Retigabine (Trobalt, Potiga) — General Discussion

[Rube]

@rtwombly , thanks i'll try it out. nothing to lose at this point. im also seriously considering taking retigabine, just want to see the results from some of the other brave folks.
@Mpt - how are you doing with it, did you decrease your dose yet? is your T still quiet and no other side effects. i read one of your posts where you had some tiredness at end of day.

 

[cdog]

Deep and tough mathematical calculation, and also programming are so hard, you cant remember things, so you forget them fast. For ordinary people it means nothing but for those into deep stuff it means a lot.

Hopefully the amnesia is not permanent! (that is, if you go off the drug, you have pre-drug levels of mind clarity).

Also, perhaps the amnesia effects will lessen over time? Who knows.

 

[valeri]

wonder if anyone would like to see if these can supply trobalt direct to them, dont think they would require a prescription ?

www.merrychemical.com/sell-offer_retigabine_cas_no_150812_12_7-84312.html

@Telis
Just in case you missed it

 

[jazz]

it is equally likely to benefit hyperacusis sufferers as those with tinnitus and no/mild hyperacusis.

Agree! Hyperacusis and tinnitus are closely linked. And thanks for that information on trigger points and hyperacusis. Why don't you also post that video in the hyperacusis section! We can't be certain everyone monitoring the hyperacusis section will also check the Retigabine thread.

 

[william2]

send this to Charles Large

Okay MPT, I think this would really be worth pursuing.
I am certainly grateful you authored this thread because alot of good
has come out of it to help others. I too will be asking for retigabine in the
meantime. With regard to Charles large, what's the best way of contacting
him? I'll keep you all well informed as to communications.

 

[Rube]

Okay MPT, I think this would really be worth pursuing.
I am certainly grateful you authored this thread because alot of good
has come out of it to help others. I too will be asking for retigabine in the
meantime. With regard to Charles large, what's the best way of contacting
him? I'll keep you all well informed as to communications.

charles.large@autifony.com or info@autifony.com

i emailed both requesting some aut00063 info and I received what was basically an auto reply supposedly from Dr. Large
hopefully someone has his personal email!

 

[Viking]

Dear friends, my love affair with Trobalt is terminated because of side effects on micturition. Over the past three days has been painful and the symptoms did not go rather worse. I have no problem it will prostatic bladder. The urologist and neurologist say that I am sensitive to retigabine at central (CNS). With great regret I have to stop. On the other hand, I discovered that maybe the cause of my worsening during the past year in conjunction with the use of hearing aids could be procured me a TTTS. This diagnosis would explain all my symptoms; continuous fluctuations of tinnitus, unexplained fear of sudden noises, nausea, headaches, migraines tensive violent pain in and around the ears and neck. The Trobalt was effective since the fifth day at a dose of 3 x 100 Right ear free. Left ear tolerable. Migraine disappeared! I am really sorry for this. I had finally found a way to thank you. I'll try to deal with the new problem that is plaguing me for over a year, paralyzing all my activities. Hoping it's not too late. Thank you all and may God bless you.

 

[Johno]

Viking: But retigabine give hope to you. Aut00063 will be without those side effects and help you for sure.

 

[dan]

4000 members on here, i would think at least ONE could get in... I hope!

Problem is that one has to actually apply and meet all the inclusion criteria, then reside in the UK for the lengh of the study. That vastly reduces the 4000 count to less than a handful.

 

[SoulStation]

Dear friends, my love affair with Trobalt is terminated because of side effects on micturition. Over the past three days has been painful and the symptoms did not go rather worse. I have no problem it will prostatic bladder. The urologist and neurologist say that I am sensitive to retigabine at central (CNS). With great regret I have to stop. On the other hand, I discovered that maybe the cause of my worsening during the past year in conjunction with the use of hearing aids could be procured me a TTTS. This diagnosis would explain all my symptoms; continuous fluctuations of tinnitus, unexplained fear of sudden noises, nausea, headaches, migraines tensive violent pain in and around the ears and neck. The Trobalt was effective since the fifth day at a dose of 3 x 100 Right ear free. Left ear tolerable. Migraine disappeared! I am really sorry for this. I had finally found a way to thank you. I'll try to deal with the new problem that is plaguing me for over a year, paralyzing all my activities. Hoping it's not too late. Thank you all and may God bless you.

First I want to say I'm sorry you had to stop. Hold strong for we have found a small ray of light.
How bad did it get? I have experienced some hesitation with peeing and a slightly slower stream but the effects seem to not be as bad today. I feel like I am getting used to the side effects. Also what did you mean by protastic bladder? Did you mean Prosthetic ?

