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TCP

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  • Birthday September 12

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  1. Make sure you don't have any stimulants like caffeine before bed and no exercise. Stress and anxiety make them worse so try and wind down well before bedtime. I used to get them a lot but I'm more relaxed these days. Meditation may help.
  2. Yes there is a link between the two. I think there have been some studies into it that can be found online.
  3. So you need to see a cardiologist electrophysiologist? Some doctors specialise in dysautonomia with neurology, too
  4. I only way that I knew that I had a CSF leak was being able to taste salty water in my mouth. I'd had an apoplexy from a pituitary tumour.
  5. Hi, I am sorry to hear that you are going through this as I know it is not pleasant at all. Yes, I had this in 2007 when the POTS symptoms really took hold and my HR and BP went very low indeed, at one point my BP was 65/32 and I couldn't walk. I also developed neuropathy at the same time. I had lots of brain zaps as I tried to sleep and I mentioned it to several doctors in A&E but no one took any notice of me. For a short time I even had hallucinations. The more stressed I got the worse they became. I had finger and limb jerks around the same time. After a while they settled and I was put on Gabapentin and Nortriptyline which helped me a lot. I had to calm my body down and decided I needed to do something and looked for guided meditation and it really worked for me. After a few weeks things did get a lot better. I had been so stressed that was feeding the fire and I was so anxious and worried about what was happening to me. The tinnitus was bad and I would hear screeching in one ear then go deaf for a couple of hours. I'm guessing it was because there was restricted blood-flow to my head. That improved over time. I wish you the best and if you need some advice etc just message me. By the way, the neurologists told me at the time that it was the way that I was thinking that was causing my symptoms. They were wrong as I went onto be diagnosed with EDS, POTS, neuropathy and I have many other related health problems.
  6. 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?
  7. 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
  8. I get them after eating sometimes. I only eat small meals, low carbs.
  9. I have two Omron and my Drs use the same. Feel they are pretty good.
  10. Cutting out stodgy carbs and eating smaller meals helped me so much.
  11. Very interesting. I developed neuropathic pain all over 13 years ago as the dysautonomia and POTS progressed.
  12. 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 are being diagnosed with EDS and/or POTS. PS. The deconditioning thing annoys me greatly as I was pretty fit prior to getting GF and having surgery. Many people I have chatted with online have been super fit and have developed POTS.
  13. https://healinghistamine.com/histamine-intolerance-symptoms/
  14. 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.
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