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Found 4 results

  1. Hi everyone, Haven't posted in a while. Previously, my endo was considering insulinoma, but that was ruled out and abrupt sugar and insulin spikes are now considered to be related to extreme stress response to my significant orthostatic hypotension. During my last appointment with Autonomic Neurologist, he was concerned about my intense facial flushing, red blotches on my neck, and raised red bumps on top of my hands. Sent to dermatology, where they saw the same symptoms come and go over the course of my appointment. My dermatologist ruled out systemic mastocytosis with tryptase of 2.5 (normal to 11) and skin punch biopsy of blotchy skin on upper chest. Could really use some input from you all, especially curious if any of you with orthostatic hypotension +/or autonomic neuropathy have non-itching flushing or blotching? Dermatologist originally thought blotching was chronic hives and send me home to take 3 zyrtec a day and eliminate red and yellow food dye from meds/diet. I never had a problem with zyrtec before so took 1 (generic, white pill) for 5 days without issue, then added a second pill for 5 days before adding a third pill. The day following the third pill, I started the worst 3 day episode of OH that I have had in 2 years -- BP 110/70 while laying, 166/110 while sitting then 88/66 while standing. At the time, I was taking 75 ug Levoxyl, 20 mg verapamil, 75 mg ranitidine and 5 mg zolpidem. Since I had been titrating the verapamil up from 10 mg/day over the previous three weeks, I kept at the 20 mg while adding zyrtec. After the 3 day OH episode, I awoke the next day with more energy and clarity than I have felt in 5 years. I kept busy and enjoyed this reprieve until it lasted all night. Even with several attempts to sleep, I was awake for 40 hours before finally sleeping but towards the end my family said I was wired - talking really fast, bouncing off the walls. This is how I recall feeling prior to my world changing due to AN. After I finally slept, I awoke the next morning with a 14 hour migraine. Day 3, stopped both the verapamil and zyrtec until I figure out if I should restart, but now wonder if that triggered migraine. Consulted both physicians, who are at a loss and trying to figure out what to do next. Wonder if the combination an addition to zyrtec dose is involved with this reaction? Funny thing is, I often get GI symptoms with this flushing, so now I am looking at some mast cell connection, as others have suggested from my medical history. Also have dermatographism and extreme sensitivity to fragrance and history of anaphylaxis/anaphylactiod reactions treated with epi, as well as other numerous significant reactions/episodes (some triggered by meds, some by foods?). Learned skin biopsy didn't support hives, but did show dilated blood vessels. Since my blotching does not itch, is not raised and only gets hot, = not a typical histamine reaction. Dermatology wonders if flushing/blotching may be related to some type of vascular leaking due to autonomic neuropathy/orthostatic hypotension. If it's not histamine, could this leaking be caused by a different mast cell mediatior? Neither neurologist nor dermatologist are familiar with MCAD, but both are looking into it. Dermatologist felt that the concept of MCAD is plausable to describe my odd presentation, and encouraged me to continue down that path, especially after I shared a synopsis of what I learned in my research, and connection to autonomic dysfunction. Would love to hear any personal responses with flushing and blotching and reactions to high dose antihistamines/zyrtec. Been on the Mastocytosis Society website, DINET archives, and pubmed, now looking for personal experiences. Thank you for your input and thoughts on my current episodes. Lyn
  2. Does anyone know if small fiber neuropathy and autonomic neuropathy are the same thing?
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