Retigabine (Trobalt, Potiga) — General Discussion

[Pumpkinate]

Ah there is someone that after take retigabine and after stop it... T remains better than before? Because my intention is to try it and use it just one time in a year, for example during holiday, not always.

I have the same plan as you, hopefully use it for a little while and then stop and maybe it will have a lasting effect. I have noise induced tinnitus and I've been on retigabine for 6 days now. I'd say the tinnitus is "less annoying" but it seems to be from a combination of the loudness going down maybe 20% and the fact I feel sedated so perhaps less annoyed by the tinnitus too. I certainly sleep better, that was my major problem resulting from the tinnitus.

If the production stops you should still be fine to get some in the next few months to give you a supply for your intermittent use.

 

[Kyxwz]

I have the same plan as you, hopefully use it for a little while and then stop and maybe it will have a lasting effect. I have noise induced tinnitus and I've been on retigabine for 6 days now. I'd say the tinnitus is "less annoying" but it seems to be from a combination of the loudness going down maybe 20% and the fact I feel sedated so perhaps less annoyed by the tinnitus too. I certainly sleep better, that was my major problem resulting from the tinnitus.

If the production stops you should still be fine to get some in the next few months to give you a supply for your intermittent use.

I get it. Keep me updated What dose you take? Many users report that T decrease after 400mg x 3 daily.
I hope they don't stop production! Also because it is a SINGLE medicine. There are no others drugs such as retigabine.

 

[Pumpkinate]

I'm up to 200mg three times a day so far.

 

[Kyxwz]

I'm up to 200mg three times a day so far.

Follow by a doc. or do it from yourself?
Have you notice a decrease of your Tinnitus?

 

[Kyxwz]

Directly from GSK england:

"Dear,

As you may be aware, the label for retigabine in epilepsy has been restricted since 2013. It is still available to a limited number of patients with partial onset seizures, a particular type of epilepsy, through their prescribing physicians, although this is only a very small number of patients worldwide. We are conducting an ongoing review but at present the product is available to these patients and being manufactured.

Thank you, Frannie"

"Thank you very much for your answer. I will see my neurologist tomorrow for a trial of two months under retigabine because seems that give very positive results on Tinnitus and this positive results, partial, seems to remains after the suspension. I know, "we" don't have epilesy but unfortunatly the underlying mechanism (tinnitus & epilepsy) appears to be similar. And believe me... I prefer to live 5 or 10 years without tinnitus than 1000 or more under this terrible condition. Tinnitus ruined my life and the lives of many."

And they know our use or sporadic use.

So... something could change in next future but probably they don't suspend at all retigabine production.

I will try RTG soon. I hope that works for me. Just two months on and hope that after my T remains low than before. Near three months from my acoustic trauma...

 

[Christian78]

Directly from GSK england:

"Dear,

As you may be aware, the label for retigabine in epilepsy has been restricted since 2013. It is still available to a limited number of patients with partial onset seizures, a particular type of epilepsy, through their prescribing physicians, although this is only a very small number of patients worldwide. We are conducting an ongoing review but at present the product is available to these patients and being manufactured.

Thank you, Frannie"

"Thank you very much for your answer. I will see my neurologist tomorrow for a trial of two months under retigabine because seems that give very positive results on Tinnitus and this positive results, partial, seems to remains after the suspension. I know, "we" don't have epilesy but unfortunatly the underlying mechanism (tinnitus & epilepsy) appears to be similar. And believe me... I prefer to live 5 or 10 years without tinnitus than 1000 or more under this terrible condition. Tinnitus ruined my life and the lives of many."

And they know our use or sporadic use.

So... something could change in next future but probably they don't suspend at all retigabine production.

I will try RTG soon. I hope that works for me. Just two months on and hope that after my T remains low than before. Near three months from my acoustic trauma...

I tought Germany has no Retigabine becouse they dont want to pay its big price? At least it was like that 1 year ago...

