Retigabine (Trobalt, Potiga) — General Discussion

[Juan Carlos]

Thank you. Do you take it in divided doses (like 3x/ day), or do you take it all at once?

Dr. Stephen Nagler

Divided, as the prospect says, at 4am 12am 8pm

on workdays i take only 200mg at 12am and rest 300mg. The "highness" wich appears after 1h pill for ~30min is everytime milder. I like it btw

 

[amandine]

@Dr. Nagler

Thank you. Do you take it in divided doses (like 3x/ day), or do you take it all at once?

Dr. Stephen Nagler

I dont take it but following the thread it is clearly written that it is taken mostly in three doses per day sometimes four. So 900ng would be taken generally at 300 x 3....also depends on the mg dosage pills as it is not recommended to cut up the pills.

 

[Dr. Nagler]

Got it. Thank you, @amandine.

 

[Telis]

I'd rather perish with a bold experiment in search of a possible brave new world and sacrifice for the sake of advancement of scientific knowledge instead of live to a ripe old age with T feeling good and pretending to be a normal person. Yes it's true that the mechanism of T is not well understood but historically almost ALL discoveries in the field of medicine were accidental, no one understood how Penicillin kill bacteria when it was first discovered, no one knows the molecular mechanism of Quinine when it was first used against malaria in 17th century, back then people didn't have an idea what is a molecule/atom. Hell, for many Antidepressants their mechanisms of action on brain chemistry are still not fully understood and we still don't understand why it works on some people but not on others. When Colombus set sail for the west no one knows whether he'd return safe and intact but throughout history it is this entrepreneurial spirit that drive advancement. Knowledge is gained through a long series of trial and error, and in the process sacrifice even loss of life is almost always inevitable. But staying inside one's safe zone, trying to convince yourself it's not going to hurt and do nothing about it, will never bring new insights. Same for Space exploration, the sacrifice of Apollo 7, Soyuz 1, Challenger, Colombia were not futile. The future ONLY belongs to pioneers who are not afraid of death.

Ummm...ok. Is this a serious post? I guess taking retigabine for a few months for tinnitus relief makes you a entrepreneur, a pioneer and a courageous individual that stares down death for the greater good of man. I had no idea taking retigabine could make me such a hero...geeze sign me up. What a pitch! Space exploration, the sacrifice of space explorers, Columbus etc. wow. I'm getting shivers down my spine.

Sounds like you might have poped a extra trobalt? Or a few too many Xanax?

You should donate yourself to the government for experimentation, you sound like the perfect candidate.

 

[Christian78]

You really have bad reactions to trobalt!? I've not had that effect at all, not even at higher dose

I did not had it when i tried 450, steady, maybe 5 was too much. What i have noticed is that longer dosage at 300 mg lover tinnitus, then tinnitus start to emerge but side effects that are not side effect but normal effect of epileptic is to be more drugged, more forgetful, brain get to get more and more dull, and initial effect on tinnitus goes away.

 

[john2012]

everyone should keep close eye on Viking's keppra thread, link above.
its an alternative to trobalt that apparently targets same spot as autifony
i thought autifony drug 63 was unique
anyone know about this, can explain? thanks
it's a great find.

 

[Christian78]

Few people had results with low doses like 300mg/day but most of us had the very noticeable improvement at 900mg/day (me included)
900 is what we consider the best dose and bearable side effects for most of us (me included), except christian.

I had extremely good results in September on 200mg, then they become weaker than i had really good results in the October, but then it slowed and i went to 300 and it was better but then because of time i was on trobbalt, trobalt became full and active and that means he is now relly killing my brain, my hand tremble, memory is bad, not much about being drugged es much as real effect of this medicine that is to shut your brain down.

So I had good time on 300 mg but it does not last long when you have 130 days on it we can speak how good is effect, and good is real sedative Trobalt effect.

 

[Christian78]

What do you think about Keppra (Levetiracetam) . He is KV3.1???

Only bad is he inhibits gaba re-uptake, therefore some people get tinnitus from it?

I think it is going to be very hard for me who is now dehabituated to go back to tinnitus again...

 

[tomm]

How long should we be giving Trobalt to work before considering taper? I think my response may have plateaued at 4-5 (from 7) at the moment.

