Retigabine (Trobalt, Potiga) — General Discussion

[Juan Carlos]

Lot of thanks for your reports @Zimichael we all appreciate what you are doing. Its hard to understand why this drug increases H in you, maybe is part of the proecess. I belive in your case will take much more time to relief or cure because you had T for so long time, please if you feel really serious secondary effects slowly stop it, general health is the most important, I think our big hope is more in Autifonys than Retigabine
Im afraid that in success cases like @Mpt the T can come back after taping off, like Ch78 experiencied. Maybe have to keep on it some time to get K channels stable, who knows, time and users experiencies will give the answer
I hope to see reports from more people who is tapering off the drug with success

 

[111]

Interesting article about retigabine and tmj issues for those interested

Activation of voltage-gated KCNQ/Kv7 channels by anticonvulsant retigabine attenuates mechanical allodynia of inflammatory temporomandibular joint in rats

http://www.molecularpain.com/content/6/1/49

 

[theekarwash]

I asked my doctor for Trobalt today. He wasn't ready to prescribe me it since there has been no clinical proof it has worked in humans and he believed it would make matters worse for me. I told him I was aware of side effects and was willing to try it but he just didn't want to prescribe it to me. He asked me if I'd try something that has been seen to help tinnitus first which I said okay to, making sure that I put emphasis on first. He gave me SERC instead telling me it should help. I'm not too sure but I'll give it a try and if it doesn't work within 3/4 weeks I'll be going back with more paperwork and facts to try to get on retigabine.

 

[undecided]

I just got my hands on 2 boxes of Trobalt, each containing 21 pills @ 100mg.
Don't even ask how I got them, a friend of a friend managed to get a prescription in England, bought it and sent it to me. It's been an ongoing process since mid-August.

So I have 42 100mg pills. That's not a lot. I was thinking:
14 days taking 50mg every 8 hours.
7 days taking 100mg every 8 hours.
21 days of treatment at a low dose.

Do you think it's worth it? Opinions are welcome.

@theekarwash Serc is worth a try but it's a very, very long shot. Relatively harmless though.
How much did he prescribe? 16x16x8mg per day?

 

[theekarwash]

@undecided 16mg 3x a day. I'll give it a go, he gave me a 12 week prescription but I don't want to try more than a month. He told me if it's going to help it should help within a week.

 

[Zimichael]

I just got my hands on 2 boxes of Trobalt, each containing 21 pills @ 100mg.
Don't even ask how I got them, a friend of a friend managed to get a prescription in England, bought it and sent it to me. It's been an ongoing process since mid-August.

So I have 42 100mg pills. That's not a lot. I was thinking:
14 days taking 50mg every 8 hours.
7 days taking 100mg every 8 hours.
21 days of treatment at a low dose.

Do you think it's worth it? Opinions are welcome.

@theekarwash Serc is worth a try but it's a very, very long shot. Relatively harmless though.
How much did he prescribe? 16x16x8mg per day?

Undecided...You have had T for just a short time (yeah I know it may not feel like it!) so there is more possibility that a quick trial may do something for you. However, if you don't have any side effects that are too bad (I did not) at the 50 mg TID (3 x a day), you might be able to speed up that initial increase.

However, I have a problem with your math...(presuming you are cutting the 100 mg into halves for the 50 mg).

14 days at 50 mg TID = (14 x 0.5 x 3) = 21 pills
7 days at 100 mg TID = (7 x 1 x 3) = 21 pills
21 days at treatment with a lower dose.....
Uhhh, you already hit your 42 x 100 mg of pills!? So unless you get more, your taper off is 'not going to happen'.

Best, Zimichael

 

[Zimichael]

Wow, @locoyeti ref. this… http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03365.x/full

Great find on KCNQ's (Retigabine) action albeit for epilepsy study. All kinds of stuff in there, even GABA aspects, etc., etc. The summaries of action are the clearest I have seen so far I think!

For those following, or trying to follow the "mechanics" of this neuronal stuff, here is a key take from this article on the Kv7 channels that Retigabine acts on, and some hopefully accurate 'translation notes' of my own afterwards…

At the receptor, cellular and network level, the importance of KCNQ channels as key regulators of neuronal excitability is clear: they are able to work as a powerful inhibitory force in the brain by providing a continual hyperpolarizing influence to maintain or control the cell RMP and reduce subthreshold excitability. This key function provides a clear underlying explanation for the MoA of RTG/EZG that stabilizes KCNQ2–5 channels in the open position, increasing the recruitment of such channels at rest, and particularly following depolarization, that act to exert a hyperpolarizing effect on the cell. RTG/EZG therefore effectively primes the cell to resist firing bursts of action potentials that occur during the sustained depolarizations associated with the initiation and generalization of seizures.

