u/Awkward_Cupcake4791

so my blood pressure tends to run really low, so low my neuro was like “yeah you can’t take beta blockers”.

but recently i’ve started having hyperadregenic episodes. i don’t have the best neuro. he’s very touch and go and rushes me at appointments. also i only learned about subtypes because of another friend who has this, not because of him. im am going to try and access an actual dysautonomia clinic but..does anyone have this combo of subtypes? if so how do you manage this :’) the adrenaline dumps are absolute nightmares.

i saw this EDS doctor (as of

now i have hEDs, not genetically diagnosed) and in my appointment she had such dominating and weird bedside manner. she kept saying over and over how my face is “so thin and long”. she said that like 3x and then was like “i want you to get genetic testing”

fast forward and i google what that means for EDS and its potentially vEDS. i have some of the other physical criteria of vEDS and am just trying to not spiral before i even know what’s really going on. i’m getting the bloodwork done this month but results could take anywhere from 10 days to 3 weeks.

any advice is appreciated especially for being in the medical liminal space which has got to be my least favorite liminal space of all time.

group texts and just regular texts from friends. i'm not sure what to do here! i was going to email sunbeam and call my phone provider but if anyone can help save me the hassle and share what they've done / what has worked for them that would be sincerely appreciated! i've had my phone for close to 2 weeks now and have been hoping the issue would just resolve itself but that hasn't been the case.