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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Anyone else with POTS?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Anyone else with POTS? › Reply To: Anyone else with POTS?

January 14, 2012 at 5:21 pm #1673
Dr. Diana
Keymaster

I have POTS and one or more of my kids may have it also. Last week, I sent my youngest son to school with my new iphone, Garmin chest strap and Digifit Icardio heart rate monitor running on it and I picked it up at noon. His heart rate was high and had wild swings. I took him the next day to our clinic and his EKG showed inverted P waves. My EKG’s are always fine so I am really worried. He’s going to a cardiologist who has seen POTS patients in a couple of days.

I originally thought my POTS was from the swine flu but I think I’ve had mild POTS most of my life and I was misdiagnosed as ADD-inattentive. I tested two of my other kids with my Digifit iCardio and they were fine but I’m going to test my oldest two when they come home for the holidays. I suspect my POTS may be familial. How did you find out yours was familial? Is there a certain ethnic group that familial POTS runs in or is it rare but wide spread across different heritages? I appreciate your posting! Thanks!
My best, SweetFeather

HI Sweetfeather, I want to be “surgically precise” here. There is a syndrome called “familial POTS, also known as “Riley-Day”). That is completely different from hereditary POTS (in our family, our POTS is secondary to EDS, which DOES run in the family, but it is not Riley-Day). Cool? Riley-Day does tend to affect Ashkenazi Jews more often than not. Is this what you mean?
If not, I learned about the Beighton scale, and ran all of us through it. We were VERY hypermobile and didn’t know it! So started the journey to get the EDS and the hyperadrenergic POTS diagnosis. Then, much later — The Driscoll Theory!
Does this answer your question?
🙂 Diana

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