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Everything posted by TCP

  1. I read this: 'The parasympathetic nervous system is responsible for the body's rest and digestion response when the body is relaxed, resting, or feeding. It basically undoes the work of sympathetic division after a stressful situation. The parasympathetic nervous system decreases respiration and heart rate and increases digestion.' I guess it means it is reacting more?
  2. Is this about infusions or how much fluids you drink? I drink 3.5 litres per day as advised and up to 10gms of salt via food
  3. I get them after eating sometimes. I only eat small meals, low carbs.
  4. I have two Omron and my Drs use the same. Feel they are pretty good.
  5. Cutting out stodgy carbs and eating smaller meals helped me so much.
  6. Very interesting. I developed neuropathic pain all over 13 years ago as the dysautonomia and POTS progressed.
  7. Hi. Sorry you feel that this was all a waste of time, effort and money. I became ill with fatigue issues after Glandular Fever and surgery in 1984. Felt awful for 8 years until I got an diagnosis of ME/CFS. Symptoms waxed and waned over the years and improved when I started to eat more healthily. I got fitter and lost heaps of weight. Then in 2007 I had symptoms of whole body neuropathy, POTS and autonomic dysfunction. Put on Gabapentin and Nortriptyline. Then finally got diagnoses of Ehlers-Danlos and POTS. I didn't have ME it was always EDS and POTS. Many friends with ME/CFS and Fibromyalgia
  8. https://healinghistamine.com/histamine-intolerance-symptoms/
  9. The change in diet has been the best thing for me. Yasmina Ykelenstam with her Low Histamine diet was the best help. Google her to see her website.
  10. I've got more bulging veins now that I had a few years ago. I have them around my anus (TMI), hands, feet and arms. They can get very painful.
  11. Lying down levels everything out, no blood pooling.
  12. I've decided to go for some Osteopathy once I can leave my home.
  13. I was diagnosed late in life, five years ago. I saw a really good specialist for a few years and he was really interested in exploring everything about POTS. He left for a post overseas and his replacement was lovely, too, but only stayed about a year. Then another specialist came on the scene and he seemed less tuned into POTS. My breathing was getting worse and so he decided to send me for some tests. The only thing that showed up were things I already knew that I had. I had a follow-up telephone conversation with a nurse and she got back to me later and the doctor wanted to sign me off. The
  14. Thank you for your replies and I can identify completely with what you are saying. My neck isn't in great shape but years ago it was my lower back that was the biggest issue. I have a Dowager's hump and C5-C7 issues of stenosis. I have been receiving physio advice over the phone about gently exercising my neck. I have also looked into trying to treat the hump as that is uncomfortable, too. I am wearing a brace for 2 hours per day at present and using 2 balled socks to gently press onto the spiny hump when lying down/high-backed chair, and doing chin tucks at the same time. I am doing this very
  15. It doesn't help me - makes my nervous system buzz
  16. Yes, I get some problems when wearing (particularly tight) compression garments. I am guessing the pressure one end causes pressure at the other. This is the same way when I get constipated I get bad headaches and eye pain.
  17. MVP seems to be a feature of Ehlers Danlos
  18. Hi. Sorry to hear about your breathing. Mine got worse over this past year and the cardiologist sent me for an echocardiogram, xray, blood tests and spirometry test. All came back OK, I think, as I haven't seen the cardio yet to discuss the results. I started off with Epstein Barr Virus, which gave me Glandular Fever back in 1984. I never felt well after that as I had surgery around the same time and that didn't help. Eight years later the label ME/CFS was attached. Fast-forward to 2007 then POTS and neuropathy came on suddenly. Since then I have had the diagnoses of POTS, Ehlers-Danlos ty
  19. If I get up fast my vision goes black and I fall and sometimes I can walk a few metres and then I go dizzy and start to go. It really depends on many factors.
  20. I take a probiotic daily. I think it helps my gut. It took about 3 months to notice any difference.
  21. I am one of the oldies that checks into this forum. I have EDS 3, POTS, MCAD, scoliosis, cervical stenosis, neuropathy, secondary adrenal and thyroid deficiencies, IBS, gastroparesis and lots of other issues. I have increasing pain in and around my dowager's hump on my upper back. I am deteriorating fast, with worsening nausea and weakness (especially in my arms and hands), POTS worse/autonmic dysfunction, and my gut (bowel) is being affected, too. I am hoping to see my GP tomorrow to get re-referred to the rheumatologist. Has anyone else had similar issues? Thanks in advance
  22. She sounds like a complete a*******! I would have been livid with her dismissive attitude and tone. She doesn't know what to do to help so is fobbing you off. She's not helpful or the right person to have around you as she clearly is on another planet! I would put in a complaint if possible, but if not you are well shot of her.
  23. That is low and you need to tell your doctor. I went completely off my legs in 2007 when it got as low as 65/32 the hospital ignored it until I saw the neuro who said that should have raised alarm bells. Keeping hydrated helps
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