Retigabine (Trobalt, Potiga) — General Discussion

[raymundo2245]

Retigabine is a prescription medicine for controlling epileptic seizures. Since it hasn't officially been tested on humans for tinnitus, it's hard to get, but if you have a sympathetic doctor you may stand a chance.

Thanx for the info, i have a cus that is epileptic, maybe i can ask him for it, ,but im a bit worried if it would affect me....

I habituated very fast in the past, it took me 2 mon5hs to adapt since i was doing alot of research, i remember i would get very nervous and depressed with the none stop noise, constant beep, very high pitch, it took me no time, but this time its louder, oh God is louder, i hope i get to habituate again, i hate myself for going to that loud place.. im feeling all the simptoms i had felt at first, its very hard, i get nausea and sleepless and im working lots of hrs. I work at a loud place in a refinery but i had taken care of my hearing very good with ear plugs and muffs,but this time the noise was just to loud, God i hate this, any sugestions as what i can do, im really sruggling, i have some steroids due to ky allergies, i wonder if they could help me at al..

I have steroids for my allergies, im gonna try them, but i wonder what my dosage should be?

 

[Christian78]

Where can you get this treatment, sounds interesting, i wentto a loud place to eat last night, texas game was on loud and ob my God, this noise went high up, anybody knows if it will decrease i. Several days or did i mess up by going there, im very sorry i went there , now i have no doubt this was noise induced, i was very doubtful, not any more, anybody?

I advise you to try come clonazepam, right now! because he puts down glucomates, and release gaba, so they don't "eat" damaged hearing cells, much of c vitamin, b vitamin, and multi vitamin pills

 

[Zimichael]

Hey Michael---I just sent my RX into blueskydrugs for my next batch. I was thinking to myself... mmm were you the only one in the "Trial" who used the canadian pharmacy system? Just a crazy thought but if you were maybe there's the possibility that the stuff isn't "pure"...IDK just thinking out loud...

Hey SS... I really doubt that the stuff I got from UK was "fake" or "junk"...It has a Lot Number: 1252 and an expiration date of 03-2015. The box also has a braille touch feature which no scam company would bother to do. All looks totally legit to me, and I have been to Thailand (3 times) and India (once) and seen some pretty "interesting" meds over there.

I think the shotgun Kv7 is just unlikely to be my thing...For a fast fix anyhow. [Notice that Undecided is getting rapid results of change almost immediately].

Best, Zimichael

 

[undecided]

I'd just like to note that my T is quite unpredictable. I could just be having some low days...
Been keeping my stress levels under control lately so that's definitely a big help, can't say (yet) if it's the Trobalt doing its thing... Only used it for just a week, let's see how it goes next week.
Problem is, my 'stash' is running out next Sunday and it's unlikely that the next batch will be arriving on time.

 

[SoulStation]

Hey SS... I really doubt that the stuff I got from UK was "fake" or "junk"...It has a Lot Number: 1252 and an expiration date of 03-2015. The box also has a braille touch feature which no scam company would bother to do. All looks totally legit to me, and I have been to Thailand (3 times) and India (once) and seen some pretty "interesting" meds over there.

I think the shotgun Kv7 is just unlikely to be my thing...For a fast fix anyhow. [Notice that Undecided is getting rapid results of change almost immediately].

Best, Zimichael

I'm sure you're right. I spoke with them and looked up some positive reviews.

 

[theekarwash]

He might be right...only a handful of people have tried this for tinnitus.

I know, I know, and I appreciate his opinion. I'd like to try it regardless though, hopefully he listens to me next time.

 

[bedouin]

I know, I know, and I appreciate his opinion. I'd like to try it regardless though, hopefully he listens to me next time.

Let us know if you manage to get it.

 

[theekarwash]

Let us know if you manage to get it.

Will do. When I went to him first he asked me would I try serc first, so I'm hoping he'll give it to me if it doesn't work, which it doesn't seem to be.

 

[bedouin]

Will do. When I went to him first he asked me would I try serc first, so I'm hoping he'll give it to me if it doesn't work, which it doesn't seem to be.

Serc is mainly for vertigo/dizziness but what do i know.

 

[theekarwash]

Serc is mainly for vertigo/dizziness but what do i know.

That's what I thought. It's for meniere's primarily from what I've read.

