It would be interesting to compare benzos with potassium channel openers. For example, Lorazepam also has anti convulsive/anti seizure properties. Although its main mechanism is attaching to the gaba receptors, I wonder if it also works on potassium channel openers. If a comparison can be made, maybe withdrawal or tolerance symptoms may be predicted on continued potassium channel drug use, such as Retigabine and Au 063. @benryu
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
MemberTo my knowledge, AUT00063 and AM-101 (and soon AM-102) is the first drugs ever developed to exclusively treat T. There was some other drug called Maxipost but they gave up on that before even trying it on humans I believe. So I'm wondering what drugs for T you are referring to here? Or are you talking about drugs in general?
The socialist beaurocratic nonsense stops progress with all the idiotic paperwork and timetables, in the meanwhile people die waiting for things to get "into new phase of aprooval".
FounderFrom Idea to Market: The Drug Approval Process
"After an IND is approved, the next steps are clinical phases 1, 2, and 3, which require approximately 1, 2, and 3 years, respectively, for completion."
Indeed, pretty sure the phase 2 will take at least a year...
undecided
Member
5 years average for clinical trials seems a bit excessive.
Still, retigabine is on the market -right now-.
Still, retigabine is on the market -right now-.
Could this be the same as someone using aut 063 ? If we was to ask how many people on here would jump at the chance to be part of the next phase of testing of aut 063 there would be a big response of yes i would say.
But imagine taking part in the trial, you get the real thing for a couple of months to try, it works superb, then when you stop the trial it comes back the same, or worse, what happens then, you cannot get more of it to use again can you.
Surely this scenario would have been tested somehow, or else what would they do to all the people who got the real thing in the trial and that happens.
I know trobalt is a different medication, but as it seems to be working for the ones on here using it, if one of them tried to taper off it would be good to see what happens with them, lets see if Mpt has done this as we havent heard how he is doing since he said he would taper off recently.
Yeah, it is possible that you try it, feel great than stop after 2 months because the trial is over and now you're fucked with tinnitus being even worse because your brain got used to the stuff. And who knows maybe you even experience some other problems unrelated to tinnitus but related to other things that kv3.2 works in your brain.
Very unlikely, I can't think of any physiological reason for this to happen, there is no more reason for this than a reason for the drug to grow a penis on your forehead and transform you in a unicorn. haha
(Worst case scenario would be it go back to how it was before because plasticity did no have enough time to build up)
so would you say this would be exactly the same for the present people on trobalt, if they tapered off it would not go any worse than before they started Benryu, it would only go back to normal if they had not give it long enough for the plastic thing to happen ?
SoulStation
Member
So i just got a RX for potiga 100 mg 3 x a day. I hope I can afford this med and it doesnt mess me up. @Christian78 how are you doing?
Also if anybody else in the USA has tried to or gotten this drug if you have an idea about what its going to cost me money wise? I dont have insurance coverage on this so i know its gonna be pricey.
Also if anybody else in the USA has tried to or gotten this drug if you have an idea about what its going to cost me money wise? I dont have insurance coverage on this so i know its gonna be pricey.
SoulStation
Member
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
Hey if you are "poor" (not actually that hard in the USA!) and have no prescription coverage you can follow my past info/posts on getting it free c/o "Patient Assist" direct from Big Pharma (GSK). It actually does not take that long and you could get the process going, to kick in and eliminate your need to carry on buying it...if you like what's happening, etc. by then.
On average, when I had no insurance, a prescription, and 'low income' (c/0 1040 first page showing AGI) the whole shebang would take about 2 weeks or maybe a month at most before I had the med. Basically, it's 'prescription -> phone Pharma assist program -> Fax prescription and 1040 (or other income ref. - they tell you what) -> get approval (few days to a week) -> med sent in mail to you or to docs office depending on their policy -> receive med and do appropriate dance to appease the 'Greed Gods' from being shafted -> take med and...hope to shit it works after all the effort.
Otherwise, if you live in USA...
(Sigh...your "Profile/Information" page does not say where you live or what T you have and...One of my pet peeves, as I like to sometimes just simply click on a member to find out just the most basic info like this, and if you have said it in a thread I don't have enough synaptic retention to even absorb 1% of what I've read on this site since I joined, so...Well you get the idea)... Where was I?
