lifesaver Posted January 21, 2010 Report Share Posted January 21, 2010 I saw the neuro who specializes in dysautonomic disorders today. He was kind but best of all, understood the long, painful journey it took to finally get he diagnosis. He told me I have POTS, but with a question mark because I don't have the elevated heart rate when standing. My blood pressure plummets like a rock he said. I now have a treatment plan and see him in a monthmidodrine, 3 doses a day at 8, 12, 4 or similar spacing, take it before getting out of bedsalt everything and take salt tabletscompression stockings--I wear them and they help a lotBegin some basic pilates and very light weights. I am not allowed to walk until I get in better condition. Have to start very very slow due to my level of deconditioning.Drink fluids-2 and anything else I forgot-left the list in the car.He also put me on a dose of Topomax as a migraine prophylactic, said they are not being treated properly. But I start that 2 weeks after taking the midodrine.Going through my history--his resident took the history and dr. K went over it in detail--we discovered I have had symptoms of POTS at least since high school. He said mine got worse with every upper respiratory infection I had. Teaching really did destroy my health--kids bring so many germs to school. Strep throat and ear infections seem to have done me in. I wasn't lazy as a kid--I really did need to rest a lot.Got a lot of answers today---heaving a sigh of relief. The hard work is beginning, but the search for a diagnosis is over. I can cancel the MRI and QST scheduled next week--fewer medical bills!! Quote Link to comment Share on other sites More sharing options...
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