Retigabine (Trobalt, Potiga) — General Discussion

[amandine]

@LetyO
stop taking trobalt
take an antidepressent to sleep

She is trying to get rid of her T and she wants to sleep - how will AD's lower her T? AD's are addictive and she will end up not able to sleep without them...and will have to raise the dose. She has already said she doesnt want to take meds and is only taking Trobalt for obvious reasons.....

Just to give you all an update. I took 300 mg at 8 pm and 4 am with no appreciable side effects. T did not get worse nor did I feel sedated/disoriented. Just could not sleep. Got up every hour. I will continue. Thanks for your support.

Thank you for updating - really appreciated! Has your T lowered at all? thanks

 

[acufenero]

What's the correct starting dose and how do I have to taper up?

 

[linearb]

Do you guys think I should try it by my own? I'm not afraid of side effects since I have so much to win and almost nothing to lose. Btw, I'm 22 and my T came on 08/2014 from an acoustic trauma.

You'll have to make your own best decision, but based on a lot of experience with psychiatric drugs and working with people who have become severely disabled by them, I think it's extremely unwise to enter this with a "nothing to lose" mindset.

Really serious, permanent side effects of trobalt are rare but not nonexistent; there is a case on the books of someone who permanently lost the ability to piss without a catheter after taking Trobalt for a period of time.

I am not suggesting that such outcomes are likely, especially if caution is taken and it is only used for a short period of time -- but I think it's unwise to pretend that such things do not happen. They do. I know people who have basically become nonfunctional as a result of routine prescription drug use.

 

[linearb]

What's the correct starting dose and how do I have to taper up?

talk to a neurologist. Do not let people on the internet with no clinical training tell you what drugs you should put into your body.

 

[randomuser]

Hey, guys! I had a spike last Wednesday and my T is now unbearable (plus I think my H is back, too). I'm seriously considering giving Trobalt a shot; I live in Spain so I'd have no problem to buy it. My GP is OK with that but she obviously can't prescribe it, so she got me an appointment to the ENT (but it's far away, 11/19) but I already know that b*tch won't give me Trobalt.

Do you guys think I should try it by my own? I'm not afraid of side effects since I have so much to win and almost nothing to lose. Btw, I'm 22 and my T came on 08/2014 from an acoustic trauma.

Probably it should be better to make an appointment with a neurologist, I doubt that an (useless) ENT will prescribe an anti-epileptic drug. You should also read the thread and write down some papers that are mentioned about its mechanism of action and uses, it's not the same to go with a handful of peer-reviewed papers than telling him that you have heard about this drug in an internet forum. Some doctors can get really upset if you pretend to be smarter than they are.

I'm from Spain too. If the doctors from the public system (seguridad social) don't give a fuck about that, make an appointment with a one with a private practice. I am being paranoid, but you should also make sure that you'll be closely watched by them in case some undesirable side effects shows up, @linearb is right about this, if you go to benzo addicts forums you'll read tons of horror stories of people addicted and ruined by prescription drugs at therapeutic doses taken for years, when this kind of drugs are only intended for "occasional" use. Trobalt isn't a benzo, obviously, but it should be treated with respect and very carefully. Hope you get better.

 

[attheedgeofscience]

You'll have to make your own best decision, but based on a lot of experience with psychiatric drugs and working with people who have become severely disabled by them, I think it's extremely unwise to enter this with a "nothing to lose" mindset.

Trobalt is not a psychiatric drug.

 

[LetyO]

@amandine I only take trazadone to sleep. I actually decreased my dose from 150 to 50 mg on my own. Ultimately my goal is to be off all medications. ADs don't work and I personally think that unless you have no other alternatives then maybe they may help. I firmly believe that all these meds have changed my brains biochemistry and have caused my current situation. I no longer suffer from anxiety and only have occasional mild depression. I've worked very hard to get to this place. It's just the T that is holding me back. Besides no one really knows how these drugs work on the CNS. Studies do not reflect real life. I'm gambling here and I know that there are risks. I am adult enough to accept them. I just pray that I don't get worse. Thank you all for your opinions and support. I would not have gotten here without TT. Also I did not trazadone last night which is probably why I didn't sleep much. My T is about the same today.

 

[acufenero]

Probably it should be better to make an appointment with a neurologist, I doubt that an (useless) ENT will prescribe an anti-epileptic drug. You should also read the thread and write down some papers that are mentioned about its mechanism of action and uses, it's not the same to go with a handful of peer-reviewed papers than telling him that you have heard about this drug in an internet forum. Some doctors can get really upset if you pretend to be smarter than they are.

