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roseannecl@gmail.com

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Everything posted by roseannecl@gmail.com

  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. This happens over a course of maybe 2 or three weeks once it seems to click into getting better. I never know when the rug will be pulled from under me again though and when I'll spiral into disaster. Longest good phase I've had in a row was 6 months.
  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 this once as it woudn't work again. I don't know what it did but it definitely did something. Normally my resting pulse wouldve been anywhere from 100 to 130 , even 150 after eating at that time.My BP was always low at this pulse. After the accupuncture however my pulse fell of dramatically and my resting pulse became 45 to 55 but my BP didn't rise at all and I felt atrociously ill. It continued for around 6 weeks . I felt like my body had had its engine removed which I always thought would be a good feeling but it really wasnt. I couldn't respond physically to anything...conversation, even hearing some very bad news about a relation. I was very upset about my relation but my body just wouldn't rise to the occasion to let me get upset. My pulse continued along at 50bpm at highest during those weeks and I couldn't eat or talk for more than a min or two to my mum not to mention get out of bed or near a shower. I felt really deathly. It was a nightmare! I rang the accupuncturist who told me this was the healing crisis and a very good sign but I felt like I was going to die after it so I never returned for another session. I don't mean to put you off but that was my experience. Obviously its not a universal POTS experience but I always appreciate hearing good and bad stories so I hope you don't mind me sharing it.Good luck with it if you do try it.
  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 increase water retention in the body perhaps the water retention is increasing our blood volume and making us feel a bit better. I've also read that progesterone, which is the dominant hormone during this phase, increase blood pressure. I think I've read here before too that oestrogen is a vasodilator which might explain why we feel worse for the first days of our cycle as that hormone begins to built from then. I could be wrong about all that of course. I'm no biologist! Whatever it is though I'd love to know. Glad I'm not wholey alone with feeling that way.
  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 LDN either for POTS , MS. Cancer, CFS or any other illness ? If so do you feel it helped and did it affect your POTS in anyway negative or positive? I'm very interested in hearing good or bad stories. If anyone has one I'd be very grateful.
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