Retigabine (Trobalt, Potiga) — General Discussion

#7,381
RaZaH said:
Hey, here's an idea , how about we use the Trobalt thread for discussions about trobalt and drop the Ad Hominem's?
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The very minute certain members get their own little "wannabe expert" badge, then I'm good... :D
 
#7,382
RaZaH said:
Would you be willing to talk about your experiences with Trobalt so far ?
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I am not a fan of reporting experiences too hastily. I have had a couple of sporadic experiences (e.g. anything from a couple of hours up to a full day) where my tinnitus has been noticeably better. I don't get any immediate relief after intake of a dose like some members report.

Side-effects are generally mild even at max dose (unless you are a hypochondriac or taking a ton of "other shit" along with Trobalt):
  • Slight cognitive dysfunction: memory loss, spelling problems, ability to construct an argument in worded form.
  • Urinary hesitation (in the beginning).
  • Drowsiness after intake of a pill (lasts for about one hour): excellent as a sleep aid, and, interestingly does not come with the side-effects of real sleep medication like Zolpidem.
 
#7,383
I've never taken drugs before. I've no really bad side effects for the moment. I'm just at 700mg/day to reach 900mg in one week.
I have the same side effect than ATEOS about drowsiness and the envy to go to bed when I take 300mg... but I'm still starving, I feel anxiolytic effect and nothing more for the moment...I drink a lot against urinary hesitation so I don't have it...and no blue skin :(
In the other hand I made all the tests before using trobalt (blood, urine, heart, eyes...) and I have no predisposition to have bad side effects with Trobalt. Crossed fingers !


@attheedgeofscience do you keep your improvement on your T with Trobalt during your taper down ?
 
#7,386
Mithrandir said:
@Christian78 Please don't generalize, Retigabine is addictive for you maybe but not for all the "takers"
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it makes you high and that is what is addictive like cocain, you don't want to give up that high. Now when you said not far all then cocain is not addictive for all people the same!!!
 
#7,387
I guess it's addictive, as Danny Boy and Christian78 have noted. The majority of the people that have been reporting on their experiences were able to go off the drug after a while. Based on what I've been reading, its effects and its addictiveness could be likened to anti-depressants. Basically, once you stop taking it, you can expect that you're gonna feel like shit, but you know that you'll survive.
 
#7,388
This thread got really ridiculous. So many good user experience posts will be overlooked because people see the need to troll each other. Isn't there a general discussion thread for that?

In august 2015 I wrote markku, if we could have another trobalt thread, where only people could post who are taking trobalt and other people could ask specific questions to those who take it. (unlike the useless user experience thread), because this thread here was already blowing up with nonsense. Markku didn't want another thread...well, seeing what happens in this thread and how many good posts wont ever be found, he was probably wrong :p
 
#7,390
snow86 said:
This thread got really ridiculous. So many good user experience posts will be overlooked because people see the need to troll each other. Isn't there a general discussion thread for that?

In august 2015 I wrote markku, if we could have another trobalt thread, where only people could post who are taking trobalt and other people could ask specific questions to those who take it. (unlike the useless user experience thread), because this thread here was already blowing up with nonsense. Markku didn't want another thread...well, seeing what happens in this thread and how many good posts wont ever be found, he was probably wrong :p
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This thread isn't ridiculous. If someone is really bothered by tinnitus to the point he/she can't function in life, or even considering suicide, negative user experience should have zero impact on the persons ability to choose whether to take trobalt or not. My tinnitus is 7/10 right now, it's getting worse every day and i'm seriously thinking of moving to US to get this drug. I couldn't care less if my skin or eyes turns blue. I can live with that, what I can't live with is this loud high pitched ringing in my ears and head.

If someone really has the need to read good user experiences because the person is scared of the side effects or unsure if there is any effects from the drug, he/she is either very stupid or their tinnitus is fairly mild. Everyone knows the chances of side effects from Trobalt, a quick search on Google will tell you that. People can troll as much as they want to here. If you believe everything you read on the internet you kind of deserves to be trolled anyway.
 
#7,392
ceauses97 said:
This thread isn't ridiculous. If someone is really bothered by tinnitus to the point he/she can't function in life, or even considering suicide, negative user experience should have zero impact on the persons ability to choose whether to take trobalt or not. My tinnitus is 7/10 right now, it's getting worse every day and i'm seriously thinking of moving to US to get this drug. I couldn't care less if my skin or eyes turns blue. I can live with that, what I can't live with is this loud high pitched ringing in my ears and head.

