Retigabine (Trobalt, Potiga) — General Discussion

[SteveToHeal]

It does sound awful...But if he carries on, this reduction may be permanent, like other users.

That is possible. The question is, how long can Christian (or anyone else wanting to trial this drug) keep having these side affects, until something bad happens, through forgetfulness? It's edging slowly closer to the "danger" point and I would err on the side of caution, so as not to end up in hospital (or worse) because the trobalt is making me forget to look both ways b4 crossing the road!

At the end of the day, it is Christian's decision as he is the one going through it.

 

[Danny Boy]

That is possible. The question is, how long can Christian (or anyone else wanting to trial this drug) keep having these side affects, until something bad happens, through forgetfulness? It's edging slowly closer to the "danger" point and I would err on the side of caution, so as not to end up in hospital (or worse) because the trobalt is making me forget to look both ways b4 crossing the road!

At the end of the day, it is Christian's decision as he is the one going through it.

I guess so...Still he was saying he was going to kill himself because of the tinnitus, so if this could get rid of it 100% or reduce it permanently to a point where he can barely hear it, that may be worth suffering the side-effects. Plus, those side-effects may subside.

 

[SteveToHeal]

I guess so...Still he was saying he was going to kill himself because of the tinnitus, so if this could get rid of it 100% or reduce it permanently to a point where he can barely hear it, that may be worth suffering the side-effects. Plus, those side-effects may subside.

I had really bad vertigo (classified as Subjective Severe Dizziness in ENT speak) in the beginning which i'm really thankful has disappeared. It truly is an awful condition and I can't imagine what it is like to have that permanently! T is bad enough. Any added "complications" on top of t can make a "good" t day seem a helluva lot worse. Christian said Retigabine made his t "quite low". With t being such a subjective condition, chronic side affects plus "quite low" t can sometimes be just as bad.

Yes - the side affects might disappear if Christian persists with the meds. They might not. It's for Christian to decide. What he needs right now is our support.

 

[Danny Boy]

I had really bad vertigo (classified as Subjective Severe Dizziness in ENT speak) in the beginning which i'm really thankful has disappeared. It truly is an awful condition and I can't imagine what it is like to have that permanently! T is bad enough. Any added "complications" on top of t can make a "good" t day seem a helluva lot worse. Christian said Retigabine made his t "quite low". With t being such a subjective condition, chronic side affects plus "quite low" t can sometimes be just as bad.

Yes - the side affects might disappear if Christian persists with the meds. They might not. It's for Christian to decide. What he needs right now is our support.

Still one guy on here had no tinnitus, after like what, 2 months? And he's tapering off them and then bang, no more tinnitus for him. How long has Christian been on trobalt?

 

[Danny Boy]

By the way, does anyone know how I can get a supply of trobalt?

 

[SteveToHeal]

Still one guy on here had no tinnitus, after like what, 2 months? And he's tapering off them and then bang, no more tinnitus for him. How long has Christian been on trobalt?

Yup, that's Mpt - the success story. I think it was longer for 2 months but i'd have to review thread to see exactly how long he took trobalt for, how long he tapered for etc. The suggested dosing schedule was posted by benyru. See Christian updates (in User thread) for how long he has been on trobalt.

 

[locoyeti]

@linearb @Lep do you guys have any updates for us?

just a roll call here, can the people that are about to start retigabine identify themselves? please note how soon you intend on starting.

 

[Tinnitus Talk]

Just a reminder, everyone who is taking Retigabine, please remember to fill our forms.

Complete this form first (only once):
https://www.tinnitustalk.com/forms/retigabine-new-participant-form.1/respond

And then the progress form as many times as needed during therapy:
https://www.tinnitustalk.com/forms/retigabine-progress-form.3/respond

After submitting the form(s), the results are automatically posted to our User Experience thread.

 

[Hengist]

That is possible. The question is, how long can Christian (or anyone else wanting to trial this drug) keep having these side affects, until something bad happens, through forgetfulness? It's edging slowly closer to the "danger" point and I would err on the side of caution, so as not to end up in hospital (or worse) because the trobalt is making me forget to look both ways b4 crossing the road!

At the end of the day, it is Christian's decision as he is the one going through it.

