Retigabine (Trobalt, Potiga) — General Discussion

[1MW]

Exist an online pharmacy to get RTG from latvia / chech / poland / slovenia ?
It's very hard to get it locally in logic time frame and good price i pay from local pharmacies to import it from 3rd countries 180 euros for 84pills 100mg and takes 1 month to import it so i want to buy directly.
Any good online source to get it without prescriptions or with electronic prescription that i will send with mail ?

 

[Danny Boy]

well, let's all hope we hear something good come out of the autifony trials.
agreed, dannyboy is yet to come off RTG but at least he's been able toit
report undeniably good results and from quite early on.
So it would be heartwarming for someone on autifony trials
to tell us it's not just good news for rats.

If I manage to get a few more months supply then you'll know that result for the time being it's low and it's my 6th month in two days. I really hope I come back with positive results, as I want you all to have hope and we can the narrow down when trobalt need to be taken. Just might have supply issues which may ruin the experiment.

 

[sanjay doodani]

Mine is also 6 months . Trobalt is easily available here in India. Did you kind of cure it with this
When you get up in morning do you have it. Do you have silent days

 

[Mark662]

@sanjay doodani I would be interested in a reliable, online, no prescription source from India to send to UK. Prices are very high. There must be cheaper generics available from India.

 

[sanjay doodani]

I will find out since drug prices are controlled in india need to check the possibility

 

[Danny Boy]

@sanjay doodani I would be interested in a reliable, online, no prescription source from India to send to UK. Prices are very high. There must be cheaper generics available from India.

Me too! Can anyone find a website?

 

[rtwombly]

I never had tremor in my hands before taking RTG.
Now when RTG wears off i get a strange tremor in my hands like the start of seizure.
I can not synchronize hand movement.Maybe RTG lowers seizure thresholds and iam getting "mini seizure".

1MW, I had that briefly as a side effect. It went away with time and "familiarity" with the drug, as nearly all symptoms I developed at 300mg TID have done.

Folks, I'm still playing hokey from these threads compared to my previous post-rate, but I stopped by to say that after my bad experience of the 16th I've had no further trouble at my regular dose. Having experienced symptoms when I first went on 300mg that relaxed in time, I'm convinced now that the problem came from going up in dose too precipitously. I had only done 375mg a few times before jumping to 450, partly because I was unfomfortable cutting the pills into 1/4ths.

If I ever do try to go up in dose again, I mean to do so by asking my doctor for a 50mg prescription so I can take it to 350mg for a good week. I'll also have to plan when to do this, as it made work impossible. It did help me bond with my workmates, however! I've already had occasion to drop what I was doing and help the lady who cared for me in my distress, and I've expressed my appreciation to my boss for taking me to the ER, not freaking out, etc.

Let me close by saying I'm a big fan of Potiga. It doesn't cure me, but it gives me a much better experience with my tinnitus. For all it's negative side effects, it compensates by revving up the imaginative part of my brain. That's my favorite part, much missed after the stress of the past few years (and last year in particular) beat it into quiescence. I'm quite confidence tinnitus is in my brain, and treating it with brain drugs is the right way to squash it. As soon as we get the safer versions of RET on the market - from either of the two sources with a ready-to-trial drug - I look forward to taking a whopping big dose of the stuff, bringing up Dark Side of the Moon on whatever streaming service has it...and watching it on mute.

 

[NGC891]

@sanjay doodani I would be interested in a reliable, online, no prescription source from India to send to UK. Prices are very high. There must be cheaper generics available from India.

Be carrefull with cheaper generics from India...
http://www.madinamerica.com/2015/01...lls-suspending-four-common-psychiatric-drugs/
http://www.madinamerica.com/2015/01...lls-suspending-four-common-psychiatric-drugs/

 

[theekarwash]

Haven't updated in a while. Just letting everyone know I'm not taking RTG anymore. T is at a 3, baseline.

 

[Mo_Mo]

T is at a 3, baseline.

What was the baseline before starting rtg

 

[dan]

Mine is also 6 months . Trobalt is easily available here in India. Did you kind of cure it with this
When you get up in morning do you have it. Do you have silent days

Is it sold at most Indian pharmacies? What is the price?

 

[theekarwash]

What was the baseline before starting rtg

3/4 depending on the day. It went down to 2 on RTG 50mg once a day. I'm going to get some more off my doctor as he's willing to prescribe me it but I don't know what dosage he's going to be comfortable giving me yet.

