Tilt Table and Rare Disease Day

I celebrated Rare Disease Day a bit early. Yesterday, in fact. How did I celebrate a day dedicated to raising awareness for rare diseases? By getting a weird medical procedure done, of course!

Yep, yesterday was my tilt table test. Although I had been diagnosed with dysautonomia before the tilt, this test was supposed to let me know if I needed a pacemaker or not. So I stressed, and I planned, and then… I didn’t need a pacemaker. Well, that’s not exactly right. I’m in a weird class of NCS/POTS where I could probably benefit from a pacemaker, but not enough to drop thousands of dollars on surgery. So it looks like I’m right back where I started from- being a medical zebra and utterly untreatable. Oh, and eating tons of salt.

How did you spend rare disease day?

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3 thoughts on “Tilt Table and Rare Disease Day

    • The cardiologist is afraid it would only stop my syncope- not all my other symptoms. That’s happened to several patients and is the reason he’s hesitant. For now I’m back on midodrine and florinef, which…sucks.

    • Whoops, I read that wrong- sorry, I’ve been out of it since the tilt! I have several heart things going on besides just NCS/POTS…some type of constant tachycardia. The pacemaker should put my heart back down to a normal level for that, but it might not fix the POTs/NCS or it might make it worse. The syncope is being triggered (maybe) by constant, insane tachycardia…or maybe not. Who knows anymore.

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