I don't think it is "edging closer" to anything. Sideeffects should go down over time that is the rule. I am pretty sure that things will get better because the body produces antibodies specifically in target parts of it where sideeffects appear. I think we should all give our support to him and try to give him strength not just randomly toss suggestions in all ways to confuse and annoy him.

 

[SteveToHeal]

I don't think it is "edging closer" to anything. Sideeffects should go down over time that is the rule. I am pretty sure that things will get better because the body produces antibodies specifically in target parts of it where sideeffects appear. I think we should all give our support to him and try to give him strength not just randomly toss suggestions in all ways to confuse and annoy him.

This was exactly my point: "....What he needs right now is our support." See my earlier post. If the drug is making him that out of it then it becomes dangerous to continue. Yes - we know that the side affects diminish after discontinuing. The question is here for Christian to decide (not anyone else), if he wants to continue or not and endure the side effects. I think you are getting the wrong end of what i was saying.

 

[Christian78]

Hi, just want to make this post clear. So you said that because of one time double dosage, now you feel like drunk all the time, and also your T went down? it went up before that trouble right?
Maybe you should get advice from a neurologist - explain everything, or slowly taper off until you recover to normal state and then start from zero.
That double dose could make too much effect beyond T area
We appreciate your feedback, thanks for posting

i used 200x3 and i got t harder.

then i went to 3x300 and it was better but harder side effects. then this incident happen and i just used like 500mg in 4h. it was my time to use, but then i was not sure did it took it so 2,5h later i took 200 mg and i got strong attack of side effects and from that moment my side effects are agresive, drowzy, nosia, blurry vision, inabitlity to rear, understand etc.

I am tappering slowly 250+250+300, then i will see in few days or a week, to go maybe 250 morning, 200 afternoon, 250 evening... anyway slowing per week by 100mg.

dosage was doungle but concentration in blood was 700mg, and maximum concentration in blood is 800mg, normal when you take 300 is 600mg after you take pill exactly.

 

[Christian78]

I don't think it is "edging closer" to anything. Sideeffects should go down over time that is the rule. I am pretty sure that things will get better because the body produces antibodies specifically in target parts of it where sideeffects appear. I think we should all give our support to him and try to give him strength not just randomly toss suggestions in all ways to confuse and annoy him.

Thank you for being kind, i will try lo lower dosag to 150, and then keep it and maybe go more down or come back to max 250x3. Side effects are worse and worse... or maybe not worse but acting longer after taking dosage, they are dosage releted, and time extended form 30 min to 4-5 hours after taking pill, and before taking next it become kind of ok.

ONE THING IS SURE, TROBAL DOES KILL 80% OF TINNITUS. TO THAT I MUST BE HONEST AND ADMIT.

I dont hear screeching as before
i have tinny screech that i habituated
i sleep much better
i am more interest in life

now i am more bad because of incident and bad weather and loneliness.

concerning Trobalt effect on tinnitus in my case is 80%, sometimes is 60%, sometimes is 98%, middle is 80%...

 

[Christian78]

Hi, just want to make this post clear. So you said that because of one time double dosage, now you feel like drunk all the time, and also your T went down? it went up before that trouble right?
Maybe you should get advice from a neurologist - explain everything, or slowly taper off until you recover to normal state and then start from zero.
That double dose could make too much effect beyond T area
We appreciate your feedback, thanks for posting

thank for advice. delete post if you dont understand, i can not explain, becouse if you did not understand by now i have lost possibilty to write plain that becomes understandable. If something more is not understandeble please put me on block , ignore delete whatever. Thank you for understanding.

 

[Zimichael]

Geeez Christian... I know you may not like or want any confusing advice right now, but if it were me, I would taper off completely. What you are describing all sounds too hard. However, I appreciate that if T increases that can also be too hard! Hell's bells..."Damned if you do and damned if you don't."