OK, my simplified translation:

After action potential (= let's do this!) is reached a neuron 'fires' and the subsequent electrical charge inside 'hyperpolarizes' = kinda goes too far. This puts a temporary damper on the speed with which the cell can return to the normal resting condition and fire again. Sort of like overshooting a turn in your car and you have do a U-turn, go back a bit, then get going again…in nano-seconds of course! The longer this 'hyperpolarization' lasts the harder it is for the cell to get back to normal (RMP = resting membrane potential) and fire again. Obviously, this then reduces "excitability" and the neuron's ability to just fire away like a machine gun. The thing got a bit jammed, so to speak.

The working hypothesis for this is that the drug action on KCNQ2-7 (Kv7.2-7) gates/channels does these things:

1. Stabilizes these channels in the open position = allowing more K+ ions to flow through the cell membrane and do their thing.

2. Increase the recruitment of such channels at rest = gets more of these particular doors/gates/channels ready to open when the cell is at rest (= 'normally polarized'). So basically telling these gate to stop being lazy and get the hell ready to "go"!

3. …and particularly following depolarization = re that above, making sure these gates don't just get a grip and open fast but also don't just goof off after doing so and get immediately lazy again. They have orders to stay active and open to allow for that hyperpolarization to take place through increased K+ flow and delay the "repolarization" of the cell back to normal resting state (which would then allow the ability to re-fire, etc., etc.).

4. RTG/EZG (Retigabine/Ezogabine = Trobalt/Potiga) therefore effectively primes the cell to resist firing bursts of action potentials that occur during the sustained depolarizations…So, the drug basically puts sand in the gears that allow the neuronal cell to just keep firing away like that machine gun = those "sustained depolarizations"! (Depolarization is the term for where the change in cell charge is enough to, generally speaking, trigger it to fire).

Incidentally, MoA = mechanism of action.

I hope this helps. And I hope I got it right!

Best, Zimichael

 

[undecided]

@Zimichael yeah, I meant 21 days total, no taper.
I think I might hold off starting Trobalt for a while, until I manage to get more of it.
And it's a real pain in the @ss trying to import it from the UK. It's dirt cheap though, compared to US prices.

 

[Hudson]

Hey, I thought I would stop in to remind everyone to stay on track with this thread regarding the Retigabine. I know we're all excited about Autifony, but I think there's a lot that can be learned from Retigabine here and the user experiences. I'm SUPPOSED to be getting a call from the Neurologist this week letting me know that I've been officially referred for an appointment, but it seems my provider is taking her time. That being said...

@Mpt
@Christian78
@Viking
@jamesdk
@Lep
@linearb
@Johno
@SoulStation
@Bogdan
@Hengist
@Zimichael

If you guys could all updated progress forms, etc. as often as you can (once I start retigabine, if they doc will let me, lol... I plan on doing it every couple of days) it would be a huge help and provide a wealth of information. The more we know about the experience of a person as they take retigabine, the better we'll be able to provide information to newbies. I know it's a lot, but what we're really doing here is leveraging the power of the internet to aggregate data about an off label use of a medication in as "scientific" of a way as we possibly can. If no one is running clinical trials for retigabine regarding tinnitus, hell, we can at least aggregate our data on our own!

Thanks,

Hudson

Can we get some more updates from you all? I'm going to be having my appointment with the neurologist soon, and I'd like to go in with some ammunition, as far as user experiences go.

 

[Johno]

Can we get some more updates from you all? I'm going to be having my appointment with the neurologist soon, and I'd like to go in with some ammunition, as far as user experiences go.

I change dosing from 3x100 to 2x150 and 100(late evening). But only from today and i have to find another source of trobalt, because doc wouldnt prescribe me it more.

But month on 3x100mg dose - nothing gorgeous happened, except:

Central T, wich is a lot of quieter and sometimes it disappears completely, hissing is quieter and i have no TST spikes, or very short (1-5sec) and quiet. Multitonal T in both ears without changes. Sometimes right tones are quieter (but this may be placebo effect...)

Will see what happens on 400mg. Yes, I am slow, but I am still in Trobaltsave mode, unless i find new source of it.

 

[Rube]

Has anyone heard from @Mpt as far as how he is doing with tapering off the retigabine? Very interested to hear how he is. In my mind I picture him out enjoying life
I hope he is!!

