Retigabine (Trobalt, Potiga) — General Discussion

[Zimichael]

RTG has some effect on T because potentiates GABA that is sure the other theory of potassium channels is only theory because other drugs that are only potassium chanels openers do nothing on T.

1MW...well you are beyond me with that GABA manipulation process, but sounds interesting for sure.

Sorry if I missed this (been off board for a while), but can you give me the link or general source for this statement of yours above that Retigabine potentiates GABA. I would like to know if this is your own 'opinion' or is source data. Reason being I did a lot of research on this a while back in the Retig game when I was about to take it along with a lowered dose of Clonazepam. Initial in vitro studies had 'implied' a possible Benzo interaction, but later in vivo review after release (a few years - with seizure patients obviously as no 0ne was prescribing it for tinnitus!) showed no credible relationship to Benzos and GABA agonism, or antagonism...Thus my question to you.
Thanks.

Also I agree re above, that if corticosteroids are in your mix, I'm not sure how on earth you can tell what is really going on, as too may powerful known tinnitus "ineractors" on the stage. Indeed, an inflammatory or somatic component seems hard to rule out IMHO.

Best, Zimichael

 

[Zimichael]

@rtwombly ... Thanks for you update in the User Forms! All this feedback is essential I feel if we are not going to be just pissing into the wind.

As an aside, I would suggest taking a few precautionary steps soon, about the possibility of "post partum depression" from the Trobalt. Maybe make a few plans to deal with, ameliorate, integrate a flip-side downer possibility once off it completely...I'm not saying this will happen to you! However, looking back, it happened to me, and was pretty intense.
Back then though remember, "we" had no knowledge that this stuff was a mood drug too.

*[Please note that fact oh believers in placebo for all this stuff! How in hell could we have made that up if it was the last thing anyone would have pre-thought of??? Or let alone increasing hyperacusis say, like for me! This placebo argument has about 50 holes in it when you look at the facts of our wildly variant testers results v. initial expectations, etc., etc.]

Take care rt. and keep on keeping us informed. And yeah, time to come down mate...you sound like you are on LSD half the time.

Best, Zimichael

 

[Christian78]

Did anyone got problem after stopping trobalt with neurological pain, numbness on hands legs, pain around heart, pain in biceps, shoulders, short pain burts... thank you for answer... wonder what to do to help recover from this because it is becoming worse and worse

 

[DebInAustralia]

Christian,

I wonder if Alpha Lipoic acid could help with your neuropathic pain, along with omegas?

I have used the above to recover from neuropathic pain and symptoms arising from vagal nerve dysfunction.

 

[sticky]

Agreed, thank you to all those who are updating the user experience forums.

Just out of curiosity, is a period of 9 - 10 days enough to trial this drug, stop and have my faculties returned to normal so I can return to work? I have never had any experience taking drugs, so I have never taken a dosing schedule etc.

peace and quiet to all

 

[valeri]

Agreed, thank you to all those who are updating the user experience forums.

Just out of curiosity, is a period of 9 - 10 days enough to trial this drug, stop and have my faculties returned to normal so I can return to work? I have never had any experience taking drugs, so I have never taken a dosing schedule etc.

peace and quiet to all

Are you going to try Retigabine?

 

[1MW]

Has anyone stopped benzos with RTG support ?
I have confirmed that a high amount of my T is from benzos and i want to stop rapidly
but rapidly stop is not easy and can cause permanent neurologic damage.
So support from RTG works for benzo withdrawal ? Have you lowered benzos while you are on RTG ?
I want with RTG support to stop benzos and start controlled doses of flumazenil to reset GABAa
receptors destroyed by benzos.
My T is pretty bad when iam without benzo and can stop completely on high dose lorazepam
(without much sedation - signal of tolerance & addiction) in combination with sleep.
So any experiences here from cutting benzos with RTG ?