 

[Zimichael]

Trobalt Supply Issues

I thought I would share this as it will be relevant for those thinking of getting Tobalt/Potiga from the "Canada" source. (Primarily for those here in USA, but includes Australia folks who have asked me about it).

If you recall, it takes two weeks minimum to get a new batch of Trobalt c/o CanadaPharmacyOnline from day of order. It comes out of the UK and indeed is sent airmail, but has to dawdle around in US customs, etc. So you need to order at least 3 weeks in advance for "re-supply". They recommend one month in advance.

OK, fine...once you know it is "tolerable" (not a "Hengist reaction" and thus a bunch of wasted $$$ sitting in a box) that is do-able. BUT...and this is a significant problem...As of today the stuff is still not available!!!
I called late Friday afternoon and they contacted their UK source, and the UK source said: "No know re-stocking date and call back in a week."

So yeah, simple maths tell you that when I re-ordered two weeks ago so I could continue my trial going up in dose, I should have had my new Trobalt by now. Wellllllllllll....Not so, as even if it came in tomorrow in the UK it would now be a total of FOUR WEEKS from when I ordered. In reality, it looks like it would be five weeks, or....Never???!!!

That blows a huge hole in any Trobalt dosage sequence plan. In fact makes it worthless for someone like me...so I am damned glad I did a rapid about face and ramped up to a quick test of 600 mg total/day, even if it was for a few days. Otherwise I would have been sitting, waiting in a "holding pattern" dose for no darn good reason in the end. Would have been even more depressing after all the effort.

So be warned! Make sure you have a good supply if you are expecting to be on Retigabine for any length of time. (You Europeans in kosher countries just have the 'doc obstacle'...I think. God knows how steady your supply is/will be).

Last up on this. It just seems bizarre to me, that an epilepsy drug would be "out of stock"??? I mean, think about the ramifications of that if you are epileptic, chewing up Trobalt at 900 mg a day say, and then just "run out". NOT GOOD for the "M-wave" or whatever. Not good at all.
So I was thinking...@Lisa88 or other UK members...Any chance you guys could go down to the local Boots or chemist and ask about Trobalt availability??? (I do this with pharmacies by saying I'm price shopping, plus I don't want to waste my doc's time on writing a scrip or making an appointment = $$$, just to find out the drug is too expensive for me, or whatever...and "Oh, how long does it take to get here?". Etc., etc.). I would be super interested to know what their reply would be right now in the UK...Thanks!

P.S. I will be fully off Trobalt in two more days.

Best, Zimichael

 

[111]

Came across this document, this company is looking at developing a newer style of trobalt ( still using ezogabine ) but more potent and has less side effects

 

[Rube]

Came across this document, this company is looking at developing a newer style of trobalt ( still using ezogabine ) but more potent and has less side effects

wonder when that will be Available

 

[SoulStation]

Trobalt Supply Issues

I thought I would share this as it will be relevant for those thinking of getting Tobalt/Potiga from the "Canada" source. (Primarily for those here in USA, but includes Australia folks who have asked me about it).

If you recall, it takes two weeks minimum to get a new batch of Trobalt c/o CanadaPharmacyOnline from day of order. It comes out of the UK and indeed is sent airmail, but has to dawdle around in US customs, etc. So you need to order at least 3 weeks in advance for "re-supply". They recommend one month in advance.

OK, fine...once you know it is "tolerable" (not a "Hengist reaction" and thus a bunch of wasted $$$ sitting in a box) that is do-able. BUT...and this is a significant problem...As of today the stuff is still not available!!!
I called late Friday afternoon and they contacted their UK source, and the UK source said: "No know re-stocking date and call back in a week."

So yeah, simple maths tell you that when I re-ordered two weeks ago so I could continue my trial going up in dose, I should have had my new Trobalt by now. Wellllllllllll....Not so, as even if it came in tomorrow in the UK it would now be a total of FOUR WEEKS from when I ordered. In reality, it looks like it would be five weeks, or....Never???!!!

That blows a huge hole in any Trobalt dosage sequence plan. In fact makes it worthless for someone like me...so I am damned glad I did a rapid about face and ramped up to a quick test of 600 mg total/day, even if it was for a few days. Otherwise I would have been sitting, waiting in a "holding pattern" dose for no darn good reason in the end. Would have been even more depressing after all the effort.

