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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: PVC's with every new drug! What does a POTs and EDS person do!!

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › CCSVI › PVC's with every new drug! What does a POTs and EDS person do!! › Reply To: PVC's with every new drug! What does a POTs and EDS person do!!

December 30, 2012 at 5:46 pm #3275
Dr. Diana
Keymaster

Hi Diamondcut, What you describe is SO common with us. It doesn’t affect me any more, and I *think* it is because I’m on a mast cell stabilizer (I prefer Ketotifen, but Cromolyn Sodium is about as good). It calms cells that release histamine and other chemicals, which I suspect cause the PVC’s. It takes about 3-4 weeks before the meds work (they don’t kill off the current bad guys, but the new ones are “calmer”), but is well worth the wait. I’ve seen some patients become practical skeletons because they are afraid to EAT anything, too. One poor woman died because she thought she’d become “allergic” to water. Yikes. I DID have 2 months of horrible diarrhea that went away in 48 hours with Zantac/Zyrtec. My doctor was at a total loss as to what was happening. She asked how many bowel movements I was having a day. “Gee whiz, just give me a sip of water… Maybe 25 movements/day?” She was horrified, but let me leave with advice to try some Kaopectate. Good grief. Anywho, with mast cell stabilizers, I don’t have that horrible sensitivity to medications that I used to (yea!). At least that opens up your options, if nothing else. Are you on Zyrtec, Diamondcut? I think that medication offers us some “special help” (more later). Be sure to drink lots of water (now I’m sounding like your mom, right?) 😉 Hang in, my friend. You mentioned “books”?! Books?! I’ll be doing a video about why I pulled my book — please watch for it! Oh, and Robert, if I’m one of your main sources of entertainment, we are both in BIG trouble (DON’T ENCOURAGE ME. ha. Information? That’s cool. Working hard over here…

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