 

[Zimichael]

OK!!!...We are nearing the 50 pages mark on this thread. God help us if we suddenly have 10 new people on Potiga/Trobalt all reporting in on here! ( Hi Moderators! No doubt you wonderful people will figure out what to do with it).
Anyway, some great ideas here, and the "Gimme The Drugs Or I'm Gonna Die!" laws/actions, actually sound pretty darn creative in terms of trying for earlier access to AUT00063..."Ask nicely but carry a big stick!", or maybe: "Make him an offer he can't refuse" would be more appropriate?!

OK back to RETIGABINE...and the earlier post that had me puzzling, c/o @william2 and those two articles listed:
~ http://www.ncbi.nlm.nih.gov/pubmed/15814569
~ http://medind.nic.in/ibi/t05/i5/ibit05i5p340.pdf (retigabine: a novel anticonvulsant)
You may recall I was worried about the contradictory aspects of GABA and thus the relationship to Benzo's (one of our most favoured & most hated meds), which many of us take.
Well after some tortuous back-tracking my hunch that the articles were dated appears to be correct. The first is THICK STEW to read. Way beyond my tolerance (maybe gets your groovies going @jazz and you can handle it, but I can't) though I also don't think necessary for those of us drilling into details.

Again, from that definitive Australian source material there was this on the GABA relationship...

Non KCNQ effects of retigabine
The anticonvulsant activity of retigabine may also involve potentiation of GABAergic inhibitory neurotransmission, although results have been somewhat contradictory. Retigabine (1-10 μM) enhanced GABA mediated currents in primary cortical neurones from fetal rats in vitro, and (at 10-50 μM) dose dependently enhanced monosynaptically evoked inhibitory currents mediated by GABAA activation. However, sponsor studies indicated that retigabine does not appear to interact directly with the GABAA, GABAB, or benzodiazepine receptor binding sites, and did not show agonist, antagonist, or modulatory activity on GABAA α3β3γ2 subunits expressed in HEK293 cells. Retigabine may instead interact with the steroid binding site, since, in the former study, the potentiating effects of GABAergic currents by retigabine and 5-alpha-dihydroprogesterone were not additive. In addition, an allosteric interaction between retigabine and GABA at the picrotoxin site has been demonstrated.

...So I think we can put that concern to rest for now.

Oh and while we are here, as I had gone back to look at stuff, I found it 'refreshing' to remind myself what the hell I was doing - in more descriptive and graphic terms. I figured you too might like these "reminders" of stuff that had not become litter along the side of the road...

There's out little K+ Potassium Gates!!! (Ha, ha...But now I have lost track so far back I can't remember if in T. they got stuck closed, or open?!)...

...Ahhh, yes, c/o that other ancient post and then resurrected via @111 ...

KCNQ channels are active at the normal cell resting membrane potential (RMP) and contribute a continual hyperpolarizing influence that stabilizes cellular excitability. The Mechanism of action of Retagabine increases the number of KCNQ channels that are open at rest and also primes the cell to retort with a larger, more rapid, and more prolonged response to membrane depolarization or increased neuronal excitability. In this way, Retagabine amplifies this natural inhibitory force in the brain, acting like a brake to prevent the high levels of neuronal action potential burst firing that may accompany sustained depolarizations associated with the initiation and propagation of seizures.

...Then in final de-littering contrition, that old "Synapses for Dummies" link is a great refresher. In case you are hot and bothered and need that waterfall of knowledge to assuage your aching head, here it is again:
http://www.dummies.com/how-to/content/understanding-the-transmission-of-nerve-impulses.html

OK, I'm heading for my deck and the garden hose with a watering rose on the end. Makes a good 'waterfall'!

Best, Zimichael

 

[111]

let's not be over-suspicious of the Chinese, they make almost everything we have.
If its a real lab they can do the job no problem,and they will be looking to please because
they want repeat business.
a shame you cant get it from your doc, as its also been indicated for anxiety!
i might be wrong but i think i saw that somewhere.

I have got in touch with them actually, asking how much to send me the stuff, just to see what their response is, lets see what they say ?

 

[dan]

I have got in touch with them actually, asking how much to send me the stuff, just to see what their response is, lets see what they say ?

If they agree, let's group order 10 Kg of pure Retigabine.

 

[111]

If they agree, let's group order 10 Kg of pure Retigabine.

10kg of this stuff would be worth more than 10kg of meth at this rate.

 

[SteveToHeal]

Okay MPT, I think this would really be worth pursuing.
I am certainly grateful you authored this thread because alot of good
has come out of it to help others. I too will be asking for retigabine in the
meantime. With regard to Charles large, what's the best way of contacting
him? I'll keep you all well informed as to communications.

