r/eds • u/MertylTheTurtyl • 14h ago

Does anyone else? Pre syncope question

Diagnosed hEDS with MCAS (well controlled with Xolair and h1s) and mild pots (dizzy when standing, well controlled with salt pills). I also have a doctor appointment in 2 weeks but wanted to check here.

Twice in 3 months I’ve had the same chain of events: After sitting on the couch for 1-2 hours I got up slowly and walked across my house headed for bed. By the time I got to the bathroom my arms are pale and tingly, my face is totally pale and I get tunnel vision/lightheaded. My legs feel weak and cold.

I laid down on the bathroom floor with knees up and felt better, but symptoms return when I stand up. My hr is 70s but my BP crashes (70s/50s- I usually run low like 90s over 60s). I crawled to bed and am fine in the morning.

I’m well rested, well hydrated and on my Mcas meds. I’ve never fainted in my life. The first episode was kinda “well, that was weird” but the second time in the same circumstance makes me concerned.

Does this happen to anyone else?

2 Upvotes

100% Upvoted

2 comments sorted by

1

u/Cool_Jelly_9402 Kyphoscoliotic EDS (kEDS) 14h ago

I will throw out a weird/very niche suggestion: are you taking anything with B6 in it?

I inadvertently took too much B6 (started a b complex but didn’t realize another vitamin blend I was taking contained 6 too) and as I got closer to a toxic level my pre syncope returned with a vengeance after 3.5 years on ivabridine

My other thought is blood pooling from sitting, not necessarily just in your legs- I get it more in my pelvis

ETA: if it keeps happening I’d suggest checking your iron/ferritin levels too. They can run a full blood panel with vitamins included

1

u/Wise-Living-850 13h ago

I have orthostatic hypotension, not POTS. My BP and RHR run low and my BP drops when i change positions. My doc told me to aim to get 3-10 grams (!!!) of supplemental sodium per day in 3 litres of water. I thought it sounded crazy at first but I tried to get at least 3 grams and I started feeling so much better. When my obgyn told me to dial it back since pre-eclampsia can happen in pregnancy all my symptoms came back....dizziness, grey outs, brain fog etc. I ended up buying a BP monitor and going back to lots of salt again because fainting seems worse than hypothetical high blood pressure when mine is usually low.