Retigabine (Trobalt, Potiga) — General Discussion

@Danny Boy wasnt thinking combo , just Trobalt . Not sufficient ?
I am very, very sensitive to drugs , I am super high after 50 mg , I am sure if I added other drugs to that I would be a useless zombie , I do a lot of troubleshooting in my work and would prefer to have a brain :)

If you get relief from 50mg three times a day than just stay at that dose, if you feel it is losing its effect you can slowly up the dose, you need to find a good balance between effeciency for your t and side-effects.
 
I know...Drug trials take so long...And damn Autifony for failing.
Yes. Autifony failing I think is the greatest blow of my life. I cant stop crying about it. Guess its dangerous to get your hopes up, but then again I couldn´t live without it. SF seems so far away though.
Sadly, Dr. Large wasn´t as brilliant as we thought he was. Well, he may still be brilliant, but why would he start plundering with the Kv. 3.1 channel, when some of the Kv. 7.x channels curtainly hits the right spots T. wise? And he was the one who invented the damn drug!!(Trobalt)
And why can´t they just start prescribing the SF34 right away allready? I undertand its a slightly different molecule to RTG, but affects fewer channels. Fewer channels you say? Oh, ok then..oh and less is more you say? Lets get it out there for the poor suffering souls PRONTO. But what if it is the Kv. 7.4 and 7.5 channels that is of bigger importance for setteling the exited neurons giving T? Do we know theire not?

Also still bothers me that Corrine seemed to have such benefits from AUT. One would think that they would atleast look into that more thoroughly then? Possibly she only got the placebo and it was just psychologically. I sure would wish her to come on here and tell us something. Would ease my mind a bit...
 
Yes, drug trials take time, and apparently SF0034 will have to go through trials. There is reason to be cautiously optimistic though. Assuming they are right that SF0034 is more powerful than Trobalt and has fewer side effects, one would think that it would be approved since Trobalt was approved. Caution is warranted though because they have only done animal trials on SF0034, and AUT00063 survived animal trials and Phase I.
 
Yes. Autifony failing I think is the greatest blow of my life. I cant stop crying about it. Guess its dangerous to get your hopes up, but then again I couldn´t live without it. SF seems so far away though.
Sadly, Dr. Large wasn´t as brilliant as we thought he was. Well, he may still be brilliant, but why would he start plundering with the Kv. 3.1 channel, when some of the Kv. 7.x channels curtainly hits the right spots T. wise? And he was the one who invented the damn drug!!(Trobalt)
And why can´t they just start prescribing the SF34 right away allready? I undertand its a slightly different molecule to RTG, but affects fewer channels. Fewer channels you say? Oh, ok then..oh and less is more you say? Lets get it out there for the poor suffering souls PRONTO. But what if it is the Kv. 7.4 and 7.5 channels that is of bigger importance for setteling the exited neurons giving T? Do we know theire not?

Also still bothers me that Corrine seemed to have such benefits from AUT. One would think that they would atleast look into that more thoroughly then? Possibly she only got the placebo and it was just psychologically. I sure would wish her to come on here and tell us something. Would ease my mind a bit...


I think it was the way they limited the trial for people with hearing loss..I mean, they were so stringent in the way, they wouldn't allow us to join the trial, unless we had hearing loss at 30DB. I couldn't join because of it. Also the trial wasn't even big, 58 people? Seriously, Campral was trialled larger than this. I'd like to see the data. Well, nothing we can do now, as dwelling on it will only cause more depression.
 
I am currently taking 150 mg TID. Only side effect now is a very mild sedation after 30-60 minutes which seems to resolve after 2-3 days after increasing the dose. No difference on an empty stomach or after a meal. Everyone is different and the results will vary considerably. I metabolize medications very quickly ( I weigh 105 lbs - 48 kg) so I realize that this may not have a lasting effect but worth a try. I feel that Trobalt/Potiga is no any more dangerous than all of the other medications I have been prescribed. I must say that CBD oil provided a turning point. I became less anxious and had a markedly decrease in the emotional response to my T. Its been two weeks and eventhough my T is unchanged I feel like a different person - more positive, more productive. If this does not work I will restart the CBD oil. By the way very foolish to mix medications/supplements that target the CNS. You have no idea how they will interact and will possibly reduce the efficacy of Trobalt/Potiga (except possible nuerotonin). If possible just take one at a time. Unfortunately I still must take Trazadone in order to sleep. I may not need it at the higher doses. Am I the only female trying this?
 
Hey. Im taking now almost every day a small dose of trobalt, 100mg or 200mg once a day with Keppra, still quite effective. Would like to increase dose but im worried about the long term side effects. how is @Christian78 doing? i heard he had some of those effects, anyone knows?

does someone know how long must rest from a drug to avoid tolerance?

