Hard to sleep. Just find myself passing out from time to time. 5 mins to several hours. Ditto on what was here before except more dizzy, longer to recover and almost have to always nap and not just sit down to feel better. If I try to MW something, I'm usually shaking pretty uncontrollably by the time I get back to the couch. 10-30 mins of closing my eyes and staying still has helped. Haven't done much on my blog lately as it's hard to do much for long. Trying to get in touch with sister (after 5 years). Maybe that will work. I try to remain hopeful.
It all started with my falling down while mowing the yard. I was unable to get up even though I was not dizzy and could feel my body. I remember thinking I wasn't sure which way was up. After a few minutes, I recovered and finished the lawn. A few weeks later I fell in my garage, hurting my elbow, and decided to see my doctor. He sent me to a neurologist who said I had nystagmus, easy to fix with some barrel rolls. Nine months later I was cured. When I wasn't, I saw a heart specialist who gave me a tilt table test, which I failed. From prone to about 45 degrees, I passed out, which I never did before, and it felt like I was being electrocuted. Several specialists and 3 years later I got the MSA diagnosis. Today I struggle getting into a wheelchair so I can relieve myself every few hours. I'm sure I should be drinking more fluids but that just means going more often. I last now 1-4 hours (caffeine is not my friend) and can go as long as 8-9 hours at night. I don't dream I have this condition so when I wake I have to remember I don't need to rush off somewhere or I can't just stand up to go to the bathroom. Sobering.
Apr 07, 2009
Nov 12, 2013