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About MomtoGiuliana

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  • Birthday 08/16/1968

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  1. When I am in a flare I have body aches. Sometimes it can really be severe. I think also when I am in a flare I am more sensitive to pain. Does salt and fluid help? Usually that helps me to feel a little better at least.
  2. I'm pretty sure my grandmother had it, undiagnosed. My mom said she was fatigued a lot, prone to fainting or feeling faint and had no tolerance for heat in her 30s and 40s especially. She had periods in her life where she was lying down during the day, daily. Never diagnosed. For some reason, if it is genetic in my case, my mom was never at all affected. I have 3 sisters but I am the only one with POTS.
  3. I was thinking this too after reading an article this weekend. Although I do wonder if post viral POTS is already far more common than the medical establishment realizes.
  4. Here is our list of specialists. I believe some do consult by phone (in the US--I think you may not be in the US) and of course more are doing consultations by zoom etc due to the pandemic. https://www.dinet.org/physicians/
  5. When I have severe POTS flare up fluids and salt orally only helps a bit. I have found that IV fluids 2-3 times per week helps a great deal more. Digestive symptoms are quite common with POTS. I agree that any viral infection can trigger POTS and it can be an infection that itself seems mild. My specialist has said that any inflammation can potentially trigger POTS.
  6. Here is our list of specialists: https://www.dinet.org/physicians/
  7. Yes, after a very bad year long bout of severe and disabling POTS, I improved. It was about 4 years until I became essentially symptom-free (by that I mean very minor symptoms, I was able to generally lead a normal life). I very occasionally had small flare ups over a 15 yr period after that. Then I had a very severe flare up 2 years ago and was sick for 2 months (unable to work). Dr found my B12 was low. I guessed that was the trigger but my specialist didn't think it was related. Then 2 yrs later I had another bad flare up. I just recently recovered from this. It was about 6 weeks o
  8. I remember you too! Nice to see you here again although I am sorry you had to come back. I hope you get relief soon.
  9. I've had episodes like this and I was told anxiety or panic attacks but I think for us w POTS it may be more complicated than that. However, I am over 50 and been having these symptoms usually in pattern of flare ups since my late 20s and it has only gotten better and less frequent over time, so I can only assume it is POTS and is essentially benign. Increasing fluids and salt always helps me when I get into a flare, and can help reduce these symptoms. Also IV fluids. Sometimes it is triggered by an infection--eg UTI. Often worse before my period starts. I hope bc of these symptoms t
  10. Whenever I am in a flare I lose weight.
  11. Thank you for coming back and sharing your experience. So glad to hear that you are improved!
  12. Our physicians list includes doctors in the UK. Not sure if you'd be able to see any of them but you may want to take a look: https://www.dinet.org/physicians/
  13. So sorry you experienced this set back. Setbacks are so frustrating and frightening. That is such a good point not to burden ourselves further with questioning why--especially "what should I have done differently". I agree that so much of the time the flare up or set back is not connected to anything we probably have control of.
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