TCP

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About TCP

  • Rank
    Advanced Member
  • Birthday September 12

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  • Gender
    Female
  • Location
    UK

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  1. 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)
  2. I was referred to an immunologist.
  3. 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.
  4. I took CBD and it didn't affect the POTS symptoms.
  5. What's 23 and Me testing? I have never heard of it over here in the UK.
  6. Yes, it's about management and it doesn't fully eliminate MCAS/MCAD unfortunately.
  7. Could be Mast Cell related or histamine intolerance.
  8. 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 and that will never stop. Many doctors have never heard about EDS and POTS and that is down to them not covering them at medical school. Don't give up.
  9. Anyone in the uk ?

    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.
  10. Is this POTS?

    Yes, sounds like POTS. I hope you get a tilt table test and diagnosis.
  11. 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.
  12. Scary Table Tilt Test

    Sorry to hear that you had such a tough time. I would also consider Mast Cell Activation on account of the rash.
  13. Thanks everyone. I had the Synacthen test to see if my adrenal glands are working OK. Alas I have secondary adrenal insufficiency, so I have to stay on the hydrocortisone tablets and I have an emergency injection kit in case I have infections/flu etc, an accident, surgery or shock etc. It is vital. I am also to wear a Medic Alert bracelet in case of emergencies. It's all a bit of a shock really. I have my MRI in September. The visits to the pituitary/endocrinology clinic will be once or twice yearly for the rest of my life. Thanks to everyone who replied.
  14. Thanks, guys! SonM, yes a bleed into it may well have killed it. If that is the case it may just disappear. I have to have another MRI soon to see what is happening. POTS could be causing the problem as I feel better when lying down. I hope you can find some answers. Wishing you both good health!
  15. Trouble breathing?

    Hi I often wake up gasping for breath during the night. I did it this morning after 4 a.m. It can be pretty scary. I opened a window and drank some water and it took me a while to get back to sleep again. I have EDS, POTS and possibly Mast cell issues. I was at one stage stopping breathing whilst asleep and was checked out for sleep apnea. It did settle down after a while thankfully.