If someone really has the need to read good user experiences because the person is scared of the side effects or unsure if there is any effects from the drug, he/she is either very stupid or their tinnitus is fairly mild. Everyone knows the chances of side effects from Trobalt, a quick search on Google will tell you that. People can troll as much as they want to here. If you believe everything you read on the internet you kind of deserves to be trolled anyway.
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Dude, you didnt get a single point of my post. Im talkin about the wars of the single users on this thread, which render this thread ridiculous. Not about the user experiences. Do you understand english :p ? Im in much worse shape than you and I have done 2 trobalt trials and have written many posts here about it. Please use your brain first before you say I deserve to be trolled. Seriously, wtf.

btw. you can get this in spain without a problem, you wont get it in the USA.
 
#7,393
Mithrandir said:
Are you telling you take cocain ?
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Oh save me from yourself, i done comparison but you dont understand, ask Atheos he can explain it to you he is really smart guy here.

@attheedgeofscience I have one question and i need final advice, I planned to end this agony on monday, tomorrow but i postponed it becouse i used 2mg clonazepam that helped me a bit.

My problem is this, I got t sep 2013. After it got up in lvl for various reasons like stress, medicine like paracetamol, corticosteroid injection etc... Now it has reach place i cant take it any more, it got worse in november mid january and 6 days ago, every time it goes permanently up, and every time my hearing goes permanently down.

Doctors here dont want to speak with me, hearing department gave me hearing aids and they say done as much as they can, psikiyatrist say i am not crazy nor i am case for them, but when i dial emergency they tell me to go to psychiatry.

There is possibility of siringing cochlea with gentamicin or something that will destroy cochlea and there is chance you louse tinnitus and be deaf, you keep tinnitus and be deaf and get worse.

I dont have ordinary case of tinnitus, my is fast progressive worsening time. I just ask you as a friend what would you do. Doctors, ENTs all have closed door and said go to someone else.

Now it is just like that, daniel advised me to try some antioxidant powders that i will try to get here in city... Anyway I don't know what to do, I been drained, 12 times has my tinnitus reached new lvl in last 2 years and it is it.

When i started trobalt it ended my tinnitus 4 months to lvl of <10%. then t returned.

Any opinion?
 
#7,394
snow86 said:
Dude, you didnt get a single point of my post. Im talkin about the wars of the single users on this thread, which render this thread ridiculous. Not about the user experiences. Do you understand english :p ? Im in much worse shape than you and I have done 2 trobalt trials and have written many posts here about it. Please use your brain first before you say I deserve to be trolled. Seriously, wtf.

btw. you can get this in spain without a problem, you wont get it in the USA.
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OK. I thought you were talking about good user experience getting "overlooked" and affect others to not take Trobalt because of trolling in this thread and lack of positive news. No need to get personally, I was never talking directly to you, but rather people who believes everything they read on the internet
 
#7,395
@locoyeti , @attheedgeofscience et al: it's clear to me that I'm not being helpful here, and am probably too volatile and suffering too much right now to be any help to anyone, so I'm going to take a step back from this thread / forum for a while and try to gain some perspective. Certainly, the amount of time I've spent here isn't helping me minimize the impact tinnitus has on my life, and there's really nothing I can contribute to this thread unless I take another run at trobalt.

I am genuinely sorry to anyone I upset, and wish everyone the best in coming to terms with or treating their condition.
 
#7,396
snow86 said:
Dude, you didnt get a single point of my post. Im talkin about the wars of the single users on this thread, which render this thread ridiculous. Not about the user experiences. Do you understand english :p ? Im in much worse shape than you and I have done 2 trobalt trials and have written many posts here about it. Please use your brain first before you say I deserve to be trolled. Seriously, wtf.

btw. you can get this in spain without a problem, you wont get it in the USA.
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Can you please send me which pharmacies sell it in Spain? Thank you
 
#7,397
linearb said:
@locoyeti , @attheedgeofscience et al: it's clear to me that I'm not being helpful here, and am probably too volatile and suffering too much right now to be any help to anyone, so I'm going to take a step back from this thread / forum for a while and try to gain some perspective. Certainly, the amount of time I've spent here isn't helping me minimize the impact tinnitus has on my life, and there's really nothing I can contribute to this thread unless I take another run at trobalt.

