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About jared

  • Birthday 05/02/1966

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  1. I have a cane I keep folded up in my backpack for bad days. I highly recommend a light adjustable folding cane
  2. Many thanks, Nymph. I thought the microfiber would be intolerable, but I have a pair and the compression feels so good that I don't mind it at all.
  3. Many thanks, all, for the recommendations! This is extremely helpful.
  4. Like gjensen I had this intensely for about a year or so, but increasingly it is becoming less frequent. For me at least what seems to help is learning how to pace myself during the day and make sure I get 30-45 minutes lying down in the middle of the day. And (and this was the hardest as I was a night owl for many years) learning to go to sleep for the night before I was exhausted. In my case, at least, I have learned that a recurrence of the electric shocks and cardiac symptoms while falling asleep means I did not expend my spoons efficiently during the day and I try and make adjustments the following day.
  5. Hi, all! So glad to be here (although, you know, I kind of wish NONE of us had to be here...) I am a 49-year old man, recently diagnosed following a 1 year period of severe acceleration of symptoms (and who knows how many years before that with more moderate dyautonomia/POTS). I am fortunate to have a neurologist who recently came to my university from the Mayo and who is therefore very familiar with all of this. His recommendations familiar to this community: increase fluids and electrolytes (10gm of salt); raise the head of the bed 6 inches; compression stockings; and daily moderate exercise. I was hoping for advice for advice on the first 3 (my physical therapist got me started with exercises). 1. Fluids are easy to increase, at least theoretically, but I am struggling with the salt. Most of the high-sodium foods they recommended are processed foods which will ultimately do as much harm as good, and eating a relatively healthy diet means I am eating a fairly low sodium diet, making getting up to 10gm daunting. He recommended against salt tablets, so I am struggling to figure out how to get there. Anyone have any useful tips? 2. Raising the head of a kind bed is a bit of a challenge-- putting bricks under the legs as he recommended puts too much strain on the frame (and my wife kind of hates the bricks, which I get. Are there other strategies for getting elevation in a larger bed that have worked for people? 3. Compression socks/stockings. I started out with light knee-high socks and felt the benefits immediately: cramping diminished and I wasn't walking like a drunk. And they are nice socks: wool blend, comfortable and sock-like. But now the doctor wants me to raise the height to thigh- and waist-high and suddenly the options are much less appealing. They all seem to be made of nylon stocking material and not exactly fashionable men's wear. Ok, I'm really not that hung up on manliness and not at all on fashionableness, but the feeling of nylons on my skin is nails on chalkboard for me. Has anyone found any thigh-high options that are more sock-like? Or, if not, has anyone tried a combination of knee-high compression socks with athletic compression briefs? Many thanks for any thoughts or recommendations even if it means just telling me to suck it up and wear the stockings already). And thanks for bringing me into the community. I am looking forward to learning from you all. jared
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