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Everything posted by TCP

  1. I can't bend over as I get weak and lightheaded. I fall sometimes. I avoid it at all costs.
  2. I totally get this and understand your hurt, anger and frustration. Educate them the best way that you can and show them the test results and doctor reports. I print off things on the internet, too, if I want to explain certain things. I tell them about The Spoon Theory, too, as that may give people an idea of having to choose what you do and what you cannot do. Some people will remain blinkered and deaf to your words and that is their problem, as they cannot hack you being ill and their ignorance means they aren't interested to learn. They are doing a great disservice to you by speaking and b
  3. I only take it in food or it makes me feel sick. I use pink Himalayan salt.
  4. I have really vivid dreams and nightmares and this has happened since I got Autonomic Dysfunction/POTS. I wake up clenched up, feeling dizzy and sweating.
  5. I have neuropathy and compression tights or socks do hurt especially if on for some time. I had to wear thigh high after an op recently and I actually found them ok after a day wearing them. I think my body got used to them. I found this surprising and reassuring after trying different kinds quite a few times over the years.
  6. I use a cooling vest in the heat of Summer and keep the extra ice packs in the freezer so I have a constant supply.
  7. Changing my diet has been the biggest help with low carbs, vegan, no gluten or sugar or fruit. I eat low histamine foods and alkaline.
  8. Prof. Qasim Aziz is a professor of neurogastroenterology at Barts and The London School of Medicine and Dentistry, and specialists in disorders of gut function. I researched some years ago and I would have gone to see this man but realised in my case it is Mast Cell Activation/IBS and I am seeing an immunologist next month.
  9. Hi. I have autonomic dysfunction, EDS, POTS, Small Fibre Neuropathy and mast cell issues. TTT twice and conclusive POTS. I'm on Nebivolol for tachycardia. Diagnosed late in life. I don't black out too much now. Have constant nausea, dizziness etc.
  10. I've had this for years. My left pupil is always larger. It got worse when I took Cymbalta.
  11. I have a tight chest all of the time and struggle to breathe sometimes. About five years ago tests showed that my lung volume had decreased. It doesn't help that I have large heavy boobs!
  12. I have a macroprolactinoma, a tumour on my pituitary gland. They are mostly benign. Wonder if that is what you have? I had most of mine removed last year. If you need any info just message me. They should be able to tell you what it is. I see a team consisting of Neurosurgeon and Endocrinologists. I've been seeing them for two years now.
  13. https://www.dinet.org/forums/topic/13852-albumin-as-a-potential-biomarker-of-potsoi/
  14. How long have you had POTS ? I think signs of autonomic dysfunction came on after the Epstein Barr Virus back in 1984. I was wrongly diagnosed with ME/CFS 8 years later. Symptoms remained there and changed little until 2007 and then POTS came on with a vengeance along with Small Fibre Neuropathy (now linked to Ehlers-Danlos that I didn't know I had). Has the symptoms got better since you 1st got POTS as time went by? They've changed and I've got used to them. I am also on Nebivolol now and my HR is lower. I think it helps. The problems with pain, digestive issues, and allergies
  15. I tried Propranolol and Ivabradine. Not great. I'm on Nebivolol lowest dose really helps.
  16. Hi. Mitral valve issues can be linked to Ehlers-Danlos, which in turn is linked to POTS. I know of lots of people with POTS who get seizures, too. I get the shakes and temors a lot. When they flared up I was hospitalised several times. I hope you can get some help soon.
  17. Adrenaline surges sounds like it to me. Very common with POTS and they can happen at night. Mine came on worse if I'd been overdoing it and if I was overtired, stressed or anxious.
  18. I have neuropathy all over and I also get a tingling and then numbness on my left side. It feels weird. I have mentioned it to doctors over in the UK but no one seems interested. It happens to me when I am sitting or lying down. I have no idea what causes it.
  19. Hi everyone and many thanks for your replies. Sorry, I took so long to get back to you but I didn't get any notifications. I think I will try and get to talk to an anaesthetist and may request that I do so when I have my pre-op assessment next week. I have had 6 surgeries before but when I was classed as having ME/CFS and the health problems got worse after my last surgery in 2006. I am guessing that it will be a few weeks before the op and hoping it doesn't get cancelled. Thanks again!
  20. It can take on average 10 years to get a diagnosis of Mast Cell Activation or Histamine Intolerance. Yasmina Ykelenstam had many negative results over the years before new doctors said she'd got it. Even after fairly obvious reactions to skin prick tests for allergies she wasn't given a definite diagnosis. I know I have histamine issues and quite dramatic reactions to foods etc. I get super huge lumps after bites and yes, it does make POTS worse.
  21. In the heat I just wear my knickers and maybe the top sheet over my lower half. I'm too hot for any clothes. I have the window open or the fan on. I sometimes wear my cooling vest up until bedtime and the icepacks in it keep my abdomen cool for ages. If my feet are cool it helps and I use a freezing/cooling gel for that.
  22. I take sublingual B12 Methylcobalamin 1000µg. I also take a vitamin D for pain.
  23. Google it there's a lot of information about dunking your feet in cold water in order to cool down. I also have Small Fibre Neuropathy, so my feet burn all the time and placing them in cold water can bring real relief on a hot day. 'Your feet are another one of your body's quick-cooling spots. So relax, and soak your feet in a bowl or tub of cold water in order to cool down fast.'
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