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I’m supposed to drink a ton of water/electrolytes to help with my orthostatic intolerance. I do, and it does make me feel better. But damnit I have to pee every 30 freaking minutes, which means standing up, which means orthostatic intolerance. GAH!!
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Just thought I’d put this out there on the internet in case any ME/CFSers had questions, what with Reddit going up in flames. I’m very fortunate to have been able to see Dr. David Systrom at Brigham & Women’s Hospital in Boston. I had the ICPET (invasive cardiopulmonary exercise test) done and was found to have both preload failure (a form of dysautonomia) and reduced systemic oxygen extraction (suspected to be due to mitochondrial dysfunction). If nothing else, it was an incredibly validating experience to finally get some abnormal test results. I’ve been on Mestinon for about two years now and it’s been somewhat helpful (not a miracle cure but definitely worth staying on). Feel free to ask me any questions at all about my experience with this doctor, having an ICPET, Mestinon or whatever else.
