Retigabine (Trobalt, Potiga) — General Discussion

And the Pittsburgh guys are also talking about "preventing". I'm getting frustrated with this acute/chronic bullshit. I know that Benryu has explained that it shouldnt matter but as a natural born pessimist I just can't be too hopeful.

Don't be pessimistic! The people at Pittsburgh did not know that Retigabine worked on chronic tinnitus....But that's not surprising since Retigabine had not been tested on any tinnitus type, and researchers have always assumed chronic tinnitus would be much harder to treat than acute tinnitus because of brain plasticity issues. Of course, this is still true; and there's no evidence--yet--that any drug will cure chronic tinnitus. What we now know, however, is that chronic tinnitus can be reduced significantly--and this too is a breakthrough.

Remember, when it comes to the brain, researchers do not know much. It's been largely uncharted territory.
 
Hey jazz I apologize if you are referring to aut63 but did you find this some where?

@SoulStation Hi!

The researcher looking into it is Dr Thanos Tzounopoulos at the University of Pittsburgh.

Here is the same researcher talking about his findings regarding Kv7 channels and tinnitus; he also notes they are hoping to start clinical trials in humans in perhaps a year. The YouTube video was dated March 2013 so perhaps something big is in the works!

Interesting video. Enjoy! :D

 
Interestingly in my OCD never ending google quest to try to find out more out retigabine I found this in regards to an active study scheduled to end this month on Retigabine's potential for causing urinary retention:
http://www.clinicaltrials.gov/ct2/show/NCT01462656?term=Urinary retention&rank=6

Interesting clinical trial. Thank you for reporting it.:)

I just found this April, 2012, pdf on urinary retention and tinnitus--the actual numbers during the clinical trials. Everyone interested in the drug should read it. While rare (2%) and reversible, urinary retention is serious. Other kidney problems, notably Hydronephrosis, is also serious and occurred in two people participating in Retigabine's clinical trials.
 
Hi Everyone,
It would be interesting to know that once the potassium channels have opened and stay strong for a while, if once off the drug, they will then stay open. Unlike a Benzo which needs continued use. I believe Benryu may have intimated that once this plasticity takes place re potassium channels, it will stay strong, even off the drug. Right? Can anyone comment more on this re plasticity and potassium channels?
Thanks.
 
Hi Everyone,
It would be interesting to know that once the potassium channels have opened and stay strong for a while, if once off the drug, they will then stay open. Unlike a Benzo which needs continued use. I believe Benryu may have intimated that once this plasticity takes place re potassium channels, it will stay strong, even off the drug. Right? Can anyone comment more on this re plasticity and potassium channels?
Thanks.
I believe thats the idea. We can only hope its a one time treatment.
 
For the Benryu followers and nueron-ologically inclined, I found this a helpful video of the GABA/Benzo action and what happens on the synaptic level. Mainly the first section is relevant, but also note that Glutamate and K+ comes in at the end (and one of the potential side effects of Retigabine = muscle relaxant = that "urinary retention"???)
I was following this up in relation to my Benzo v. K channels v. plasticity and figured some of you may like it. Videos are nice, as makes it easier to follow and can pause the thing and go "Huh???"

Here you go:

Best, Zimichael

Hey Zimichael. Awesome post and lecture. Who are these guys??? More benyrus? Whoever he is, hats off because I think i'm actually starting to understand this. So to a layman who knows nothing about neuro-transmission. That's probably what every budding neuroscientist says. LOL. Interesting what they say about the GABAb receptor channel and the regulation of the K+. That's T-related.
 
@Zimichael
I hope you get some positive results once you get your hands on this drug.
Fingers crossed!

@Jay M ...Thanks! Yeah I'm ready to start today after all the research I've done to weigh the risks, but obviously the "Potiga Gods" are not. Oh well, after the gazillion hours, days, weeks, years, I have had this 'charming' affliction, and my age...(creaking and groaning sounds ;)) I have learned some patience. I think???!!! Hopefully the stuff will ship rapidly from the cold, wet, damp, ever-drizzling land and accelerate in anticipation of sunny California.

Hi Everyone,
It would be interesting to know that once the potassium channels have opened and stay strong for a while, if once off the drug, they will then stay open. Unlike a Benzo which needs continued use. I believe Benryu may have intimated that once this plasticity takes place re potassium channels, it will stay strong, even off the drug. Right? Can anyone comment more on this re plasticity and potassium channels?
Thanks.

@Lisa88 ...This is one of the $50K (Uhhh...now with inflation and Fed stimulus I guess that should be $5o Billion) questions, and is probably the most anticipated and exciting, to my mind, after the fact that the K channels actually do "work" on T....viz. Retigabine/AUT00063.
My personal feeling is that it is very likely brain plasticity will adapt to the new state - or back to the prior pre "bouton boom" damage + Glutamate, that likely caused the problem in the first place. Brain adaption is just a fact and amazing (just look at what happens with stroke patients). Now I realize that with stroke and such there are 're-directions' within undamaged parts of the brain getting worked on and roads traveled that were dusty side streets before getting traffic, but I can't believe there are not "synaptic level" changes going on too, as per this K channel door kicking stuff.
This has been pretty well covered by @benryu and some of the other posts in this Goliath of a thread and it will take some work to decipher it, but it's there. If you go back, you will find it.
In the end though, the proof is in the pudding. We need to see what happens with this current "experiment" and then ultimately Autifony's lead in the game.