 

[Zimichael]

Hey, just for the record...I too am in "Trobalt-save-mode". When I did a thorough pill count and added in the 2 week delay to get a new batch from CanadaPharmacy, I had to drop from 450 mg total/day, to 300 mg total/day, as of yesterday. I will be sitting here for minimum 10 more days I figure. Once new batch arrives will ramp back up to 450 mg, then 600 mg total per day...then see from there. Irrespective, it will be a short trial unless I get staggering results and decide to dig into savings.
As you may recall, so far, have had no such 'gift' from the Retig. gods, (well, more the opposite with the > hyperacusis). I also got pretty peeved at making typos about every third keystroke! Typing is a bit better today, but head feels reeeeeeeeally spacey, so my 'condition' may always dictate a change of strategy.
Sunday I was considering calling it quits and tapering off soon, as other trialees all had some version of "effects" pretty quick and at lower doses than 450 mg/day. However, after much helpful discussion and thought I decided to continue and see if "something" might happen with another go around. Hopefully this interim sitting on the sidelines is not just a royal waste of time and pills, but who knows?! Maybe the Retig troops are squirting WD-40 on the hinges of those "K gates" so that when they get reinforcements later they will bust the doors down easier?!...Gawd knows!

Will do a full "Users Progress Report" on weekend as before.

Best, Zimichael

 

[theekarwash]

Has anyone heard from @Mpt as far as how he is doing with tapering off the retigabine? Very interested to hear how he is. In my mind I picture him out enjoying life
I hope he is!!

I think MPT said he would be away for 3 weeks for a hiking trip if I remember correctly. I'm pretty sure his T is still pretty much gone however.

 

[Rube]

I think MPT said he would be away for 3 weeks for a hiking trip if I remember correctly. I'm pretty sure his T is still pretty much gone however.

We all hope it stays gone when he tapers off! Cause if it does then I'm giving it a shot also!!

 

[Jay M]

He made a comment on another thread the other day. ???

 

[rtwombly]

He made a comment on another thread the other day. ???

That he did, first since 9/17.

Hey @Mpt! You out there, bud?

 

[Lisa88]

Interesting to read the user information thread of Retigabine. Seems central t has been lowered in a few patients, even chronic. Nice!

 

[SoulStation]

Today i am feeling a little more active and my side effects are at a minimum. On the other hand i feel like my T is a bit more active then it has been. Talked to my dr (gp) today and he said he was hesitant to raise me up on dosage over 300 mg cause he doesnt know the medication. I have been wearing my musicians ear plugs a lot lately and im starting to think its making my t react more. I am also constantly monitoring it and seeking silent areas to see if its working. Ugh. T sucks. Any ideas on my next course of action to get a higher dosage? I can only think to see a good neurologist but i am thinking they wont approve for sure. Thanks and happy Wednesday

 

[Jay M]

Today i am feeling a little more active and my side effects are at a minimum. On the other hand i feel like my T is a bit more active then it has been. Talked to my dr (gp) today and he said he was hesitant to raise me up on dosage over 300 mg cause he doesnt know the medication. I have been wearing my musicians ear plugs a lot lately and im starting to think its making my t react more. I am also constantly monitoring it and seeking silent areas to see if its working. Ugh. T sucks. Any ideas on my next course of action to get a higher dosage? I can only think to see a good neurologist but i am thinking they wont approve for sure. Thanks and happy Wednesday

Yes your plugs are facilitating the increase. You already know this wo asking. Stop monitoring your T bc youre keeping your mind on it.

 

[Telis]

We all hope it stays gone when he tapers off! Cause if it does then I'm giving it a shot also!!

I would be more convinced this drug works if MPTs T came back. For all we know, he just got better on his own, no affect from retigabine. However, if his T did reappear, we could be pretty damn sure this treatment had a positive affect.

 

[Telis]

Yes your plugs are facilitating the increase. You already know this wo asking. Stop monitoring your T bc youre keeping your mind on it.

I think he is monitoring his T to see if the drug is affective.

 

[SoulStation]

Yes your plugs are facilitating the increase. You already know this wo asking. Stop monitoring your T bc youre keeping your mind on it.

Yes Jay I'm totally awear that earplugs increase perception as I've been wearing them for gigs for years but what I'm saying is whether or not wearing them could actually cause T to become over reactive. I don't pay mind to the increase in perception.
Forgive if I misunderstood you. Is that what you meant?

 

[rtwombly]

Talked to my dr (gp) today and he said he was hesitant to raise me up on dosage over 300 mg cause he doesnt know the medication.

Why do doctors not believe in the internet? If I don't know something, I go online and read about it. Sure your doctor would like to have personal experience in the drug he's giving you, but how can he ever get personal experience in a drug he's afraid to prescribe?

