generalize their own experience with (and limited knowledge of) the drug, in an effort to dissuade others from trying something which may help them. this is going to be a problem for us, because the people who have been helped by interventions will gradually stop coming to this forum, but there seems to be a constant supply of would-be Cassandras.

The more I'm reading this thread, the more I feel like what Locoyeti said in the quote above, especially when he talks about the "constant supply of would-be Cassandras"

you can add me to that list as #1, anyway.

I don't know you but with all due respect, I think Mithrandir is right when he says this thread is becoming about "how to discredit a drug" (at least it tends to turn like that) ... I mean, if I remember well you had to quickly stop your trial with Trobalt and didn't take it for so long (even if you started to feel some improvements), so maybe your opinion is a bit biased, don't you think ? ... or you should elaborate a bit more on which basis you are criticizing the use of Trobalt. I saw your last posts about the comparisons between Trobalt and Benzo/GABA-drugs (this one for example : https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-242#post-163682) but reading it, it was still unclear to me why researchers are still targeting kv7 channels and not benzos anymore (not denying that GABA plays a role though), and why there's so many people trying trobalt and coming back saying it deeply affected their tinnitus (see this post for example, for a summary : https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-239#post-162538) while it's definitely not the case for benzo/GABA-drugs ?? (and there's a lot of people taking benzos on this board and a lot of dedicated threads, such that there is enough room for such kind of testimonies, but still I don't see anything like this)

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.

The same goes for this comment : on which basis can you state that trobalt's side effects are not worth it ??
"would-be Cassandras" ?? Look, I have read all the thread, and all I can say is that all the fear about the side-effects for a short-term use (say 2 or 3 months) have been way, way overestimated ...while in the same time
the possibility of relief have generally remained underevaluated on this thread (again, look at those figures, for what they are worth of course : https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-239#post-162538)

As for my personal experience, you can read here for a summary : https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-219#post-147579

I would add 2 things : first, the only side effect I experienced was to be a bit high for something like one hour after 300 or 400mg; second; if one doubt about my "results", let me just add the following : before starting Trobalt, my tinnitus was "measured" at 11khz and 44dB, 2 weeks ago I've just done the same test and my tinnitus has been measured at 6khz and 28dB ('it's a long-lasting results, in the beginning with Trobalt, my tinnitus was even better than that)

I just let you think about that ...

As
@locoyeti
once said, I think we need more digging, not "would-be Cassandras", but I'm afraid that, after "Danny Boy's case", this thread will be populated by people who will just share their fear or fantasies about this drug, rather than their true experience ...

 

[Blackbird26]

Not everyone has ability or education to decide whether to take Trobalt or not. Everyone is responsible of what they say regardless where it happens (internet or real life). You should know this basic stuff.

Ok I lied ^^^ Cause this is by far the most ridiculous comment I've ever read.."you should know this basic stuff" uhhh you should know that everyone is responsible for their own actions and no one is forcing Tro down your throat and yes everyone does have the " education or ability" (whaaat??!!!) to decide to take Trobalt or not..Carry on...also Team Dr. Danny ;p

 

[RaZaH]

before starting Trobalt, my tinnitus was "measured" at 11khz and 44dB, 2 weeks ago I've just done the same test and my tinnitus has been measured at 6khz and 28dB ('it's a long-lasting results, in the beginning with Trobalt, my tinnitus was even better than that)

This is a problem with a lot of these posts , I have no idea when you say you have had results if these results while on Trobalt or after stopping , huge difference. Not a stab at you, just saying in general trying to make sense of all this is maddening.

Would make sense to make a thread that somehow makes sense of all this..if its possible.?

 

[Philemon]

This is a problem with a lot of these posts , I have no idea when you say you have had results if these results while on Trobalt or after stopping , huge difference. Not a stab at you, just saying in general trying to make sense of all this is maddening.

Would make sense to make a thread that somehow makes sense of all this..if its possible.?