 

[amandine]

Can anyone explain please how trobalt works on T please in one or two sentences? Not with links to long wordy scientific explanations. Just a quick brief reply for all of us to understand how it works. There is something to do with the gaba but i am confused as to whether we need this gaba or this gaba is creating the T. Cos @Viking says to try keppla but this reduces the gaba and can cause T in some people. So now I am utterly confused as others may be too.
So for all of us lay people, is it possible to get just a simple explanation here and not with links backwards as to how trobalt is working and how is keppla working. Maybe @Viking may know this
thanks

 

[Viking]

Can anyone explain please how trobalt works on T please in one or two sentences? Not with links to long wordy scientific explanations. Just a quick brief reply for all of us to understand how it works. There is something to do with the gaba but i am confused as to whether we need this gaba or this gaba is creating the T. Cos @Viking says to try keppla but this reduces the gaba and can cause T in some people. So now I am utterly confused as others may be too.
So for all of us lay people, is it possible to get just a simple explanation here and not with links backwards as to how trobalt is working and how is keppla working. Maybe @Viking may know this
thanks

I haven't found any relationship between tinnitus and keppra. On the paper in the box, the leaflet there are not indicated tinnitus as a side effect instead Tegretol and others. Please show me it

 

[Telis]

Can anyone explain please how trobalt works on T please in one or two sentences? Not with links to long wordy scientific explanations. Just a quick brief reply for all of us to understand how it works. There is something to do with the gaba but i am confused as to whether we need this gaba or this gaba is creating the T. Cos @Viking says to try keppla but this reduces the gaba and can cause T in some people. So now I am utterly confused as others may be too.
So for all of us lay people, is it possible to get just a simple explanation here and not with links backwards as to how trobalt is working and how is keppla working. Maybe @Viking may know this
thanks

If you look back, It's been explained throughout this thread in every way possible about 10 thousand times over.

 

[OnceUponaTime]

- We have had zero women trying Trobalt.
- Etc., etc., etc.

I may be the first woman here to try retigabine. Have prescription in my hand. Feel a little nervous, almost emotional. (typical of woman eh.. ) My Neurologist ok'ed it... he only game me 50mg once a day to try it for 2 weeks. I am 4"11 and 90lbs. He thought that will be an ok dose to start me as I am so petite. Went to CVS pharmacy in town and they did not have t and COULD NOT get it either. So I went to the small Mom/Pops pharmacy in town and he said that he did not had it at the moment but that he could get it and that it will be here first thing in the morning. He said if the insurance did not cover it, it will cost $150 out of pocket. Ok, that is all the information I have for now. I will let you all now when I start taking it.... if I do. Have a good day.

 

[amandine]

The whole point is that I have just had a chat with Christian 78. He explained that keppla causes the gaba to remain in the body which reduces the T. Then when the keppla is stopped, the gaba reduces which means the T comes back or starts or increases.

This is what i understand and my simple explanation and I feel that this thread could benefit from having such a simple explanation appear at the top of each page. Also the same for a keppla thread too.

So Trobalt works on four potassium channels rather than just one so this is why there are the side effects.
The channel that is malfunctioning is the kv3 potassium channel which causes the neurons to over fire.
The keppla works on the kv3 only which means that it should not have the side effects of trobalt.
However the keppla increases the gaba levels in the same way that benzoes work. So when the keppla is stopped, the gaba levels reduce and the T returns or increases or starts.

If even the scientists dont really understand how all this works, then how are we supposed to.
Therefore I thought a simple explanation appearing at the top of each page would be helpful, beneficial especially to new people. To trawl through reams of posts and scientific literature is just too daunting for many people, especially with T and probably a host of other problems too.

Maybe it is possible to put the above explanation at the top of each page and maybe the mods can help with this please.

Or @locoyeti do you think it is better to have to trawl through reams of stuff such as below:

The exact mechanism by which levetiracetam acts to treat epilepsy is unknown. However, the drug binds to a synaptic vesicle glycoprotein, SV2A,[36] and inhibits presynaptic calcium channels [37] reducing neurotransmitter release and acting as a neuromodulator. This is believed to impede impulse conduction across synapses.

I think that my explanation is much easier to understand and of course please tweak as necessary.
Just trying to be helpful.

 

[lapidus]

I may be the first woman here to try retigabine.

No, you'd be the second. Lake Girl just started.

