Retigabine (Trobalt, Potiga) — General Discussion

[amandine]

@SoulStation , are you on Trobalt and stopping now ?

My point classically proven. If Soul Station (no offence - not personal - not you but anyone / everyone) had put his info as follows in my quote and earlier posts on his post then RaZaH would not have asked but could appreciate soul stations post with more information.

Age
When T started
How it started
When started Trobalt
Current dosage

Anyhow, if peope dont want to then they dont want to....just thought it was a good idea and provided more up to date information.
RaZaH (again no offence and not personal - not you in particular but just happens to be you for this example) did not click on soul stations profile or go to the users experience thread to find out if soul station was using trobalt or not. Why not? Cos it is easier to ask a one line question rather than look back at the threads. Human nature I am afraid. Quite natural.
Please any chance of trobalt users putting the above info on each post? Or is this impossible?
This is the last post I shall make about this ..............no point in flogging a dead horse is there.....as @Zimichael said above.

@amandine ...Your desire to have all trialees post their dosage, age, T info, etc. on every post is commendable. However, if it happens I will fax you my Trobalt prescription as a reward.
I have been trying for quite some time to just get members to post basic info on their T (let alone personal information!) on their Profiles/Information tab...and I am afraid it has been rather unsuccessful despite how easy it would be.

 

[SoulStation]

Ok, mate . Did this stuff manage to have an effect on your T ?

Yes but it f**ks with SO much of your cognitive ability... Memory...remembering how to play your instrument / coordination...tremors...etc
..not saying what you mean. Its like a toxic pot that affects all sorts of your body but helps lower your t if you're lucky.

 

[SoulStation]

I'm going to a urologist tomorrow morning. I'm sure he'll set me straight.

 

[undecided]

I totally agree with @SoulStation.
You don't know what hit you. Here's a new one:
Today, I took my morning dose around 6:40... After 2 and a half hours, in my car, heading to work, I keep thinking the same words over and over (I was not hearing voices), like a song that is stuck in my mind.
I thought this is it, now I'm a psychotic (a quiet psychotic though, I had a pretty silent day).
That stopped about 1-2 hours later.

No more 300mg for me.
This is the most potent (in a bad way) drug I've ever had the displeasure of taking.

 

[RaZaH]

That is scary stuff . now I am undecided
I am very sensitive drugs in general, never take anything for a headache or anything.
I am still recovering from Benzo´s , 3 years later.
Not sure I am willing to offer any more of my cognative abilities.
sigh..

 

[nills]

I have read through this thread and am i correct that some people used trobalt and than slowly stopped and their Tinnitus did not reappear? or is it just a relief while using it .. I also read the other thread and find the information giving for broad but a bit difficult to put the pieces together ... anyway it would be nice if there would be a single thread where people can share their final outcome by a list of points so the info gets condensed into a single post per user ... maybe something for near futue or couple of months?

thank you so much for all the brave souls doing this experiment ... at the moment i`m in portugal and might pass through Spain in a couple of months and maybe would try the same experiment ...

much love and respect to all of us x

 

[SoulStation]

Only side effect of Retigabine im afraid of is this about retinal degeneration after prolonged use

Dude you did say you had minor urinary hesistation- if that is true I would at least do a quick kidney blood test.

 

[locoyeti]

I totally agree with @SoulStation.
You don't know what hit you. Here's a new one:
Today, I took my morning dose around 6:40... After 2 and a half hours, in my car, heading to work, I keep thinking the same words over and over (I was not hearing voices), like a song that is stuck in my mind.
I thought this is it, now I'm a psychotic (a quiet psychotic though, I had a pretty silent day).
That stopped about 1-2 hours later.