Sorry if I'm not clear enough. The 44dB/11khz has been measured before I started Trobalt (in the beginning of November 2014). My current tinnitus (28dB/6khz) has been measured recently (February 2016). At my "best with Trobalt" (December 2014-February2015), my Tinnitus was even better than my today 28dB/6khz. I would rate my tinnitus today between 1/10 and 2/10; and I would rate between 0.5/10 and 1/10 the tinnitus I had "at my best with Trobalt". My tinnitus before starting Trobalt was between 3/10 and 4/10. I hope I'm clear enough this time

 

[RaZaH]

Yes, very clear , thank you . Just a detail out of curiosity , what was your dosage and duration of taper up to that dosage ? Hope i am not being annoying

 

[locoyeti]

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 ?!

i did two courses of am-101 (the second had the real drug). i didn't note any drastic improvement (unlike RTG), and now going on 2 years later, i regret having done it. the entire thing is a big ordeal, and having injections in your ear, while safe, is not fun at all. given the wide etiological diversity for tinnitus, i am unsure as to whether my experience can be generalized, and perhaps there are some people that might benefit from it, so i've refrained from panning it on the am-101 thread (in my mind, it would mostly be people with overactive cochleas - and it is an open question as to how many people with tinnitus fit that category).
if you do go through with it, tell the dr. that injects it to take all the air out of the syringe - the last bit that goes in your ear, if there is any air in the syringe, is not a fun experience.

Would you be willing to talk about your experiences with Trobalt so far ?

i think it might be a good idea to create a youtube channel and do some informal exit interviews with each trobalt trailee that wishes to participate. maybe some group google hangout. i enjoyed listening to @Danny Boy 's youtube interview, and i agreed with most of what he said, and it was probably informative to someone that wanted to get a feel for RTG.

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.

my unsolicited opinion is that if you are going to take RTG, then the sooner you take it the better will be your results.

 

[linearb]

I don't know you but with all due respect, I think Mithrandir is right when he says this thread is becoming about "how to discredit a drug" (at least it tends to turn like that) ... I mean, if I remember well you had to quickly stop your trial with Trobalt and didn't take it for so long (even if you started to feel some improvements), so maybe your opinion is a bit biased, don't you think ? ... or you should elaborate a bit more on which basis you are criticizing the use of Trobalt. I saw your last posts about the comparisons between Trobalt and Benzo/GABA-drugs (this one for example : https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-242#post-163682) but reading it, it was still unclear to me why researchers are still targeting kv7 channels and not benzos anymore (not denying that GABA plays a role though), and why there's so many people trying trobalt and coming back saying it deeply affected their tinnitus (see this post for example, for a summary : https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-239#post-162538) while it's definitely not the case for benzo/GABA-drugs ?? (and there's a lot of people taking benzos on this board and a lot of dedicated threads, such that there is enough room for such kind of testimonies, but still I don't see anything like this)

Yes, I am biased, just like every other person with an ego and a personality.

Kv channels appear to be important in the generation of tinnitus. I'm not aware of any current research targeting potassium channels for treatment of chronic tinnitus (excluding Autifony, which failed). I believe it is an interesting avenue of research, based on many things, including the handful of positive testimonials in this thread.

GABAergic drugs are well known to temporarily reduce tinnitus in some people (including myself).

I have no problem with people making informed decisions and taking whatever drugs they want under the guidance of a trained medical professional. I have a serious problem with people playing doctor over the internet, and if you read through my numerous responses in this thread, you will see that is where the bulk of my complaints have been.

 

[Nucleo]

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.

Those treatments are not out in the market yet. They cannot possibly be far better options.

 

[uae96]

Ok I lied ^^^ Cause this is by far the most ridiculous comment I've ever read.."you should know this basic stuff" uhhh you should know that everyone is responsible for their own actions and no one is forcing Tro down your throat and yes everyone does have the " education or ability" (whaaat??!!!) to decide to take Trobalt or not..Carry on...also Team Dr. Danny ;p

Agreed ,

"Not everyone has the education and ability " - @Zechariah
What are we ? 3 year old babies ?

 

[locoyeti]

Yes, I am biased, just like every other person with an ego and a personality.

Kv channels appear to be important in the generation of tinnitus. I'm not aware of any current research targeting potassium channels for treatment of chronic tinnitus (excluding Autifony, which failed). I believe it is an interesting avenue of research, based on many things, including the handful of positive testimonials in this thread.

GABAergic drugs are well known to temporarily reduce tinnitus in some people (including myself).

I have no problem with people making informed decisions and taking whatever drugs they want under the guidance of a trained medical professional. I have a serious problem with people playing doctor over the internet, and if you read through my numerous responses in this thread, you will see that is where the bulk of my complaints have been.

insufferable. not a single person on this thread has been playing doctor. everyone is simply providing their opinions, and on a good day some evidence as well. you are tilting at windmills, you might want to get off your high horse.

 

[Philemon]

Yes, very clear , thank you . Just a detail out of curiosity , what was your dosage and duration of taper up to that dosage ? Hope i am not being annoying

No, not annoying at all ! I did two rounds of trobalt at 900-1200 mg per day, the first one lasted for 2 months and half (from November 2014 to February 2014), then I stopped for two months, and started again for four months (again at 900-1200/day).
About the taper up, I did a fast one, increasing by 300mg/day every 3 days , such that i reached 900mg/day in less than a week

 

[Danny Boy]

Ok. Let me make this clear. I never ever said to anyone I was Doctor Danny, nor do I want to be.I just shared my experience with everyone. I will admit, I never had my tinnitus for like 2 weeks and it came back soon after, I delayed my response for like a week or two. I never did this to gain fame, I was just gutted it came and I was ashamed it of it, as I felt I had an addiction. As for people want to decide to take the drug, most people can read at the top of the page about the dangers of this drug.


"WARNING About Retigabine (Trobalt, Potiga)
DO NOT TAKE THIS MEDICATION unless you have been prescribed it and checked out by a doctor. Retigabine can be very dangerous."

Anyway, I tell people about the dangers of this drug. I've been on it since November 2014 and I feel that I know the side effects of this drug and most of the listed side-effects listed on the side-effects I've experienced.

Good luck to people who take it and I wish everyone well. Much love <3

 

[Mithrandir]

Ok. Let me make this clear. I never ever said to anyone I was Doctor Danny, nor do I want to be.I just shared my experience with everyone. I will admit, I never had my tinnitus for like 2 weeks and it came back soon after, I delayed my response for like a week or two. I never did this to gain fame, I was just gutted it came and I was ashamed it of it, as I felt I had an addiction. As for people want to decide to take the drug, most people can read at the top of the page about the dangers of this drug.

The question is : "TROBALT is addictive or some persons are addict to TROBALT on this thread ?"

 

[gintas]

http://www.pnas.org/content/112/47/14723.abstract here is mentioned trobalt . related to hyperacusis

 

[attheedgeofscience]

I have a serious problem with people playing doctor over the internet, and if you read through my numerous responses in this thread, you will see that is where the bulk of my complaints have been.

Yes... yes... I have noticed that... Not only do you - yourself "play doctor" dispensing opinions ad nauseam - you are also not afraid to question the very few doctors we actually on-board here at TT. A couple of examples:

The main risks of not sleeping are just being tired, unless you're chronically sleep deprived over a really long period of time. As someone who's taken it, I have to respectfully disagree with @Dr. Ancill , I think the risks of this drug are much more severe than the risks of insomnia, even at a low dose. (Granted, if you are sleep deprived, don't drive a car).

@Dr. Ancill I am also curious what led you to the conclusion that this is a "mild" medication. Compared to what? Thorazine?

Now, as for terminology, Neurontin - the drug in question below - is not a psychiatric drug; it is a neurological drug.

So... why ask people on the internet where to get powerful psychiatric drugs, instead of consulting medical professionals with direct experience prescribing and managing them?

And that would be the 2nd I time I remind you of this differentiation (psychiatric vs. neurological drugs). Here is the first:

Trobalt is not a psychiatric drug.

If the hard working staff here at TT ever decide to hand out badges (like my "advocate" badge) for the roles of "wannabe expert" or "armchair critic" I will keep a good thought for you.

 

[Stotoph]

@attheedgeofscience I remember somewhere in this thread that you mentioned, that if you want to taper off Trobalt you have to taper off verryy slowly. Can you explain why that is and what would be a good way to taper off according to you?

 

[Aussie Lea]

Yes... yes... I have noticed that... Not only do you - yourself "play doctor" dispensing opinions ad nauseam - you are also not afraid to question the very few doctors we actually on-board here at TT. A couple of examples:

@linearb (I'm shocked) is known to take acid too.

I was able to remember my earliest sounds heard in the womb, but, to be fair, doing so required a lot of LSD and tantric sex.

 

[attheedgeofscience]

@linearb (I'm shocked) is known to take acid too.

Add a "bit of weed" to that...

Yeah, I really have no idea -- I definitely smoked a lot of weed in the years leading up to T, but I know people who got T over the same timeframe with no weed, and I know a lot more people who smoked a ton of weed and don't have T.

...and now you know why I sometimes have trouble dis-entangling side-effects from the various drugs people are taking.

 

[attheedgeofscience]

@linearb (I'm shocked) is known to take acid too.

Given that there are two variables at play - tantric sex and LSD - I guess we shall never know which one actually contributed to the distant memories from the womb...

 

[Mithrandir]

@attheedgeofscience the only one drug I take until trobalt is this :



I hope I will be blue before Danny ;-)

 

[RaZaH]

Hey, here's an idea , how about we use the Trobalt thread for discussions about trobalt and drop the Ad Hominem's?