 

[Viking]

Can anyone explain please how trobalt works on T please in one or two sentences? Not with links to long wordy scientific explanations. Just a quick brief reply for all of us to understand how it works. There is something to do with the gaba but i am confused as to whether we need this gaba or this gaba is creating the T. Cos @Viking says to try keppla but this reduces the gaba and can cause T in some people. So now I am utterly confused as others may be too.
So for all of us lay people, is it possible to get just a simple explanation here and not with links backwards as to how trobalt is working and how is keppla working. Maybe @Viking may know this
thanks

If Keppra reduces Gaba....the persone who suffer of epilepsy will have a seizure deadly. is an antiepileptic drug, and as such, increases the gaba. I'M NOT OBLIGED TO PROVE IT SUGGESTED TO ANYONE! I'm the guinea pig. I did not ask this to anyone!

 

[Rube]

I think everyone should take a deep breath and chill out. Lots of tempers flaring here, it doesn't get anyone anywhere....

 

[amandine]

@Viking

Please dont get angry.
As I said, I asked Christian and he explained the gaba effect to me. I was confused after the explanation. This is my fault that I did not understand exactly what Christian was explaining to me. Let us also remember that English is not Christians mother tongue although he has a good command of the language. Maybe this is why I did not understand him correctly.

Anyhow:
I asked someone else to explain. Then I put the explanation that I understood into a simplified version above as I thought that it would be useful. No one is asking you to prove anything. In my simplified explanation above it says that keppla increases the gaba when being taken. Therefore when not taking it, the gaba reduces. So the T may return, or increase or start.

 

[Nick the Swede]

There is a lot of sacrifical lambs in this thread

 

[john2012]

When I try Trobalt I will ROTATE it with other drugs that suppress my tinnitus.
This means I will not develop tolerance, will not need to keep increasing dosage
to maintain potency and will not need to taper off, avoiding negative withdrawal effects.

MONDAY Trobalt
TUESDAY Lyrica
WEDNESDAY Klonopin
THURSDAY Gap Day
FRIDAY Repeat cycle

A lot of experienced drug users employ ROTATION for good reason and to great effect.
This approach could be especially beneficial if Trobalt, and maybe even AUT63,
have to be taken long-term.

 

[tomm]

When I try Trobalt I will ROTATE it with other drugs that suppress my tinnitus.
This means I will not develop tolerance, will not need to keep increasing dosage
to maintain potency and will not need to taper off, avoiding negative withdrawal effects.

MONDAY Trobalt
TUESDAY Lyrica
WEDNESDAY Klonopin
THURSDAY Gap Day
FRIDAY Repeat cycle

A lot of experienced drug users employ ROTATION for good reason and to great effect.
This approach could be especially beneficial if Trobalt, and maybe even AUT63,
have to be taken long-term.

Don't forget leg day.

 

[john2012]

the point is this approach leaves you very strong and stable,
rather than being over-dependent on one drug.
taken once in a while, lyrica and klonopin are VERY powerful
suppressors of tinnitus. The mistake is to take them
everyday.

 

[dan]

@john2012 , Klonopin suppresses your T 100%?

 

[amandine]

Just to let you know that Danny Boy is now on Trobalt 2 times daily at 500mg and has been for a few days. Therefore he is now on 1000mg a day. He no longer takes the third dose of 300 mgs.
He has felt no difference between when taking the 1300mg and the 1000mg per day.
Still no side effects apart from feeling slightly drunk for the first hour and a half after taking the dose.
No sight problems, no urinary retention nor hand trembling but he has a slight tingling in his hand.
He is 23 years old and slim and fit.....
He is turning into a trobalt success story alongside mpt....
but he is cautiously waiting to see what happens.....

 

[Martin69]

Just to let you know that Danny Boy is now on Trobalt 2 times daily at 500mg and has been for a few days. Therefore he is now on 1000mg a day. He no longer takes the third dose of 300 mgs.
He has felt no difference between when taking the 1300mg and the 1000mg per day.
Still no side effects apart from feeling slightly drunk for the first hour and a half after taking the dose.
No sight problems, no urinary retention nor hand trembling but he has a slight tingling in his hand.
He is 23 years old and slim and fit.....
He is turning into a trobalt success story alongside mpt....
but he is cautiously waiting to see what happens.....

Thanks Amandine. Does he have complete silence?

 

[john2012]

@john2012 , Klonopin suppresses your T 100%?

hello my friend, hope you are okay
it's interesting, a big enough dose of klonopin dampens my
tinnitus/perception of it to make things more manageable,
similar to lyrica
it's not perfect but it's something
i've just needed to find different classes of drugs to rotate
it's tough right now, how are you?