No more 300mg for me.
This is the most potent (in a bad way) drug I've ever had the displeasure of taking.

i totally get you man. we started this around the same time, and i am having basically the same side effects, although i must say they are starting to come down, and i am getting a bit more used to this drug. given that i am only trying for like 4 months, and its plausible that it might have a permanent effect on T, i think that is worth the risk, at least for myself (my T has totally upended my life). the effect this drug has on me is to significantly lower the volume, to the point where what is left is not very bothersome. sometimes i have near silence, and about 2 days i had spikes, but they were far less bothersome than the ones i had before potiga. on the third day i was taking this stuff, with all the brain zaps that were occurring, i was seriously thinking about quitting, and called a doctor friend of mine. he said don't worry just keep at it and you will get results. i am glad i listened because the side effects are getting much easier to deal with as the days go on. in @Mpt 's recent post he said the same thing, that for 2-4 weeks his t was so low that it was bearable, but after 1 month it was basically gone. im gonna give 300mg TID at least a month before i quit, i say hammer through the hiccups if you really want the effect of this drug. and @SoulStation i wish we knew how you would react on 3oomg TID, i feel that you never really gave this drug a proper shot, but i understand your reasons to discontinue. I am eager to see how you guys do on your taper downs. good luck

 

[amandine]

@Nils
I would give up on this if i were you.
Seems it is too difficult to get anything organised like this...
please look back thru the posts of the last two pages or so
would be good
or maybe look under users experiences at bottom of page here
best collation of info there is at the moment

 

[RCP1]

@locoyeti

You the man. Sheer guts and determination!

 

[locoyeti]

Also, the cognitive side effects, at least for me (and i think @Christian78) only last for a few hours after you take the drug. and that is usually just the morning dose for me. i am also getting much better at managing them. But the effects on my T are lasting much longer, in fact other than the random two spikes i had (which went away rather quickly), my t never goes back up on this drug, it only goes down (relative the level i wake up at).
I totally get the 'psychosis' issue you were talking about @undecided , but i think that is the mild 'psychedelic' effect that seems to come randomly, mixed perhaps with some latent anxiety. if you've not had experience with a psychedelic, that might throw you for a loop. the advise i got was to just say to yourself, 'everything is going to be just fine'.

 

[SoulStation]

I said it before and I'll say it again for those newbies. This drug can be DANGEROUS. Think about it. @locoyeti I wish you all the luck in the world but if you were in my shoes you'd be singing a different tune. I personally think for sure now this whole "permanent" fix thing is BS. Ill say it I think @Mpt got lucky. Someone prove me wrong!

 

[SoulStation]

How bout I up load a video of me playing guitar and you can see the tremors in action?

 

[Christian78]

Also, the cognitive side effects, at least for me (and i think @Christian78) only last for a few hours after you take the drug. and that is usually just the morning dose for me. i am also getting much better at managing them. But the effects on my T are lasting much longer, in fact other than the random two spikes i had (which went away rather quickly), my t never goes back up on this drug, it only goes down (relative the level i wake up at).
I totally get the 'psychosis' issue you were talking about @undecided , but i think that is the mild 'psychedelic' effect that seems to come randomly, mixed perhaps with some latent anxiety. if you've not had experience with a psychedelic, that might throw you for a loop. the advise i got was to just say to yourself, 'everything is going to be just fine'.

Yeah, the morning dose is killer!

and for me i maybe in evening i can stand on one foot, during day trying to stand on one foot is killer.

also i love going to cinema when i come to my parents. i got it is only 2 euro, for 3D. I watch all movies, i never speak. this evening in bio i could keep sitting and i was taking all the time. hyperactivity or whatever... must plan to take pill 3h before movie minimum!

i am on 2oo morning +200 afternon +250 evening.

 

[Champ]

Yeah, the morning dose is killer!

and for me i maybe in evening i can stand on one foot, during day trying to stand on one foot is killer.

also i love going to cinema when i come to my parents. i got it is only 2 euro, for 3D. I watch all movies, i never speak. this evening in bio i could keep sitting and i was taking all the time. hyperactivity or whatever... must plan to take pill 3h before movie minimum!

i am on 2oo morning +200 afternon +250 evening.

Hey Christian, just curious, when are you planning on tapering down? I know you've been on it for a while, so at this point for you the only way to determine that it indeed has permanently stabilized your potassium gated channels is to eventually wean yourself off it. I'm assuming you should have permanently lower volume at that point.

Just wondering man!

