What Living With POTS Is Like

Hi guys just have a question about my last neurology appointment. So at my appointment she was doing the lay down and the sit and stand test for dysautonomia. My Primary care doctor did this before and my heart went from 60bpm to 125bpm.. i even did it at the ER and my bp and heart rate changed. But when the neurologist did it when I stood up she couldn't get a read on my heart rate or my blood pressure. (She also didn't wait a minute she took it immediately when I stood up bc I got dizzy) we tried this twice and each time I stood up she couldn't get my BP and my arm was turning like purple/blue so I sat down and everything was normal????? So she told me I passed. But she sent gave me a referral for the table tilt test. Any one else gone through this before???

She was also telling me that we could be catching he beginning/start of an autoimmune disease. I had tested positive for ANA. But my rheumatologist ER doctors and my previous primary care doctor (well my primary care also thinks it might be an auto immune disease and dysautonomia) believed it was dysautonomia. Then the neurologist also kept saying its long covid or some long viral thing after covid. But I don't think so bc this happened in end of November start of December and I was legit fine. Just feeling frustrated and this is indeed a long tiring journey of feeling ill.

#dysautonmia #AutonomicDysfunction #POTS #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS

I’m more new to my diagnosis, but I’ve had symptoms for a loooong time. Any potsies have tips for the summer heat? I live in the Midwest so the heat isn’t too horrible but I’m really bad with heat sensitivity and sudden temperature changes. #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #AutonomicDysfunction

Hey y'all! if you're new to the POTS diagnosis, or struggling with recovery, I CANNOT recommend this book enough. It's called "Tired Teens - Understanding and Conquering Chronic Fatigue and POTS" written by Dr. Philip Fischer. He explains the mechanism behind the symptoms, real ways to combat them, stories of patients, advice from nurses, what it's like to be seen for POTS, which medications are prescribed and why, and so much more helpful information. He is/was an autonomic specialist at Mayo Clinic, and just published it in 2021 as a compilation of his research and experience in a format that's accessible to anyone - you don't even need to take a class in medical jargon beforehand ;) It's also a great book to help friends and family understand the reality of the "invisible disability". I felt so seen and understood and it certainly was the kick in the pants I needed to get serious about exercise, water, and salt. Cheers!

#posturalorthostatictachycardia #POTS #LivingWithPOTS #ChronicIllness