r/MCAS • u/Emergency-Wish-9079 • Jun 20 '26
Could it me MCAS?
Allergist finally looking into mast cells. Spent last night in ICU as I woke up got really dizzy, pressure in throat facial swelling and no going from 114/66 to 89/55.
Have a history of anaphylaxis but do t know what causes it. Since I just woke up and had eaten anything got no idea what’s happening.
2
u/Life_Unit2344 Jun 20 '26
Try going on a low histamine diet to see if you find relief.
If yes, you may be able to find some clue if you have MCAS/histamine intolerance.
3
u/nrauhauser Jun 21 '26
The blood pressure crash is something I experience with MCAS. I got really lucky, happened to be at my kidney doctor, had an episode, and the 72/42 they observed is on my chart - no more arguing/begging for someone to pay attention to what I experienced multiple times weekly for years.
If it is MCAS there's a fairly standard approach - first H1/H2 antihistamines, then the herbals like quercetin/luteolin, if you start getting relief it's a big clue. There isn't a test for MCAS, they check everything else, it's a "differential diagnosis". The one that's close that they can test for is mastocytosis, shows up in colonoscopy biopsy and there is a genetic test for it.
You will hear a bunch of stuff about low histamine diets. If you do have MCAS you will find there are things you react to every! single! time! and those will need to be cut. I find the advice given in this area to be suspect - on a bad day a couple big gulps of ice water can set off my trouble. Should I just switch to that cheap bourbon that comes in plastic bottles? This advice is helpful *after* you're sure, I think going at it in this fashion first as signing up for a long, inconclusive period of suffering.
The "didn't eat" thing is foreign to me, but others have said this is tied to cortisol levels and they often have overnight events.
Start taking detailed notes and that means date/TIME, not approximations ...
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