I am genuinely sorry to anyone I upset, and wish everyone the best in coming to terms with or treating their condition.
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What happened? i thought you were doing ok
 
#7,399
The way my life works: sometimes things are great. Sometimes things are not great. I certainly don't have anything to gain by misrepresenting how I feel; however, it's not a stable thing.

I don't think that any of the criticism thrown at me here is particularly off base, but clearly it's a distraction from the subject at hand; if anyone wants to talk to me in more detail than that, feel free to PM me. If not, I really should bow out of this thread for all the reasons I already listed.
 
#7,400
That is life with T , ups and downs. I think we should try and be more understanding of each others differences and stop the personal attacks. We are all sharing the same leaky boat :)
 
#7,403
I have already suggested a Trobalt conclusion thread for people that have used trobalt and have stopped.
I still think that would be somewhat effective as its extremely hard to disseminate all this info.
I am severely confused as to who has had results and who hasnt , especially after quitting trobalt.
User experiences is ok but as with any study there needs to be a conclusion in some form or the other.
 
#7,404
RaZaH said:
I have already suggested a Trobalt conclusion thread for people that have used trobalt and have stopped.
I still think that would be somewhat effective as its extremely hard to disseminate all this info.
I am severely confused as to who has had results and who hasnt , especially after quitting trobalt.
User experiences is ok but as with any study there needs to be a conclusion in some form or the other.
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It's already exist in the retigabine user experience with a part called "conclusion", isn' it ?
 
#7,407
#7,408
Christian78 said:
@attheedgeofscience I have one question and i need final advice, I planned to end this agony on monday, tomorrow but i postponed it becouse i used 2mg clonazepam that helped me a bit.
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You are definitely one of the hardest hit members of TinnitusTalk - along with members such as @dan @Geo @Sailboardman and several others.

As it happens, this past Friday, I contacted one of the researchers I correspond with on a frequent basis (after seeing an episode on the chat forum). Essentially, I have inquired if there are any means by which people who are truly in the very worst category of tinnitus can seek help abroad. I don't want to go into the details on the public part of a public board, but I will see if there is any helpful feedback. But as you know, non-objective tinnitus is essentially incurable.

How to approach this? I don't know. Some people might try to keep going a day at a time - hoping that their condition improves, or, that new treatments become available. For instance, a number of people have indicated their interest in AM-102 (even though it is not known if it is aimed at chronic tinnitus or not). This is indeed one of the reasons why I have myself been a catalyst for engaging in a dialogue with the pharma companies on behalf the entire tinnitus community here on TT (probably close to a million visitors on an annual basis): with a direct connection between the patient population and the pharma companies, we can hope for an improved coordination and time-to-market situation.

I don't have a magic wand: Trobalt is/was interesting simply because - if efficacious - then there would be a treatment option already available to many people all over the world.

The method you mention - injections of an ototoxic agent to the inner ear - I believe is only carried out when the person has lost more or less all of his/her hearing (e.g. sudden hearing loss). I have no opinion as to the "success rate" - indeed the person will become deaf (and possibly with severe tinnitus to follow). Probably experimental more than anything else.

I wonder if you have ever contemplated trying to do something completely different? Sometimes it is possible to get so focused on "solving a problem" that you stay focused on that, and that alone. Just a wild idea: have you considered something like spending a season helping on a safari farm - i.e. doing something related to nature and getting away from the typical lifestyle of the average person in the Western part of the world?
 
#7,410
Blackbird26 said:
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
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Yes, and you said the same thing right there in your comment. So if I say someone is responsible of their actions (including words what they say or type) it is "by far the most ridiculous comment" but when you said it it's suddenly a different thing?

@uae96 and @Blackbird26 , some people with severe or recent tinnitus are willing to do anything what they read from internet and while being desperate they don't think rationally. Are you guys also saying that those snake oil sellers are fine in what they do because "everyone is responsible of their actions if they decide to buy snake oil or some sort of "miracle cure book"?

There is people with heart diseases and other medications who shouldn't be taking Trobalt for example. You never know the background of a person. But I guess you knew that Trobalt affect certain phases of cardiac cycle.

Are you starting to see my point? If you still think I'm saying ridiculous things...well, then we must disagree on this.
 

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