Sorry, that's not helpful, just seems ridiculous.

 

[Jay M]

Yes Jay I'm totally awear that earplugs increase perception as I've been wearing them for gigs for years but what I'm saying is whether or not wearing them could actually cause T to become over reactive. I don't pay mind to the increase in perception.
Forgive if I misunderstood you. Is that what you meant?

IMO plugs cause ears to become more reactive. The brain doesnt know your plugging your ears but instead justvturns up the gain. Do it over and over again and it starts to become more sensative to volume changes.

 

[Jay M]

Why do doctors not believe in the internet? If I don't know something, I go online and read about it. Sure your doctor would like to have personal experience in the drug he's giving you, but how can he ever get personal experience in a drug he's afraid to prescribe?

Sorry, that's not helpful, just seems ridiculous.

Bc you cant earn degrees in forum research.

 

[Lep]

Ok guys, I want to update about my retigabine story.As you know,I stopped the medication after a few days because I had vision problems with a low dose (200 mg). After 15 days being "meds free" my tinnitus and migraine worsened...I restarted desperately the therapy 45 days ago.Actually I'm on 400 mg/day (100+200+100),no side effects (only a bit of tiredness in the afternoon)...the last worsening disappeared, no effects on "old" tinnitus.I tried 500 mg for one day (200+200+100) but I was like a dead,I can't even drive my car.
Regards

 

[SoulStation]

Hey guys skipped a dose by mistake today... Took 100 at 9:40 am when I got up went to work to teach and forgot to bring my other two doses for 100 mg . Got home from work at 9:30 pm and took 150 mg so I could make up for missed dose. But I'd technically still have 50 mg left to take. Should I take it? Or just stay on course?

 

[Zimichael]

Hey @Lep ...great to hear from you again! Ummm...not so good, & good, I guess!

Anyway, I just logged in again to post an ALERT!!! CanadaPharmacy's UK supplier is out of stock!

So this throws a huge wrench into the works, and one to be aware of if considering ordering online. They phoned me this evening to let me know, and are not sure when it will be in stock again. They recommend ordering at least 4 weeks in advance of requiring your meds. Well, just tippy-do-dah...what now???!!! So much for The Plan.

Actually as it happens, I was going to re-evaluate tomorrow morning anyway, as the last three days since I started to taper to 100 mg x 3/day, I have been waking up really spacey and "head-fogged". Not particularly nice, as it is lasting most of the day. I am going to take the full 300 mg today (so tonight's dose same) and if I woke up in the morning with the same thing [my "3 out of 3" mantra] then I was going to consider tapering off, and saving the remaining pills for when the new box of Trobalt arrived, instead of just using my current supply up in a holding pattern.. That period was meant to last no more than 2 weeks, but seeing as they have not even shipped them, that is not going to work any more anyhow!...Another "Boom!" in the Retigabine roundabout.
Man, wouldn't it be nice to just have access to a direct supply of AUT00063.

Later. Zimichael

 

[SoulStation]

IMO plugs cause ears to become more reactive. The brain doesnt know your plugging your ears but instead justvturns up the gain. Do it over and over again and it starts to become more sensative to volume changes.

I see your point . Thanks Jay I really appreciate the feed back

 

[SoulStation]

Hey @Lep ...great to hear from you again! Ummm...not so good, & good, I guess!

Anyway, I just logged in again to post an ALERT!!! CanadaPharmacy's UK supplier is out of stock!

So this throws a huge wrench into the works, and one to be aware of if considering ordering online. They phoned me this evening to let me know, and are not sure when it will be in stock again. They recommend ordering at least 4 weeks in advance of requiring your meds. Well, just tippy-do-dah...what now???!!! So much for The Plan.

Actually as it happens, I was going to re-evaluate tomorrow morning anyway, as the last three days since I started to taper to 100 mg x 3/day, I have been waking up really spacey and "head-fogged". Not particularly nice, as it is lasting most of the day. I am going to take the full 300 mg today (so tonight's dose same) and if I woke up in the morning with the same thing [my "3 out of 3" mantra] then I was going to consider tapering off, and saving the remaining pills for when the new box of Trobalt arrived, instead of just using my current supply up in a holding pattern.. That period was meant to last no more than 2 weeks, but seeing as they have not even shipped them, that is not going to work any more anyhow!...Another "Boom!" in the Retigabine roundabout.
Man, wouldn't it be nice to just have access to a direct supply of AUT00063.

Later. Zimichael

are there any other online Canadian pharmacies?
Jeez this is gonna suck just got my GP to send me a rx paper script to fax to them.