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Everything posted by persephone

  1. I took 6 years to get my PhD instead of 3 but I now work full time as an Oxford academic.
  2. I've had POTS in some form since 1994 but wasn't diagnosed until January 2005. I still have it now. I also have EDS. It fluctuates though.
  3. Are there any more theories about connections between POTS and the kidneys? I never used to have trouble with my kidneys. I've always been one to drink a lot and wee a lot, but now I've just had my 2nd stone in 11 months. The pain was horrendous. I am only in my 20s! my bloods give no clues about why this is happening. I wonder if my kidneys are irritated by my super high salt diet, the EPO I take, and all the gatorade I drink? My Gran had low bp and kidney stones...is there a connection, do you think? Curious to hear others' experiences.
  4. Jenwic, I've experienced similar effects with different drugs. Remember thaT pots patients often have chemical sensitivities on a scale others can't imagine. I wonder if you need an incredibly slow and minute taper. I usually spend months and months coming off of drugs. My last nightmare was with Gabap[entin/Neurontin. I went into full blown withdrawal of the sort heroin addicts experience. It was terrible for a really long time. I am also wondering- has anyone checked your potassium levels? Florinef can lower this and could explain some of your symptoms. My grandfather ttook florinef for post
  5. I get this very rarely. It was made much worse in hospital after IV cyclizine for nausea- I could feel myheart vibrating so weirdly it really scared me. I'd love to know what causes it= very very strange indeed.
  6. The dream thing is especially relevant to me- I am writing a doctorate on dream visions and altered consciousness in Medieval Literature! (with a bit of luck, at any rate). I can always hear what's going on, but sometimes it sounds really far away. Even when I have no pulse and I'm not breathing, I can hear. But I'm shut away in my own world. I get thought streams rather than full on dreams- all sorts of things go through my mind- sometimes quite psychedelic things! But I always tell everyone who knows me and knows about the POTS that if I faint on them, they MUST keep talking- not necessarily
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