Best, Zimichael

 

[undecided]

These two bad boys just arrived in the mail.
Problem is, I don't know whether I should bother. Seems like I'm asking for trouble.
Fuck. Just fuck.
My T hasn't been bothering all that much lately to be honest. It's the thought 'of having' T that is beginning to annoy me the most.
I think I'm going to try Atarax along with melatonin tonight. If Atarax works for my anxiety, I'm going to stick with it. Otherwise, I'm going to continue Xanax along melatonin. It really helps my sleep and so far it seems to lessen the noise.
I am quite sick of drugs. Trobalt will be the absolute last resort.

 

[Danny Boy]

View attachment 3603
These two bad boys just arrived in the mail.
Problem is, I don't know whether I should bother. Seems like I'm asking for trouble.
Fuck. Just fuck.
My T hasn't been bothering all that much lately to be honest. It's the thought 'of having' T that is beginning to annoy me the most.
I think I'm going to try Atarax along with melatonin tonight. If Atarax works for my anxiety, I'm going to stick with it. Otherwise, I'm going to continue Xanax along melatonin. It really helps my sleep and so far it seems to lessen the noise.
I am quite sick of drugs. Trobalt will be the absolute last resort.

How did you get them? And if you don't want them, sell them to me lol

 

[undecided]

Online order from the UK along with a prescription from a rather compassionate private ENT doctor.

 

[Danny Boy]

Online order from the UK along with a prescription from a rather compassionate private ENT doctor.

Lucky!!!!

 

[Zimichael]

My T hasn't been bothering all that much lately to be honest. It's the thought 'of having' T that is beginning to annoy me the most.

Undecided...The "thoughts" about the annoyance of T are very likely to dissipate fairly quickly if you don't do anything idiotic. Plus you are apparently very new into T (4/2104) so there is every likelihood that you will be OK anyway.
I guess the argument for taking Trobalt would be the "Matt factor", that if you catch it early it may disappear forever (Well that may be too cavalier, as I believe once had T maybe we are a bit more susceptible to getting it again v. those who never get it).
The decision of course is yours.

Good luck with whichever, and whatever you choose. Zimichael

 

[locoyeti]

thank for advice. delete post if you dont understand, i can not explain, becouse if you did not understand by now i have lost possibilty to write plain that becomes understandable. If something more is not understandeble please put me on block , ignore delete whatever. Thank you for understanding.

I think in general it is difficult to understand your posts @Christian78. May I suggest writing in Swedish (or whatever language you are most fluent in) and then we can Google translate or perhaps some other Swedish person translate? My advise (please feel free to ignore it if you want) would be to taper off completely, see how you feel for a few weeks or months, and then perhaps try another treatment round. I don't think that being on this drug for an extended period of time is a good idea.

View attachment 3603
These two bad boys just arrived in the mail.
Problem is, I don't know whether I should bother. Seems like I'm asking for trouble.
Fuck. Just fuck.
My T hasn't been bothering all that much lately to be honest. It's the thought 'of having' T that is beginning to annoy me the most.
I think I'm going to try Atarax along with melatonin tonight. If Atarax works for my anxiety, I'm going to stick with it. Otherwise, I'm going to continue Xanax along melatonin. It really helps my sleep and so far it seems to lessen the noise.
I am quite sick of drugs. Trobalt will be the absolute last resort.

The reality is that most probably you will have some level of tinnitus for a very long time (until they get a bonafide cure, which will be many years from now). Trobalt seems to be the only thing that can plausibly cure someone, so I think it is a much better idea to try it on a short course fast taper. My T is also very low as well and not too bothersome, but I simply want to get rid of it, and the chance of being (essentially) T-free, like Mpt, is worth whatever risk you feel there is to taking Trobalt.

 

[Martin69]

Thank you for being kind, i will try lo lower dosag to 150, and then keep it and maybe go more down or come back to max 250x3. Side effects are worse and worse... or maybe not worse but acting longer after taking dosage, they are dosage releted, and time extended form 30 min to 4-5 hours after taking pill, and before taking next it become kind of ok.

ONE THING IS SURE, TROBAL DOES KILL 80% OF TINNITUS. TO THAT I MUST BE HONEST AND ADMIT.

I dont hear screeching as before
i have tinny screech that i habituated
i sleep much better
i am more interest in life

now i am more bad because of incident and bad weather and loneliness.

concerning Trobalt effect on tinnitus in my case is 80%, sometimes is 60%, sometimes is 98%, middle is 80%...