(Now i have NO tinnitus at all/checked with ear muffs. Yesterday i took 16mg methylprednisolone & 3mg dexamethasone & 1x100mg RTG & 1x300 RT(before sleep) & 1mg lorazepam(before sleep) but i had T i slept for 7.5 hours and wake up with very slight T before 1 hour i took 250mg nicotinamide & vitamins B1 & B6 & B12 & 1x100mg RTG and now i have NO T. I don't know it will last but is a good sign.Yesterday i had T from 5/10 to 9/10 before take any drug)

 

[undecided]

RTG is an anti-epileptic drug, as you know.
If you have signs of benzo addiction, I highly doubt whether an RTG high could mask the psychological and somatic side-effects of rapidly stopping lorazepam.
Also, I believe that injecting yourself a benzo anti-poisoning drug will not lead to any reconstruction of destroyed GABAa receptors. You need to take it slow, cut lorazepam little by little and your body will take care of the rest.

Also, I am not a doctor and I certainly don't want to criticize anyone, but mixing corticosteroids, anti epileptics, vitamins and benzos seems a little unsafe, especially if you have no lasting results.

 

[nogood]

It might sound odd advice but get more active And Drink pleanty of water.
neurological pain are not real pain rather created by brain. what you explain seems like your body is trying to adjust. I am sure it wil pass soon.

Did anyone got problem after stopping trobalt with neurological pain, numbness on hands legs, pain around heart, pain in biceps, shoulders, short pain burts... thank you for answer... wonder what to do to help recover from this because it is becoming worse and worse

 

[Mo_Mo]

I don't know it will last but is a good sign

Did it last?

 

[1MW]

Did it last?

No i have 1/10 T now with 100mg RTG i can stop it but i don't have very much RTG pills so i will keep them for nights sleep. The hearing restoration happens in sleep so a good sleep is the best treatment for T.
With RTG improvement last very low (1.5 hour ) and max 2/10 improvement.
With lorazepam which is toxic for hearing/T/hyperacusis i can get for 8 hours 8/10 improvement and total silence. So my T responds more on GABAa drugs like lorazepam than potassium channel openers.

 

[Zimichael]

Has anyone stopped benzos with RTG support ?
I have confirmed that a high amount of my T is from benzos and i want to stop rapidly
but rapidly stop is not easy and can cause permanent neurologic damage.
So support from RTG works for benzo withdrawal ? Have you lowered benzos while you are on RTG ?
I want with RTG support to stop benzos and start controlled doses of flumazenil to reset GABAa
receptors destroyed by benzos.
My T is pretty bad when iam without benzo and can stop completely on high dose lorazepam
(without much sedation - signal of tolerance & addiction) in combination with sleep.
So any experiences here from cutting benzos with RTG ?

(Now i have NO tinnitus at all/checked with ear muffs. Yesterday i took 16mg methylprednisolone & 3mg dexamethasone & 1x100mg RTG & 1x300 RT(before sleep) & 1mg lorazepam(before sleep) but i had T i slept for 7.5 hours and wake up with very slight T before 1 hour i took 250mg nicotinamide & vitamins B1 & B6 & B12 & 1x100mg RTG and now i have NO T. I don't know it will last but is a good sign.Yesterday i had T from 5/10 to 9/10 before take any drug)

Man, your protocol and drugs/supplements list is so complicated and potentially "ineractory" I have no idea how to make any comment on what is, or could be, going on! Except good luck!

It does sound like your T responds to GABA though, so given the differences in personal response we have seen to Retigabine, you may indeed want to focus there...in a less "complex" manner??? My T does not change with a benzo...it just calms "me" down if I take a smacker dose. However I did reduce my daily Clonazepam before taking Retigabine but held steady throughout the trial, so as to not mess with results. After the trial I dropped slowly to zero but started to get the typical 'benzo withdrawal' shit that was too much for me to handle alone (as also got recurrence of severe, long term, undiagnosed gut pain to add to the fun!). So went back to my baseline benzo for now. It does not work much for purpose (sleep) but coming off it is no picnic!
So I do not recommend a fast taper.

