Retigabine (Trobalt, Potiga) — General Discussion

Autifony is under patent, any attempt to duplicate will result in a ban.
On another note, tinnitus is like solar panels:
Shade Can Damage Solar Panels
Individual solar panel cells are very sensitive and do not like being constantly switched on and off. When some cells in the panel are not working the other cells work harder to try to compensate. As a result the solar cells that are not in shade have a tendency to overheat and burn out. There is a solution to this and that is to buy solar panels that are fitted with bypass diodes. However, even then shade is not good for solar panels, so should be avoided if possible.
ya shade can easily damage these panels..Even I have got similar information from other reliable source..
 
What about hyperacusis? There are reports that coming off Klonopin (Clonazepam) worked initially very well for some people, but since it's very addictive, coming off it introduced (severe) hyperacusis.
So I'm not beginning, yet as my T is now 1 or 2/10 where it was 8/10.

Anti epileptic medication already exists (Amytriptiline / Carbamazepine) and several papers suggest that this works also good.
 
What about hyperacusis? There are reports that coming off Klonopin (Clonazepam) worked initially very well for some people, but since it's very addictive, coming off it introduced (severe) hyperacusis.
So I'm not beginning, yet as my T is now 1 or 2/10 where it was 8/10.

Anti epileptic medication already exists (Amytriptiline / Carbamazepine) and several papers suggest that this works also good.
How did you go down from 8/10 to 2/10?
 
Okay we've got a whopping 52 page Retigabine thread.
Well done everybody

Can anyone COMMENT on the general result of the online trial?

From a glance, it seems good no matter what caused the tinnitus.
Anybody doing it in the UK ?
 
last 6 days i being worse and worse. i upped dosage but nothing. t is becoming more as it was. today t became old on 9, this evening is just spikes up and becoming old tinnitus, as i became used to retigabine. my ears are screeching regardless dosage.
 
last 6 days i being worse and worse. i upped dosage but nothing. t is becoming more as it was. today t became old on 9, this evening is just spikes up and becoming old tinnitus, as i became used to retigabine. my ears are screeching regardless dosage.
That is very saddening to hear Christian. Did you up the dosage slowly as per protocol? Did T start getting louder before you upped the dosage? Thanks in advance for the information.
 
How did you go down from 8/10 to 2/10?
Nightguard for TMJ + 5 months of TMJ therapy weekly with TENS and jaw massage excersizes 2 times a day, heatpack on my face, being lucky, neck therapy, extra vitamin intake, lot's of sleep, alternative treatment, very very slow ETD improvement, cut out of any cafeine, no alcohol, ginkgo biloba, magnesium intake, medrol treatment when T started (after 12 days). No hearing loss measured.
Neurologist suggested botox, but I refused as there are horror stories everywhere. I'm still thinking about the carbamazepine / trobalt route now. But ETD issues need to be fixed as well.
 
That is very saddening to hear Christian. Did you up the dosage slowly as per protocol? Did T start getting louder before you upped the dosage? Thanks in advance for the information.
I was using 200 mg normal and it was OK, and then suddenly last 6 days it just like t went normally up, like tolerance to medicine. I did not change dosage last 3 weeks. So no up down dosage chancing dosage i used it as it should, it worked and then just stooped to work.

If you read my posts you would know i was using retigabine and all was ok, but i became immune on it.
 
I was using 200 mg normal and it was OK, and then suddenly last 6 days it just like t went normally up, like tolerance to medicine. I did not change dosage last 3 weeks. So no up down dosage chancing dosage i used it as it should, it worked and then just stooped to work.

If you read my posts you would know i was using retigabine and all was ok, but i became immune on it.
I am sorry for this Christian.
As far as I remember, Mpt takes 800 mg daily.
But i don't know if that would make a difference.
 
I was using 200 mg normal and it was OK, and then suddenly last 6 days it just like t went normally up, like tolerance to medicine. I did not change dosage last 3 weeks. So no up down dosage chancing dosage i used it as it should, it worked and then just stooped to work.

If you read my posts you would know i was using retigabine and all was ok, but i became immune on it.

