Hi. Thanks for responding and thanks for all of your input. Wow, sounds like your body is really out of wack. I actually figured out the POTS first. One day I was SOB (short of breath) just from standing up and walking to the kitchen. So, I took my pulse and realized I was going from 60 to about 120 or greater every time I stood up. My ND (naturopathic doctor) confirmed that I have POTS by taking my pulse and blood pressure supine and standing, but I have not had a confirmed diagnosis with testing, etc.
It was the POTS research that led me to EDS, and that’s how I figured out I have EDS. At least I have EDS confirmed.
I went to emergency once because one side of my body was FREEZING cold and the other BURNING hot. My heart was pounding so hard in the burning hot side. I went to emerg. b/c I have never had my heart pound so hard on just one side of my body; usually it’s both. My veins were popping and I felt so ill every time I layed down. Anyway, the ambulance attendants hooked me up and said I had a bradycardia laying down, my HR went up to 75 just from sitting up and then over a hundred immediately on standing. Hello? Does this not indicate POTS or at least indicate that it should be looked into? They made me sit right away; I’m sure it would have went higher. And the Internist I saw about the Halter Monitor is the doctor from the hospital I was sent to! So is there no communication? Did she not read the ambulance report? She did nothing further, as the Halter Monitor came back normal.