This post is from 2015, and was part of the Dysautonomia Series we produced for last year's Dysautonomia Awareness Month. You can find all the podcast episodes in the series HERE.
Last week I got the chance to interview Lauren Stiles, the President of Dysautonomia International, for the podcast. Lauren launched the organization from her kitchen table in 2012, and it has gone on to host patient-centered conferences, raise lots of awareness and has significant funds for important research grants in a neglected field. Since that first Dysautonomia Awareness Month just three years ago, the organization and the awareness it has helped to foster, have grown significantly.
Unfortunately, a lot of people still have never heard of dysautonomia, or the various conditions that fall under its umbrella. Dysautonomia is a blanket term that covers conditions resulting in autonomic dysfunction. Your Autonomic Nervous System is responsible for a lot of the things that are supposed to happen in your body automatically; things like your heart rate, blood pressure, body temperature, sending your blood to where your body needs it the most at any given time, and can affect just about any system in the body as a result.
For many with autonomic disorders, it can make the simple act of standing up a very dangerous game.
I happen to have a couple of these conditions in a fun two-for-one package. My particular flavor of dysautonomia is Postural Orthostatic Tachycardia Syndrome (POTS) with overlapping Inappropriate SInus Tachycardia (IST), which as the names imply, involves my heart beating too fast in general, but especially when I stand up. But it's also so much more than that.
Many people with POTS have issues with all of the bodily functions named above. Its effects can range from mild dizziness upon standing for some, to being completely immobilizing for others. Beyond tachycardia and dizziness, symptoms can include chronic dehydration, severe fatigue, nausea, headaches, brain fog, heat/cold intolerance, exercise intolerance, lower extremity blood pooling, pre-syncope/syncope (near-fainting or fainting), chest pain, and shortness of breath. Some people with POTS experience autonomic dysfunction that also severely affects their digestion, resulting in digestive disorders like gastroparesis.
It gets better for some people, while for others it's a lifelong battle—for me it's been a mixed bag. Mine was relatively stable for the last year while I dealt with other medical problems, but recently has been much worse, and I forgot just how disabling it can be. I'm fortunate that I only experience syncope when I'm sick with a virus, but I do frequently experience presyncope, even while doing simple tasks like brushing my teeth.
I was only diagnosed with POTS and IST last year, but had symptoms for a good 20 years before that. During that time, I've experienced both ends of that continuum of severity, and many places in between. After doing some research and bringing it to the attention of my first cardiologist, he told me POTS "didn't exist." I can assure you, him, and everyone else that might not be sure, that it most certainly does—as Lauren put it in my interview with her:
"POTS is not like Santa Claus, you don't need to believe in it for it to exist."
POTS is like the wedding crasher of the dysautonomias; it likes to show up to parties it's not invited to. It often occurs in the setting of a variety of different medical conditions like infections, autoimmune disease, and genetic disorders like Ehlers-Danlos Syndrome, which is why I have it.
I'll be launching the podcast at the end of October with a series of interviews with POTS patients who have dysautonomia alongside those different conditions, to honor Dysautonomia Awareness Month. DI's slogan for the awareness month is "Make Some Noise for Turquoise," and that's literally what we're doing. I'll have plenty more interviews with people who have a variety of other conditions, but I want to come out of the gate with something full of meaning for me personally.
Yesterday episode of CBS's The Doctors featured POTS, and they discussed the challenges of living with an invisible illness. I'm generally not a fan of these kinds of shows, but they actually did a pretty okay job with it. You can watch that segment here.