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About TCP

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  • Birthday September 12

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  1. 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.
  2. I just don't feel so good.

    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.
  3. Gastroparesis question

    The blog lifewithchiari is good to read.
  4. Magnesium!!!

    I think magnesium is pretty important stuff!
  5. what caused my POTS?

    Could an intolerance to medication be caused by mast cell activation? I have strong reactions to meds. Do you have allergies/intolerances?
  6. migraines

    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.
  7. Microscopic Haematuria

    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.
  8. What's next after propranolol?

    Systolic, diastolic and heart rate
  9. What's next after propranolol?

    Hi! I was on and off it over a three year period.
  10. What's next after propranolol?

    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 overheating. In the winter my torso is a fiery furnace and my arms and legs have to have layers of clothes to keep warm. If you need any help or advice or even a chat message me on here. I wish you well as I know all this can be scary at times. (PS I also have EDS, POTS and MCAS)
  13. I was referred to an immunologist.
  14. 10 years later...back again.

    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.