Upright

The tests at the Vanderbilt Autonomic Dysfunction Center were interesting. Everyone was professional and nice. The food wasn’t bad. I didn’t miss caffeine as much as I expected, nor did I get a caffeine withdrawal headache. First thing I did, though, was stop at Charbucks on the way home.

My resting heart rate is Olympian-athlete low. 50-55. When I stood for tests it went from 55 (supine) to 140-something. So I participated in 3 research studies while there. One was just taking blood, one was standing for an hour & blood draws/urine collection, & one was a bunch of autonomic nervous system tests like holding your hand in ice water for a minute, blowing into a closed tube, etc.

I’m supposed to eat 10 grams of salt per day but that is hard for me. I am eating a lot of it though. I also have a prescription & that is helping, yay, but I am still having some nausea. Not as much as before though, and I haven’t barfed since I started taking it. Fascinating, I’m sure. My pain level went down quite a bit once I started the prescription (child dose of beta blocker a few times a day).

My cardiologist said not to worry about the low heart rate. I had an echocardiogram & my valve leakage is within a normal range.

I’m still having what I would describe as crushing fatigue, though the medication lessened it a bit. I’m going to try more Magnesium and Vitamin D, since I guess at the EDNF Conference this summer it was announced that there is something goofy with that and EDS, on the cellular level.

A couple EDS-related newspaper articles:

Local woman hopes life of pain can educate about rare disease

Local woman moving to Belgium for healthcare

Still waiting for my accupuncture appointment.

Advertisements
Both comments and trackbacks are currently closed.
%d bloggers like this: