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.

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