So be warned! Make sure you have a good supply if you are expecting to be on Retigabine for any length of time. (You Europeans in kosher countries just have the 'doc obstacle'...I think. God knows how steady your supply is/will be).

Last up on this. It just seems bizarre to me, that an epilepsy drug would be "out of stock"??? I mean, think about the ramifications of that if you are epileptic, chewing up Trobalt at 900 mg a day say, and then just "run out". NOT GOOD for the "M-wave" or whatever. Not good at all.
So I was thinking...@Lisa88 or other UK members...Any chance you guys could go down to the local Boots or chemist and ask about Trobalt availability??? (I do this with pharmacies by saying I'm price shopping, plus I don't want to waste my doc's time on writing a scrip or making an appointment = $$$, just to find out the drug is too expensive for me, or whatever...and "Oh, how long does it take to get here?". Etc., etc.). I would be super interested to know what their reply would be right now in the UK...Thanks!

P.S. I will be fully off Trobalt in two more days.

Best, Zimichael

Hey Michael. I don't know if all the Canadian Pharmacies use the same supplier but I ordered 168 100mg tabs from blue sky drugs and they confirmed the order with me yesterday. I even went as far as to mention your specific case as to not waste my time/money on a nonexistent supply but the rep on the phone was confident that they would be informed if they were out of stock. I am hoping this is true but based on the similarity of their websites, most of these Canadian Pharmacies seem to be cut from the same mold ... So I can just hope I don't get a call Monday saying " hello Sir...sorry Sir...we apologize sir etc....." But just out of curiosity did you try any of the other Canadian Pharmacies? There are many as I'm sure you know.

 

[Viking]

Keep us posted, please! We should start a new thread on it if you go!

Of course I will keep you updated. I sent all my clinical reports in Switzerland and I have a date 10 February 2015 to carry out some clinical trials. The waiting list is incredibly long, but I had the pleasure of talking by telephone with Dr. Jeanmonod for more than 30 minutes and was very interested in my case study. Meanwhile I wanted to inform you that I always keep in touch with the great Dirk De Ridder who just wrote me an email today which suggests the use of Selegiline. "
Dirk De Ridder
to
me
Today at 7:21 AM

There are some positive reports of Selegiline as well as from intranasal oxytocine for tinnitus. Consider you could to try these. "

Tomorrow I start a cycle of tDCS for 5 days, 20 minutes a day in Rome in an attempt to alleviate. Tinnitus is more and more strange. This morning was left barely perceptible in the afternoon after lunch has exploded all right as soon as I put on the bed. There is nothing more I'm understanding. It seems to be more and more influenced by movements of the neck. After tDCS attempt i will try this molecule suggested by De Ridder. If someone wants me to "company" .... . I should add that I'm doing at home on a cycle of TENS therapy by placing the electrodes in the C2 zone in order to inhibit the cochlear nuclei according to this study: http://www.ncbi.nlm.nih.gov/pubmed/20505927

I will also try again with cannabis because for many years, before the ominous use of hearing aids I was fine! I had bilateral tinnitus but I do not like now destroyed.

Best wishes to all

Ivan

 

[raymundo2245]

Thanx christian79, i really apreciate the help and advise, but where do you get the clonazepam?do i go to a doctor or can you buy it in paharmacies....

 

[raymundo2245]

I wonder what noise induced T is best treated with? I did it before with lots of patience and determination, i know i can do it again but its just that it was stupid of me to go to a place like that, but oh well, i need to rehabituate, and im gonna do it, it was incredible, it had decreased alot and it wss very loud at first, now its back to the same levek it was at first or maybe its just that my ears got damaged again, since i feel alk the same simptoms, sensetive hearing,depression,not hungry, nausea, when it all was gone and started eating better habituation kicked in, so i guess its just a matter of time, i feel the same crackleling i felt at first, now maybe if i get lucky it will get the same way it wss again, i really hope so..

 

[Rube]

Thanx christian79, i really apreciate the help and advise, but where do you get the clonazepam?do i go to a doctor or can you buy it in paharmacies....

you would need a prescription for it.

