jenwclark

I'm new to this forum, although I've been poking around the DYNET website for several months. I don't have to tell you how wonderful it is to hear other people sharing similar experiences. The "You know you have dysautonomia when..." posts had me laughing out loud. Thank you so much! I'm in my early 30s, and I was diagnosed with POTS in January. I am able to take care of myself, but going out of the house is a major exertion, and I'm not currently able to work. Looking back, I had my first glimmers of POTS (fatigue and dizziness) about 20 years ago, but for a long time I thought I was just a bit lazy and unambitious. My freshman year in college, the fatigue got so bad I had to drop out of school, and after a year or so I was diagnosed with CFS. I puttered along with familial support, taking one or two courses at a time, and I did eventually finish my degree. Then, in the spring of 2004, things got significantly worse, and I started another round of visiting specialists. I was really lucky and saw a few doctors who took my problem seriously and really worked to figure it out. One of them ordered a tilt table test and gave me the POTS diagnosis. Since then, I've tried Florinef (which didn't do much for me), Inderal (which keeps my heart from racing, but doesn't help the energy), support stockings (which are wonderful, and let me do 2 or 3 errands at once instead of limiting myself to 1 a day), and I've just started Midodrine. Again, thanks for sharing all the wisdom. Spike

One thought on the fluids -- after every doctor I saw told me to drink more, I was blithely drinking a gallon of water a day and thirsty all the time. Finally, one doctor told me that that much water can act as a diuretic and actually cause dehydration. I now limit myself to 2 or 3 quarts of water a day, and a couple of glasses of Gatorade. On the toning -- I'm curious about that, too. Two years ago, my baseline bloodpressure dropped and my fatigue got significantly worse, at a time when I was in the best shape I've ever been in.

I'm a fan of online movie rentals. They let you avoid the uncomfortable and exhausting process of browsing the shelves at the video store. In the same vein, I use the library web site to request audio books. I can have them delivered to the nearest branch, and if necessary ask a friend to pick them up. I'm actually "reading" some things that are more ambitious than what I used to read in print, so at least I feel like becoming more cultured. The radio is one of my best friends. I particularly like the long format programs like Fresh Air or This American Life on public radio. They take me out of myself better than the typical news or music programs. They have archives available online. I am more in touch with current events than I ever was before I got sick. And sometimes, I just need to feel sorry for myself for a while. Good luck. Spike