Jump to content


  • Content Count

  • Joined

  • Last visited

Everything posted by TCP

  1. I agree the condition causes the anxiety. I read an article about this about five years ago saying the dysautonomia is a precursor to the anxiety. Doctors often come out with the psychological/anxiety stuff when they haven't got the answers.
  2. I have to do small tasks in bite-sized sessions and rest frequently. I'm a mess otherwise so have to be very careful. With actual exercise it's a slow build-up. The body can't take too much to begin with and over many months or even years to get the autonomic nervous system balanced again. Having said that it can vary so much from person to person. If mast cells are involved then exertion will make the body produce more histamine.
  3. I have EDS, POTS and Mast Cell Activation. All of the above symptoms and more. Hypermobility is EDS. I scored 7/9 on the Beighton Scale and I'm 57 now. Late diagnosis by the rheumatologist.
  4. The blog lifewithchiari is good to read.
  5. I think magnesium is pretty important stuff!
  6. Could an intolerance to medication be caused by mast cell activation? I have strong reactions to meds. Do you have allergies/intolerances?
  7. I've had migraine type headaches for years and they are, in my case, linked to my bowel. When my bowel is full or in spasm my head throbs. Latterly the migraines got worse and they were caused by a pituitary tumour. Once there was a bleed, I had a very severe headache and then it diminished and I have only had milder headaches since.
  8. I have had slight traces of blood in my urine for years and so far my GP's have not been that concerned. I only occasionally have a UTI and I really have no idea what causes it.
  9. Hi! I was on and off it over a three year period.
  10. I was on Propranolol and after a while it made me feel worse. I stopped taking it and started on Ivabradine. I was OK on this but stopped after a while as I got really sick and since I've been diagnosed with a pituitary tumour. The steroid for that has calmed some of my POTS symptoms but started up another set. Propranolol made the Mast Cell and/or histamine issues worse.
  11. I bought mine off eBay, but you can get them on other sites. Mine has removable ice packs front and back. Yes, I have considered air conditioning but decided against it as the units are quite big and wouldn't fit very well in my cottage, also you have to vent it out of a window, which isn't always easy or convenient to do.
  12. Hi. I am sorry to hear that you are having such problems. I have similar issues. I have autonomic dysfunction and peripheral neuropathy. I also have sweating issues. I overheat easily and also my limbs freeze in cold weather. The worst of my symptoms came on 10 years ago and for the nerve pain, I take Gabapentin (Neurontin) and Nortriptyline. I also have a fast heart rate. In the summer, I use a tower fan, drink lots of iced water and the best thing ever is my cooling vest which is a vest with ice packs inside it. I love my vest and bought it online and it is used all summer to stop me
  13. I am sorry to hear this. I hope you can get a doc sorted and you can ease yourself back into the exercise regime again.
  14. I took CBD and it didn't affect the POTS symptoms.
  15. What's 23 and Me testing? I have never heard of it over here in the UK.
  16. Yes, it's about management and it doesn't fully eliminate MCAS/MCAD unfortunately.
  17. Hi Sorry to hear about your plight. I had problems after Glandular Fever in 1984 and ten years ago it all got worse. I finally got diagnosed with EDS at the age of 53 and POTS at the age of 55. You're not alone as many people have a hard time getting a diagnosis and taken seriously. It is easy for doctors to say it is anxiety (psychological) when they don't have the answer. Ten years ago I was told it was the way I was thinking that had caused the whole body neuropathic pain and autonomic dysfunction. Of course I know that they were so WRONG! I educate everyone I speak to in the hospital a
  18. Hi. There's a few of us from the UK, so you're not alone. I've been on meds but not taking any for POTS at present. I drink lots of water. I've also got hEDS 3, mast cell issues and suffer from whole body neuropathic pain.
  19. Yes, sounds like POTS. I hope you get a tilt table test and diagnosis.
  20. Hi. I am sorry to hear that you are having such problems. I have hEDS, spinal issues and neuropathy. I currently have adrenal insufficiency and therefore the spikes of adrenaline have diminished, but I did have them every night. I found having a pretty flat pillow was easier on my neck and head. The sleep apnoea diminished once I started to use a nasal rinse and avoided sleeping on my back.
  21. Sorry to hear that you had such a tough time. I would also consider Mast Cell Activation on account of the rash.
  • Create New...