Retigabine (Trobalt, Potiga) — General Discussion

[Mithrandir]

Retigabine helps the mice in the acute phase for acoustic trauma & ototoxic drugs.

 

[Christian78]

Hi guys. I heard somewhere in the forum that taking Retigabine can be a "cure" for people in the early acute phase. I'm 2 months in with T and I'm wondering is that true and if so who do I have to ask for this.

I believe it can greatly decrease tinnitus but not cure it, but make it very low, becouse it establish itself in brain. That is what I believe.

+ Depends from what did you got it.

 

[Stotoph]

@Christian78 could you please tell us which side effects you still have today from taking Trobalt even after finishing your Trobalt course?

 

[undecided]

@undecided I'm very sorry to hear that. How long have you been off Trobalt and has it become any bit better at all? Did you notice the retention coming slowly or did it just happen "over night"?

lol, why are u sorry? I just go to the bathroom less times per day.
It's not an actual problem, I was merely stating the fact that a generally uncommon medical product could have uncommon or undocumented side effects, which might be permanent and differ per person, duration of treatment and dosage schedules.
But as long as you use common sense, RTG is not unsafe as a short trial. It gets unsafe when you are desperate.

Hej @undecided ,
You are not the first or the last person to whom Retigabine might not have any effect. You might even get it like me for 4 months and louse it. Anyway body overdose, not one that is on paper makes prostata problem and so does urinating, it might need that you lover your dosage, do you have memory loss symptoms, balance and so on, are they too intensive?

RTG had an effect on me, it was just temporary (lasted for a variable amount of time after each dose).
But when it was time to decide whether I should continue with the drug, I felt that it was not worth the possible future consequences. So I got myself checked to see I didn't cause any damage to my kidneys/liver and ended it there.

 

[Christian78]

@Christian78 could you please tell us which side effects you still have today from taking Trobalt even after finishing your Trobalt course?

I will forever have retina color change but it is minor, i am still on RTG.

 

[Leon909]

@Christian78 I read somewhere that the retina color went back to normal a few weeks after the people stopped taking Trobalt. Unfortunately I cannot cite the source now, but I know I read it.

 

[Mithrandir]

@Christian78 I think you have to stop Trobal, your addiction is not good for your health and now, Trobalt is not enough good for your T ?!?

 

[Christian78]

well sometimes Trobalt helps me, appart from that retina change IT HELPS ME SLEEP AND IT IS ONLY THING THAT HELPS ME SURVIVE... Why would I stop it, not sleep 5 days and kill myself strait? or take worse ototoxic pills and die, i will dies soon I know I feel it but still I am not ready i want few more days...

Would you decide to not let me have those few more days, please if it was in your mercy?

And somehow I have a feeling you are not person whose tinnitus went worse to new level 12 times in last 2,5 years?

 

[Christian78]

@Christian78 I read somewhere that the retina color went back to normal a few weeks after the people stopped taking Trobalt. Unfortunately I cannot cite the source now, but I know I read it.

Color is insignificant, I probably dont have tinnitus to start with, i have rapid hearing loss , severe sensitivity to medication, hearing loss on left ear high freq last 6 months, and my tinnitus from start sep 2013 up to now vent up for a level 12 times. As i See it my time will expire soon. I mean it is reasonable to expect so. I am not guy who got t and lives with it, I am guy who get worse ever 2 months, and I consider it very unfair from our countries that we are left alone not to be able get sleeping injection but we are left to suffer forever until we end ourself.

Danny told me to take q10, and ginko i take 6000mg, and N-A-C 600mg

PS: I would be glad if i could say that in if went down 10% except it went up 450%

But man is like some kind of animal it survives, you get cranky but you survive until there is last breat of air, and yes I am scared to die, who is not.

 

[Dana]

. As i See it my time will expire soon.

I consider it very unfair from our countries that we are left alone not to be able get sleeping injection but we are left to suffer forever until we end ourself.

I am in the same situation myself.
On this forum we couldn't even do that much, to initiate something to gain our right to lethal injection and die in dignity for those of us who had enough, have no hope left, and got tired.
Sorry for the off topic message, couldn't help it.. You are one of the few with the courage to say some things. You are the one who said it like it is: "we are written off"

 

[Christian78]

I got Trobalt prescribed today! Damn sooo hard to make the decision to go for it or not. I'll keep you updated.

Another thing. Does anyone have any theory (or facts) about if medicating on Trobalt will lower chances for natural recovery later on?

Apparently we in Sweden have good chance to get Trobalt while we have really bad medical system...

I personally dont believe trobalt will lover chance to recover by itself.