@jazz ...(and others) looking forward to reading your new research posts. Thanks much for consistently good info. This truly is an example to me of the fact that 'more heads mulling a puzzle are better than one' (well as long as Putin isn't one of them...sorry, couldn't resist. Maybe I should say Mugabe, to stick to my experiential roots :)).

As an aside, now that I have to sit (not exactly as in 'doing nothing' these days!) and wait for the Potiga, I am going to see if I can dig up some potential counter-measures for "urinary retention" issue with Retigabine. Something that does not work on K ions and such, as this could be a side effect that is more common than many of the other potential ones we could encounter.
@jazz ...You are such an excellent researcher, if you have any great ideas on this, would be very useful to know and please swing my way in Conv. (or here) if you wish to, or have time/inclination.
I intend to ask my doc as well after the dust settles a bit as boy have they been getting an email storm of requests from me...Kinda like all the letters Harry got from 500 directions to get him into Hogwarts! "Owls everywhere" overload.

Getting long post attack again ~ Sorry, this darn coffee...but it is one of the few things I look forward to in a day of "screeching", etc., etc., etc.

Best, Zimichael
 
I tried again to get a prescription for Trobalt but the doctor didn't think it was a good idea. Too dangerous he said.

He also told me he had been an expert for over 10 years and everything else had failed. Ugh...
 
My insurance company definitively said "we will not pay for this unless you're diagnosed with complex partial seizures".

I could afford to pay for this out of pocket if I wanted to, but I might rather spend that money on something more fun. I will probably put this idea on the back burner for now.
 
Interesting clinical trial. Thank you for reporting it.:)

I just found this April, 2012, pdf on urinary retention and tinnitus--the actual numbers during the clinical trials. Everyone interested in the drug should read it. While rare (2%) and reversible, urinary retention is serious. Other kidney problems, notably Hydronephrosis, is also serious and occurred in two people participating in Retigabine's clinical trials.


Yeah interesting alright. Jeeez that kidney pic looks like it got hit by a meteorite storm!

Also did you notice that Tzounopoulos mentioned Kv7 channels not Kv3....Mmmmmmmmmmmm.

On that Risk of Urinary Retention With Retigabine I notice that they are not requesting participants and that:

Estimated Enrollment:1
Study Start Date:February 2011
Estimated Study Completion Date:September 2014
Estimated Primary Completion Date:September 2014 (Final data collection date for primary outcome measure)

Ummmm... just ONE!!!??? Maybe this is a totally "big data" search guy and somehow he/she is going to link all the dots of CPT codes or whatever and assume conclusions from that???
Maybe I'm on Mars here, but that does not sound to be a very useful method - but perhaps armchair computer screening is waaaaay smarter than doing a people trial....these days. (I'm doubtful).

Thanks for posting this stuff as I think the urinary retention is worth trying plan for.

Zimichael
 
"Also did you notice that Tzounopoulos mentioned Kv7 channels not Kv3....Mmmmmmmmmmmm." - @Zimichael

That's probably because in his experiment he used Retigabine - it's his baby.
Kv3 are Autifony's territory, so he isn't interested in promoting them, he isn't an Autifony employee. Everybody wants their molecule to be the cure (?)
 
They made some kind of new system where we can post thing, anyway I feel 60% better, for example this morning i could hardly hear it, and now i hear it, my t is reactive, reacts on little stress and on pressure, kind blood pressure, long exposure to sound that is in normal limits (like ear get tired of it) trobalt has better effect longer i use it, and side effects fade away. general felling is 60% better, maybe more if you are not scared it will come back, and know i use only 200mg not full dosage like 300 or 400mg
 
They made some kind of new system where we can post thing, anyway I feel 60% better, for example this morning i could hardly hear it, and now i hear it, my t is reactive, reacts on little stress and on pressure, kind blood pressure, long exposure to sound that is in normal limits (like ear get tired of it) trobalt has better effect longer i use it, and side effects fade away. general felling is 60% better, maybe more if you are not scared it will come back, and know i use only 200mg not full dosage like 300 or 400mg

Great work Christian. Don't go All In though.. as I think such positive results should yield a real T medicine soon, with lesser side effects
 
Well as a guy 2 months ago, one in deep hole and now I am behaving 300% better, if not event more, one can not compare how down i wan lost totally lost, invalid, and now holding life again in my hands, my mother would say even 1000% transformation.
 
Only if someone is interested. These are the countries where Trobalt is available in Europe:

"The medicine is available as tablets in the following Member States: Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Estonia, Finland, France, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Romania, Slovakia, Slovenia, Spain, Sweden and the United Kingdom."

Source: http://www.ema.europa.eu/ema/index....news_detail_001802.jsp&mid=WC0b01ac058004d5c1
 

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