Retigabine (Trobalt, Potiga) — General Discussion

Who knows. Maybe you are right. In any case. Fingers crossed...

 

i think that the people that got VS from RTG should open a communication line with each other not just for support but to somehow figure out what is common between your cases. perhaps there was a uniquely similar provenance of the RTG (a bad batch/manufacturer)? i would like to know how something like this could happen when a good number of others had no such symptoms.
my deepest sympathies go out to those of you who are experiencing VS from RTG, i hope that it will get better or even go away with time.

 

Hi @locoyeti,
Are you still taking trobalt?

 

nope.
i would say it did help me significantly with hyperacusis and habituation.

 

In my case it did get better and I suppose it's because I literally consumed only 2 pills (200mg total).

 

I have only 4 pills of Trobalt left and I'm in panic...

Where can I find more?

Also Flupirtine does not exist in the European pharmacies.

 

Ask Danny Boy?

 

The thing is that it had stopped being manufactured. Also residual stock from people had probably expired.

 

I found it here but it is very expensive 25 mg 89€.
https://www.sigmaaldrich.com/catalog/product/sial/90221?lang=en

 

That doesn't sound right. 50 mg was the lowest dosage that GSK produced.

 

It looks like a generic medication. Should technically have the same efficacy assuming Trobalt didn't have some special coating on the tablet the generic does not replicate.

 

@1MW Inbox me.

 

No, trobalt was not coated. It was not timed release or anything.

I've been slowly tapering off for months cutting the 200's into quarters, but haven't completely stopped. I keep going back to it after my tinnitus ramps up following loud noises.

Call me crazy, but personally Flupirtine scares me more than Trobalt. I don't think my liver could handle it.

 

If Retigabine is expired does it not work?
Over the last few I've taken Retigabine and it does not work as it used to work...

I took a pill 1 hour ago and it hasn't improved the tinnitus.

 

I have been taking Retigabine, as I would an Aspirin for a headache, i.e. when the tinnitus is worse I pop a 200 mg tab to calm it down.

This I have been doing for the last three years, and it's helped me habituate. I still have enough for a year to 16 months, but hope I will have totally habituated or found an alternative in the time I have left with this drug.

I have had no visual snow or bad side effects using it in this way. I find that the old stories about ignoring it are becoming true. It is very hard to imagine in your first 3-4 years of having tinnitus that you could ever ignore it, but you do eventually, it becomes less important on a weekly basis.

It was thanks to Danny Boy that I tried Trobalt/Retigabine, for me it has been very useful, if used carefully.

 

Has yours expired?

 

If I already have "visual snow", can Retigabine or Flupirtine make it worse?

 

My retigabine, yes it is expired.
If you have visual snow, everything can make it worse.

 

its very hard on me all these years and well let me say, i do pray a lot and hope there is a cure found soon. 37 years of noise...I cannot believe something hasn't been found to eradicate all these crazy sounds.

 

I swear I'd be remembered for trobalt forever lol

 

Well you did go on the record and say it cured you...

 

I retracted that, as it was temporary. It lowered it however. I still have tinnitus, just not 10/10 with hyperacusis. But as I will say, I got Visual snow from this med, causing me more mental problems...So wouldn't recommend, well it doesn't matter it's been taken off the market. Let's hope the second gen analogs create a soulton with a good side effect profile.

 

I got visual snow but I've never taken that drug. When I went to the ophthalmologist, I told him about this problem and they totally dismissed it, it's as if he didn't believe in it. Visual snow has worse awareness than tinnitus.

 

Until you got visual snow, for how long you took trobalt and what was the dosage?
Did you continue to take trobalt after you got VS? If yes, did it get worse?
Do you also have floaters or derealization with VS?

 

Danny I need to talk to you ASAP, but I cant start a PM with you. How can I get in touch? Thanks

 

I have Dr, VS and tinnitus. All started at the same time, with 2 floaters on each eye

 

How would you rate your tinnitus now?

 

It looks like HPPD, I wonder if potassium channel modulators such as Retigabine can cause or worse it.

 

Isnt that supposed to be induced with LSD or something like that?

 

Not only, in my case it was weed. It weakened over time, just need not pay attention...