Second is also that somehow I dont believe in self recovery except in first 3 months.

 

[Christian78]

I am in the same situation myself.
On this forum we couldn't even do that much, to initiate something to gain our right to lethal injection and die in dignity for those of us who had enough, have no hope left, and got tired.
Sorry for the off topic message, coukdn't help it.. You are one of the few with the courage to say some things. You are the one who said it like it is: "we are written off"

Well yes, i got trobalt i take it, sometimes it helps, it makes me numb i dont know nothing, sometimes it helps other times i use clonazepam.... but in sweden who has failed medical system where statistic is made on how many patiets did they help, and they say 20 000 (but they dont say 20 000 with minor cuts, and loss 3 000 with cancer) they just say we are good we helped 20 000 and they get money for next year.

I went to Hörselvärksamhet or Hearing department, and they gave me listening aids and sent me paper we helped as much as we can good bye.

When i dont feel ok i call emergency they sent me to psychiatry akut. There they gave me paper that they can not help me and i dont need to contact them.

Officially in letter they have written me off and told me go away and die off.

 

[Dana]

I have many things to say in reply, but I do not want to go off topic. I don't know if I could start a thread, a separate discussion about that.

 

[Blackbird26]

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.

Yes...and those people would be well informed by their doctors because they should be under doctor supervision taking this drug. To the ones who go by some opinion from some guy on the Internet without first doing their own damn research then that is their own problem and frankly just plain stupid. I research every medicine before I swallow it, it's side effects etc..I assume most others do too..To the newbies, well now that this thread is soooo ridiculous, good luck! I hope you have a neuro who will prescribe it to you..or spend hrs and hrs combing through this thread and maybe you will be able to decipher if it's actually worth it! and yes everyone is responsible for their own actions. ..Danny Boy is not a snake oils salesman and I don't appreciate him being referred to as one nor being called an Internet fame whore....He has helped many many people here out of sheer kindness...peace out.

 

[Zechariah]

Yes...and those people would be well informed by their doctors because they should be under doctor supervision taking this drug. To the ones who go by some opinion from some guy on the Internet without first doing their own damn research then that is their own problem and frankly just plain stupid. I research every medicine before I swallow it, it's side effects etc..I assume most others do too..To the newbies, well now that this thread is soooo ridiculous, good luck! I hope you have a neuro who will prescribe it to you..or spend hrs and hrs combing through this thread and maybe you will be able to decipher if it's actually worth it! and yes everyone is responsible for their own actions. ..Danny Boy is not a snake oils salesman and I don't appreciate him being referred to as one nor being called an Internet fame whore....He has helped many many people here out of sheer kindness...peace out.

There was not a single reference to Danny Boy in my post - not even between the lines. I'm not sure why you keep picking em up. I was just giving general examples that you would understand my view about why people should think twice what they say even in the internet. But you seem to ignore them and keep insulting people who write on this thread.

You arguments are based on assumptions and hopes that nothing goes wrong. Well, here is a actual reference to Danny Boy. He has instructed people where to get Trobalt without prescription (where is your doctor now?) as well he has instructed people with dosages and because he has done so much work to get influence on this forum - guess what - people rather believe him than product info or their doctors (if they aren't getting the med from Spain).

And sorry Danny Boy if you are reading, this is nothing against you (anymore) because this is a matter has already been discussed enough - no hard feelings. Blackbird26 just forces me to reinforce my arguments by being so ignorant and arrogant.

 

[Christian78]

This morning i have terible tinnitus, i cant explain. I took 400mg of trobalt, made me druged so i cant walk and 2mg clonazepam, i am going to bed, i cant survive this day.

 

[Longwaydown]

This morning i have terible tinnitus, i cant explain. I took 400mg of trobalt, made me druged so i cant walk and 2mg clonazepam, i am going to bed, i cant survive this day.

Reading your posts above makes me think, can't you cut your auditory nerve and be gone with T if you're on the edge, instead of killing yourself slowly with numerous medications with severe side effects. Better deaf in silence than dead.
https://www.tinnitustalk.com/threads/cochlear-nerve-section-cures-some-peoples-tinnitus.1792/

 

[Atlantis]

Reading your posts above makes me think, can't you cut your auditory nerve and be gone with T if you're on the edge, instead of killing yourself slowly with numerous medications with severe side effects. Better deaf in silence than dead.

From previous studies: 50% or more who has their auditory nerve cut continue to experience tinnitus. A big risk.

