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persephone

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About persephone

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  1. Hi I'm new and looking for a knowledgeable and compassionate dysautonomia specialist in the UK. I live in Scotland where there do not seem to be any, and it is really frustrating to see people south of the border in England getting treatment for POTS/OI on the NHS. I tried to get a referral to see Prof Julia Newton in Newcastle but they will not accept referrals from Scotland due to funding issues. None of the doctors I have seen so far have heard of my condition or offered any treatment. Persephone, I may be mistaken but I think I read you are from Scotland and have been able to access treatments such as DDAVP and octreotide, which I would love to try. If this is so please could you let me know the name of your consultant and if they are NHS or private?

    Many thanks,

    B x

  2. I took 6 years to get my PhD instead of 3 but I now work full time as an Oxford academic.
  3. 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.
  4. Thanks for the replies. Lieze- yes, it was a tricyclic antidepressant prescribed for neuropathic pain. I was already taking tramadol and provigil (both serotonergic drugs) and the third addition tipped the balance into serotonin toxicity. It made me really unwell. I'm just glad it was caught in time.
  5. I'm just coming out of a nasty flare up following serotonin syndrome and a UTI that spread to my kidneys. I became a bit of a human spirit level, but am becoming more upright now. for about 7 weeks I've been extremely unwell; too sick to study and am at home with my parents. I reached a turning point today after being utterly spoonless for almost 2 months. What have you all found helpful for recovering from a flare up? I try not to push myself too far; to lie down when I need to, but make sure I walk each day and spend time upright. I try to recharge and put my energy into recovery. I take time away from the PhD I'm working on, and move back to my parents' because I become too unwell to cook or to look after myself properly when living alone. It totally *****, especially as I can be quite high functioning when I'm *not* in a flare up. I sometimes wonder if it's as hard as having no let up from symptoms at all - having a taste of normality, or POTS-free living that's then taken away, can be so painful.
  6. Does anyone else find that as they get older their flares last longer or are harder to recover from? I find the flares harder psychologically now than before, having had a taste of wellness and normality.
  7. Hi all, Thanks for the responses. Serbo- can you help me understand why I need to reduce my salt? Funnily enough, I've been craving and taking a lot of it- and today I haven't had as much and it's the best day I've had on the DDAVP pills so far.
  8. Hello all - long time no see! Have checked through past posts and not found anything on this specific query: Does anyone else get weakness or fatigue or brainfog on desmopressin? I started it 4 days ago and am sleeping on average 12-14 hours a night, and feeling so weak that I am supine the rest of the time I am awake. I've just had a 2 week hospital stay following a UTI which caused a massive POTS flare. My hydration went wonky; no matter how much IV I had- even one day having 6 litres, I still peed it all out and went into 'negative fluid balance'. The desmopressin means I don't spend my entire time in the bathroom, but I feel REALLY weak. Hard to tell if it's because I was flat on my back in hospital for days on end, or the desmopressin. I think the desmopressin is doing something weird though because my brain is so fuzzy. Any feedback, suggestions, or experiences would be very welcome. Thank you all
  9. Lieze it really sounds like your state of mind at the moment is not helping you. Can you print out what you wrote here and show it to your doctor? I really think this might be a sensible idea, so they can understand how you are feeling. None of what you have described sounds like pots or tachycardia to me but it sounds like you need someone to get to the bottom of what it making you feel so bad. Get well soon
  10. Lieze aren't you relieved you have a doctor who wants to get to the bottom of what's wrong with you? Look back at the posts others have written here- people who, even with a secure diagnosis of POTS, have had nightmare experiences in the ER with Doctors who have never heard of POTS. Do you know how lucky you are to have been treated so well, and have a Doctor who even knew what the initials of POTS stand for? Many folks here would give their right arm for a Doctor like the one you saw. As for it being coeliac/GI: WOW! If I could turn back the clock, and be diagnosed with something as fixable as coeliacs or another GI issue, instead of POTS- which, let's not forget, is treatable but not curable, I would be over the moon! Your biggest worry at the moment does seem to be the problem you have with eating, so I guess it would kind of fit that it's GI related. You say you're a 'nervous wreck' and scared of tests. What is it you're scared of? What is it that you want to happen? Do you want to be told that you don't have POTS, or that you do? Coeliac I know can make people feel lousy- my brother has it. But I also know that anxiety can heighten sensations all over the body, and you seem anxious in very many of your posts. I hope you can get the answers you're looking for and feel better soon.
  11. If you type pots and fibromyalgia into google, I'm sure that a lot of things will come up. Maybe give that a try? That can give a good sense of what there is.
  12. ps your mum has the right idea about not missing school. Try and have restful weekends to compensate!
  13. Hello! If you're 15 you are the right age also for a younger forum called Dynakids- Dysautonomia Youth Network of America (I think that's what it stands for- www.dynakids.org
  14. Don't even talk to me about BCBS. I had nightmares with them during my stint in America People mock the British system because we can't always choose which doctors we see, but at times like this, I see the value in our system: if your doctor said you needed a test, you would get it, no matter how much it cost. And it would cost you nothing. I wish I could help. I wish your system was more like ours. Can you appeal it? I know when I was in America I was told BCBS had an appeal procedure - if you pester them enough, and explain what you've explained here, could they just concede defeat? I met a lady in hospital in the US who had actually lost her house because of her health care costs. I find this truly terrifying. I wish I could change it, and make it better so you could get the care you need. It worries me every day- I still get flashbacks to what happened to me when my pots flared up in the US. I don't think I'll ever forget it. I'm rambling so will shut up! But, can you let us know you're ok, and whether you get this CT or not? Hugs
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