@Christian78 you should be slowly tapering up the dosage to the effective 900mg per day. The bioavailability of the drug is very short so it is necessary to get the proper dosage. I would suggest increasing the dosage, and it is possible you will see improvement. Remember also that it is during dosage changes that side effects most prominently occur. I would use the dosage schedule that @benryu posted in this thread.

I doubt that it is the case that your body is is becoming 'immune' to the drug or that it is adapting in any significant way. Retigabine works on the axonal channels, not the synaptic channels, so there is not (as much of) an effect on plasticity.

This could be the action of some of the other drugs you are taking. I think it is a bad idea to be mixing benzodiazepines with this drug (I am skeptical of @Zimichael 's claim that benzos increase plasticity, or do so in a predictably beneficial way). They are both hyperpolarizing agents (benzos target synaptic GABAa) so you are getting a double whammy.
 
I was using 200 mg normal and it was OK, and then suddenly last 6 days it just like t went normally up, like tolerance to medicine. I did not change dosage last 3 weeks. So no up down dosage chancing dosage i used it as it should, it worked and then just stooped to work.

If you read my posts you would know i was using retigabine and all was ok, but i became immune on it.

You had similar condition once. It is strange.
 
@Christian78 ...Bummer! I'm really sorry to hear this news, and I'm not sure going up to 800 mg or 900 mg is the right thing to do. My sense is that it "worked" for you at a lower dosage and perhaps just ramping it up might create some worse side effects, like your inability to think easily (mathematics, etc.).
However, the choice is yours and I would 100% trust your own judgment on what to do! If you decide to drop off though, I would for sure taper slowly.

From the little I understand of this drug, "adaption" should not be that easy - say compared to an antibiotic which can screen out the toughest bastards, that survive if you don't 'kill them all' so to speak. Then these tough mothers multiply with inherent resistance, and the drug becomes "ineffective". Trobalt works on a whole different level to that kind of action...But hell, I'm "adaption in motion", as a high percentage of meds I have taken do indeed become ineffective, (or make me really ill right away) so I am not going to question it too deeply.

I agree with @locoyeti ...it is possible some drug interactions are taking place, as we know so little about that aspect in this whole 'experiment'.

This could be the action of some of the other drugs you are taking. I think it is a bad idea to be mixing benzodiazepines with this drug (I am skeptical of @Zimichael 's claim that benzos increase plasticity, or do so in a predictably beneficial way). They are both hyperpolarizing agents (benzos target synaptic GABAa) so you are getting a double whammy.

@locoyeti ...Actually I am saying the opposite of the above. And indeed I have been purposefully coming off my one and only med (Clonazepam) for the past, nearly 3 weeks, exactly for this reason. I want as little of it as I can handle to interfere with my Potiga trial...When it ever gets here that is! Attitudes about GABA (thus Benzo's - which many of us take) and effects on Kv channels drugs (thus Retigabine), have flipped back and forth since 2005. Quote from Jasterbroff's viewpoint (c/o his book that I have no intention of reading. Apologies if misquoting. It's just an example to me anyhow.):
'Alprazolam (Xanax)and other benzodiapzepines impair plasticity in the brain and reduce learning ability, thus counteracting TRT (and habituation).We strongly oppose the use of alprazolam for tinnitus.'

In the end it becomes individual experience that counts.

Best, Zimichael
 
I was using 200 mg normal and it was OK, and then suddenly last 6 days it just like t went normally up, like tolerance to medicine. I did not change dosage last 3 weeks. So no up down dosage chancing dosage i used it as it should, it worked and then just stooped to work.

If you read my posts you would know i was using retigabine and all was ok, but i became immune on it.

If you were taking benzodiazapines and are tapering off them than that is causing tinnitus spikes, those dugs can cause tinnitus by themselves.
 
If you were taking benzodiazapines and are tapering off them than that is causing tinnitus spikes, those dugs can cause tinnitus by themselves.

A relevant point Hengist!...In the end though, how we all will react to drugs and the mixes thereof is very individual.

In terms of potential and likely drug interactions (and incidentally the definitive Australian report is the one discounting GABA aspects), with Retigabine...here are some links to see the conventional wisdom on that - which is not just smoke by any means. But again individual idiosyncrasies are highly relevant.