 

[Pumpkinate]

I seriously hope this is true. It seems to be helping me at 200mg 3 times a day!

It's strange because I was told something very different. Bear in mind that I am a medical specialist and was enquiring through their doctors' enquiry department, so you'd think I'd get an accurate response. It was not a unconsidered reply either, it took them a week to look into the matter with Headquarters!

I haven't read the whole thread but I get a strange side effect for about 30 min, maybe an hour after taking the tablet. I really appreciate how things are made for that 30 min, like I pick up a small surgical instrument and think "great how they made this thing so small and perfect....."

 

[Kyxwz]

ATTENTION!
It's one of the last news about TROBALT from GSK (april/may 2016):

• Retigabine (TROBALT®): risk of acquired vitelliform maculopathy
• Information type: Safety alerts
• Source: GlaxoSmithKline Plc.
• Specialities: Eyes and vision | Neurological disorders
• Summary
  A letter from GSK advises that acquired vitelliform maculopathy has been diagnosed in some patients taking retigabine, and that macular optical coherence tomography tests should be undertaken at baseline and at least every six months for patients taking retigabine.

This is the a true dangerous and degenerative problem. I have a prescription for trobalt but after read that i am scary. I don't know if give it a try. We don't know if retigabine could cause damage after years even if it used only for a few months.

I don't know what to do.

 

[just1morething]

I don't know what to do.

Too risky IMO. I've heard of a couple people getting bad eye floaters from Trobalt. One of them after just 1 dose.

 

[Kyxwz]

Too risky IMO. I've heard of a couple people getting bad eye floaters from Trobalt.

Do you have try trobalt?

About eye floaters:
Yep, Also Danny, my FB friend (and the first people on this forum that i have search for info about trobalt).
But eye floaters are not a maculopathy and in the baddest case you can operate them with laser.
Maculopathy instead is a neurodegenerative problem and like Tinnitus, in 2016, there is nothing you can do. Just hope not to go blind (it's rare to become blind for this form of maculopathy but you loss central vision and i am 26 Years old not 60! So if i get maculopathy at 26... with Tinnitus... suicide is on my way).

 

[just1morething]

Do you have try trobalt?

No, I have not. Risk-benefit ratio is too high for me. Most Dr.'s have a "do no harm" policy regarding prescribing drugs. Trobalt would not fit that category.

 

[Mithrandir]

@Kyxwz try AM101. Trobalt is not a good thing, try it if you want/can, maybe you can have some relief.

 

[Kyxwz]

@Kyxwz try AM101. Trobalt is not a good thing, try it if you want/can, maybe you can have some relief.

I can't try AM101. Italy it's out from trial.

Do you have try trobalt right? I remember your avatar on trobalt user report but i don't know exactly!

 

[Mithrandir]

I tried trobalt, a fail for me, and I think I have some visual problems now, it's a dangerous drug, good luck

 

[Kyxwz]

No, I have not. Risk-benefit ratio is too high for me. Most Dr.'s have a "do no harm" policy regarding prescribing drugs. Trobalt would not fit that category.

Yes but so i live with a the terrible question:
maybe until it's not past a long time since acoustic trauma Trobalt could leave tinnitus at a lower level than before!

Hamlet question.

 

[monacco]

I am on trobalt now

 

[Kyxwz]

I am on trobalt now

Since?
Tinnitus it's pretty low?
Eyes or vision problems?

 

[monacco]

@Kyxwz @Poyraz
Well , i take trobalt ocasionally ,only in days when my T gets worse, Two or three days/week I take tow pills of 200 mg per day I didn't have side effect right now.
I take it ocacionally to avoid falling in the independence of this médecine
This drug is giving me some relief especially in hard days.

 

[Martin69]

@Kyxwz @Poyraz
Well , i take trobalt ocasionally ,only in days when my T gets worse, Two or three days/week I take tow pills of 200 mg per day I didn't have side effect right now.
I take it ocacionally to avoid falling in the independence of this médecine
This drug is giving me some relief especially in hard days.