It's an interesting post. Don't get me wrong, i'd love to get my hands on those little pills by "order of the court" just as much as the next guy. The problem is T is not seen as a life threatening disease or even a disability (which, btw, I find ridiculous ... from my own wretched experience of having T and after reading things like Gaby Olthuis,etc). It is only classified as a symptom of something else, in my case high frequency hearing loss. Courts can argue that HFHL can be sorted out with a hearing aid. The fact that a hearing aid does sweet f-all for T, the powers that be, can conveniently overlook.

The Compassionate Use Exemption is definitely a step in the right direction. This clause, however, would be a grey area for T: "Nationwide, people with a terminal illness for which available treatments aren't working..." You'd have to prove that you'd been to 27 psychaitrists, 9 psychologists, 15 TMJ specialists, 20 hypnotherapists, a gazillion ENT's, tried TRT, CBT and taken every supplement under the sun, before they'd exempt you. My numbers exaggerated for effect but you get the picture. It's not a case of quoting the Compassionate Use Exemption and they'll hand over the pills.

That is why I think sending demands like this to Charles Large will only serve as an irritation. Bottom line, he won't take it seriously unless instructed by the courts. Only when T is recognized as a disability will it get more airplay and credibility amongst professionals, courts, employers and the greater medical fraternity. i.e. outside of those working on cures. For that reason I would first build a case for T and The Compassionate Use Exemption before firing off any comms to Dr Large. I doubt he feels compassionate enough to hand any more of those little pills than he has to. His imminent empire awaits. Juts my 2 cents.

 

[Rube]

does anyone know if retigabine or eventually aut00063 will need to be taken for a certain time or forever to treat the T?

 

[SteveToHeal]

does anyone know if retigabine or eventually aut00063 will need to be taken for a certain time or forever to treat the T?

Nobody knows yet. The hypothesis from benyru was that 63 would target the necessary K channels and start working on the T at that level. Chronic (and i assume post acute too) T sufferers would have to continue to take it for a while to affect the brain neuro-plasticity.

 

[Rube]

Nobody knows yet. The hypothesis from benyru was that 63 would target the necessary K channels and start working on the T at that level. Chronic (and i assume post acute too) T sufferers would have to continue to take it for a while to affect the brain neuro-plasticity.

I hope it works it's magic and won't need to be taken for rest of life. But then again, if it works and doesn't have a laundry list of side effects I would imagine most of us wouldn't care.

 

[Viking]

First I want to say I'm sorry you had to stop. Hold strong for we have found a small ray of light.
How bad did it get? I have experienced some hesitation with peeing and a slightly slower stream but the effects seem to not be as bad today. I feel like I am getting used to the side effects. Also what did you mean by protastic bladder? Did you mean Prosthetic ?

The pain in urinating began on Saturday. Not a problem any of the prostate or bladder. The drug (in my unfortunate case) hits at the central level. The neurologist suggested to suspend. Today the pain has decreased by 80% but unfortunately tinnitus are returning. : ((((((((

 

[Christian_B]

The pain in urinating began on Saturday. Not a problem any of the prostate or bladder. The drug (in my unfortunate case) hits at the central level. The neurologist suggested to suspend. Today the pain has decreased by 80% but unfortunately tinnitus are returning. : ((((((((

Im really sad to hear this friend! but was your T. gone? or just very low?

 

[Viking]

Im really sad to hear this friend! but was your T. gone? or just very low?

Is slowly returning...........

 

[Christian_B]

Is slowly returning...........

Yeah but, what im asking is.. when you were ON retigabine, was your T. gone or just very low?

 

[Viking]

Yeah but, what im askins is.. when you were ON retigabine, was your T. gone or just very low?

Gone in the right ear or take under control the spyke,and left was quiet

 

[william2]

That is why I think sending demands like this to Charles Large will only serve as an irritation. Bottom line, he won't take it seriously unless instructed by the courts. Only when T is recognized as a disability will it get more airplay and credibility amongst professionals, courts, employers and the greater medical fraternity. i.e. outside of those working on cures. For that reason I would first build a case for T and The Compassionate Use Exemption before firing off any comms to Dr Large. I doubt he feels compassionate enough to hand any more of those little pills than he has to. His imminent empire awaits. Juts my 2 cents.

Thanks for the cautionary advice Steve.
Let's keep this clear and simple.
No-one is making demands. And nothing needs proving.
My partner is a UK resident, legally tested & recognized as debilitated by tinnitus.
A govt scheme now allows companies to make available medicine which is not yet licensed.
The company simply has to submit uncomplicated paperwork.
I shall write to Dr.Large, explaining this scenario,
and will suggest to him that this presents a wonderful opportunity to help truly suffering people.
If Dr. large helps us, the medicine will be available.
If Dr.Large is uncertain, then we shall organize the world's biggest online petition
which will collect thousands of signatures and all the associated media coverage
for our new Tinnitus Early Access Medicine (TEAM) action group.
So let's take it by baby-steps.
Dr.Large may actually be a decent fellow who wants to help his fellow man
and he may also want to bask in the glow of positive publicity.

