Retigabine (Trobalt, Potiga) — General Discussion

[Danny Boy]

i dont know why quoted me, but yes, i tried, felt absolutely nothing

Yesterday I received my Picamilon (gaba+niazin), i took double dose (200mg), i felt more relaxed, its like taking 25gr of Trobalt xD, but the T was exactly the same

I tried that already didn't do nothing for my tinnitus, sadly.

 

[Danny Boy]

Well I got my box today delivered.
Kinda nervous about taking it.
I'll probably just end up staring at the box for the next few months

Just try it lol

 

[Albertus]

Has anyone tried Campral?

Yes, now I'm taking 333mg X2 TID, while I'm combining with metilcobalamine (B12 oriented nervous system ... neuropathies etc ..) + MSM (methylsulfonylmethane) + magnesium citrate + alpha lipoic acid + Glycine. This is giving me good results. For now I can say I have again improved as much as when I was in my higher doses of RTG.
To say that I was pleasantly surprised methylsulfonylmethane as a natural anti-inflammatory. Today I took my first dose and my T is very low.
A greeting !!

 

[1MW]

seem that antioxidative agends like nac vitamins etc give a little improvement without serious side effects

 

[Juan Carlos]

Yes, now I'm taking 333mg X2 TID, while I'm combining with metilcobalamine (B12 oriented nervous system ... neuropathies etc ..) + MSM (methylsulfonylmethane) + magnesium citrate + alpha lipoic acid + Glycine. This is giving me good results. For now I can say I have again improved as much as when I was in my higher doses of RTG.
To say that I was pleasantly surprised methylsulfonylmethane as a natural anti-inflammatory. Today I took my first dose and my T is very low.
A greeting !!

As I said some times before, @locoyeti and me experienced improvements after taper off of RTG and I warned you could have the same after the rebound effect (~2 weeks). And now see..
I also was taking Clinadil and Cat Claw but tried before with no results. So we can't be sure 100% but seems that the ones who taked lot of RTG, including DannyBoy who is tapering off, we seem to have improvement after it. Obviously we all are taking "something" after RTG and we can't be totally sure but what are the chances? big chance we all 4 got the improvement after taper off Trobalt....independetly of what we are taking now

Edit: I forgot to mention that @Mpt also said that he had improvements after taper of, said something like 'seems likes brain files the rest of T...'

how many we taked RTG for more than 4 months ?
-mtp, -locoyeti, -dannyboy, -mtp, -me <--- with improvement after taper off

@Christian78 <---- without improvement after taper off, im sorry for that bro, maybe your T cause is still present?

 

[Danny Boy]

As I said some times before, @locoyeti and me experienced improvements after taper off of RTG and I warned you could have the same after the rebound effect (~2 weeks). And now see..
I also was taking Clinadil and Cat Claw but tried before with no results. So we can't be sure 100% but seems that the ones who taked lot of RTG, including DannyBoy who is tapering off, we seem to have improvement after it. Obviously we all are taking "something" after RTG and we can't be totally sure but what are the chances? big chance we all 4 got the improvement after taper off Trobalt....independetly of what we are taking now

Edit: I forgot to mention that @Mpt also said that he had improvements after taper of, said something like 'seems likes brain files the rest of T...'

how many we taked RTG for more than 4 months ?
-mtp, -locoyeti, -dannyboy, -mtp, -me <--- with improvement after taper off

@Christian78 <---- without improvement after taper off, im sorry for that bro, maybe your T cause is still present?

I took 400mg of trobalt and 1000mg of keppra in the afternoon and my tinnitus is down to a 0. Looks like a keppra+trobalt combo is perfect.

 

[Juan Carlos]

I took 400mg of trobalt and 1000mg of keppra in the afternoon and my tinnitus is down to a 0. Looks like a keppra+trobalt combo is perfect.

Thanks, gotta give a try to keppra
If we had the studies we deserve....
millions of dollars wasted in silly things..

 

[Danny Boy]

Thanks, gotta give a try to keppra
If we had the studies we deserve....
millions of dollars wasted in silly things..

All I know is this, these meds prove that tinnitus can be managed in the future...No more crazily bad tinnitus.

 

[Juan Carlos]

I took 400mg of trobalt and 1000mg of keppra in the afternoon and my tinnitus is down to a 0. Looks like a keppra+trobalt combo is perfect.

BTW, what about Keppra side effects? felt something? humor changes?

 

[Danny Boy]

BTW, what about Keppra side effects? felt something? humor changes?

I've had no side-effects at all. Very safe drug.

 

[Juan Carlos]

I've had no side-effects at all. Very safe drug.

Thanks bro, keep it low

 

[Danny Boy]

Thanks bro, keep it low

I will.