Best, Zimichael

 

[Dr. Nagler]

Hi All -

I have some additional information regarding retigabine - anecdotal in nature - that some might find to be of interest.

My hearing thresholds have decreased a bit over the past year as reflected in a recent audiogram (I already wear hearing aids) and along with it my tinnitus sounds somewhat louder as best I can judge (it was already thunderous). As most of you know, I believe that when retigabine is formally studied, it will be found to be no more effective than placebo in treating tinnitus. (I have previously explained why I feel that way in some detail.) Nevertheless, because my tinnitus seems to be getting louder, I decided to look into it a bit more.

My clinic is located in a state of the art cutting edge medical center, and my internist (who has been my primary care doctor for some fifteen years now) is pretty-much a "doctors' doctor" in that medical center. He is extremely thorough and has an encyclopedic understanding of internal medicine. This morning I had my annual physical exam with him, and a month or so ago in anticipation of that exam I told him that there was a growing body of anecdotal evidence that the anti-convulsant retrigabine was helpful in reducing or eliminating tinnitus. I asked him to please research the drug and discuss it with some of his colleagues in neurology, who might be more familiar with it than he, so that at the time of my exam we could talk about the possibility of my taking it off label in the hopes of settling down or even eliminating my tinnitus. (I could quite easily prescribe it for myself, of course, but I respect his opinion and wanted to run it by him.) I did not tell him that I was skeptical about its efficacy in order not to bias him in any way.

So towards the end of my visit today, I asked him if he had had a chance to research the issue. He said that he had spent a few hours reading up on the drug and discussing it with some neurologists. He asked me how much my tinnitus was bothering me these days, and I told him the truth - that it seemed louder to me over the past year, but that hasn't really bothered me all that much since I went through TRT ... and that nothing has changed in that regard. Basically I'm aware of it maybe 10% of the time unless I purposely seek it, and while it can most certainly distract me and catch me totally off guard, it causes me relatively little distress.

Bottom line. Because they are so concerned about the drug's adverse effect profile and because nobody has any idea about long-term toxic effects that have yet to be discovered because the drug is relatively new, neurologists are extremely hesitant to prescribe it for their patients with seizure disorder except as a last resort when other therapies have failed. Based on that fact and his own research, my internist said that he would not even think of recommending it for me off label unless I had failed safer therapies and was absolutely miserable (which is clearly not the case in spite of how loud my tinnitus is!)

stephen nagler

 

[attheedgeofscience]

Bottom line. Because they are so concerned about the drug's adverse effect profile and because nobody has any idea about long-term problems that have yet to be discovered because the drug is relatively new, neurologists are extremely hesitant to prescribe it for their patients with seizure disorder except as a last resort when other therapies have failed.

Thank you for the information, Dr. Nagler.

The above is actually something I specifically pointed out myself a while ago...

I should also mention that Trobalt is considered a "drug of last resort" in the treatment of epilepsy. You are therefore not likely to find that many epileptics taking it because of the long term side-effects.

...and yet you disagreed with me after I posted it:

According to the University of Pittsburgh study referenced earlier in this thread, Retigabine is "a drug often used in the treatment of epilepsy."

 

[Dr. Nagler]

Thank you for the information, Dr. Nagler.

The above is actually something I specifically pointed out myself a while ago...

...and yet you disagreed with me after I posted it:

What I said it that post is 100% accurate: "According to the University of Pittsburgh study referenced earlier in this thread, Retigabine is 'a drug often used in the treatment of epilepsy.'" That's what the study said. The information I got from my internist today regarding its use in our medical center here in Atlanta happens to differ.

But none of this changes the fact that we are dealing here with a drug with a potentially huge downside in the short term and that has unknown long term toxicity.

