Any Orthostatic Intolerance Involved in Ehlers danlos Syndrome? - Rare Disorders Message Board

gillian30 · 06-12-2003, 01:21 AM

Hi,
I'm a 30 y.o. female, recently diagnosed with POTS and neurally mediated hypotension, as well as dizziness, motion intolerance, and pain in back while walking. While this has not yet been determined to be Ehlers danlos, it may be. I have read that orthostatic intolerance such as a fast heart rate is a big part of it. Anyone out there experience this?

stellakitty · 06-12-2003, 11:11 AM

Okay, now I'm scanning rare disorders also to find posts on POTS. I read some info that indicated the orthostatic intolerance is a part of enhlers-danlos, OI is a symptom in many syndromes. Did you contact the NDRF, National Dysautomia Research Foundation (sp)? You can get their number off of the web page, they sent me a ton of info on POTS and related syndromes.
Angie