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About roseannecl@gmail.com

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  1. yeah seems to be the case. It's odd. The opposite seems to be true for me. When I go through really bad POTS phases I find the only thing that helps is intense rest. I'm generally completely bed bound with the severity of the POTS symptoms. During those phases, which can last 6 months, if I try and do anything, my POTS gets worse for weeks and I get very violently ill to the point of not being able to eat at all. Yet after complete solid intense rest for months the symptoms do eventually abate and I become semi functional again,.ie able to shower, get around the house and outside occasionally
  2. My experience was not so good with accupuncture. I hate sharing it as it might be totally unrepresentative and I don't want to scare you.I had accupuncture once a few years ago and I had a very bad reaction to it. I only went once and I had a half hour session. Within around 3 hours of it I was feeling very nauseous and light headed and shivery. I was really thoroughly ill. I went for it for CFS and for severe POTS,NMH and NCS. I had quite a high heart rate while I was at the session and the lady who did it said she could do one needle to help with this but that she would only be able to do th
  3. Hey Naomi. Delighted to see you say this as I always thought I was the only one this happened too. I always feel better the week before my period and for the first day of it and then I plummet and hit bottom for 2 weeks after this. From day four to day 16-17 are always the worst days of my cycle. I've always wondered what it is that makes me feel better for those pre period days. If I could somehow simulate that same hormonal response I have the week before my period I'd keep it going all month round. The only explanation that makes some sense to me is that maybe as pre period hormones increa
  4. Thanks Dsdmon. That's good to hear. I haven't come across anyone with dysautonomia who has taken it so far. It's heartening that has helped one person and just as importantly that it hasn't adversely affected her! I'd give it a go in the morning if I felt at all confident that it would not make the POTS and associated dysautonomia symptoms worse as they are so disabling and sickening . It does sound too good to be true doesnt it Leanne? I know people who have tried it for MS and Rheumatoid Arthritis and found it wonderful though. I suppose we're all looking for miracles here
  5. Hi Everyone , I'm new here but have been reading this forum for ages and it's ace! have severe POTS, NMH and NCS and CFS. I have found no medication that I have been able to tolerate with the result that I've spend the last 9 years alternating between being housebound or completely bedbound. Lately I've been reading on some CFS forums that alot of people have found LDN has helped their stamina and fatigue. I'm very tempted to try it but given that I've had to be hospitalised with reactions to various POTS meds in the past I'm now very nervous of taking anything at all. Has anyone here tried LD
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