...Oh, yeah, if you live in the USA the Canada Pharmacies are way cheaper and "work" for us with USA addresses - and if I go with this stuff (Potiga) my doc will phone it in here: http://www.canadapharmacyonline.com/DrugInfo.aspx?name=Potiga6804
Best to f British... Zimichael
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
@SoulStation ...Hey before you go through all the tripwires of a USA pharmacy (if not into what I just said above) go back and read my adventures in that realm (on this thread - have fun as it's only 50 miles long now!).
It was a real ring-around-wing-ding thing with all kinds of misquotes on price and availability and "Oh the CASH price!", etc., etc. And the usual...price checking around was a BIG deal = huge differences.
Z.
It was a real ring-around-wing-ding thing with all kinds of misquotes on price and availability and "Oh the CASH price!", etc., etc. And the usual...price checking around was a BIG deal = huge differences.
Z.
SoulStation
Member
Hey I'm in the east coast NYC /CT area and do have subsidized health insurance but am hoping I can get a reasonable price ...I have managed to get good prices from cvs in the past on generics but fear this even will be outrageously expensive. In which case I'll have to go the route you suggested with GSK but it's tricky for me cause I had the RX electronically sent to a specific pharmacy
Thanks for your quick response . I really appreciate it!
Thanks for your quick response . I really appreciate it!
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
@SoulStation ...read my past posts, as I was indeed dealing with CVS and you can see the results. Just get your doc to redirect the scrip or phone the Canada pharmacy toll free number...if you get the same run around I had at CVS.
Z.
Trobalt (retigabine) is a very different kind of dope
Just to be clear Retigabine ≠AUT00063 by any mean, they happen to act in the same area but in radically different manners. Plus the retigabine is not meant for T. and its scope's too wide to be viable and it has numerous side effects.
As previously said retigabine controls spikes and can have a positive effect on volume for some people, but won't "cure".
It either never happened or it did but they threw it under the rug. But please indulge me and show me the money. ;-)
My BCBS insurance was prepared to pay all but $20 for any dosage per month. Hoping the new plan I got under Obamacare will be comparable.
That's to be expected since you weren't on for long. You wouldn't say your tinnitus was worse when it came back?
BTW, Ivan, are your problems resolved now or is that still a work in progress?
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
However simple the pharmacokinetics of AUT0063 may look on paper, once it's administered to a large enough number of people, there will be some amount of side effects we don't know about yet and cannot anticipate until that large exposure happens. This is the case with every drug we've ever come up with. Metabolism is complicated.
I too wish the research could be accelerated and regret that it takes on average 3-5 years to get even a promising drug through trials, but except in the case of conditions which will literally kill you in the mean time, this is generally to everyone's advantage. I'm not super enthusiastic about taking retigabine given that only ~10k people have tried it; I'd be proportionally more concerned about being in the first 100 for '63. In general scientific rigor has improved since stuff like fen/phen and thalidomide hit the market, but the risk is still very real. Look at the sheer number of drugs that got black box warnings after they'd already been on the market for a decent period of time.
I'm still waiting to find out if my insurance will cover Potiga.
I too wish the research could be accelerated and regret that it takes on average 3-5 years to get even a promising drug through trials, but except in the case of conditions which will literally kill you in the mean time, this is generally to everyone's advantage. I'm not super enthusiastic about taking retigabine given that only ~10k people have tried it; I'd be proportionally more concerned about being in the first 100 for '63. In general scientific rigor has improved since stuff like fen/phen and thalidomide hit the market, but the risk is still very real. Look at the sheer number of drugs that got black box warnings after they'd already been on the market for a decent period of time.
I'm still waiting to find out if my insurance will cover Potiga.
On September 9th I have an appointment with a new doctor with whom I mean to discuss my options. Preparatory to that, I'd like to summarize the experiences of those who have been able to at least get a prescription for retigabine. Please correct me if I omit anybody.
Mpt -- Our original poster has been on retigabine since June 27, 2014. His tinnitus started in January of 2014. Within two weeks, he improved to the point that he could no longer hear his noises except in a quiet room with his fingers in his ears. His dosage is 300mg x 3/day.
