Had a good appointment at the Duke Syncope & Dysautonomia Clinic today! Being honest with doctors is not something that comes easy to me, but I think I did pretty well today. My blood pressure readings are looking MUCH better than they have in months prior! That is likely due to super high doses of Midodrine, & Fludrocortisone, as well as 12mg of Prednisone daily…but it is a good thing regardless. They were concerned with my heart rate, though. Despite taking all my Dysautonomia meds (including Bystolic, my beta blocker) & getting IV infusions, I am still experiencing significant tachycardia, especially upon postural changes. My orthostatic vitals today, for example: 113bpm lying down, 129bpm sitting up, 147bpm standing. Now, those numbers aren’t terrible…I’ve definitely seen worse, this week alone! But Jenn was not happy with those numbers & said that kind of increase upon sitting/standing is not good considering the medications should be taking care of those dramatic spikes. She was also a bit concerned because that was simply standing still, not trying to walk and carry on about the day. We agreed that the Bystolic is not the right med for me as it drops my blood pressure too low (causing me to need more Midodrine which I already take an overdose of each day)…so she is putting me on a new med called Ivabradine. I’m really excited because Ivabradine helps lower heart rate without impacting blood pressure! Only problem is it’s a med generally used for heart failure patients, so we will probably have to fight with insurance to get it covered. But Jenn says she’s confident we’ll win the case, considering I’ve tried almost every other beta blocker out there and my symptoms are so severe! Really hoping it is a quick process getting it approved, as I am super excited to try…especially because, once we finally get my heart rate under control, I get to begin physical therapy! Jenn referred me today to a PT who is familiar with Ehlers-Danlos Syndrome & POTS! Nicole sees him and really likes him. Apparently, he understands the pain, dislocations, fatigue, weakness, etc. that comes with EDS & how to best work with/through such symptoms. Really looking forward to it! Also while Mom & I were at Duke, we met a fellow Zebra who was using a wheelchair with SmartDrive. We ended up talking with her about it (& other things) for a good 15 minutes, and on the way home from the hospital, mom decided we will have a fundraiser because I need one, too! More on that later.. 🙂 Now for a nap– that appointment left me exhausted!
Symptoms of Dysautonomia
Fact: DYSAUTONOMIA IS NOT RARE!
- Neurocardiogenic Syncope (NCS) impacts 22% of the population
- Postural Orthostatic Tachycardia Syndrome (POTS) 1 out of 100 teens and one to three million Americans of all ages, genders and races
- Diabetic Autonomic Neuropathy occurs in 25% of diabetics. Thats 69 million people worldwide!
There are many other forms of Dysautonomia. Dysautonomia is not rare, it’s just rarely heard of. We are actively working to change that!
Fact: Young adults with Dysautonomia often face such severe symptoms that they are left tragically ill and socially isolated during the prime of their developing lives. Because the symptoms of these conditions are often invisible to the casual observer, most Dysautonomia patients don’t look sick. This tends to lead to a lack of understanding and support for the person suffering.
Fact: POTS and other dysautonomias are often misdiagnosed. The average time to diagnosis is 5 years and 11 months. 85% of patients are told it’s “all in their head” or given similar psychiatric labels prior to receiving their Dysautonomia diagnosis…however, research shows that POTS patients are no more likely to have psychiatric disorders than healthy controls (Dysautonomia International).
Fact: The majority of Dysautonomia patients- specifically POTS patients- are hypovolemic, despite adequate hydration. Standard blood and urine tests may not always detect this hypovolemia, as the patient is typically deficient in plasma and red blood cells. Blood volume analysis with a radio-tracer can be used to evaluate a POTS patient for hypovolemia (Dysautonomia International).
Hypovolemia, or low blood volume, is a daily struggle for me. In order to combat this issue, I receive two to four liters of IV Saline each week, as well as push a liter or more of water and Pedialyte through my j-tube each day.
Fact: A type of Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS) is estimated to impact 1 in every 100 teens before they reach adulthood. There are an estimated 500,000 to 1,000,000 people living in the United States alone. While the majority of those afflicted are young women, POTS can be found in all ages, genders and races (Dysautonomia International).
What is Dysautonomia?
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, temperature regulation, etc.