 

[Christian78]

Hey Christian, just curious, when are you planning on tapering down? I know you've been on it for a while, so at this point for you the only way to determine that it indeed has permanently stabilized your potassium gated channels is to eventually wean yourself off it. I'm assuming you should have permanently lower volume at that point.

Just wondering man!

I tried to go under t returns.

 

[amandine]

@Christian

You have tried so hard with this and suffered so many side effects and yet you still keep going. So brave and I have said before, you are a true pioneer among us! Always be proud of yourself for this! I really hope that you begin to be able to taper the trobalt soon and so can stop the side effects that you are suffering.

Just another thought:
No offence to mpt but just have these questions:
so did @Mpt have full blown T? what we refer to as intrusive T? or does it depend on how the person reacts to it? Not sure. I dont know.
In mpt's posts he says in some of them that sometimes he has it in one ear, sometimes he does not hear the T at all, sometimes it goes from one bad ear and then disappears and goes to the other ear. I am sure that he had T. But I just wondered how badly he had T.
Only reason I mention it is because we all use mpt's experience as proof that Trobalt clears T and is a cure cos it cured mpt.
Maybe we need to know how bad the T is to know how much it can clear the T, completely or not.

Christian has taken loads of trobalt. He has continued despite terrible side effects. Others have discontinued with lesser side effects but Christian has kept going. Yet, in spite of the amount of Trobalt that he has taken into his system, and we know that he had very bad T, he still has T when he tries to stop the Trobalt. Yes he says that his T is much better and that is very good news. But he cannot stop taking the Trobalt or the T comes back. How badly it comes back I dont know. We would need to ask Christian about that.
Maybe the answer is to taper even more slowly than originally thought. I dont know. But I do know that if Christian was mpt, according to mpt's experiences, Christian should by now be cured too or very nearly there.
I hope he is given grace soon and finds peace and silence. Heaven knows, after all he has suffered trying to cure himself, he needs some grace right now!

 

[SoulStation]

I have less in my system now . a little more t but I don't feel as retarded and out of control .

 

[Lake Girl]

I finally have it! My neuro gave me a script for Potiga! I have 90 50mg pills in my hand. Can't wait to start but I need opinions from you all. I have been on 600mg of carbamazaxepin for 3 months. My neuro wants me to wean down to 50mg before I start potiga. The thought of not having anything scares me as the carbamazaxepin has been helping, just not enough. My pharmacist says the two meds can be taken together. I will call my neuro tomorrow to ask. I also need to get another script of potiga so I can taper up properly. What do you guys think?
BTW, I have had T for 17 months; unknown cause.

 

[SoulStation]

Carbamazaxepine (tetragol) is known to make Potiga less effective and they say you may need a higher dose when on both meds but I think just being on both is a bit overkill

 

[SoulStation]

Only side effect of Retigabine im afraid of is this about retinal degeneration after prolonged use

You aren't afraid of kidney problems?

 

[rtwombly]

The problem with using Ricardo's experience as an indicator of what can happen is that we frankly don't know how much of an effect Retigabine had on his condition and how much was pre-existing. I'm not saying I don't believe him, it's just that I don't think he can point to a medical document that states he wouldn't have developed kidney problems had he not taken Trobalt. If we were evaluating this as scientists, we'd have to disregard his evidence until we had more examples.

It's like the retinal pigmentation changes. GSK think they came about because of long-term use of Retigabine, but nobody knows for sure because the patients didn't have a baseline eye exam. How many of them would have developed eye problems had they not taken the drug? We can't know for certain.

So we see a trend, we respond to it, but it doesn't help to panic. If you're worried about your eyes, get an eye test. If you're worried about your kidneys, get an albumin test.

Right now locoyeti is testing a specific dosing method similar to what worked for Mpt. I disagreed about how safe it was...but I've come around in my thinking a bit. There's really not a way to make it safe, so what we need to know is if the benefits can be obtained by following the right protocol. There's no perfect solution, so it will always be a matter of risk vs reward.

