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Mast Cells And Dysautonomia


DoozlyGirl
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Those with Confirmed or Suspected Mast Cell Disorder  

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I haven't been diagnosed with pots but diagnosed with chronic dysautonomia..... but i have all the symptoms of hyper pots..... but i also, (i do have mcad, diagnosed) have been thinking the same thing.... wandering if my mast cells are doing the most triggering of symptoms..... im still trying to piece together my puzzle..... because no matter what im trying, nothing is still working and i've been down 2 and 1/2 years mostly bedridden..... ugh, this is getting so hard :(

thanks for the poll..... :)

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Hi hil,

The more I learn about mast cells and the 300 plus chemical that are released during degranulation, the more excited I get with this possible explanation. I've read, whacky mast cell and release of their mediatiors could explain severe environmental sensitivities, goofy BP, abdominal issues, sinus issues, brain fog, headaches, vertigo, lightheadedness, tinnitus, rashes, fatigue and the list goes on. Maybe you need different meds? Your H1 seems lower than the doses I've been reading about, but I am so new to this.

It is pretty tough to sort out the Dysautonomia from mast cell symptoms, and at some point maybe it doesn't really matter, which came first, the chicken of the egg. Not sure yet.

Hope you can figure out some things and get out of bed. I know I was bedridden for 9 months and it has been the hardest struggle of my life being able to function minimally again.

Best wishes, Lyn

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Am I the only one on here without a POTS diagnosis (got autonomic neuropathy), who is chasing down a possible mast cell diagnosis??

well, i don't have a pots diagnosis, but id say i would be hyper pots if i found the right testing.... my 2 tilt table tests: one was inconclusive, the other was done wrong. I had to chase down that mast cell diagnosis and it came after long talks, etc with my rare case doc. I responded to meds for it right off. Right now, im at the point of, i don't know which is causing the most problems/issues of being bedridden and all these symptoms..... i don't know if its the mcad that's the number 1.... or if it's the DYS that's number 1.... the CFS, is right along right there with those 2..... could they all be one in the end? i just have no idea.....

but there are others on here trying to piece the mcad...... it was here that i figured that one out on my own and presented articles, stuff on here, symptoms, etc to my doc and thankfully he was right on the bandwagon and it made perfect sense to him. I responded immediately to doxepin but had to stop taking it after 5 weeks.... now i stay on the zantac/zyrtec combo, but im beginning to think it's not 'powerful' enough to suppress all these symptoms..... and there are sooooo many symptoms that just keep me debilitated.... ugh :(

keep at it but don't overload yourself in thought and research..... if i overload the brain in trying to 'figure all this out', it's a downward spiral for weeks, so i give myself breaks in researching and reading and looking things up...... plus my poor brain is just kaput anymore :(

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Hi hil,

Since you have 2 marginal TTTs, have you documented elevated HR on standing with home BP machine? The folks on several mast cell related websites are pretty convinced that POTS/other autonomic symptoms/CFS/Fibromyalgia are/can be symptoms of a mast cell disorder. These home BPs could possibly be used as a baseline, to help you and your doc figure out when you reach a therapeutic level of your MCAD meds. On several posts, I've read that symptoms (specifically cardiac and GI) should begin to settle in then the rest of the symtoms with med tweaking. Have you thought of adding a second dose of your zyrtec?

Stay strong. Lyn

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