I'm from Spain too. If the doctors from the public system (seguridad social) don't give a fuck about that, make an appointment with a one with a private practice. I am being paranoid, but you should also make sure that you'll be closely watched by them in case some undesirable side effects shows up, @linearb is right about this, if you go to benzo addicts forums you'll read tons of horror stories of people addicted and ruined by prescription drugs at therapeutic doses taken for years, when this kind of drugs are only intended for "occasional" use. Trobalt isn't a benzo, obviously, but it should be treated with respect and very carefully. Hope you get better.

I saw my GP today in the morning and brought her some papers I saw in this thread (this one, to be precise) and she was OK with that. Since it seems there's no neurologist at my local hospital (it's a small village), she got me an appointment to my so beloved ENT, the very same who lied to me several times, cared nothing for my ears and said there is no other way than getting used to T. I'll talk to a neurologist then, as you and @linearb say. Never been on benzos before. Actually, I've never been on almost anything (even aspirine).

Btw, I just visited my local pharmacy and they refused to sell Trobalt without prescription. Is it the only Spanish pharmacy to do that?

 

[Zechariah]

@LetyO
stop taking trobalt
take an antidepressent to sleep

Do you have some deeper knowledge regarding LetyO's medical condition or are you just throwing out ideas?

 

[monacco]

Do you have some deeper knowledge regarding LetyO's medical condition or are you just throwing out ideas?

Trobalt may prevent you to sleep it's one of its side effect(insomia)
I speak from my experience
Trobalt lowered my T but it prevented me to sleep so I decided to stop it.
I prefer the noise than going to work as a zombie.

 

[Zechariah]

Trobalt may prevent you to sleep it's one of its side effect(insomia)
I speak from my experience
Trobalt lowered my T but it prevented me to sleep so I decided to stop it.
I prefer the noise than going to work as a zombie.

Ok, so he didn't have sleeping issues before Trobalt?

I'm just saying that "Stop trobalt, eat AD's" is pretty bold statement and didn't appear as you are sharing your experiences.

People really need to learn how to "give advices" with the meds which mess with the brain. Nothing personal here. It's just that when I log on every other day here - I notice right away many messages with misinformation or dangerous/inconsiderate suggestions.

 

[LetyO]

@monacco. Thanks for you advice but ADs never helped me. I had insomnia before Trobalt so that is why I take Trazadone. I am going to try a more natural approach for my insomnia once my Trobalt trial is over.
On another note I had a weird experience today. I took 300 mg last night. No side effects, not even drowsy so I took Trazadone 5o mg. I thought I woke up at 4:30 and took my morning dose. I know I woke up because my water bottle was almost empty. When I woke up at 6 am I saw my pills in the tiny bow by my bed. So I decided to take them then. As usual my T in the morning is a loud hissing sound. Well, about 5 minutes later I had a loud alternating sound in my head. It was a pure tone, not like before. I also became profoundly sedated, and could not get up. When I was able to get up about 30-40 minutes later I went for a walk and noticed that my T was almost gone. It lasted for about 2 hours and has slowly gone up throughout the day. I am wondering why this affects me only in the morning. I am still a little sedated 9 hours later so I skipped the afternoon dose. Any suggestions? Unfortunately I am running out of Trobalt before my next refill so I will be taking it BID only. Should get my refill in soon.

 

[preslys]

Finally I didn't have eye Floaters it 's an inflammation of the uvea,my doctor prescribed me Corticosteroids and this reduced the inflammation and makes my vision more and more clear. It's a good sign guys

 

[amandine]

@LetyO perhaps instead of trazadone an AD...you could try two anti e

Finally I didn't have eye Floaters it 's an inflammation of the uvea,my doctor prescribed me Corticosteroids and this reduced the inflammation and makes my vision more and more clear. It's a good sign guys

That is great news Preslys! Is yout T still zero? thanks

 

[preslys]

That is great news Preslys! Is yout T still zero? thanks

Yes amandine it is zero and if I get my vision 100% it will be perfect.

 

[amandine]

Yes amandine it is zero and if I get my vision 100% it will be perfect.

That is fantastic and you will be the first real person that we know of who was cured of his T by using Trobalt and of course a little Neurontin too at the same time.....fantastic news!

 

[RaZaH]

Sorry for the endless questions @preslys but what do you think caused your T ?
I know it was a hi freq hissing sound , 1 1/2 year but was it loud and nasty causing you lot of distress ?
I am preparing my Trobalt journey , should get it tomorrow , its been hell to get a hold of .
Also have Neurontin .