I really think that what we're seeing here is that Retigabine is easier for some people to take than others, and efficacy depends on dosage. So you may have people who would respond great at 1200mg, but they've had such a terrible experience at 600-900mg that they'll never go there. As we've seen with Ricardo, that may be a good choice. No medicine is safe for every patient. On the other hand, if Joseph Meister had been allergic to Pasteur's vaccine, the world might have missed out on his life-saving work. We shouldn't conclude that a treatment is unsafe based on isolated examples. What we should do is take every experience seriously and take appropriate measures to mitigate the dangers.

 

[SoulStation]

The problem with using Ricardo's experience as an indicator of what can happen is that we frankly don't know how much of an effect Retigabine had on his condition and how much was pre-existing. I'm not saying I don't believe him, it's just that I don't think he can point to a medical document that states he wouldn't have developed kidney problems had he not taken Trobalt. If we were evaluating this as scientists, we'd have to disregard his evidence until we had more examples.

It's like the retinal pigmentation changes. GSK think they came about because of long-term use of Retigabine, but nobody knows for sure because the patients didn't have a baseline eye exam. How many of them would have developed eye problems had they not taken the drug? We can't know for certain.

So we see a trend, we respond to it, but it doesn't help to panic. If you're worried about your eyes, get an eye test. If you're worried about your kidneys, get an albumin test.

Right now locoyeti is testing a specific dosing method similar to what worked for Mpt. I disagreed about how safe it was...but I've come around in my thinking a bit. There's really not a way to make it safe, so what we need to know is if the benefits can be obtained by following the right protocol. There's no perfect solution, so it will always be a matter of risk vs reward.

I really think that what we're seeing here is that Retigabine is easier for some people to take than others, and efficacy depends on dosage. So you may have people who would respond great at 1200mg, but they've had such a terrible experience at 600-900mg that they'll never go there. As we've seen with Ricardo, that may be a good choice. No medicine is safe for every patient. On the other hand, if Joseph Meister had been allergic to Pasteur's vaccine, the world might have missed out on his life-saving work. We shouldn't conclude that a treatment is unsafe based on isolated examples. What we should do is take every experience seriously and take appropriate measures to mitigate the dangers.

We also shouldn't assume that this medicine cures permanently based on isolated examples (mpt).

 

[mmacabre]

I'm pretty sure CBZ can change how you metabolize other medications, especially other antiepileptics, you might want to be extra careful that having both in your system doesn't increase (or decrease) the effects of either medication. I'd ask your neuro about that first, definitely.

 

[SoulStation]

In 3 controlled clinical studies, 25% of patients receiving ezogabine (199/813) and 11% of patients receiving placebo (45/427) discontinued treatment because of treatment-emergent adverse reactions

>10%
Dizziness (23%)

Somnolence (22%)

Fatigue (15%)

1-10%
Confusion (9%)

Vertigo (8%)

Tremor (8%)

Nausea (7%)

Abnormal coordination (7%)

Diplopia (7%)

Attention disturbance (6%)

Memory impairment (6%)

Asthenia (5%)

Blurred vision (5%)

Gait disturbance (4%)

Aphasia (4%)

Dysarthria (4%)

Balance disorder (4%)

Anxiety (3%)

Paresthesia (3%)

Infections (3%)

Weight gain (3%)

Constipation (3%)

Disorientation (2%)

Dyspepsia (2%)

Dysuria (2%)

Urinary retention/hesitation (2%)

Hematuria (2%)

Chromaturia (2%)

Hallucinations (2%)

Amnesia (2%)

Dysphasia (2%)

And that's not including the 45 people that dropped out
Source :
http://reference.medscape.com/drug/potiga-ezogabine-999664#4

 

[rtwombly]

We also shouldn't assume that this medicine cures permanently based on isolated examples (mpt).

You're right about that, or course, that's why I cited locoyeti's example as something worth watching. Having taken apart every experience on here and on the User Experience thread, I've seen that very few have followed Mpt's example, due mostly to side effects and supply problems. I personally didn't see why it should make a difference, and argued against getting too caught up in the protocol. But though I realize this is teh Interwebz, I'm prepared to admit I may have been wrong.

I don't think you're wrong to back off, SS. You know how you're responding, and none of us do. I'm still optimistic mostly because of the science. I still think it's solid. Just wish there wasn't such a downside to this drug!