 

[PatrickG]

Reading your posts above makes me think, can't you cut your auditory nerve and be gone with T if you're on the edge, instead of killing yourself slowly with numerous medications with severe side effects. Better deaf in silence than dead.
https://www.tinnitustalk.com/threads/cochlear-nerve-section-cures-some-peoples-tinnitus.1792/

Hm I'm thinking that maybe they don't have to cut it right away, but somehow disable the nerv and see it it helps. Maybe doesn't work at all but that would be way better.

 

[Aaron123]

Hm I'm thinking that maybe they don't have to cut it right away, but somehow disable the nerv and see it it helps.

That is suggested here:

Rarely 8th nerve sections are done for tinnitus. They are successful in about 50%, with the price of losing hearing in 100%. Surgery seems worth considering only in extreme situations - -the tinnitus is extremely loud, very distressing, and there is a methodology to decide whether or not the tinnitus can be improved with surgery. If tinnitus is reduced by intratympanic lidocaine injection, it seems reasonable to us that surgical treatment may also be effective (for unilateral tinnitus).

(http://www.dizziness-and-balance.com/disorders/hearing/tinnitus.htm)

 

[Danny Boy]

There was not a single reference to Danny Boy in my post - not even between the lines. I'm not sure why you keep picking em up. I was just giving general examples that you would understand my view about why people should think twice what they say even in the internet. But you seem to ignore them and keep insulting people who write on this thread.

You arguments are based on assumptions and hopes that nothing goes wrong. Well, here is a actual reference to Danny Boy. He has instructed people where to get Trobalt without prescription (where is your doctor now?) as well he has instructed people with dosages and because he has done so much work to get influence on this forum - guess what - people rather believe him than product info or their doctors (if they aren't getting the med from Spain).

And sorry Danny Boy if you are reading, this is nothing against you (anymore) because this is a matter has already been discussed enough - no hard feelings. Blackbird26 just forces me to reinforce my arguments by being so ignorant and arrogant.

Well, this is lacking good sense, as I wasn't the first to mention as to where to get trobalt. If people ask where to get trobalt, there isn't harm informing them where to get it, as it's fair for them to make the judgement call if it's suitable for them. They can google side-effects and there is a piece of paper detailing the side-effects of the drug in the box. It's their call. I have never been to a Doctor who has told me the side-effects of the drug they are prescribing me.

Also, Doctors won't prescribe trobalt to people even if that person is willing to commit suicide, which is what they did to me. They were willing to see me suffer and wanting to die. If people didn't kindly help me get the drug, I wouldn't be here today and I am forever in their debt. As for dosage, I am merely telling the people the dosage which helped me and what is recommend by researchers-

"Retigabine had the highest therapeutic potential, with a therapeutic concentration of 7.4 mM – a concentration at which counteraction against induced- hyperactivity were effective – followed by NS1619 (15.2 mM), flupir- tine (23.3 mM), and isopimaric acid (30.0 mM). These values were well within the range of their effective concentrations against epilepsy (3–100 mM; Kobayashi et al., 2008), thus, possible off-label treatment for tinnitus is plausible (and safe). Clinical studies had calculated the free brain concentration of retigabine taken at 1200 mg/day to be

around 2.0 mM (Large et al., 2012) – a dose equivalent to that used in an animal model of pentylenetetrazol-induced seizure (Rostock et al., 1996). The other three compounds have not undergone pharmaco- kinetic studies. However, as their EC50 and therapeutic concentration values are almost comparable to retigabine, it is reasonable to assume that the potential effect of tinnitus-like activity suppression may be observed at a similar dose. Nevertheless, a controlled clinical trial of these other three drugs is warranted. As interest in this new class of drugs have gained traction, we surmise that the results of this study may serve as the basis for future research that might explore the pre-clinical and clinical effectiveness of Kþ channel openers for the treatment of tinnitus."


Let's just end this argumentative behaviour right now. If people want to view the side-effects people had and user experiences they can here-

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/page-9#post-166495

 

[Dana]

I have never been to a Doctor who has told me the side-effects of the drug they are prescribing me.

Me neither, and I think that's what happens in the majority of cases.

 

[Danny Boy]

Me neither, and I think that's what happens in the majority of cases.

Exactly and if you experience side-effects then your Doctor isn't held accountable, as you should've read the piece of paper in the box. It's in your hands.

 

[Dana]

Also, Doctors won't prescribe trobalt to people even if that person is willing to commit suicide, which is what they did to me. They were willing to see me suffer and wanting to die. If people didn't kindly help me get the drug, I wouldn't be here today and I am forever in their debt. As for dosage, I am merely telling the people the dosage which helped me and what is recommend by researchers-

People who were on the forum when you were in that situation with loud, reactive, unmaskable T, with an attempt to drown yourself in the bathtub because you could not take it anymore, although you had become a father of a little girl not too long before that, remember too well the "numerous" options that you were having and will never misjudge you.