Christian, you are a brave man.
You take this drug and live with horrible side effects.
You are one of the first who tried Trobalt and have a lower T.
I really hope that T will stay low for you whatever you decide about your dosage.
And we all hope, Autifony goes in the same direction, but with less side effects.
And thank you for informing us.
Take care.

 

[undecided]

I guess the argument for taking Trobalt would be the "Matt factor", that if you catch it early it may disappear forever (Well that may be too cavalier, as I believe once had T maybe we are a bit more susceptible to getting it again v. those who never get it).

The "Matt factor".
You nailed it Zimichael. That's exactly what I'm thinking about. Who wouldn't want that?
If it wasn't for Mpt, I wouldn't even touch this stuff.

 

[Philip83]

I think in general it is difficult to understand your posts @Christian78. May I suggest writing in Swedish (or whatever language you are most fluent in) and then we can Google translate or perhaps some other Swedish person translate?

Just tag me whenever you need something translated. I'm pretty much bilingual in english/swedish.

@Christian78

 

[Christian78]

I think in general it is difficult to understand your posts @Christian78. May I suggest writing in Swedish (or whatever language you are most fluent in) and then we can Google translate or perhaps some other Swedish person translate? My advise (please feel free to ignore it if you want) would be to taper off completely, see how you feel for a few weeks or months, and then perhaps try another treatment round. I don't think that being on this drug for an extended period of time is a good idea.



The reality is that most probably you will have some level of tinnitus for a very long time (until they get a bonafide cure, which will be many years from now). Trobalt seems to be the only thing that can plausibly cure someone, so I think it is a much better idea to try it on a short course fast taper. My T is also very low as well and not too bothersome, but I simply want to get rid of it, and the chance of being (essentially) T-free, like Mpt, is worth whatever risk you feel there is to taking Trobalt.

If you can read my "essay" and say can I , or I can not write!

Point is that I have moments of clearness in my head when i do not have side effects. When I have side effect I can not write clearly on ANY language. I will not report any more.

 

[valeri]

@Christian78

Has you bad tinnitus from last week settled down again?

 

[Christian78]

@Christian78

Has you bad tinnitus from last week settled down again?

T is settled, but side effects are 50% worse for the last 14 days.

 

[valeri]

@Christian78

Thank you! I really hope you get some relief soon.
Silly question but would you rather have those side effects or tinnitus at the level you had before meds?
What's easier to deal with?
You don't have to answer this but I'm just curious coz my opinion is that nothing is worse than this bloody tinnitus

 

[Christian78]

I rather tapper to find ballance

@Christian78

Thank you! I really hope you get some relief soon.
Silly question but would you rather have those side effects or tinnitus at the level you had before meds?
What's easier to deal with?
You don't have to answer this but I'm just curious coz my opinion is that nothing is worse than this bloody tinnitus

I rather tapper to find balance between T severity and severity of side effects of Trobalt. I had little side effect and i had also a hyperactivity as side effect that was fixing depression, but now side effect is slow tired depression.

 

[Christian78]

Just tag me whenever you need something translated. I'm pretty much bilingual in english/swedish.

@Christian78

Nice but the best is English, Croatian, then Swedish.

Further on, i would like to say, I have concentration problem, shaky hand and blurry vision, so tell me if i said this 10 000 that I am like drunk when i write why do insist that I must write ? I wish you all who are persistant to get to same situation so you can be budged into answering questions.

Hmm thx for hep but no thx.

This is tread for Retigabine. I said i will not submit more reports about it. I can give it to Dan, he can reform text and do it instead of me but personally I am tired of answering same question over and over.

Except few people, no one is actually interested how am I doing , but you want information from me. Well forget about it. I will not supply info only to friends on private.
The last is toward @locoyeti who just neeeeeeeed to get info, dont care how I feel.

 

[Christian78]

Geeez Christian... I know you may not like or want any confusing advice right now, but if it were me, I would taper off completely. What you are describing all sounds too hard. However, I appreciate that if T increases that can also be too hard! Hell's bells..."Damned if you do and damned if you don't."

Best, Zimichael

I will try to find balance between dosage and t, today is much better on 250+250+300.