This is the definitive document for detail IMHO, though blandly eaves out some key side effects (see my post on all that way back in the thread if interested)
http://www.tga.gov.au/auspar/auspar-retigabine-131017.htm
Or just Google, and download the doc: Australian Public Assessment Report for Retigabine

Straight up drug advice, etc.
http://www.drugs.com/pro/potiga.html *[Professional Section, then scroll down!]
Drug Interactions...

European version. Do a "Find" for Drug Interactions or the like...as there is more than this.
http://www.ema.europa.eu/docs/en_GB...ssessment_report/human/001245/WC500104839.pdf
Safety related to drug-drug interactions and other interactions
Retigabine had little or no effects on the trough concentrations of carbamazepine, clobazam,
clonazepam, gabapentin, levetiracetam, oxcarbazepine, pgenobarbital, phenytoin, pregabalin,
topiramate, valproate, and zonisamide. Retigabine co-administration has been associated with a 20%
decrease in lamotrigine plasma levels. In the available reports, there was no evidence that
concomitant treatment with carbamazepine, lamotrigine, levetiracetam, oxcarbazepine, phenobarbital,
phenytoin, topiramate, or valproate have any clinically relevant effect on the clearance of retigabine.
No interactions have been detected between retigabine, estrogens, progesterone and alcohol. A higher
number of adverse events (88%) was reported when retigabine was associated with levetiracetam.
With few exceptions (carbamazepine and, to a lesser extent, valproate, levetiracetam, lamotrigine),
there were no remarkable differences in specific adverse event reports across differing drug
combinations.

Good luck deciding what and who is accurate! I'm going to go with my own reactions and keep off as many "potentially interactive" things as feasible. Yeah, even my nightly glass of wine...at least at first. :(

Best, Zimichael
 
@Christian78 ...Bummer! I'm really sorry to hear this news, and I'm not sure going up to 800 mg or 900 mg is the right thing to do. My sense is that it "worked" for you at a lower dosage and perhaps just ramping it up might create some worse side effects, like your inability to think easily (mathematics, etc.).
However, the choice is yours and I would 100% trust your own judgment on what to do! If you decide to drop off though, I would for sure taper slowly.

From the little I understand of this drug, "adaption" should not be that easy - say compared to an antibiotic which can screen out the toughest bastards, that survive if you don't 'kill them all' so to speak. Then these tough mothers multiply with inherent resistance, and the drug becomes "ineffective". Trobalt works on a whole different level to that kind of action...But hell, I'm "adaption in motion", as a high percentage of meds I have taken do indeed become ineffective, (or make me really ill right away) so I am not going to question it too deeply.

I agree with @locoyeti ...it is possible some drug interactions are taking place, as we know so little about that aspect in this whole 'experiment'.



@locoyeti ...Actually I am saying the opposite of the above. And indeed I have been purposefully coming off my one and only med (Clonazepam) for the past, nearly 3 weeks, exactly for this reason. I want as little of it as I can handle to interfere with my Potiga trial...When it ever gets here that is!
I'm pulling a section from what I wrote about plasticity, Kv Channels, and Benzo's in the Autifony thread. You probably did not read it because it was so long. Ha ha...Yeah, I don't know "brief". It's relevant to Retigabine too of course:

.....OK, so say we have this "T. event" and there is a lack of plasticity? Well maybe this sudden T. would just freak out the audio crew, who jump up and have all kinds of political debate about what to do, act just like our Congress and get nowhere for ages....and then someone notices that the T. went away! They all cheer and get back to the important stuff like dining with lobbyists.

Maybe here the "plasticity" was 'under the influence' of say....a Benzo!!!...if we go with the theory (which apparently is in the Jasterbrof book - which I have no intention of reading) that they "impair" plasticity:

'Alprazolam (Xanax)and other benzodiapzepines impair plasticity in the brain and reduce learning ability, thus counteracting TRT (and habituation).We strongly oppose the use of alprazolam for tinnitus.'

Apologies if this quote is wrong, but it is just an example model anyhow.