 

[jazz]

Came across this document, this company is looking at developing a newer style of trobalt ( still using ezogabine ) but more potent and has less side effects

Thank you! Just thought I'd extract this from your pdf in case people have not yet read it:

SciFluor utilizes the incorporation of fluorine to create drugs with improved pharmacological profiles that provide important benefits over existing therapies. SF0034 was discovered by incorporating fluorine into ezogabine, an approved treatment for partial-onset seizure that must be administered three times a day. Data show that SF0034 is five times more potent with decreased QTc liabilities and a more balanced excretion profile. In addition, SF0034 is less active at the potassium channel that causes urinary retention, potentially alleviating a key side effect of ezogabine.​

 

[SteveToHeal]

Selegiline as well as from intranasal oxytocine for tinnitus

Did you try any of these with any joy, t reduction?

 

[SteveToHeal]

Tomorrow I start a cycle of tDCS for 5 days, 20 minutes a day in Rome in an attempt to alleviate. Tinnitus is more and more strange. This morning was left barely perceptible in the afternoon after lunch has exploded all right as soon as I put on the bed. There is nothing more I'm understanding. It seems to be more and more influenced by movements of the neck. After tDCS attempt i will try this molecule suggested by De Ridder. If someone wants me to "company" .... . I should add that I'm doing at home on a cycle of TENS therapy by placing the electrodes in the C2 zone in order to inhibit the cochlear nuclei according to this study: http://www.ncbi.nlm.nih.gov/pubmed/20505927

Is tDCS the TENS therapy?

 

[Zimichael]

Trobalt Supply Issues...

@SoulStation ...Regarding "Blue Sky Drugs in Canada". Could you please (in due course):

1. Give the date you ordered (presumably by phone - and presumably October 11th).
2. The date your Trobalt ships (you should phone them to ask after a few days, just to make sure).
3. Your confirmation email should say where it ships from, or ask. Could you tell us who, and where from.
4. The ultimate date of arrival in your hands.

Thanks much...I would appreciate it at least. Zimichael

 

[Juan Carlos]

In this link seems to be more info about SciFluor and preclinical data, but must be a pay registerd member. Maybe someone that reads this is a member?
http://www.biocentury.com/weekinreview/preclinical/2013-07-29/scifluor-preclinical-data-325137

i found it listed in this table: http://www.nature.com/scibx/journal/v7/n34/fig_tab/scibx.2014.1003_T1.html

so it targets specificallyKkv7.2 and Kv7.3. I think Retigabine targets all 4 subchannels?

 

[Zimichael]

Trobalt & Tinnitus Type Clarification Please...

OK, this question may be for just me too, but I think it is really relevant to the whole "Trobalt understanding" thing...

A. So far I am the only one with really long term, hard core Tinnitus, that has tried Trobalt.

B. I also have incredibly "stable" Tinnitus. Classic tone and pitch. Never changes for anything except if triggered by loud sound, and sound alone. This has been the case for all four levels, once got them.

So, I did a search back to all of our trialees and tried to figure out who else has had stable, and pure acoustic trauma induced tinnitus before starting Trobalt. Reason being, in a simplified view of things I suspect that "variable" T is much more likely to be subject to and affected by other things such as TMJ issues, cervical issues, circulatory issues, sinus issues, bone growth things, whatever. In other words, potential "mechanical/physical" body reasons v. "BANG!!!" hair cell destruction and nueronal/glutamate freak out.

Well, only @Johno has anything in his "Profile" about his T. (*****Gold stars mate!). Thus my long and semi-fruitless journey into everyone else's "Type of T" was very incomplete and thus unreliable...BUT, I did notice quite a lot of you have mentioned much variability in your T before Trobalt. Certainly, @Christian78 , @Viking , @undecided , and I think @Johno too - though yours indeed was acoustic trauma induced. @Bogdan , yours seems to be spinal caused. @SoulStation yours appears to be multiple complex tones, but not sure if stable. @Hengist was acoustic trauma but not able to take "Trobalt"...@Mpt, @Freddie, @Lep, not sure at all what and how stable your T was before Trobalt.

Am I the only one who thinks this is really important??? I feel that with such a small tiralee base that this "variability" is crucial to understand if we are going to make any tentative conclusions about our assumed Kv7 mechanism on T.

We know that Trobalt has an effect on smooth muscle zones. We know that Trobalt has an effect on "Neuronal Excitability" in general! Kv7.2, Kv7.3 and Kv7.5 affect this excitability. Supposedly only Kv7.1 and Kv7.4 have influence on the Cochlea and Vestibular Hair Cells.!