Christian78 -- Tinnitus since September 2013. Started retigabine July 22. Tinnitus 30-40% improved and no spikes at 200mg x 3/day. Efficacy seemed to decrease after seven days. Decided original dosing increase had been too rapid, restarted on or around August 4 at lower dosage. After 200mg x 3/day for 13 days, reported "no tinnitus" on August 24th; has had good days and bad days since then.
Viking -- Tinnitus since 2006, got worse 2013. Started retigabine July 25, big improvement by July 31. Stopped usage on August 5 due to kidney stones (pre-existing, but diagnosed early August). Plans to start again now that this condition has resolved.
jamesdk -- Onset unknown. Started before July 27. Tinnitus 70-80% improved. 100mg x 3/day. Member has not posted again on the thread, so this may not be legitimate.
Lep -- Tinnitus since June 2013. Started retigabine before August 5. Vision disturbances after three days, stopped usage after one week. Had not experienced improvement and was concerned about side effects. Side effects went away after a day without retigabine.
linearb -- Tinnitus since 1998. Obtained retigabine prescription, waiting to see if insurance will cover.
johno -- Tinnitus since June 7, 2012. Obtained retigabine as of August 24, has started/will start shortly.
SoulStation -- Tinnitus since 2012. Obtained retigabine prescription today (August 28). Looking into costs.
Bogdan -- Tinnitus since 2012. Started retigabine around August 14. 50% improvement at 100mg x 3/day. Will increase dosage in the coming week.
So, taking all these people at their word, we have six people who have taken retigabine for their tinnitus. Of those six, five experienced at least some improvement, one (Mpt) is as nearly cured as makes no difference, and three others had positive enough experiences that they are continuing on. Viking and Bogdan report early improvements after more than 1 year of tinnitus.
On the negative side, Christian78, Viking, and Lep all experienced significant side effects, though Viking did not rate his as anything to worry about. Christian78 reports side effects diminishing with time.
We're still early days, but a huge THANK YOU to all those who have taken on the risks and financial burden of this treatment.
Mpt -- Our original poster has been on retigabine since June 27, 2014. His tinnitus started in January of 2014. Within two weeks, he improved to the point that he could no longer hear his noises except in a quiet room with his fingers in his ears. His dosage is 300mg x 3/day.
Christian78 -- Tinnitus since September 2013. Started retigabine July 22. Tinnitus 30-40% improved and no spikes at 200mg x 3/day. Efficacy seemed to decrease after seven days. Decided original dosing increase had been too rapid, restarted on or around August 4 at lower dosage. After 200mg x 3/day for 13 days, reported "no tinnitus" on August 24th; has had good days and bad days since then.
Viking -- Tinnitus since 2006, got worse 2013. Started retigabine July 25, big improvement by July 31. Stopped usage on August 5 due to kidney stones (pre-existing, but diagnosed early August). Plans to start again now that this condition has resolved.
jamesdk -- Onset unknown. Started before July 27. Tinnitus 70-80% improved. 100mg x 3/day. Member has not posted again on the thread, so this may not be legitimate.
Lep -- Tinnitus since June 2013. Started retigabine before August 5. Vision disturbances after three days, stopped usage after one week. Had not experienced improvement and was concerned about side effects. Side effects went away after a day without retigabine.
linearb -- Tinnitus since 1998. Obtained retigabine prescription, waiting to see if insurance will cover.
johno -- Tinnitus since June 7, 2012. Obtained retigabine as of August 24, has started/will start shortly.
SoulStation -- Tinnitus since 2012. Obtained retigabine prescription today (August 28). Looking into costs.
Bogdan -- Tinnitus since 2012. Started retigabine around August 14. 50% improvement at 100mg x 3/day. Will increase dosage in the coming week.
So, taking all these people at their word, we have six people who have taken retigabine for their tinnitus. Of those six, five experienced at least some improvement, one (Mpt) is as nearly cured as makes no difference, and three others had positive enough experiences that they are continuing on. Viking and Bogdan report early improvements after more than 1 year of tinnitus.
On the negative side, Christian78, Viking, and Lep all experienced significant side effects, though Viking did not rate his as anything to worry about. Christian78 reports side effects diminishing with time.
We're still early days, but a huge THANK YOU to all those who have taken on the risks and financial burden of this treatment.
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