In this case the "lack" of plasticity may be a good thing as it meant the adaption and potential to form a "habit" through this "plastic functionality", was out to lunch due to GABA intoxication. Well cool...Who the hell wants T. anyhow???!!! Phew...sure glad plasticity was compromised there.

And so on...Obviously the inverse could be true. Obviously there are tons of variables. However, getting back to when "plasticity" does set in, it seems to me that (counter to my example of the trashed bridge earlier) the bridge across the river gets buckled, or kicked down-stream a few yards, and traffic gets totally weirded out. It does not go and find a completely new way to Kansas.....


And so on...[PLEASE NOTE, THE ABOVE IS TAKEN OUT OF CONTEXT AND DON'T COME TO ANY CONCLUSIONS FROM IT WITHOUT READING THE WHOLE POST].

Check that thread if interested in my "plasticity story" and Kv channels, etc., etc. *[Wednesday September 10th.]

Best, Zimichael

@Christian78
On second thought, maybe Zimichael's idea of tapering down might be a good idea. You might be having some drug interactions, because I don't think that you are becoming 'immune' to this drug. From my understanding, some drugs, especially that that work on the synapse, initiate cascading events that change the concentration of neurotransmitters, receptors, etc, which lead to 'adaption/immunity'. It is possible that retigabine, by modulating the Kv channels to an open state, creates its own set of adaptations (increasing membrane PIP2, VGLUT1/VGLUT2 ratio changes that benryu referred to, or some other theory I'm not aware of) that lead to improved functioning of the dysfunctional neurons in the auditory network, but from what I understand there is not any direct amplification of the drug going on at the cellular level. Since you did see some improvement, it is very puzzling why you are experience a reversion. Any one else have any thoughts?

@Zimichael
Apologies, I stand corrected. I was referring to your posts on this thread, and the idea that Benzos increase plasticity was new to me and I made an aborted attempt to verify this online without any success. I just associated the idea with you, sorry. Looking back over the posts, it seems that you were just raising some questions about possible interactions, and I agree with you that weening off of them is a good idea before you try retigabine.

"due to inference that Benzos increase plasticity (which could be a good thing or a bad thing), "
https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-38#post-62303

"My thoughts had been, re the GABA (in my simplistic terminology): Benzo's increase brain plasticity and this could be a good thing, or a not so good thing…"
https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-38#post-62374
 
Hi everyone!

Let me remind people to stay "on topic" and only post information pertaining to Retigabine. This thread is very long and it's difficult for people to extract information on Retigabine from it. This is very frustrating for many of our members, who are very committed to educating themselves about this drug.

Thank you for your cooperation!
 
Good luck deciding what and who is accurate! I'm going to go with my own reactions and keep off as many "potentially interactive" things as feasible. Yeah, even my nightly glass of wine...at least at first.

The point of taking this is to be as normal as you can be, acting abnormally might confuse your metabolism and lead to some weird outcomes that would not have happend if you would to act normally even if that means having a drink every once in a while.
 
The point of taking this is to be as normal as you can be, acting abnormally might confuse your metabolism and lead to some weird outcomes that would not have happend if you would to act normally even if that means having a drink every once in a while.

I believe @benryu mentioned earlier in this thread that you shouldn't drink any alcohol on retigabine, that it had some nasty effects.
 
Trobalt and Alcohol
Drinking alcohol with Trobalt can make your vision blurred. Take extra care until you know how
Trobalt and alcohol affect you.

It does not say that alcohol is a definitive no, but only that taking retigabine together with alcohol is not recommended due to visual problems that may and may not happen as a result. However I do not see a particular problem with general alcohol intake and a drug designed to be taken for a lifetime duration. As I recall @Mpt went to parties and acted normal I presume that includes drinking alcohol.
 
It does not say that alcohol is a definitive no, but only that taking retigabine together with alcohol is not recommended due to visual problems that may and may not happen as a result.

Yes, I reread the clinical trial and found that information. :) Still, I would practice moderation. Who knows long term what might happen?
 
