Kena Fleming

My son was 17. He was full of life, a runner, gymnast, and loved school. He is home bound now and unable to graduate high school. Last set of pictures attached below are of Henry’s life before Dysautonomia/POTS.

Fainting, tremors, extreme fatigue, tachycardia, brain fog, migraines, gray/purple color in his feet and hands upon standing, dehydration, weight loss

Beta blockers

Midodrine, Fludrocortisone

I haven’t posted about Henry’s health in a while. I have made apologies in person to so many loved ones, family members, friends, and co workers for lashing out in anger about Henry’s health. I am very sensitive about Henry’s condition and I’m working on my emotions with a therapist. I constantly remind myself that his condition seems new, unknown, and complex to even doctors. My therapist thought it could be helpful to try to explain his condition more to help others understand and have some awareness. Last summer Henry was diagnosed with Dysautonomia. There are many types of Dysautonomia- it’s a “umbrella term” for autonomic nervous system dysfunction. One type of Dysautonomia is called POTS (postural orthostatic tachycardia syndrome). There are also MANY different types of POTS. At Mayo Henry did a 24 hour blood pressure test. They believe Henry has Hyper POTS. His blood pressure actually goes way up upon standing. The teens in the support groups say they are either a “hyper potsie” or “hypo potsie.” Most are hypo- meaning their blood pressure drops low when they stand up. Henry’s blood pressure does the opposite. There is no cure for POTS and the doctors at Mayo said hyper POTS is less common and more difficult to treat the symptoms. Henry continues to have “okay days” and “bad days.” This has made our lives challenging but I’m learning that we now take full advantage of the “okay days.” His bad days are every week and on these days his symptoms range from difficulty standing up, walking, tremors, migraines, nausea, chest pain, brain fog that he describes as “feeling drunk.” He has nerve pain that he says starts with a pinch in his head and then “electric shock” pains that run down his back. We are also dealing with dehydration and gaining weight. It’s difficult to eat when you feel awful and your heart is constantly racing/tachy. One day at a time…..