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cle1106

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Everything posted by cle1106

  1. Thanks so much to everyone for the welcome and comments! DizzyDame: No, I haven't had a tilt table test yet -- my internist has me doing CT scans first to rule out adrenal tumors and the like. I had been wondering about mast cell activation disorders -- do you know if they're pretty much the same as mastocytosis? I believe I've already been tested for the the latter (blood tryptase levels?). The methylhistamine test seems ike something to look into. JaneEyre9: I've seen about five dermatologists (including specialists at the University of Michigan), all of whom are pretty much stumped. The only answer I keep getting is that this is something systemic, not dermatological. However, in the meantime, I was put on standard rosacea treatments to see if they could provide any relief until I got a diagnosis, but the antibiotics prescribed seem to make everything go haywire and I had similarly bad reactions to every topical. Some of the dermatologists recommended I go on to Mayo, so it looks like I'll have to end up going that route. I haven't had Lyme brought up as a possibility yet, though I've read a bit on it myself... From what I remember, it seems like most affected have an accompanying rash (bullseye pattern?), though I could be completely wrong about that. Carolyn: Unfortunately, this began months before I started taking a vitamin. I was worried about the niacin exacerbating the flushing, but was reassured by my internist that the amount of niacin in a multivitamin is too small of an amount to do anything. calypso: That's really interesting that the Effexor worked for you. I was prescribed it as a last-ditch effort after other medications (atenolol, neurontin, etc.) weren't touching the problem. I didn't see much of a change, but maybe I didn't stay on it long enough for any real effect -- I wasn't too happy with the side effects and quit it after a few weeks. Did you see an improvement fairly quickly? I got several conflicting answers from doctors about the length it takes to notice any real difference (initially I was told that since it helps the flushing and hot flashes of menopausal women quickly, I supposedly should have seen an improvement in a week; a second doctor told me it'd take at least a month). Thanks again, I really appreciate all of the help. Getting responses instead of just reading a list of symptoms has helped quite a bit already
  2. Hi, I've had intensely paniful facial flushing (lasting anywhere from 5 to 20 hrs., almost every day) for the past year with no diagnosis. Despite being referred to multiple doctors and having tests upon tests performed (for pheochromocytoma, carcinoid, autoimmune diseases, etc.: all negative; the only thing found so far is a deficiency of several B vitamins), no-one really seems to have a clue as to what could be causing this. I'm also suddenly very intolerant to heat as well, despite being only 19 (so obviously hot flashes because of menopause are out of the quesiton). I've tried beta blockers with little success and am currently on clonodine, which controls the flushing to some extent, but isn't enough to stop it from being very debilitating. Recently I had a doctor bring up the possibility of dysautonomia after my heart rate went from 53 to 125bmp upon standing (I haven't had a tilt table test yet). I noticed that flushing was listed as one of the symptoms, but wondered whether or not anyone's flushing with POTS is this severe/recurrent. I'd really appreciate anyone's thoughts/experiences -- Thanks, Courtney
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