...Sorry Jazz, all this stuff is so intertwined and easy to stray semi-off-topic when it comes to "side effects" and "possible effects" of Reigabine, let alone adding drug interactions from other meds., herbs, alcohol, etc. God help me I hope someone does not try Ecstasy while on this stuff!!!

To sum up, I reckon the safest course is to be on as few other meds, drugs, supplements, (natural or not) when trialing Potiga/Tobalt. I have done a lot of work on researching just this aspect, and I can assure you it's a pretty mucky swamp! Just on the GABA-Benzo thing, initial thinking went from:"Oh dear, maybe not good", to: "Maybe it will help", to: "Huh, it does not seem to do much after all" after actually assessing outcomes...So go figure.

As Jazz said...moderation is a good guideline, and as stable and consistent a personal baseline as possible.

Best, Zimichael
 
Sorry to hear that Christian78. I bet you felt well during the low T days.
Are you going to discuss the results with a neurologist / ENT ?


No, maybe GP but they dont know anything about this, nobody know nothing and all it try and if it works great if not well you tried. As we all very well know they are not sure even about how t is in the body, not where, or how it came to be, everyone has other different theory.
 
@Christian78 you should be slowly tapering up the dosage to the effective 900mg per day. The bioavailability of the drug is very short so it is necessary to get the proper dosage. I would suggest increasing the dosage, and it is possible you will see improvement. Remember also that it is during dosage changes that side effects most prominently occur. I would use the dosage schedule that @benryu posted in this thread.

I doubt that it is the case that your body is is becoming 'immune' to the drug or that it is adapting in any significant way. Retigabine works on the axonal channels, not the synaptic channels, so there is not (as much of) an effect on plasticity.

This could be the action of some of the other drugs you are taking. I think it is a bad idea to be mixing benzodiazepines with this drug (I am skeptical of @Zimichael 's claim that benzos increase plasticity, or do so in a predictably beneficial way). They are both hyperpolarizing agents (benzos target synaptic GABAa) so you are getting a double whammy.


I am using 200 mg for 1,5 month, and there was side effects, but i see you did not read my text, I dont have problems with side effect, I have problem that side effect went away but t is increasing by a DAY, TINNITUS, who spoke about side effects, it was stable and then slowly just went up and up and up.... tinnitus sound went up. It is immunity on medicine or tolerance. So yes nice, side effect happen, but i dont have side effect except amnesia, and you cant tell me it will go away, it is dosage depndent, when i take pill and i have highes conectraion in blood (and again i know what are concentrations) then it is strongest, and then after 5h is much less and closing to 8th is less then i take pill, and i get up 200 mg and then again. Well and now i notice i became guinee pig for you to experiment. Point is I was using all this time same medication, and it worked for month and then stoped.
 
@Christian78 ...Bummer! I'm really sorry to hear this news, and I'm not sure going up to 800 mg or 900 mg is the right thing to do. My sense is that it "worked" for you at a lower dosage and perhaps just ramping it up might create some worse side effects, like your inability to think easily (mathematics, etc.).
However, the choice is yours and I would 100% trust your own judgment on what to do! If you decide to drop off though, I would for sure taper slowly.

From the little I understand of this drug, "adaption" should not be that easy - say compared to an antibiotic which can screen out the toughest bastards, that survive if you don't 'kill them all' so to speak. Then these tough mothers multiply with inherent resistance, and the drug becomes "ineffective". Trobalt works on a whole different level to that kind of action...But hell, I'm "adaption in motion", as a high percentage of meds I have taken do indeed become ineffective, (or make me really ill right away) so I am not going to question it too deeply.

I agree with @locoyeti ...it is possible some drug interactions are taking place, as we know so little about that aspect in this whole 'experiment'.



@locoyeti ...Actually I am saying the opposite of the above. And indeed I have been purposefully coming off my one and only med (Clonazepam) for the past, nearly 3 weeks, exactly for this reason. I want as little of it as I can handle to interfere with my Potiga trial...When it ever gets here that is!
I'm pulling a section from what I wrote about plasticity, Kv Channels, and Benzo's in the Autifony thread. You probably did not read it because it was so long. Ha ha...Yeah, I don't know "brief". It's relevant to Retigabine too of course:

.....OK, so say we have this "T. event" and there is a lack of plasticity? Well maybe this sudden T. would just freak out the audio crew, who jump up and have all kinds of political debate about what to do, act just like our Congress and get nowhere for ages....and then someone notices that the T. went away! They all cheer and get back to the important stuff like dining with lobbyists.

