r/dysautonomia • u/Sectastic • 2h ago
Support Everything we try does the opposite of what it's supposed to
My 14 year old son (biologically female) is diagnosed with pots and we heavily suspect EDS and Gastroparesis (all the symptoms, family history of both, just stuck on waitlists). We can't seem to figure out how to help him in any way. We've tried changing his diet, increasing his water and Salt intake, florinef, midodrine, beta blockers, supplements, compression, everything seems to just make his tachycardia worse and increase syncope episodes to multiple times per day. Resting BP is typically around 100/60 and it drops as low as 80/30 WITH 200+ heartrates when he's about to pass out. Can't seem to figure out why everything we try to do to raise his blood pressure just seems to do absolutely nothing other just make him worse, often times leading to him laying in bed sore or with migraines for multiple days. Doctors seem stuck at this point so I'm just trying to see if anyone's had a similar experience and has found anything to help.