Vandy, Pots, Cfs, & Methyldopa Ongoing Clinical Trial

[kitt]

I had heard Vandy was doing a trial on Methyldopa, but did NOT know that it is on patients with both POTS and CFS.

Wish I had learned of this when it was still open.

Interesting reading about it. Noticed they also are studying the effect of saline in this same study,

This is a very long study. 2007 until July 2013.

http://clinicaltrials.gov/show/NCT00580619

[bustersacc11]

I thought that study closed already? I didn't realize it went to 2013. I was prescribed methyldopa by vandy dr. For me, it didn't help my fatigue, worsen my exercise tolerance, and overall didn't improve my quality of life. Vandy likes their methyldopa. Appears to be the drug of choice over clonidine for those with hyperadrenergic component. Rationale is it has a more steadier effect than clonidine. Man..it's side effects are tough.

I think they are receiving funding from NIH. For the NIH to provide grant money they must have been convincing that they may have something. I was labeled CFS but never agreed that I had it. Later it was agreed that I have fatigue component but nothing like someone who truly has CFS. I get very frustrated because I wish there was more research going on with dysautonomia. Truly, CFS research has brought nothing but one dead end after another. There is very limited funding for CFS and dysautonomia. It stinks.

[ramakentesh]

That study was closed a while back.

[Zap]

Well, isn't it funny when things cross paths. I'm starting to figure out some of underlying problems, with genetics intertwined. I've been trying Velvet Bean (Dopa Bean) as a supplement, which basically provides L-Dopa. It has helped a little bit - but what seems to be even more critical is that it ties into my research about BH4 deficiency and how it prevents formation/recycling of neurotransmitters. I know at least some of us have the MTHFR mutations - so it seems that some of the research is starting to converge.

[kitt]

The study was still open in 2012.

It's interesting that Vandy is keen on Methydopa, as you say Buster. I started it yesterday, and am tolerating 250 mg. 2 times a day so far with no issues. I've only had three doses, but usually I don't tolerate anything new.

My only concern at this point is to quiet the sympathetic aspect, as my NE is over 1400, and life without sleep for months on end has been a living nightmare. If it can do that for me, I'll be thrilled. Have tried Clonodine, and Mestinon already, so am hoping.

Am especially hopeful because I have CFS also, and the study has been going on so long, I can't believe they haven't learned quite a lot by now.

If I didn't have the extreme hyperadrenergic aspects, I wouldn't have tried it. The side affects are 'possible side affects', but I agree, they concerned me too.

Thought the fact that they're testing saline along with this is interesting.