Just something to add to the equation.

stephen nagler

 

[1MW]

@Zimichael i have tried clonazepam and it does nothing to my T only little calm like you.
My T responds only to lorazepam benzo not other benzos (i have also tried clonazepam/diazepam/bromazepam/flunitrazepam/alprazolam/midazolam ..).
Before some months i had little T worsening and started low doses benzos after that my T become much worse
developed hyperacusis ear pressure/pain so i think except from my old hearing problem (from ssnhl)
benzos & corticosteroids magnified this problem to huge degree.
I addicted to these drugs (yes corticosteroids cause addiction) because before some months i had little T
and when i got these drugs in start I had long times with zero T after the temporary initial improvement i have progressive worsening.
So iam searching a way to stop benzos & corticosteroids but when i try to lower dose i get freaking bad
T & H & ear pressure/fullness/pain. I have tried many times to stop but the symptoms is so bad and i fear for permanent worsening so i get again & again these drugs.
So my hope with RTG support is to stop these toxic drugs.
Have anyone withdraw from benzos successfully with RTG support without T worsening ?

@Dr. Nagler some people have so bad T & H that are in suicide situation (i was in the past) so the side effects from RTG are nothing if someone is in situation to end his life.
In the past if i don't had anesthetics to cope the symptoms of T&H now i will be dead from suicide
so you must weight the side effects with the severity of T&H.

 

[Dr. Nagler]

... you must weight the side effects with the severity of T&H.

There is indeed a lot to weigh. All I am saying is that retigabine is not a drug to be taken without very careful consideration. It's not simply a case of "I'll give it a try and see if I can tolerate the side-effects." I asked the opinion of a person I trust who has absolutely no dog in this hunt save for my own well-being. And that is what I learned.

stephen nagler

 

[1MW]

RTG is not new developed 1980 in east germany.
Patent for T&H therapy with RTG is registered sinse 2000.
In my opinion the problem is not the side effects the problem is the non effects.
The problem is that it has very low effect on T and this effect is temporary not permanent cure.
Sometimes temporary effect can give permanent effect for example if you get back your sleep
with good sleep the T can subside because hearing restores in sleep.
RTG can be good to break the infinity T loop in some people and improvement come its own from better sleep.
I think that is happened to @Mpt RTG stopped to toxic infinity loop and improvement came naturally.

 

[dan]

RTG is not new developed 1980 in east germany.
Patent for T&H therapy with RTG is registered sinse 2000.
In my opinion the problem is not the side effects the problem is the non effects.
The problem is that it has very low effect on T and this effect is temporary not permanent cure.
Sometimes temporary effect can give permanent effect for example if you get back your sleep
with good sleep the T can subside because hearing restores in sleep.
RTG can be good to break the infinity T loop in some people and improvement come its own from better sleep.
I think that is happened to @Mpt RTG stopped to toxic infinity loop and improvement came naturally.

I agree, and if you look back, he did say that he was already habituating on his own before RTG.

 

[locoyeti]

Bottom line. Because they are so concerned about the drug's adverse effect profile and because nobody has any idea about long-term toxic effects that have yet to be discovered because the drug is relatively new, neurologists are extremely hesitant to prescribe it for their patients with seizure disorder except as a last resort when other therapies have failed. Based on that fact and his own research, my internist said that he would not even think of recommending it for me off label unless I had failed safer therapies and was absolutely miserable (which is clearly not the case in spite of how loud my tinnitus is!)

Anecdotes, "logic", and a few hours of research is not sufficient to come to an educated conclusion, unless by "doctors' doctor" you mean that he has a Phd in this particular subject. It's as if you want everyone to take your authority and dismiss all other therapeutic routes except for TRT. The risks of this drug have been expressed ad nausea on this thread, and so too your noted skepticism. I think everyone on this thread would agree with the statement "If you are taking retigabine, tread carefully and inform thyself".

By the way, what does it even mean to be rather certain that something is true but then in the same breath hope that it is not true? Only a very bifurcated mind can hold these two sensibilities simultaneously. It is probably just posturing on your part- you want to come off as impartial, so you toss what seems like an avuncular equivocation: "But I'd love to be wrong!" (I wonder what the word 'certainty' even means to you). Your posts on this thread seem to boil down to variations of: 'trust me, I know what's really going on' (logical fallacy). In my opinion this thread needs much more rigorous research into how this drug works at a more closer level of detail. Those who have taken the drug (me included) are well aware that we are taking risks, but there is very good evidence that this drug may help people with their tinnitus. We need more, not less, digging.