Maybe here the "plasticity" was 'under the influence' of say....a Benzo!!!...if we go with the theory (which apparently is in the Jasterbrof book - which I have no intention of reading) that they "impair" plasticity:

'Alprazolam (Xanax)and other benzodiapzepines impair plasticity in the brain and reduce learning ability, thus counteracting TRT (and habituation).We strongly oppose the use of alprazolam for tinnitus.'

Apologies if this quote is wrong, but it is just an example model anyhow.

In this case the "lack" of plasticity may be a good thing as it meant the adaption and potential to form a "habit" through this "plastic functionality", was out to lunch due to GABA intoxication. Well cool...Who the hell wants T. anyhow???!!! Phew...sure glad plasticity was compromised there.

And so on...Obviously the inverse could be true. Obviously there are tons of variables. However, getting back to when "plasticity" does set in, it seems to me that (counter to my example of the trashed bridge earlier) the bridge across the river gets buckled, or kicked down-stream a few yards, and traffic gets totally weirded out. It does not go and find a completely new way to Kansas.....


And so on...[PLEASE NOTE, THE ABOVE IS TAKEN OUT OF CONTEXT AND DON'T COME TO ANY CONCLUSIONS FROM IT WITHOUT READING THE WHOLE POST].

Check that thread if interested in my "plasticity story" and Kv channels, etc., etc. *[Wednesday September 10th.]

Best, Zimichael


Have I said I was chaning dosage? You people like to speculate and say it is this or that.

I have been using all the same for i,5 month, and then i became slowly worse and worse, rather to say my t just started taking over, i did nto had spikes before now they just start and one ear start screeching like i had before i took this medicine, it does not cut spikes. please dont speculate on change as i did not change anything except been using it same dosage for 1,5 months and then like something happen and t just start going up.
 
I haven't taken Retigabine for tinnitus, but I have tried 4 different epilepsy drugs for pain. Each of those drugs had to be slowly tapered up after a little while to continue working. Maybe it could be worth trying a small taper up before giving up.
 
@Christian78
On second thought, maybe Zimichael's idea of tapering down might be a good idea. You might be having some drug interactions, because I don't think that you are becoming 'immune' to this drug. From my understanding, some drugs, especially that that work on the synapse, initiate cascading events that change the concentration of neurotransmitters, receptors, etc, which lead to 'adaption/immunity'. It is possible that retigabine, by modulating the Kv channels to an open state, creates its own set of adaptations (increasing membrane PIP2, VGLUT1/VGLUT2 ratio changes that benryu referred to, or some other theory I'm not aware of) that lead to improved functioning of the dysfunctional neurons in the auditory network, but from what I understand there is not any direct amplification of the drug going on at the cellular level. Since you did see some improvement, it is very puzzling why you are experience a reversion. Any one else have any thoughts?

@Zimichael
Apologies, I stand corrected. I was referring to your posts on this thread, and the idea that Benzos increase plasticity was new to me and I made an aborted attempt to verify this online without any success. I just associated the idea with you, sorry. Looking back over the posts, it seems that you were just raising some questions about possible interactions, and I agree with you that weening off of them is a good idea before you try retigabine.

"due to inference that Benzos increase plasticity (which could be a good thing or a bad thing), "
https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-38#post-62303

"My thoughts had been, re the GABA (in my simplistic terminology): Benzo's increase brain plasticity and this could be a good thing, or a not so good thing…"
https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-38#post-62374

i am not guinea pig. lets try this or lets try that. lets dissect me me to see what is wrong. or better give me bigger or lover dosage. you are not concerned how i will react on it, you are who know where. when you try this medicine and get into same condition as me then well ok, we do experiment on you. i wrote about how volatile is this medicine, there was even chart. try this, try that - i am very weary to give advice's that have strong implications.
 

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