Maybe there is time for some sort of "conclusions of Trobalt use" thread , its impossible to track all of this info , even through the progress reports.

 

[preslys]

Sorry for the endless questions @preslys but what do you think caused your T ?

At first I thought that cholesterol was the cause ,so I have done alot of efforts to reduce it hoping to reduce my tinnitus but finally my tinnitus has not decreased despite my cholesterol levels decreased.
So the cause still unknown .

 

[amandine]

Maybe there is time for some sort of "conclusions of Trobalt use" thread , its impossible to trak all of this info , even through the progress reports.

I have been asking for this for ages and totally agree with you.
Rather than just a users experience form but a conclusion form - yes very much required. @preslys and @Danny Boy and perhaps @locoyeti and @Juan Carlos who got significant relief from Trobalt (and yes with Neurontin) and keep reporting back here. Many others who took it seem to have disappeared including the two other women who tried it (one woman trying it now) - could that be because they had such an improvement as to not wish or need to visit this forum.....usually a good reason for disappearance from here?

 

[Bart]

So we have 4 confimred reports now of people that got cured using this drug, Mpt, Locoyeti, Dannyboy and now Preslys. That is simply amazing.

These 4 people would have been told by there doctors and ENT's to just live with it and there is nothing that can be done...

Even though my expereince with Trobalt has not been optimal to say the least, reading about this is very tempting to give it another go, I still got 2 prescriptions just screaming to be used.

I am just worried that my T will be worse after I taper off...decisions, decisions

 

[lapidus]

That is fantastic and you will be the first real person that we know of who was cured of his T by using Trobalt and of course a little Neurontin too at the same time.....fantastic news!

Don't forget Mpt, the pioneer on this Trobalt voyage. He also claimed himself "cured".

 

[lapidus]

So we have 4 confimred reports now of people that got cured using this drug, Mpt, Locoyeti, Dannyboy and now Preslys. That is simply amazing.

Danny Boy's T returned and I don't think Locoyeti has ever said that he was "cured". He got relief though.

 

[Bart]

Danny Boy's T returned and I don't think Locoyeti has ever said that he was "cured". He got relief though.

Locoyetis T is at a 1 or 2 now, I consider that as good as cured, in any case it is significant relief.

Dannyboys T returned but he took Trobalt again and it dissapeared went away again ?

Not sure about Dannyboys, is he still taking it? Is his T still gone? Has it come back?

Maybe @Danny Boy can shed some light on this ?

 

[amandine]

Don't forget Mpt, the pioneer on this Trobalt voyage. He also claimed himself "cured".

I didnt forget Mpt - I said those trobalt users who are continuing to post here and have not disappeared which was my point. Mpt does not post here anymore so we dont know where he is at with T do we?
I also didn't say cured - I said significant relief

Danny Boy's T returned and I don't think Locoyeti has ever said that he was "cured". He got relief though.

Locoyetis T is at a 1 or 2 now, I consider that as good as cured, in any case it is significant relief.

Dannyboys T returned but he took Trobalt again and it dissapeared went away again ?

Not sure about Dannyboys, is he still taking it? Is his T still gone? Has it come back?

Maybe @Danny Boy can shed some light on this ?

Locoyeti and Juan Carlos are similar = 1 or 2/10 = which is significant relief.

Danny Boy lowered his Trobalt consumption after getting it down to like a 1/10. Sadly it came back loud all of a sudden and he then raised his Trobalt consumption again so that he got it back to a 1/10. He has re-lowered his Trobalt consumption and that is where he is at now - hopefully that is correct but if I am wrong then please apologies Danny Boy and correct what I have written wrong.

 

[LetyO]

Just curious, has anyone taking Trobalt taken more than 400mg consistently or just as an "aspirin" approach and had significant improvement? Also has anyone perceived significant change when adding Gabapentin other than preslys?

 

[RaZaH]

There you go , its all very confusing at this point. I would consider myself cured if it was at a constant 1-2.
However, before making the decision I would love to be better informed as to the results of Trobalt use.

 

[Bart]

Ok I am just going to ask it here ,

Has anyones t got permanently worse after Trobalt use ?

Thanks.

 

[Gill Hayes]

From reading the posts above I agree that a thread specifically for posting 'trialists' conclusions and outcomes would be really useful.

 

[amandine]

Just curious, has anyone taking Trobalt taken more than 400mg consistently

Danny Boy has but not as an aspirin but consistently

 

[Hope2015]

I have the same question like you @Bart .