Thing is I think TRT is probably very helpful. It almost certainly will not be the only therapeutic solution to tinnitus when all is said and done, but I-

 

[rtwombly]

There is indeed a lot to weigh. All I am saying is that retigabine is not a drug to be taken without very careful consideration. It's not simply a case of "I'll give it a try and see if I can tolerate the side-effects." I asked the opinion of a person I trust who has absolutely no dog in this hunt save for my own well-being. And that is what I learned.

stephen nagler

That was my experience at the first neuro I asked. They never gave RTG if there was any other way. But from their comments, it was as much about low performance as danger. Yes, this is a dangerous drug, yes it is known to make trouble for people long term, but from my personal experience, it helps tinnitus volume and severity, reduces hyperaccusis greatly, accentuates residual inhibition, and facilitates habituation.

Really the good that has come out of this experiment is yet to come. When either or both of the safer versions of RTG hit the market, there will be a ready-made customer base who will be well served by these medications. Now that I am coming off Potiga myself, I look forward to that day with much anticipation.

 

[valeri]

That's why in 2015 we are where we are, with f.....g habituation left as the only "safe and proven" option

 

[Dr. Nagler]

I went to my doctor today for my annual physical. I asked him about retigabine because I was interested in possibly trying it. I posted what he said, just like hundreds of others do on this board. They go to their doctor for some tinnitus-related issue and post what their doctor said.

As far as I can tell, nothing is different from yesterday.

stephen nagler

 

[1MW]

RTG maybe symptomatic treatment for some cases of hereditary hearing loss.
Some forms of hereditary hearing loss has to do with potassium channels.

 

[Zimichael]

@Zimichael i have tried clonazepam and it does nothing to my T only little calm like you.
My T responds only to lorazepam benzo not other benzos (i have also tried clonazepam/diazepam/bromazepam/flunitrazepam/alprazolam/midazolam ..).
Before some months i had little T worsening and started low doses benzos after that my T become much worse
developed hyperacusis ear pressure/pain so i think except from my old hearing problem (from ssnhl)
benzos & corticosteroids magnified this problem to huge degree.
I addicted to these drugs (yes corticosteroids cause addiction) because before some months i had little T
and when i got these drugs in start I had long times with zero T after the temporary initial improvement i have progressive worsening.
So iam searching a way to stop benzos & corticosteroids but when i try to lower dose i get freaking bad
T & H & ear pressure/fullness/pain. I have tried many times to stop but the symptoms is so bad and i fear for permanent worsening so i get again & again these drugs.
So my hope with RTG support is to stop these toxic drugs.
Have anyone withdraw from benzos successfully with RTG support without T worsening ?

@Dr. Nagler some people have so bad T & H that are in suicide situation (i was in the past) so the side effects from RTG are nothing if someone is in situation to end his life.
In the past if i don't had anesthetics to cope the symptoms of T&H now i will be dead from suicide
so you must weight the side effects with the severity of T&H.

Sheeesh @1MW ...I can't add much to what I have already said, as am still somewhat confused by what you are taking, how long ago, what time frames have been left in-between, what your the various combinations of meds have been/are, what your "baseline" is - or even if you have been on stuff so variably that you have a "baseline" to evaluate from clearly...etc., etc.

However, I have way too much experience with "variations on a theme" that has driven me nuts for 20 years (undaignosed gut pain after a severe, extended, water-borne parasite infection in the mid 1990's). I have been through 1001 different things of all sorts trying to figure it out. The list of tests and theories in mind numbing.
I had almost never been sick in my life before that, so it took a while - years, to realize that I was getting nowhere by shooting arrows in every direction as each new idea came up. Without a "baseline" I was lost. So even a "baseline on a protocol" became a necessary requirement to ascertain what might be affecting what, with anything new or added.