 

[SoulStation]

You're right about that, or course, that's why I cited locoyeti's example as something worth watching. Having taken apart every experience on here and on the User Experience thread, I've seen that very few have followed Mpt's example, due mostly to side effects and supply problems. I personally didn't see why it should make a difference, and argued against getting too caught up in the protocol. But though I realize this is teh Interwebz, I'm prepared to admit I may have been wrong.

I don't think you're wrong to back off, SS. You know how you're responding, and none of us do. I'm still optimistic mostly because of the science. I still think it's solid. Just wish there wasn't such a downside to this drug!

I've been in touch with Locoyeti. I almost started to taper up to 900 because of his reports. I wish all luck to all with this drug but this thread has gotten OUT OF CONTROL
With MIS-INFORMATION
HYPE
and Desperation.
I am just as guilty as anyone. I am just noting it. It is just bonkers.

AND I'm not trying to take away from the GOOD INFORMATION on the thread thanks to diligent research.

 

[jeannie]

wow this medicine sounds scary to me. you are very brave people who are on it or tried it...

 

[attheedgeofscience]

I've been in touch with Locoyeti. I almost started to taper up to 900 because of his reports. I wish all luck to all with this drug but this thread has gotten OUT OF CONTROL
With MIS-INFORMATION
HYPE
and Desperation.
I am just as guilty as anyone. I am just noting it. It is just bonkers.

AND I'm not trying to take away from the GOOD INFORMATION on the thread thanks to diligent research.

I was not planning to share the following information in public - and certainly not at this point in time. But I happened to see your post just before heading off to bed, and I thought... why not...

I got a statement today from a professor of pharmacology (and who co-authored a recent research paper on potassium modulators in relation to treating tinnitus - amongst them Trobalt). I wanted to get a formal statement from him so as to understand the mechanism-of-action of Trobalt in suppressing tinnitus (which would be required for the petition for the ATA of the desired Trobalt-study coming from members of this board). Here is what he wrote to me:

Dear Jakob, Thank you for your interest in the work. We do not know the mechanism of how retigabine (Trobalt) decreases induced firing of neurons, or whether this activity could suppress symptoms of tinnitus. In light of the known side effects of the drug (blue eyes, skin, tremor, etc) it is not likely to be useful for treating tinnitus, especially long term. Dr. Moore's lab is currently working on potentially more effective alternatives with fewer or no side effects. However, securing funding for this research remains an uphill battle.

The above statement is coming from a professor of pharmacology! I do not wish to name the professor, but it is known who he is to the staff of TinnitusTalk as well as to a few other members of TT (who participated in the discussion).

If I cannot get a professor of pharmacology research to make a statement, how on Earth will I get anyone to make a statement towards the potential efficacy of Trobalt in suppressing tinnitus?

Something to think about.

(And thanks for keeping it "real"...).

 

[jazz]

We also shouldn't assume that this medicine cures permanently based on isolated examples (mpt).

Mpt had tinnitus for approximately 6 months. That's not a long time and we know the brain is still more "plastic" and thus amenable to changes early on. After a year, the brain changes that occur with tinnitus become consolidated, making it far more difficult to reverse them.

This is why, I believe, right now the people who've gotten the most relief had tinnitus less than a year. As long as you can tolerate the side effects and you are under a year, I believe there's a good chance the drug will give you significant relief. But it's too early to know if that significant relief is similar to a cure. Only time and further testing will confirm this.

For those with tinnitus greater than a year, so far it seems like the drug generally gives around a 30% reduction in symptoms. That's actually respectable for any tinnitus treatment. The real issues, therefore, for chronic sufferers are the drug's side effects and the duration of treatment. Perhaps, if it was known that 6 months gave most people 30-50% reduction in their symptoms--and that reduction remained stable for several years--it would be worth trying the drug.

There are many, many issues with Retigabine. No doubt. It is a drug with nasty side effects. But we do know the drug does reduce tinnitus in almost everyone who tries it. That is a big deal.

And we also know researchers are trying to develop a version of Retigabine without the side effects. But who knows how long this will take?