Are you seeing what I am getting at here? Kv7.1 is out of the Trobalt loop, so that just leaves Kv7.4 as the "Hearing dude" per se. The other 'general excitability' Kv's could be having all kinds of "effects" on the body other than direct "hearing". Which in turn could affect T if it is not "classic acoustic trauma damage".

Maybe I am splitting straws here, but I don't think so. I think Trobalt has a somewhat "sedative" action, mood action, and calming action. I mean look at Christian's recent descriptions! This could have significant impact on what I am calling "variable T", that is not plain vanilla "BANG!" damage T. Which from my impression (talking to many others with T over the years) is stable as hell. *[Except for overall increased stress due to lack of sleep, etc., etc. that makes everything more "aggravating"].

OK, I have probably bored everyone to death again but from a research point of view I think this is an essential question to answer if anyone is going to focus on Kv7 channels...Which seemingly some companies are! And I want to talk to them about which ones to focus on...so that Autifony has more competition.

Best, Zimichael

 

[Juan Carlos]

Hi! first of all is not boring at all. Thanks for your thoughts.
IMHO, the 'side effects' of Trobalt doest have much to do with its effect on T, As people that had T for years probably tried tranquilizers and muscle relaxants or any other kind of med and didn't feel so much effect as Trobalt is doing. I think that the cause is not so important as some people thing as the effect seems to be the same: hiperexcitability of some parts of the auditory system, going from cochlea to the auditory cortex. Once the cause is gone, there might be no difference between one that had it for stress or another for infection or neck trauma. Maybe acoustic trauma could be diferent case because it affects to haircells, i can't guess so. The fact that many people with lots of acoustic traumas in life have zero tinnitus makes me think that there is no diference for them also despite they could be a bit more deaf.
People that go to concerts experience tinnitus for some hours after it, and then after hours or days is gone (their K channels are working fine), so i dont think that acoustic trauma makes irrevertisible tinnitus (maybe just irreversible partial deafness)
The big question is why on Zirmichael caused absolute zero effect on T, maybe is just a matter of amount and time on drug and for your case the risk/benefit on Trobalt is not worthing so must wait for Autifony or other K modulator with less side effects. Or maybe it caused some effect but you were not able to see it because your T is too high? I guess will have the answer when Aut63 comes out to the pharmacyes

 

[Viking]

Is tDCS the TENS therapy?

Absolutely not. They are 2 completely different things. TENS is transcutaneous pacing with alternating current. tDCS stimulation with direct current. It also changes the electrodes. They are absolutely different approaches

 

[Christian78]

Thanx christian79, i really apreciate the help and advise, but where do you get the clonazepam?do i go to a doctor or can you buy it in paharmacies....

Clomazepam,or any benzodiazepan ( you need from doctor(, cut on coffee and black tee totaly!!! and use those meds, and take care of your ears

 

[raymundo2245]

Thank you very much, look i really think habituation is responsable for people healing in some way, i was totalky habituated and not bothered as much anymore, but after hurting my ear again made me experience the hell i went through aga8n, i have depression,a deep sadness,and all 5hose ugly feelings, i think positive but its very hard to think that way when that noise just wont leave u alone, my habituation took a coupke of months of hell till one day my brain just had enough of those feelings and decided it wouldnt affect it anymore, so i 5hink its gonna take me a good while to overcome all this, i realky need my family but im away from home, the loneliness kills me specially when i miss my 2 little ones, but oh well, God wilk bless me again with habituation all over again...! I hope you 2 feel better and find comffort in your grieve, T is hell but we can overcome it!

 

[raymundo2245]

I read on one of these threads that meclizine helped a guy get rid of T, so today im gonna try it, i hop3 it at least lowers the sound, i can live with it if the sound lowers just a little.....im gonna try several meds and i will report back......

 

[Johno]

Hello friends. I have to reduce dosage again. Reason is very simple - my trobalt source is bone-dry. I am sorry for that, looks like my part of those experiment will go little bit slower than others . But im thinking positive. In worst case, i will restart it.

I am now on 100mg 3x daily, but i have to reduce it to 50x3 again, due to saving. New boxes of pills i can (maybe) have in next 2 weeks.