OK...moral of the story is, if you are not on a baseline, keeping as much as possible "stable" for at least a month - re meds, lifestyle, whatever...then I have no clue how you would know what is doing what. If on benzos and corticosteroids and adding Retigabine (and whatever else you were going to do with that other drug, etc.) I would say: "Holy bloody cow, that is a who knows what the hell cocktail!" As has been clearly stated, just Retigabine is a heavy duty, all over the map, almost "unknown", in relation to T and H - let alone other drug interactions. It can make things worse (like my H) or help...It's too individual to make blanket statements on it yet, though with more short term T folks and people on less other meds maybe, it seems to tentatively be more 'positive'.

So using Retigabine as a "tool" to come off benzo and corticosteroid...Ahhhhhhhh, well, way beyond my risk grade. Also, I would hardly consider attempting it if I did not have that "baseline" I was talking about to then see if the mixture was stable in itself....Or have you already done that??? I don't think it was a happy marriage??? (Sorry it's way back in the thread and just going off memory).

Anyway, excuse me if I am telling you stuff you already know well and desperation is motivating your decisions. I can understand that and truly empathize. However, sounds like a huge bite to take at once, and almost a "triple play" experiment.

You may know this site, but it is one of the best about coming off benzos: BenzoBuddies.org

Take care, and again, excuse me if I am "preaching to the choir" (= telling you stuff you already know).

Best, Zimichael

 

[Dr. Nagler]

By the way, what does it even mean to be rather certain that something is true but then in the same breath hope that it is not true? Only a very bifurcated mind can hold these two sensibilities simultaneously ... so you toss what seems like an avuncular equivocation: "But I'd love to be wrong!"

Only a bifurcated mind? Avuncular equivocation? Then we all have bifurcated minds. We all equivocate avuncularly. Every single one of us. Imagine yourself in a wheelchair for twenty years. By all medical, historical, and logical reasoning you will be "rather certain" that you will never walk again totally on your own. You will of course "hope that it is not true," and you would "love to be wrong." But that doesn't change the fact that it is highly unlikely that you will ever walk again.

So if you will close your thesaurus for just a moment, you will understand how I - as a person whose ears have been ringing day and night for more than twenty years now - can say that based on my current medical, historical, and logical understanding I strongly believe that when properly blinded and controlled studies have been completed on retigabine it will be found to have no more effect on tinnitus than placebo, but I would love to be wrong. That same goes for LLLT for that matter.

stephen nagler

 

[Albertus]

Hey guys, I bring good news. This last week I've improved a lot, All my T have dramatically fallen to almost be imperceptible in my last update and I noticed that after waking enjoyed quite next to total silence time, could be most of the morning if you notice my T and was what throughout the afternoon when it was returning to its average level. As the silence has lasted all day and night. Right now I'm taking 300mgTID and my T is almost imperceptible in a quiet room to hear I have to place my fingers tightly covering my ears and yet I hear far. this feeling lasts me for 24 hours and that several days have not had my morning dose, so I left it at 300x2. I have thought about taking 300TID continue until the end of the month and begin phasing in March. to be completely out of RTG in late March. I am very very happy with the results obtained with the low dose that I am taking. I will continue informing you of my good condition. A greeting !!

 

[jeannie]

thank you Albertus for keeping us updated!! GREAT NEWS!!!!!!

 

[Christian78]

It might sound odd advice but get more active And Drink pleanty of water.
neurological pain are not real pain rather created by brain. what you explain seems like your body is trying to adjust. I am sure it wil pass soon.

thank you , you are very supportive

 

[Mark662]

@Albertus My ears have been ringing pretty much day and night for 27 years, and your personal trial with retigabine and the success of others on this forum who have tried it, gives me hope that it isn't all placebo effect and emotion.

Maybe that's why the patent for this drug, filed 15 years ago, was noted in being useful in the treatment of tinnitus.

0020 KCNQ2/3 potassium channel openers including retigabine are further useful in the treatment of tinnitus

http://www.google.com/patents/EP1407768A2?cl=en