Similar to me. I take 200 mg on occasion. At the moment, only once per week. Only on the very hard days. I think I can take more than only on one day per week. Maybe twice or three days. Don't want to take too much of this poison.

 

[monacco]

Don't want to take too much of this poison.

Hhhhh this poison that calms down our neurons I dislike taking this drug you know why ? Because somedays makes me remember my previous life ,I would like have this kind of drug without side effect

 

[Mario martz]

Hhhhh this poison that calms down our neurons I dislike taking this drug you know why ? Because somedays makes me remember my previous life ,I would like have this kind of drug without side effect

No "eeee" not even covering your ears? :O

 

[Martin69]

Hhhhh this poison that calms down our neurons I dislike taking this drug you know why ? Because somedays makes me remember my previous life ,I would like have this kind of drug without side effect

Everything comes with a cost.
Side effects are good for me, some dizziness and less anxiety.

 

[Mario martz]

i have a "stupid" question about this...
when you are on this medication, can you expose to sound?
no spikes?

 

[monacco]

No "eeee" not even covering your ears? :O

May be it will hapen in paradis
My ''sssssssss'' not ''eeeee'' decreased from 7 to 3 or 4 At point bearable but never zéro

Everything comes with a cost.
Side effects are good for me, some dizziness and less anxiety.

I like these side effect ,I will continue taking this drug even my T stops lol

 

[Kyxwz]

Similar to me. I take 200 mg on occasion. At the moment, only once per week. Only on the very hard days. I think I can take more than only on one day per week. Maybe twice or three days. Don't want to take too much of this poison.

@Kyxwz @Poyraz
Well , i take trobalt ocasionally ,only in days when my T gets worse, Two or three days/week I take tow pills of 200 mg per day I didn't have side effect right now.
I take it ocacionally to avoid falling in the independence of this médecine
This drug is giving me some relief especially in hard days.

Ah so you use Trobalt occasinally?
Peraphs i could try trobal just for 7/10 days without bad side effects and see what happen with my T. For you Trobalt work "immediatly"?!

 

[Poyraz]

How can I get some Trobalt? Prescribed by a doctor?

 

[Kyxwz]

How can I get some Trobalt? Prescribed by a doctor?

Yes and it's better to have someone that follow you if you want give it a try.
Or... in a desperate case, just with a false white recipe (photoshop...) but it depend for every state. This is at your own risk.

 

[monacco]

For you Trobalt work "immediatly"?!

15 to 20 after taking it I feel its effect
3 pills of 200 mg are enough to silence my tinnitus for a whol of day.
But i can't take it every day it's too risky and as I said befor I dislike it because it makes me remember the days when I was in paradis

 

[Kyxwz]

15 to 20 after taking it I feel its effect
3 pills of 200 mg are enough to silence my tinnitus for a whol of day.
But i can't take it every day it's too risky and as I said befor I dislike it because it makes me remember the days when I was in paradis

"I dislike it because it makes me remember the days when I was in paradis" what does it means? You dislike it because you can remember the first time on trobalt with a very good effect (and you can't reach the same another time because it's dangerous), right?

15/20 days or minutes? Because i don't know if try trobalt but peraphs for one weeks i could try.

Last question, do you have floaters?

AND WHY A LOT OF TINNITUS PEOPLE HAVE FLOATERS???? WHY???? Just a coincidence for doc. but i don't know.

 

[Poyraz]

AND WHY A LOT OF TINNITUS PEOPLE HAVE FLOATERS???? WHY???? Just a coincidence for doc. but i don't know.

This is one of things that I really wonder. If you look at the last thread I started the other day we have lots if things in common.

-Ear Crackling
-Ear Fluttering
-Sensation of The Tinnitus(more than sound)
-Ear Floaters(I don't have it though)

I really, really wonder why.