Retigabine (Trobalt, Potiga) — General Discussion

#7,951
Alue said:
That is strange, I wonder if it's some sort of paradoxical reaction after discontuing the medication. But you weren't on it for long nor were you taking a high dosage.
I'm still on a low dosage, and I know I really need to taper off completely. I'm crossing my fingers and hoping it goes smoothly.
I hope the VS improves for you. I wouldn't assume it's permanent just yet.
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Who knows. Maybe you are right. In any case. Fingers crossed...
 
#7,952
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.
 
#7,955
locoyeti said:
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.
Click to expand...
In my case it did get better and I suppose it's because I literally consumed only 2 pills (200mg total).
 
#7,956
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.
 
#7,958
1MW said:
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.
Click to expand...
The thing is that it had stopped being manufactured. Also residual stock from people had probably expired.
 
#7,963
Pleasure_Paulie said:
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.
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No, trobalt was not coated. It was not timed release or anything.


1MW said:
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.
Click to expand...

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.
 
#7,964
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.
 
#7,965
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.
 
#7,969
Emanuel Lourenco said:
The thing is this is not a problem to be solved... this is a problem that is deemed a success when people learn to live with with it and cope basically leading a crap life but you know... they think more positively so it seems that it doesn't suck as much... How many are there in the forum that even after years and decades are still taken down by T ...Believe me, there are days that I try... I want to not let this affect me, I want to try and focus my energy on something else, I want to because I miss feeling happy or at peace... But I can't I fail everyday because this is something relentless and forever permanent there is not one moment of rest from this.. except sleep which is also a lot harder to acquire because of this. There is no peace anymore there is no quiet and that brings me down, more down that I ever imagined I could get. There is no more will to live... I'm just trying to hold on as much as possible because we are not ready to deal with death ever, the thought frightens me and so does the thought of living with this condition for the rest of my life
Click to expand...

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.
 
#7,970
Tony Joy said:
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.
Click to expand...

I swear I'd be remembered for trobalt forever lol
 
#7,972
Pleasure_Paulie said:
Well you did go on the record and say it cured you...
Click to expand...

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.
 
#7,973
PatrickG said:
We are three from TT that are desperately looking for treatment for our severe visual snow that we got from Trobalt. It's like Russian roulette using this drug.
Click to expand...

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.
 
#7,974
Danny Boy said:
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.
Click to expand...
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?
 
#7,975
Danny Boy said:
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.
Click to expand...


Danny I need to talk to you ASAP, but I cant start a PM with you. How can I get in touch? Thanks
 
#7,977
Danny Boy said:
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.
Click to expand...
How would you rate your tinnitus now?
 

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