Any New Meds Being Used For Pots ?

[dizzygirl]

I was wondering if there are any newer meds available recently (as in the past yr) that are being used to treat pots???

right now im pretty much just on beta blocker and clonidine.. and i want to stay as medication free as i can BUT.. symptoms are going to nutty.. that im really considering more medication for treatment..

ive treid florinef,proamatine,zoloft,paxil,prozav,lexapro,effexor, cymbalata,mestinon, provigil,lyrica, a hadnful of ssri's (that i dont do well on) and a boat load of beta blcokers and afew calcuim channel blocker which again are a night mares for me the ccb's

Im really hoping that there is something new to try!

[MightyMouse]

i haven't heard of anything new on that horizon--folks often send Michelle info when they know of something. my best suggestion would be to read through the newsletters that are on the main site to see if any of the research reviews cover new medications.

[doctorguest]

Unfortunately, there hasn't been anything new. Even more unfortunate is that until and unless the pharmaceutical companies take interest in the autonomic disorders, new medications are unlikely to be developed in the near future. Perhaps new agents may come out from research on either diabetes-related autonomic dysfunction (as it is much more prevalent and receives great funding and attention from scientists and public) or research related to space and orthostatic intolerance in astronauts returning to earth.

[stellakitty]

Have you tried Procrit shots? My daughter did well on these until her red count got too high, then the risk for blood clots increases. Dr. Grubb also suggested Sandostatin shot for her, but we didn't get around to trying those.

Angie

[pat57]

Dizzy, ask your Dr. about St. Johns wort. I take that because antis give me insomnia.

And doctorguest,

ain't that the truth. I have hepatitus C and the the pharmaceutical companies are working over time to get a piece of that market. I did 2 surveys and got 50 dollars for each. 50 dollars! With like 60 million HCV paitents in the US at 10K per treatment. We'er talking really big bucks. My GI Dr said, and I quote, "The pharmaceutical companies are tripping all over themselves to get a new treatment approved".

[dizzygirl]

hmmm.. too bad we couldnt get bill gates to fund or some some interest in POTS!

Uhm i talked with dr grubb about procrit.. as its one of the few things i have not tried... But b/c of the insurance i have.. and all the chances to medicaid and medicare...procrit is not covered...

Im thinking of trying b12 shots.. or the liquid stuff.. I recall my dad giving me this b12 stuff as a kid ..(i had horrible fatigue then too) and he would make me hold it under my tongue for a few then swallow it.. i remember it gave me a bit of a boost..

also thinking about restarting mestinon and cymbalta.. as i did get small improvement... But im not sure i want to deal with the side effects .. they where brutual on me... I kind of feel like im at a cross of choosing the lesser of 2 evils... unrelenting pots symptoms or nasty med side affects.. hmmmm..however will i choose!

(((sigh))))) oh well.. well see.. thanks for feedback folks!

[goldicedance]

I am actually surprised that I don't see any (or few) people who has tried Sandostatin.

I am probably the only one active on POTSPLACE who has tried it. I got excellent results for awhile until I developed hypertension plus gall bladder disease.

I sure hope that more research is done on autonomic disorders.

Lois