 

[amandine]

@Martin69

Just speaking with him now and asked him your question.
He is feeling a little bit drunk from the Trobalt which is why I am updating for him. He asked me to do this to keep the community updated.
He says he does not have complete silence but his T is at sixty to seventy percent better than pre Trobalt.

 

[Dr. Nagler]

Juan Carlos posted:

"Few people had results with low doses like 300mg/day but most of us had the very noticeable improvement at 900mg/day (me included)
900 is what we consider the best dose and bearable side effects for most of us (me included), except christian."

..........

@attheedgeofscience, is it your feeling that one should start with 300mg daily (100mg 3x/day) and then if needed increase to 900mg daily (300mg 3x/day)?

Thank you.

Dr. Stephen Nagler

 

[Zimichael]

Good grief!!! I think I could spend about three hours just "correcting" and commenting on all the stuff posted above since yesterday... So I think I will just stick to a few of the more 'practical' aspects for now as have a ton of Conv. stuff pressing.

I have started Potiga. First 5 days at 50mg. Currently taking 100mg. Tapering up 50mg per week. It helps! I have quiet hours after taking the pill. Quiet lasts 2-3 hours. No side effects whatsoever.

@Lake Girl ...Congratulations as our first female tiralee (explorer, guinea pig, whatever...). However, and to all trialees if mentioning a dose..can you please post more than just a dose number. Can you please always say whether that is total per day, or three times a day, or something. The standard shorthand way of saying "three times a day" is TID. For instance Lake Girl, I don't know if you are just taking 50 mg total per day or TID, and thus 150 mg total per day.
Example of 50 mg for instance from @theekarwash above...

Day 5 of 50mg once a day! Head noise is reduced, T is at a 2/10right now, it will change back to my 4/10 in the morning but still, this feels nice.

Thanks in advance.

Questions on dosage...I can assure you, that there is no standard dosage or even method, for our trialees!
Just look at what @theekarwash just said above. That's a potential "effect" at a total of 50 mg. Then we have others getting "effect" at a total of 1200 mg per day. There are variations of every kind in-between those.
I am in touch privately or are reading here of those who are mixing and matching daily doses depending on weekends v. weekdays; who have taken one large single dose; who are taking it QID = four times a day; who are taking it as needed depending on T levels; who are ramping up really fast to avoid possible "homeostasis"; or are ramping up at glacial speed and holding for a longer term v. immediate effect.....and so on.
Yes the 'supposed' effective goal dose is 300 mg, or 400 mg TID for a total of 900 mg or 1200 mg per day, but that is the epilepsy model and somewhat the "research papers" model (where dose/plasma saturation was king in vitro = petri dishes).
Thus to me at least, there is no real "dose" and "method" guideline worth beans yet. N sample is too small and reporting is "diverse".

Keppra/Levetiracetam (LEV)...Like @Viking ...I can find zero evidence of it increasing tinnitus or any 'hearing stuff' in the normal sources I use (and trust by now) for "ototoxicity". I also can't see much on the Kv3 aspect, but no doubt many days of research could go to this task as it looks like a great find Viking! It was approved in 2002 so is much more "acceptable" than Retigabine presumably.

So Trobalt works on four potassium channels rather than just one so this is why there are the side effects.
The channel that is malfunctioning is the kv3 potassium channel which causes the neurons to over fire.

Amandine...this is seriously jumping to conclusions we, or at least I (and I have spent a lot of time on this) would not state with any assurance.

When I try Trobalt I will ROTATE it with other drugs that suppress my tinnitus.
This means I will not develop tolerance, will not need to keep increasing dosage
to maintain potency and will not need to taper off, avoiding negative withdrawal effects.

MONDAY Trobalt
TUESDAY Lyrica
WEDNESDAY Klonopin
THURSDAY Gap Day
FRIDAY Repeat cycle

A lot of experienced drug users employ ROTATION for good reason and to great effect.
This approach could be especially beneficial if Trobalt, and maybe even AUT63,
have to be taken long-term.

Are you serious????????????? Really, I mean this question. (Also, if so, see above re variations in Retigabine dosage and methodology!!!)

Best, Zimichael

 

[Philemon]

There is a lot of sacrifical lambs in this thread

Don't you think it's a bit offending to say so ?