Retigabine (Trobalt, Potiga) — General Discussion

[sakrt]

I just explained in my previous post why I choose not to. Also, seeing the progress report of other user's experiences I feel discouraged. I don't even thing of getting into trouble of finding a way to get it, persuading my doctor, ordering it etc... There are so many cons and possibly no pros.

Skoupidis: I feel the same way, therefore my disbelief in reading "StudyTrials" like Autifony who are "awarded millions" for something not yet approved and short-term it is. My T alongside some other issues are VERY bad and DannyBoy suggested Trobalt. My neuro. previously prescribed me 600 mg of Gabpentin, which resulted in worsening T plus daily migraines, thus I stopped taking. I looked up Trobalt in US version, which is Potiga. What's to lose, except the rest of your sanity to try? I asked my Neuro. of it, which I am still awaiting a reply. (It supposedly helps migraines too). It may not be for my symptoms - do not know yet.
DannyB.- how many mg. did you suggest?
You took Neurontin. You're aware Pfizer were penalized to pay millions for distributing this unapproved drug on the market? Therefore, it may have been wrongly prescribed. Much info. online of fraud from pharmaceutical co.
http://www.reuters.com/article/2014/06/02/us-pfizer-neurontin-settlement-idUSKBN0ED1IS20140602
(Awaiting for one of Pfizer's shareholders in this thread to state that I created this conspiracy theory)...

 

[Danny Boy]

Skoupidis: I feel the same way, therefore my disbelief in reading "StudyTrials" like Autifony who are "awarded millions" for something not yet approved and short-term it is. My T alongside some other issues are VERY bad and DannyBoy suggested Trobalt. My neuro. previously prescribed me 600 mg of Gabpentin, which resulted in worsening T plus daily migraines, thus I stopped taking. I looked up Trobalt in US version, which is Potiga. What's to lose, except the rest of your sanity to try? I asked my Neuro. of it, which I am still awaiting a reply. (It supposedly helps migraines too). It may not be for my symptoms - do not know yet.
DannyB.- how many mg. did you suggest?
You took Neurontin. You're aware Pfizer were penalized to pay millions for distributing this unapproved drug on the market? Therefore, it may have been wrongly prescribed. Much info. online of fraud from pharmaceutical co.
http://www.reuters.com/article/2014/06/02/us-pfizer-neurontin-settlement-idUSKBN0ED1IS20140602
(Awaiting for one of Pfizer's shareholders in this thread to state that I created this conspiracy theory)...

For what drug? Trobalt?

 

[sakrt]

Yes - I don't recall at this time how many mg. was suggested which helped your T to be tolerable for now. Did you increase dosage overtime from what to ...?

 

[Danny Boy]

Yes - I don't recall at this time how many mg. was suggested which helped your T to be tolerable for now. Did you increase dosage overtime from what to ...?

400x3 a day.

 

[valeri]

Dude, that's like 3 people but you typed like they where 5...

As I see it even if a particular drug helped 3 people with tinnitus its something!
you also have to understand the difficulty to obtain trobalt, otherwise there would be more people willing to try.
At the end of the day, as @Danny Boy said, it's a personal choice and no need to minimise results other members achieved.

 

[undecided]

Just wanted to share an experience. Just took 200mg RTG and 200 mg Keppra.
The effect was miraculous.
No T. I mean no T even if I blocked my ears. Sat down and ate a salad. It tasted spectacular. A salad.
A little stoned feeling as always, maybe more pronounced a bit.

To all researchers. Stop with the friggin' maskers. You got a cure here just waiting to be found. The only thing lacking is duration. The feeling just stops after a couple of hours leaving you with a milder tinnitus.

 

[ridgew]

Has anyone had any improvement with feeling of pressure in ears while taking this type of medications? Didn't find much with search.

 

[Danny Boy]

Has anyone had any improvement with feeling of pressure in ears while taking this type of medications? Didn't find much with search.

Not that I know of. Have you seen an ENT about it?

 

[ridgew]

Not that I know of. Have you seen an ENT about it?

ENTs don't what it is. I'm talking about that feeling of fullness which many T & H sufferers have, especially often with acoustic traumas. For many it passes, but for some like me, it doesn't.

And as it's so closely related to these two misfortunes, probably these drugs can influence it. May be it's those voltage pathways as well?

 

[Danny Boy]

ENTs don't what it is. I'm talking about that feeling of fullness which many T & H sufferers have, especially often with acoustic traumas. For many it passes, but for some like me, it doesn't.

And as it's so closely related to these two misfortunes, probably these drugs can influence it. May be it's those voltage pathways as well?

Maybe...I'd try keppra first as it doesn't have major side-effects like trobalt.

 

[luigilo]

@Danny Boy @undecided
Oh my god it happened , how is the world without tinnitus ?