BTW other day went party. loud pub music always annoyed me, even before my T onset. Took 300mg to prevent volume increase (wich I already tested before, it truly works). Not only the T didn't increase and was lower when i came home, but also, i wasn't annoyed by the loud pub music. Surprise that when I came home I almost wasn't hearing it

Proved again yesterday: when i take it after a long-long work tiring stress day, trobalt has less effect on me, talking about both effect on T and also drunk feeling
 
Hey. Im taking now almost every day a small dose of trobalt, 100mg or 200mg once a day with Keppra, still quite effective. Would like to increase dose but im worried about the long term side effects. how is @Christian78 doing? i heard he had some of those effects, anyone knows?

does someone know how long must rest from a drug to avoid tolerance?

BTW other day went party. loud pub music always annoyed me, even before my T onset. Took 300mg to prevent volume increase (wich I already tested before, it truly works). Not only the T didn't increase and was lower when i came home, but also, i wasn't annoyed by the loud pub music. Surprise that when I came home I almost wasn't hearing it

Proved again yesterday: when i take it after a long-long work tiring stress day, trobalt has less effect on me, talking about both effect on T and also drunk feeling
Did you wear eat plugs at the pub too? Or just Trobalt for "protection?"
 
Hey. Im taking now almost every day a small dose of trobalt, 100mg or 200mg once a day with Keppra, still quite effective. Would like to increase dose but im worried about the long term side effects. how is @Christian78 doing? i heard he had some of those effects, anyone knows?

does someone know how long must rest from a drug to avoid tolerance?

BTW other day went party. loud pub music always annoyed me, even before my T onset. Took 300mg to prevent volume increase (wich I already tested before, it truly works). Not only the T didn't increase and was lower when i came home, but also, i wasn't annoyed by the loud pub music. Surprise that when I came home I almost wasn't hearing it

Proved again yesterday: when i take it after a long-long work tiring stress day, trobalt has less effect on me, talking about both effect on T and also drunk feeling


Hey Juan i did not see you along time...

well side effects are mostly cognitive and prostate/kidney related. I use now 200+250+450 and i lost cognitive problems, and i have still blood in urine (urine is orange like it is last 6 months, and it is normal side effect) but it i lover 2 days dosage all side effect wanish.

Trobalt dont have effect on me any more, it had 2,5-3 months
and then stopped, to some people it happen. It is obvious i have to die. MY initial tinnitus was 6-8/10 and it got 7 time worse, and last few days it was slowly getting worse, and now is like 47/10 compared to initial tinnitus, and I will die soon, i strongly dont believe i will see next spring, and I made peace with it, just, i wish i can fall in love one more time and smell a sea winds of mediteran...

As i see it i have almost no chance that happen to me. Doctors just look at me like a dead guy already. They know all facts and see all how fast my tinnitus is progressing and they can't do nothing. If there were golden pills for tinnitus my GP would give it to me, she cried last time she seen me.

Autifony was my hope but... life

so side effect: you get lost in traffic, miss buses enter wrong trams,forget id card or credit card and have to pay attention on it, you get unable to sign your name and to write a sentence. what you write get to be unable to decode.

prostata falls asleep so does problem with keeping erection if u get it at all, orange urine or brown happen, or you cant pee out everything so u get to toilet more often.

as it makes you drugged and high, or very low tired or happy or sad you louse possibility to stress or think about problems.

all are survivable, not all you have to get, and they go away if u stop
 
I want to apologize for my remark of how foolish it would be to take multiple medications while on Trobalt. We are all doing what we can to coexist with this terrible affliction. If any thing I applaud and admire all of you for taking the risk. By helping yourselves you may help others. @Christian78 please do not give up. My T is so loud I sometimes cannot think but I actually feel so much better. Have you tried Tinnitus Retraining Therapy? Please try. My prayers are with you:huganimation:
 
@Christian78

Do you think Trobalt is the cause of your worsening ?

Maybe you can try and stop taking it to see if there is any improvement ?

I am currently having a huge spike, something straight from the twilight zone, the king kong of spikes, it was after I stopped taking Trobalt, maybe it is just coincidence but I am seriously worried that it will stay this way.
 
@Christian78

Do you think Trobalt is the cause of your worsening ?

Maybe you can try and stop taking it to see if there is any improvement ?

I am currently having a huge spike, something straight from the twilight zone, the king kong of spikes, it was after I stopped taking Trobalt, maybe it is just coincidence but I am seriously worried that it will stay this way.
yes i hope it stops, normally it stups. my did not. i advise you to buy ginkgo bilo but 6000mg. i am under trobalt so i can write. take always vitamins+minerals. did u look about apartment pleas.

daniel did it but tinnitus now returned
 
yes i hope it stops, normally it stups. my did not. i advise you to buy ginkgo bilo but 6000mg. i am under trobalt so i can write. take always vitamins+minerals. did u look about apartment pleas.

daniel did it but tinnitus now returned
6000 mg of ginko bil... ?? In one take or in a Span of a time ?
 
yes i hope it stops, normally it stups. my did not. i advise you to buy ginkgo bilo but 6000mg. i am under trobalt so i can write. take always vitamins+minerals. did u look about apartment pleas.

daniel did it but tinnitus now returned

Why are you still on Trobalt mate ? It is not helping you, please stop taking that stuff asap Christian.
 
