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Showing results for tags 'mast cell activation'.
Sorry so long - - but I feel like I need to give you my history first: I am now 52, but I first developed POTS at the age of 29 (but took me about 15 years to get a proper diagnosis). I was a young assistant professor at Vanderbilt University at that time, when I started having near-syncope episodes with tachycardia. I wonder now if the precursor to that was a "mystery" mono-like illness that caused severe sweating attacks some months earlier (but I also had 2 surgeries that year, and I also think there is possibly a genetic component as my mom/aunt had POTS-like symptoms, and my brother/uncle have Parkinsons, so I can’t be sure of the etiology). After ruling out pheochromocytoma, I was diagnosed as being idiopathically "hyperadrenergic" (this in the days before the term POTS came into use and before Vanderbilt became a prominant dysautonomia center - - I live in Colorado now). They put me on beta-blockers, which seemed to keep it at bay for a number of years, but I never fit the classical POTS picture because while I do get postural tachycardia, I also get postural hypertension or hypotension depending on the day, and often have nighttime attacks while supine. After I married, my husband made me seek more medical evaluation and finally I found a regular doctor and cardiologist who knew about dysautonomias and diagnosed POTS (they first thought NCS, but realized the beta-blockers had my BP/pulse too low, and I don’t get near-syncope episodes now that I’m off those). With increased fluids/Gatorade, extra sleep, avoiding triggers like alcohol, and an occasional clonazepam for night attacks, I have been managing my POTS pretty well for years. t married at 40, had a baby at 41, then we adopted two more girls from China (one as a baby and one as a 7 year old). I love my life and I don’t have time to be sick! But unfortunately I have taken a significant turn for the worse these last weeks and I'm starting to feel desperate for an answer. I had a rough last couple years during which my husband was laid off his job in the recession so decided to go back to graduate school full time, I started working my regular full time job plus some Saturdays at the hospital to make ends meet, my elderly parents who live down the street from us became needy (my Mom developed Alzheimer’s and other health problems and died last New Year’s day), and our older adopted daughter went through some tough behavioral adjustment issues (So, let's just say "massive stress" and lack of adequate sleep/rest these last couple years). My husband started a new job a few months ago, my daughters are all doing well now, and things were looking up when 6 weeks ago I had an anaphylactic reaction to an antibiotic I took for a bladder infection (never had anything like that happen before) and then I weirdly started reacting to foods I ate and having these flushing episodes with throat erythema/sometimes diarrhea, and also odd temporary symptoms like upper lip or limb numbness, and occasional sweating attacks (and I had, since developing the POTS, typically sweated less than normal). In retrospect, I realize I’ve been having these symptoms occasionally for awhile now, and also episodes of severe overall itching and turning bright red when skin was touched and sometimes a light scratch raising a welt, but I was chalking it all up to stress, POTS, and menopause and ignored them as they weren't severe enough things. But now the flushing, throat irritation when I eat, and my POTS cardio symptoms (and shortness of breath) are flaring full bore. After visiting regular doctor and allergist, we are contemplating that I may have hyperadrenergic POTS with mast cell activation disorder (MCAD), although my tryptase levels were normal and I’m still waiting on the 24 hour urine to rule out carcinoid tumor. Slightly elevated Ige, but no foods tested allergic. Docs are not familiar with MCAD but I did my own online research (got wonderful info from all of you here, thank you) and told them about it. Allergist is skeptical, but did read the Vandy article on hyperadrenergic POTS and MCAD and remains open-minded. He put me on H1 and H2 antihistimines (Atarax/hydroxyzine 3 a day and 2 at night, Benadryl about every 5-6 hours, Zantac 2 X/day) and clonazepam/Klonipin for heart rate/pulse whacking episodes. He also wants me to try Singulair (have the prescription but the FDA warning about mood changes and suicide scares me!) or prednisone low dose for a few days. I am not getting enough relief yet - - I have been felled by these past days, unable to drive my kids to school or go to my office, Feeling like I can't eat many foods without reactions (have lost 15 lbs in 6 weeks), having episodes of BP whacking from 220/150 to 90/60 and pulse changing from 40 to 120 (and when these episodes hit, I shake like a leaf and my thighs cramp until it passes in usually about 20 minutes). So I’m considering trying the Singulair or low-dose prednisone short term - - but not sure which is best. I am starting to feel desperate as I don’t want to take medical leave from work, but don’t know how I’m going to be able to go to the office with this happening, or even drive my kids to school! I have always been the one to keep my family going, especially since my husband travels in his new job, and my 6th, 5th, and 3rd graders need me. I am really struggling here - - can anyone offer advice? Do you think I should try to make an appointment to fly out to Vandy for evaluation? (as far as I can tell there’s noone in Colorado who understands POTS or MCAD really well or has the equipment to test ANS dysfunction). Should I try the Singulair - - has anyone had mood problems, depression on it? Or should I hit the prednisone first to see if I can get this under control before looking into longer-term meds? Do my symptoms indeed sound like MCAD and should I pursue the n-methyl histimine urine test to find out? I am looking to this forum for support and to learn from others as I deal with this new, awful wrinkle - - I'm determined not to let this slow me down but to be back to work as soon as I can, even though it appears I will need to cut my hours back to part time and make some changes to reduce stress if I'm going to avoid this happening again. Thanks for any advice you can offer! Carol