TCP

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About TCP

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  • Birthday September 12

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    Female
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    UK

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  1. Hyper Pots & exercise

    Hi Jessica No, I won't have surgery and am on meds that might shrink it. Surgery would be last option. I've no idea if the tumour caused POTS, although there are people who have found a link.
  2. POTS or inappropriate sinus tachycardia??

    I have secondary adrenal insufficiency and some websites about Adrenals/Addisons/Adrenal Crisis mention adrenal fatigue.
  3. Hyper Pots & exercise

    Initially my cardio wanted me to do cardiovascular exercises. I wasn't so sure about this as I am pretty unwell and I've never really exercised. I started on the recumbent bike a few minutes a day and built up to an hour a day. My cardio wanted me to step it up, but as I didn't feel too well and the neuropathy and joint issues got worse. Then I found out I had a pituitary tumour and that has messed with my cortisol levels, so I cannot do any rigorous exercise. Now I do gentle stretching and I am trying to work on my core, as that is key to success with autonomic issues. I can do this without too much exertion. ~
  4. Regular seizures

    I'm sorry to hear about your daughter.I have heard about seizures with Chiari that is linked to EDS and POTS. I found this: https://www.epilepsydiagnosis.org/epilepsy-imitators.html
  5. I totally agree, as neurologists were pretty useless in my diagnoses. They either saw the problem as not in their field of expertise, i.e. cardiology or wanted to send me to the pain clinic.
  6. As above reply. That's what I thought. Check out Dr Diana Driscoll as she has fully researched this area.
  7. POTS or inappropriate sinus tachycardia??

    Constant stress is believed to cause adrenal fatigue and many websites dealing with the adrenals mention this as a condition.
  8. POTS or inappropriate sinus tachycardia??

    Yes, symptoms as stated.
  9. I have had adrenalin surges for ten years when my health nose-dived. I was getting sudden wakefulness, adrenalin surge, heart racing, dizziness and nausea. It would take a while for it to settle down each time. Then since I have had a pituitary tumour and I now have to have hydrocortisone as I am not producing the chemical to trigger adrenalin, I still get wakefulness but no adrenalin surge. It feels different and weird. I often wake up during dream-sleep or if I have been disturbed by a noise etc. I have read scholarly articles about wakefulness and sleep disorders in autonomic dysfunction. I did in, the past prior to a pit tumour, I had more wakefulness and adrenalin surges when I was anxious or stressed. I've found wearing wax earplugs has helped as small noises etc tend not to disturb my light sleeping as much. My cardiologist hasn't really responded to me mentioning this at all.
  10. I need help.

    Hi. I am sorry to hear that you are having so many problems. I am also sorry to hear that the docs are saying that you have anxiety and that is causing your symptoms. Neurologists said to me that it was all psychological. I know different now. To me, it sounds like autonomic dysfunction and could well be POTS. A tilt-table test is the only way to check this out. There could also be some mast cell issues as some of your symptoms suggest that this is the case. The breathlessness, tachycardia and gastroparesis are all linked to autonomic dysfunction. You don't necessarily pass out with POTS, only if you get Neurocardigenic syncope. My symptoms started after Glandular Fever and I was eventually diagnosed with ME/CFS. In more recent years I have been diagnosed with Ehlers-Danlos (The underlying disorder), POTS, neuropathy etc and may well have mast cell issues because of allergies and intolerances. They are all linked. I am often deficient in vitamin D. I get very breathless and cannot tolerate exercise etc very well. I have tried beta-blockers and Ivabradine (it upset my IBS) and I am now on Nebivolol to see if it helps with the flushing, fast heartbeat etc. So a tilt-table test would maybe help you and looking into other possibles as I have listed. Good luck, as I know it takes time to sort out. I also think some relaxation therapy like meditation can help a lot and not pushing too hard when trying to do tasks. I also suggest a warm, not hot, shower and then cooling the water at the end. Maybe the cannabis is best left unless you are taking CBD.
  11. Anxiety

    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.
  12. 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.
  13. 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.
  14. Gastroparesis question

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

    I think magnesium is pretty important stuff!