Christian

Hang on there... i hope your wishes may be granted one day: love and the sea

Maybe the trobalt is having a negative effect on your metabolism and the stress your body endures due this is making your T spike? Those side effects aren't mild anymore... I know you are using because it kept you going trough the day. I've read the wole thread from page 1 since january. Are all your treatment options explored in Europe? I know it can be hard when you hit rock bottom to find some strenght left in a body battered by stress and suffering... but maybe 47/10 can become 27/10 and then 10/10 ... and who knows 5/10 will be something you can live with like a soft sea breeze.
 
6000 mg of ginko bil... ?? In one take or in a Span of a time ?
6000x2 per day

Why are you still on Trobalt mate ? It is not helping you, please stop taking that stuff asap Christian.

it is the only thing helping me to sleep i f i dont use it i would die in 7 days without sleep
 
hey @Christian78 im really sorry that your T is worse. As trobalt is not helping it, i also agree you should stop slowly taking it, not completely but try to take just one dose to sleep, 300mg for example. As you stated, now the main reason you use it is to get to sleep

I was taking trobalt for 6 months, and I didnt get a raise or its withdrawal didnt stop me to sleep. What I had is something like a reboud-effect after stopping it, that lasted near 2 weeks, so just during 2 weeks I had a little higher T but after it went down to baseline or lower baseline

Did you read o tried the CBD oil? look its thread, looks very promising, specially for those with stress related T. It will help to sleep for sure so maybe its a way to let you decrease Trobalt dose.
Another reason to take less trobalt, is that to avoid creating tolerance to future drugs SF034 will be similar molecule to it but tarjeting less KV channels so will have less side effects and will be able to take higher dose of it.
While i was writing this lines i received my CBD oil, but tomorrow im traveling so not sure if i will take it with me, will update anyways.
I know how hard is say goodbye to Trobalt, regardless of its effect on T, it gives a happyness and relaxations that nothing else can give in this world. So well i use it time to time on t increases, on stress days or if i go out to loud place. I try to not take it everyday, just like aspirin
 
@Christian CBD oil really seemed to help with my anxiety although I did not get a reduction in my T. Everyone is different and virtually no side effects. Give it a try if you can. Maybe get it with a little THC for more relaxation.
Has anyone who has taken Trobalt found an inconsistency in the strength of the dosage. I was taking 50 mg tablets which I purchased as Potiga in the US. I seemed to get a mild sedating effect. I also purchased Trobalt from a Canadian pharmacy (almost 1/3 the price) - 50 mg and 100 mg tablets). I took 200 mg last night I did not feel any thing (sedation, etc.). I'm tapering up every 5 days. Does anyone taking Trobalt feel any inconsistency is the UK version or just has not had any side effects (but still reduces their T). I remember one user said he thought there was an inconsistency in the potency. Thanks
 
@Christian78 , a little correction - it isn't blood which colors your urine orange/brown.

In side effect is say it can have blood in urine...

hey @Christian78 im really sorry that your T is worse. As trobalt is not helping it, i also agree you should stop slowly taking it, not completely but try to take just one dose to sleep, 300mg for example. As you stated, now the main reason you use it is to get to sleep

I was taking trobalt for 6 months, and I didnt get a raise or its withdrawal didnt stop me to sleep. What I had is something like a reboud-effect after stopping it, that lasted near 2 weeks, so just during 2 weeks I had a little higher T but after it went down to baseline or lower baseline

Did you read o tried the CBD oil? look its thread, looks very promising, specially for those with stress related T. It will help to sleep for sure so maybe its a way to let you decrease Trobalt dose.
Another reason to take less trobalt, is that to avoid creating tolerance to future drugs SF034 will be similar molecule to it but tarjeting less KV channels so will have less side effects and will be able to take higher dose of it.
While i was writing this lines i received my CBD oil, but tomorrow im traveling so not sure if i will take it with me, will update anyways.
I know how hard is say goodbye to Trobalt, regardless of its effect on T, it gives a happyness and relaxations that nothing else can give in this world. So well i use it time to time on t increases, on stress days or if i go out to loud place. I try to not take it everyday, just like aspirin

well i notice daniel developed resistence to trobal as i did, so whatever autifony is created it is ment to be stronger, but newer test it 3 months, becouse if they tested it it may well show that autifony may be cure UP TO 4 MONTHS ONLY.

Does Ginko actually work?!

No twisting words , read original post.
 
@Christian78 i have developed resistance to rtg.
I take 400mg and is the same with placebo.
Stoped about 1 week and now has some effect again.
I like the stone feeling gives me trobalt.
 

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now