 

[Codaz]

Yesterday i had 10/10 T & H & distorted hearing.
I got 400mg flupirtine the morning 400mg RTG & 1mg lorazepam & 30mg methyprednisolone at night.
The retigabine improved it to 8/10 but sleep & corticosteroids improved T it to 0/10 no H no distorted hearing. Today iam like 100% cured.
The problem is that situation lasts only 1.5-2 days.

That is quete a thing that corticosteroids work better than RTG.

 

[Danny Boy]

I can only say this: I think something would come up, someone would talk if they found something big.
There are just not enough evidence to support foul play. But stalling? Where to invest money? That is of essence too. Perhaps finding a cure is of no interest while temporarily alleviate the symptoms may be a better suit for them.

Still, talking about tinnitus, I really doubt they can find something that really works for most patients if it does not cure the condition. This is why I am not a big fan of, lets say, Retigabine... It simply does not work at all for many people. How could it? It doesn't cure.

I guess, but trobalt has helped many people including me....I believe trobalt gives hope to people, that soon real treatments will come to fruition.

 

[skoupidis]

I guess, but trobalt has helped many people including me....I believe trobalt gives hope to people, that soon real treatments will come to fruition.

Being a person that have tried other anticonvulsants and they all failed I just lost hope in such drugs. Trobalt is one of them. May be stronger and at higher dosage but still, putting myself at such a risk with possibility of no tinnitus reduction at all and only temporary results (if any) it is a no go for me. Now if it totally elliminated my T and made me like I was before, I would take it. But it does not seem to be that able...

 

[Danny Boy]

Being a person that have tried other anticonvulsants and they all failed I just lost hope in such drugs. Trobalt is one of them. May be stronger and at higher dosage but still, putting myself at such a risk (sideffects) with possibility of no tinnitus reduction at all and only temporary results (if any) it is a no go for me. Now if it totally elliminated my T and made me like I was before, I would take it. But it does not seem to be that able...

What was the highest dose you took?

 

[skoupidis]

What was the highest dose you took?

Neurontin-> 3x300 per day, Tegretol-> 2x200.

 

[Danny Boy]

Neurontin-> 3x300 per day, Tegretol-> 2x200.

So you haven't taken trobalt?

 

[skoupidis]

So you haven't taken trobalt?

Nope.

 

[Danny Boy]

Nope.

Ok? Well, try trobalt before you knock it lol

 

[skoupidis]

Ok? Well, try trobalt before you knock it lol

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.

 

[Danny Boy]

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.

Well, it's entirely up to you...All I know is it works for me and many others, so really the choice is yours. Most people have found it permanently reduced their tinnitus.

 

[skoupidis]

That is quete a thing that corticosteroids work better than RTG.

No they don't. They only work for 1MW. He is a strange case... T gone? Who experience that? I envy you man. (@1MW ) But you do take A LOT of serious stuff altogether.

 

[skoupidis]

Well, it's entirely up to you...All I know is it works for me and many others, so really the choice is yours. Most people have found it permanently reduced their tinnitus.

Apart from mpt who has totally left the forum and opened the Retigabine topic, who else got cured?

 

[Danny Boy]

No they don't. They only work for 1MW. He is a strange case... T gone? Who experience that? I envy you man. (@1MW ) But you do take A LOT of serious stuff altogether.

"Edit: I forgot to mention that @Mpt also said that he had improvements after taper of, said something like 'seems likes brain files the rest of T...'

how many we taked RTG for more than 4 months ?
-mtp, -locoyeti, -dannyboy, -mtp, -me <--- with improvement after taper off"

 

[skoupidis]

"Edit: I forgot to mention that @Mpt also said that he had improvements after taper of, said something like 'seems likes brain files the rest of T...'

how many we taked RTG for more than 4 months ?
-mtp, -locoyeti, -dannyboy, -mtp, -me <--- with improvement after taper off"

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

 

[Danny Boy]

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

Well, I don't know. I just post progress updates. Look, I'm not here to convince you to try trobalt, I'm here to say it's working for me and could potentially work for you. I don't make any promises.

 

[skoupidis]

Well, I don't know. I just post progress updates. Look, I'm not here to convince you to try trobalt, I'm here to say it's working for me and could potentially work for you. I don't make any promises.

And that is why I don't take it. I won't take another drug just to try and see if it helps. Especially not one that dangerous and hard to obtain. There are so many people who tried it and so few of them found relief. Now if I had it I would probably try it. But I don't. And I am simply so fed up with doctors right now to beg them to prescribe it to me. They don't know sh!t but when I asked them about trobalt they react as if I ask them to give me poison or something. It is that difficult.

 

[Danny Boy]

And that is why I don't take it. I won't take another drug just to try and see if it helps. Especially not one that dangerous and hard to obtain. There are so many people who tried it and so few of them found relief.

Well, I respect your choice and understand completely.

 

[Danny Boy]

Apart from mpt who has totally left the forum and opened the Retigabine topic, who else got cured?

Answered in another thread.