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TCP

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Everything posted by TCP

  1. 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.
  2. 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.
  3. 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?
  4. 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
  5. I get them after eating sometimes. I only eat small meals, low carbs.
  6. I have two Omron and my Drs use the same. Feel they are pretty good.
  7. Cutting out stodgy carbs and eating smaller meals helped me so much.
  8. Very interesting. I developed neuropathic pain all over 13 years ago as the dysautonomia and POTS progressed.
  9. 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.
  10. https://healinghistamine.com/histamine-intolerance-symptoms/
  11. 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.
  12. 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.
  13. Lying down levels everything out, no blood pooling.
  14. I've decided to go for some Osteopathy once I can leave my home.
  15. 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 main reason for this is that they can't change my meds as I have tried most of them and I am currently on a low dose of Nebivolol so feel that they can do little more for me. This is all despite my telling her that my symptoms of dizziness, breathlessness and blackouts have worsened. I kind of feel abandoned now. My GPs know very little about POTS and if I need to get re-referred it's going to be a six month wait to see someone. Has anyone else had this happen to them?
  16. 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 carefully. The physio said I need to keep moving but not to the point of higher pain levels. The EDS in my case has caused the degeneration in my spine and compression and distortion of the spine is linked to dysautonomia. I am hoping that if the hump subsides then the neck will adjust. I have seen the Dowager's hump flatten down for some people. The bladder urgency and back cracking sound very familiar @Muon as does the pain, discomfort in legs/feet with standing. I also have mast cell issues. I think I need to continue to work on my spine as I don't want it to get worse. I have been eating a low histamine diet for some time and doing gentle exercise, but this is more targeted. I hadn't realised how long I have had a tortoise neck (bony neck hump and forward projecting head) until I saw photos of me in my early 40s and realised that was already happening. I hope your back improves for you. You are still young so there is a lot more hope. @nomdeguerre Having EDS seems to be the link for me and many people with EDS have spine and neck issues and also POTS and Dysautonomia. The whole pain thing is enough but having POTS related symptoms make it hard to bear. I'll let you both know how my regime goes.
  17. It doesn't help me - makes my nervous system buzz
  18. 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.
  19. MVP seems to be a feature of Ehlers Danlos
  20. 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 type 3, Fibromyalgia, Mast Cell issues, the a pituitary tumour left me with Secondary Adrenal and Thyroid Deficiency. I've just been diagnosed with Diabetes and Non-Alcoholic Fatty Liver. I don't say I have ME/CFS or Fibro anymore as I think EDS and POTS were the underlying conditions that gave me pain and fatigue. Sometimes it's hard to differentiate between the different conditions, that is hard. I wish you well and I hope that you get some help.
  21. 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.
  22. I take a probiotic daily. I think it helps my gut. It took about 3 months to notice any difference.
  23. 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
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