 

[Danny Boy]

People who were on the forum when you were in that situation with loud, reactive, unmaskable T, with an attempt to drown yourself in the bathtub because you could not take it anymore, although you had become a father of a little girl not too long before that, remember too well the "numerous" options that you were having and will never misjudge you.

Thanks Dana for understanding. I'm in a good place now, want to live and see my beautiful daughter grow up. I'm tired of all these arguments and whatnot, it's a support site. I feel we should support each other and not attempt to depress each other.

 

[Dana]

The accusations that you are looking for Internet fame, cause you have no personal life (having a little daughter proves just the contrary) are so ludicrous. Maybe they are looking for fame, if they were able to have such a silly suspicion about you.
My only concern is how you will get out of it, as you can not take RTG for the rest of your life. Do not feel the pressure to give me the answer, I know that you may not have it yourself. Emotionally taxing, your case. Hoping for the best is all that we can do. Fingers and toes crossed for you, Danny.

 

[Danny Boy]

The accusations that you are looking for Internet fame, cause you have no personal life (having a little daughter proves just the contrary) are so ludicrous. Maybe they are looking for fame, if they were able to have such a silly suspicion about you.
My only concern is how you will get out of it, as you can not take RTG for the rest of your life. Do not feel the pressure to give me the answer, I know that you may not have it yourself. Emotionally taxing, your case. Hoping for the best is all that we can do. Fingers and toes crossed for you, Danny.

Well, assumptions are just what they are, assuming things which aren't true. I'm not on much trobalt anymore, just 400mg every two days and that is enough. I'm in a really good place and enjoying life.

 

[Dana]

I'm not on much trobalt anymore, just 400mg every two days and that is enough. I'm in a really good place and enjoying life.

Glad to hear these news, relieved a lot of pressure.

 

[Zechariah]

Well, this is lacking good sense, as I wasn't the first to mention as to where to get trobalt. If people ask where to get trobalt, there isn't harm informing them where to get it, as it's fair for them to make the judgement call if it's suitable for them. They can google side-effects and there is a piece of paper detailing the side-effects of the drug in the box. It's their call. I have never been to a Doctor who has told me the side-effects of the drug they are prescribing me.

Also, Doctors won't prescribe trobalt to people even if that person is willing to commit suicide, which is what they did to me. They were willing to see me suffer and wanting to die. If people didn't kindly help me get the drug, I wouldn't be here today and I am forever in their debt. As for dosage, I am merely telling the people the dosage which helped me and what is recommend by researchers-

"Retigabine had the highest therapeutic potential, with a therapeutic concentration of 7.4 mM – a concentration at which counteraction against induced- hyperactivity were effective – followed by NS1619 (15.2 mM), flupir- tine (23.3 mM), and isopimaric acid (30.0 mM). These values were well within the range of their effective concentrations against epilepsy (3–100 mM; Kobayashi et al., 2008), thus, possible off-label treatment for tinnitus is plausible (and safe). Clinical studies had calculated the free brain concentration of retigabine taken at 1200 mg/day to be

around 2.0 mM (Large et al., 2012) – a dose equivalent to that used in an animal model of pentylenetetrazol-induced seizure (Rostock et al., 1996). The other three compounds have not undergone pharmaco- kinetic studies. However, as their EC50 and therapeutic concentration values are almost comparable to retigabine, it is reasonable to assume that the potential effect of tinnitus-like activity suppression may be observed at a similar dose. Nevertheless, a controlled clinical trial of these other three drugs is warranted. As interest in this new class of drugs have gained traction, we surmise that the results of this study may serve as the basis for future research that might explore the pre-clinical and clinical effectiveness of Kþ channel openers for the treatment of tinnitus."


Let's just end this argumentative behaviour right now. If people want to view the side-effects people had and user experiences they can here-

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/page-9#post-166495

Well like I said already - this matter has been discussed enough (don't know why you wanted to continue) but I see that you are still running from responsibility.

Btw, you could have gotten Trobalt if you had gone to doctor with that document which you quoted and summarized it to the doctor. It would have given much more leverage than expressing the matter by saying "listen, I hear that this stuff from internet can cure T". This is what I've told people who have PMd me. Take this document, print it, learn it, understand it and summarize it to a doctor and most of them will prescribe you Trobalt.

https://www.researchgate.net/public...channel_openers_in_cultured_neuronal_networks

 

[Dana]

Very helpful document, thank you @Zechariah!