@rtwombly ...In a way if you are including people in your list who have prescriptions and are looking into it you could chuck me into the pond.
I have had a prescription, and a very willing MD (and assistant) for nearly a month now. I'm not in the water yet though, as went away camping for 10 days, then since, have been getting a much deeper education on the mechanisms of this drug (and it's brothers and sisters) c/o our eminent Benryu...and others here.
I feel VASTLY more informed regarding Retigabine now than I did a month ago, and the also the mechanisms of T in general. Seeing as I like to make informed decisions when it comes to meds, (as have had some very bad experiences with some of them), my "hold" is for a couple of main reasons...though I often feel on the cusp of just saying "to hell with it", filling the scrip, and getting going with it.
In case relevant to anyone else "on the cusp", those reasons are:
1. Giving Autifony a chance to post their requirements for Phase II trials to see if I have a ghost of a chance of getting in. For sure if I have been on Retigabine I have severe doubts about their welcome.
2. I have been using Clonazepam for quite some time. Not a very high dose, and totally ineffective for sleep (what I got it for), as have adapted to it completely. However, dumping it takes some doing as endogenous anxiety kicks in fairly quick and life becomes a bit "tense" shall we say. What I call "The white sweat"! Not fun.
So what? Well, no one quite knows how a GABA modulator and K channel drug are going to mix re neuro plasticity, etc.. They may make a cool Martini or they may make a Bloody Mary, with some real blood instead of tomato juice...so to speak. Hell we don't exactly have a great handle on plain Retigabine alone, by itself, that's why we are all aware that this is a "guinea pig trail" going on here...However I have already started to taper the Clonazepam in preparation.
3. A sub-thought...Yeah I am concerned about side effects but not particularly, because I intend to start at lower doses and a slower taper than anyone has done or is doing so far. Reason being, I tend to react very quickly to meds and often at much lower doses than supposed to (and sometimes not at all - so it is not consistent). I'm in no rush once I start...as I am truly a hard core, long term, cemented in, T example. I mean if it works on me, it should kick the shit out of short term T 'plasticity' folks.
4. Cost...Initially a real obstacle as prices were ridiculous. Now quite manageable c/o Canada and the fact that I do not intend to take this stuff for more than a "trial" at this stage. Months, not years. I don't like the long term side effect profile.
That's about it. I'm sitting on this prescription, even had some Potiga coming at the local CVS three weeks ago, and feel like I'm almost in possession of some sacred scroll from Zork. Ha ha...It's weird. Especially as my T and H have such a huge impact on my life...and this could fix it!!!
I can assure you, if Autifony dilly dallies and does not post something soon, and I have gone through the worst of the "chop" from the Benzo...I will be diving in the Potiga water. I've been waiting 58 years, and this seems to be the most viable
current option I have ever come across.
Best, Zimichael