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Everything posted by worththewords

  1. I have been pretty stable for awhile with my POTS but in November I ended up getting mono and since then I have had a bunch of new POTS symptoms. I don't think my original POTS was caused by anything post viral but I definitely think this particular flare up was caused by the mono. My current cardio/neuro believe it to be the same but they just aren't sure what to do for me. I recently had a holter monitor and my HR is all over the place - more so than usual. They wanted to prescribe something to control that but they are running out of ideas. Are there any medications that have been better f
  2. If you are going to go to Mayo Clinic Jacksonville I would highly recommend seeing Dr. Fred Kusomoto instead.
  3. Just curious on the latest on this medication.. I know it still isn't available in the US and Canada but just wondering if anyone was able to get it anyway from their doctor? I know there are ways around those things. And for those in the UK and Australia.. Are you still finding it helpful?
  4. I highly recommend Dr. Kusomoto at Mayo-Jax. I saw him and he was fantastic! If you decide to see him, make sure your actual appointment is with him and not someone else. You may need to ask a previous doctor for a referral.
  5. My POTS acted up once at 16 weeks (fainting episode) and then when I got to 34 weeks my resting heart rate was in the 120-130's. I ended up having a c-section at 38 weeks because of that. I was really just told to take it easy and rest as much as I could. I felt extra tired since my heart was running a marathon without the rest of me. I can't take BBs but it was briefly looked into a little more to see if there would be some benefit. Is your cardio working with your OB? Maybe they could talk. It sounds like you are doing everything else right. If it helps, my daughter is 10 weeks old now and
  6. What a beautiful little girl!
  7. Congratulations on your baby girl! I'm glad you had a positive experience. I'm having a c-section next week so you couldn't have posted this at a better time! It's very reassuring so thank you for sharing. I hope your incisions heal up quickly.
  8. Mold isn't good for anyone, even worse if you have allergies. I don't think it would cause POTS, however, it may contribute to you feeling more symptomatic.
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