ooh, and it's used to treat ADHD? interesting! i need to pull up the paper about mast cell reactivity and bp meds, and get it to my cardiologist. I've been putting it off because I'm already a complex patient and don't want to seem like a crank. 😅
Replies
me trying to explain why 10 mg of propranolol is an indispensable part of my POTS regimen but 20 mg gives me hives but it’s NOT an allergy I NEED it
sep 1, 2025, 5:11 am • 3 0 • view
no kidding. 😭 just hoping we get confined research for new treatments + teaching people about it so they can start treatments sooner/not be stuck in mystery chronic illness land for decades (POTS and MCAS both, and ME/CFS in my case)
sep 1, 2025, 5:19 am • 1 0 • view
Me too, re: MECFS I think the recent research about increased collagen IV causing thickened endothelial basement membranes in MECFS ties together that, POTS, MCAS, and EDS really well (endothelial tissue dysfunction as a source of mast cell degranulation)
sep 1, 2025, 5:25 am • 2 0 • view
Yes! I'm very hopeful, and about the gene thing they did that shows the clusters that look promising for further research. There's a POTScast episode I just read that posits POTS and MCAS are the same thing, which was wild to follow the logic. but they and EDS and ME do keep showing up together....
sep 1, 2025, 5:27 am • 1 0 • view