Many of us will be happy to take the same' risk' as other phase 2 participants.
For sure, it will be safer than Retigabine.

 

[rtwombly]

@william2 Just please bear in mind that Dr. Large and his associates have not had the opportunity to test AUT00063 on an extensive list of tinnitus sufferers. They've completed Phase I of testing, which officially includes NO efficacy testing. That means they've officially tested the drug on nobody with tinnitus. We have only speculation to say otherwise.

So while I think it's fine to share your research with Dr. Large, don't make any judgements as to his altruism if he doesn't respond or outright turns you down. Until the Phase II study starts in October, he simply won't have enough data to go on. In January or March of next year, maybe he will have enough. But right now all he has is a theory that is born out in animal models and a small safety trial. You can't expect him to base his reputation as a caregiver and his credentials as a scientist on such inconclusive evidence.

 

[rtwombly]

Dear friends, my love affair with Trobalt is terminated because of side effects on micturition. Over the past three days has been painful and the symptoms did not go rather worse. I have no problem it will prostatic bladder. The urologist and neurologist say that I am sensitive to retigabine at central (CNS). With great regret I have to stop. On the other hand, I discovered that maybe the cause of my worsening during the past year in conjunction with the use of hearing aids could be procured me a TTTS.

Sorry to hear you're having so much trouble, Ivan. Do you mind telling us what TTTS is? Google says "Twin-to-Twin Transfer", but I do not think that is what you mean.

 

[lapidus]

Sorry to hear you're having so much trouble, Ivan. Do you mind telling us what TTTS is? Google says "Twin-to-Twin Transfer", but I do not think that is what you mean.

Tonic Tensor Tympani Syndrome

 

[william2]

@william2 Just please bear in mind that Dr. Large and his associates have not had the opportunity to test AUT00063 on an extensive list of tinnitus sufferers. They've completed Phase I of testing, which officially includes NO efficacy testing. That means they've officially tested the drug on nobody with tinnitus. We have only speculation to say otherwise.

So while I think it's fine to share your research with Dr. Large, don't make any judgements as to his altruism if he doesn't respond or outright turns you down. Until the Phase II study starts in October, he simply won't have enough data to go on. In January or March of next year, maybe he will have enough. But right now all he has is a theory that is born out in animal models and a small safety trial. You can't expect him to base his reputation as a caregiver and his credentials as a scientist on such inconclusive evidence.

1. It doesn't matter if there has not yet been extensive human testing. No data is required.
Under the govt scheme, we simply seek to take the same 'risk' as other phase2 participants.

2. Altruism means selfless concern for the well-being of others. I sincerely hope that Dr.large will help us.
The whole point of this scheme is helping the desperate with unproven, unlicensed medicines.

 

[Freddie]

Hello i have been on this thread a couple of times and something occurred to me that I hope one of you in the know might help with.?

My T was not caused i don't think by any acoustic trauma, Drugs or similar but by a stressful period I was going through at the time and that along with a small high frequency hearing loss ( that I never knew I had ) is most likely how i got my T .My question is that because of this factor on how I got it does anyone think that retigabine or even the AUT if ever available would help me , hopefully it might all though I don't seem to have all the classic reasons on how it started ? can they both work on tinnitus no matter what the reason of the cause ?

 

[rtwombly]

1. It doesn't matter if there has not yet been extensive human testing. No data is required.
Under the govt scheme, we simply seek to take the same 'risk' as other phase2 participants.

2. Altruism means selfless concern for the well-being of others. I sincerely hope that Dr.large will help us.
The whole point of this scheme is helping the desperate with unproven, unlicensed medicines.

"unproven" surely means to the medical community at large. This medicine is to date unproven to everybody, including its creators.

I think it's a fine thing you're doing, just please don't take radical steps before the doctors have had a chance to prove to themselves the efficacy of the drug. You should assume at this point that literally nobody has benefited from AUT00063. We really can't speed anything up before the Phase II trial even begins.

I'll excuse myself from the discussion now.

@Freddie I'm in the same boat, except I have low-frequency hearing loss. From my understanding of the theory, it shouldn't matter. Our brains are making phantom noises, and these drugs take phantom noises away. The only problem may be if you have a condition that re-injures your auditory system. But even then, so long as you're on an effective dose, the noise should be suppressed.

@lapidus Thanks! I'd forgotten about that.