 

[1MW]

With RTG i get better sleep i get 300mg before sleep & little benzo dose. With RTG i lowered benzos.
Before RTG i had total silent times after RTG i have not total silence.RTG & benzo combination lowers
T have synergistic action both act on GABA.
There is a improvement not silence 1hour after taking that lasts 40 minutes and after that bad worsening.
I will continue to take it for support to stop benzos but i think it does do nothing for T at least in dose iam taking it.After some time usage of 300mg loose its action... so side effects no serious effect on T.
@Danny Boy in what dose you had reduction to 1/10 ? With 300mg have you any improvement ? Have you tried corticosteroids before and failed ?

 

[SteveToHeal]

Hi guys,

I really need to ask for some help here. I'm in the UK at the moment. I came here from South Africa for the AM101 trial but it has not worked. I can't get on Autifony because of hearing loss criteria. The only option left is Retigabine. It seems to be helping a lot of people, even if temporarily, helps habituation, benzo-mix, hell who knows, i'm willing to give it a go. Problem is supply.

No GP or ENT here in the UK is willing to prescribe RTG for T. The neurologist I contacted wasn't willing to prescribe it outright for t either. The patient he prescribed it to had accompanying "visual snow". I think we've seen this theme repeated throughout the thread. Supply issues!! @Danny Boy being one of them having to procure RTG via other means. I have a doctor in South Africa that is willing to write me a prescription. I phoned phoned pharmacy2u.co.uk but they only accept prescriptions from EU/UK.

Does anyone know where I can order RTG online that will deliver to South Africa? The only other problem is RTG is not licensed in SA. So i'm not sure if even it's legal for any company to post to South Africa. Anyone have any ideas to get it with a valid SA prescription?

My dr is SA said that he can ask the GSK rep to send him some for "clinical trial" use but he says it's a long shot and he's not hopeful.

Otherwise, it's the expensive chinese powder route. Thanks all if anyone has any ideas.

Thanks,
Steve

 

[Markku]

The neurologist I contacted wasn't willing to prescribe it outright for t either.

Was it this neurologist you tried contacting (I assume so since it's your post...)?

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-128#post-89536

 

[SteveToHeal]

Was it this neurologist you tried contacting (I assume so since it's your post...)?

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-128#post-89536

Yes - that's the guy. His response:

Dear Steve

Thanks for your enquiry.

I am not an expert on tinnitus, though as the person who mentioned my name on the blog has indicated, I did look into the literature quite carefully before prescribing this unlicensed medication. In that patient's case I agreed to prescribe it because I believe it may have a positive effect on other symptoms (which they also mention) for which they were referred to me.

At present, therefore, I do not think it is appropriate to see people solely for the purpose of prescribing for tinnitus. I would like to gather some experience in my patients with visual snow (many of whom have tinnitus as well) before doing so.

Once I have done so, then I might be in a better position to consider seeing people solely with tinnitus. It is of course a condition not generally managed by neurologists (though perhaps it should be).

I would be very happy to keep you updated. Please feel free to e-mail me at this address if you wish to enquire again in due course.

With best wishes

Dr Mark Weatherall

 

[amandine]

@SteveToHeal

hi how are you?
I was wondering - how can ur doc give u a prescription in south africa for a drug not allowed in south africa? doesnt make sense.
anyhow cant you order from a canadian pharmacy and have it sent to england while you are there in UK.
Sorry to hear that you could not get on the trial autifony.
Sorry also to hear that the am 101 did not work, Did it not work at all for you? Having been in touch with some people who took part, mostly people are saying that they got some good effect from it.
Just wondered if the canadian on line pharmacy will help you to get hold of this drug.
Just a cautionary word Steve, that it does not appear to be a cure at all this trobalt but a temporary help that then seems to stop working....but who knows? I certainly dont but only say this from reading and speaking with other people who have taken it or are taking it.
be well

 

[dan]

@SteveToHeal

http://www.canadapharmacyonline.com/DrugInfo.aspx?name=Potiga6804

These guys will send anywhere in the world if you fax them your prescription!

Good luck.

 

[1MW]

Online pharmacy to buy from europe witch accept prescription in electronic format/fax ?
3/10 T can be much better than 0.5/10 T.
Today i have 0.5 T but it is between HF sound&voltage sensation not clear sound.
I hear it more outside than with closed ear.