 

[1MW]

World without T has a nice peaceful feeling. Absolute calmness.
Today also i have no T with closed ears.
I have not tried the combo leviracetam+retigabine..
Other strong combos are rtg+flupirtine

 

[locoyeti]

Just wanted to share an experience. Just took 200mg RTG and 200 mg Keppra.
The effect was miraculous.
No T. I mean no T even if I blocked my ears. Sat down and ate a salad. It tasted spectacular. A salad.
A little stoned feeling as always, maybe more pronounced a bit.

To all researchers. Stop with the friggin' maskers. You got a cure here just waiting to be found. The only thing lacking is duration. The feeling just stops after a couple of hours leaving you with a milder tinnitus.

interesting. are you going to be taking this regularly? please let us know the results after every dose. if this stops t without fail everytime, well that is an improvement over RTG, which sometimes does not stop the t.

 

[1MW]

rtg alone to me can stop T if it is 1/10 2/10 max if it is more only lowers it.

 

[amandine]

Just wanted to share an experience. Just took 200mg RTG and 200 mg Keppra.
The effect was miraculous.
No T. I mean no T even if I blocked my ears. Sat down and ate a salad. It tasted spectacular. A salad.
A little stoned feeling as always, maybe more pronounced a bit.

So looks like danny boy is right then. He took only retigabene for five months and then went onto keppra and retigabene - now he has no t as well.

 

[locoyeti]

So looks like danny boy is right then. He took only retigabene for five months and then went onto keppra and retigabene - now he has no t as well.

2 cases is not proof (but is a solid base for further inquiry).

 

[1MW]

The big question is what happens after stopping retigabine+leviracetam...
The goal is the the permanent effect.
Temporary is also important for psychology to know that if you have T exists
a combo of drugs to stop T for some hours.

 

[undecided]

interesting. are you going to be taking this regularly? please let us know the results after every dose. if this stops t without fail everytime, well that is an improvement over RTG, which sometimes does not stop the t.

Yeah, I plan to take the combo regularly (once a day, that is).
I believe keppra potentiates the RTG - or the other way around - and the 'silence' effect is even more pronounced.

Now if you're asking me if this is going to be a permanent 'cure'... Hardly.

BUT, one can get away by using a small amount of RTG (say 100mg per day) combined with a safe drug such as keppra, therefore minimizing the risks of 900-1200mg of daily RTG doses (which have been proven to be dangerous in the long run).

 

[SoulStation]

So looks like danny boy is right then. He took only retigabene for five months and then went onto keppra and retigabene - now he has no t as well.

He still has t . He just treats it for a few hours to 0. I don't want people to get the wrong idea.

 

[1MW]

I got the combo before 70 mins rtg 200mg + lev 125mg and before take it i had 3-4/10 T.
Iam stoned and food has nice taste.
Works but not 0/10 i think is 1/10 or 0.5/10.

 

[Danny Boy]

He still has t . He just treats it for a few hours to 0. I don't want people to get the wrong idea.

Few hours? More like the whole day lol I only take trobalt 400mg once a day.

 

[1MW]

After 3 hours of rtg + lev extreme HF T .
Ototoxic combination detected!!!
Back to benzos + corticosteroids to revert this fucking suicide T.

 

[SoulStation]

Few hours? More like the whole day lol I only take trobalt 400mg once a day.

I just wonder if thus is an all day cure for you why are you still investigating othe treatments? I figure you have everything you need no?

 

[Danny Boy]

I just wonder if thus is an all day cure for you why are you still investigating othe treatments? I figure you have everything you need no?

Everyone needs a contingency plan. I just need to make sure, I can lower this permanently, as I couldn't live with my previous tinnitus and to be honest, I might as well have a gun to my head if my previous tinnitus returns. Gosh, just trying to live is so hard...

 

[Danny Boy]

After 3 hours of rtg + lev extreme HF T .
Ototoxic combination detected!!!
Back to benzos + corticosteroids to revert this fucking suicide T.

Trobalt isn't ototoxic? Benzos are ototoxic, so what the?

 

[ruben ruiz]

So Norbalt is BS? How mean!

 

[grandfunk1]

From almost 0/10 to mega t? Seems odd.

 

[1MW]

I had 3-4/10 T took rtg+lev went to 0.5/10 and i was stoned after 3 hours when rtg + lev weared off
My T exploded to 11/10 > 16khz.
This T was suicide T so i took 2mg lorazepam to sleep and 28mg methyprednisolone
now after 7 hours from methyprednisolone i have no T.
RTG + lev are T & H killers but only some hours after that bad worsening happens

 

[Danny Boy]

I had 3-4/10 T took rtg+lev went to 0.5/10 and i was stoned after 3 hours when rtg + lev weared off
My T exploded to 11/10 > 16khz.
This T was suicide T so i took 2mg lorazepam to sleep and 28mg methyprednisolone
now after 7 hours from methyprednisolone i have no T.
RTG + lev are T & H killers but only some hours after that bad worsening happens

How many benzo drugs do you take?

 

[1MW]

Iam not taking regulary only yesterday took to sleep with this 11/10 T.
Benzos are ototoxic