 

[Zimichael]

Steve...why don't you try for a Keppra prescription instead?! Who knows it may help!

 

[Danny Boy]

Steve...why don't you try for a Keppra prescription instead?! Who knows it may help!

I tried asking my doctor for Keppra and he said an ENT might know more, I told him they'd me clueless....I hate how it's always an ENT we see, as we all know it's not an ear problem!!!!

 

[Viking]

I tried asking my doctor for Keppra and he said an ENT might know more, I told him they'd me clueless....I hate how it's always an ENT we see, as we all know it's not an ear problem!!!!

Keppra is an old and safety antiseizure. Talk about it not with Ent but with neurologists. They sure know it!
Best wishes

 

[Viking]

@SteveToHeal

http://www.canadapharmacyonline.com/DrugInfo.aspx?name=Potiga6804

These guys will send anywhere in the world if you fax them your prescription!

Good luck.

Oh my GOD! 300mg x84 359 Dollars!?!?!?!!? is gold?
In Italy 137,26 euros.... http://www.medicofacile.it/trobalt-star-84-cpr-riv-300-mg_glaxosmithkline-spa_041141096

 

[dan]

Oh my GOD! 300mg x84 359 Dollars!?!?!?!!? is gold?
In Italy 137,26 euros.... http://www.medicofacile.it/trobalt-star-84-cpr-riv-300-mg_glaxosmithkline-spa_041141096

Yes Trobalt is very expensive in North America.
In USA pharmacies can go up to $1000 for 300mgx84

 

[Viking]

Yes Trobalt is very expensive in North America.
In USA pharmacies can go up to $1000 for 300mgx84

I'm always ready for armored assault. Obviously I prefer armored car but maybe it's easier to rob medicine!

 

[dan]

If Autifony will cost $$$$$$$$ there will be many hits on pharmacies worldwide by desparate sufferers who have nothing to lose... lol

 

[Danny Boy]

If Autifony will cost $$$$$$$$ there will be many hits on pharmacies worldwide by desparate sufferers who have nothing to lose... lol

I'll get it free on the NHS.

 

[1MW]

Is there someone with improvement under RTG and worsening(worse than before starting RTG) after stopping it ?
Iam asking that because before starting RTG i had period (some hours) of absolute silence and now with
RTG i have 24/7 T non stop.
@Danny Boy your improvement lasts after stopping RTG or only when you are on RTG ?

 

[Danny Boy]

I don't know, I was never off it really. So it worsened your t? Did you taper off it slowly?

 

[1MW]

Yesteraday i had my worse night.
I fell asleep with 1.5mg lorazepam + 300mg RTG and had suicide T.
So put up in equation big guns benzos + cortocosteroids i took 3mg extra lorazepam and about 50mg methyprednisolone.
In 1 hour from this T & H has gone. 8 hours after that i wake up without T with my head in pillow in super silent room.
So i believe the immediatelly efect was clearly from benzos.
My T is from benzo withdrawal i trying to do these days but i do it very rapid and the results freak me.
My next treatment is to push nerve system to produce more GAGAa receptors (those destroyed from benzos) with flumazenil.The nerve system to compensate exogenous flumazenil will activate all GABAa receptors(become partly inactive by benzos) and create new as mechanism of homeostasis.
My plan is when i have very little T i will inject 100uG flumazenil when i have more T i will do nothing because flumazenil is benzo antagonist and the T will be unmanageable.
This technique will speed up benzo withdrawal / protracted syndrone.
I will try to find the gold line between benzos & flumazenil to control T and withdraw from benzos
as quickly as possible.One very difficult point of these therapy is to take very precisely flumazenil because the danger for seizures & T increased also neural excitoxicity witch can give permanent nerve problems for these reason except from iv flumazenil i will have iv diazepam to compensate errors in dose of flumazenil.I will inject flumazenil in 100uG segments every 15 mins and i will observe the T intensity i will continue to the max dose (500uG) as the point that T go a little bit worse so i will be sure that iam getting therapeutic effects with no side effects.

In some trials found that T have those with hearing loss (measurable & unmeasurable ) with lower GABAa .
So some have a patent for using flumazenil as therapy for T.
In this way push the nerve system to produce GABAa receptors that fill T naturally after that without benzos.

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.