According to studies, patients with POTS spend an average of seven years going to doctors before finally receiving the diagnosis. Looking back, I realize it probably took me more than twice that long, 16 years! I am thankful that even though there are still way more questions than answers, I’m not still completely clueless.
When I became a patient at Vanderbilt, I had a lot of paperwork and questions to answer. I was encouraged to think back and try and determine when I might have first started having symptoms. Thankfully, the internet was there to help me have an “AHA” moment. I came across this picture of the sad person in the blue towel. It all started making sense in the strangest way.
Towards the end of high school (age 16 & 17), I started waking up really early to finish homework, study, and to get ready for school. At this point, my sister and I shared a bathroom and this helped avoid any major fights over the bathroom for getting ready. I didn’t think much of it at the time, but I started getting myself up a little earlier and earlier, even when I didn’t have more homework because I would get so exhausted taking a shower! I would take a reasonable amount of time (10, 15 minutes) and basically have to set another alarm and “nap” after getting out of the shower. A couple years later, the shower gave me even more clues that did not make sense at the time. My freshman year at UGA, my roommate was one of my very best friends. We lived in a dorm and it was common to schlep back from the shower in your robe and flip flops carrying a bucket of toiletries. My roommate began to notice and question why I had splotchy, reddish-purple (magenta) colored legs every time I came back from the shower. I thought that happened to everybody! It doesn’t.
Hot water causes blood vessels to dilate even more, making POTS symptoms worse. It would be close to another ten years from my college days, but slowly I would lose (most mornings) the ability to stand up while taking a shower. Later in the day it’s more likely that I can without a problem, but in the mornings, especially if I have to raise my arms up to wash my hair, in order to mitigate any significant risk of crashing naked through the glass shower door, I sit or kneel. I have also adopted, slowly over the years so it wasn’t super alarming or obvious when I think back on it, certain bracing maneuvers against the sink vanity to blow dry my hair if I want to flip my head upside down and keep from passing out. How in the world did I use to imitate Wayne and Garth and headbang to Bohemian Rhapsody?
Since Vanderbilt is a researching and teaching hospital, I was not surprised when a medical student was there with the doctor I was seeing. The med student was very kind and said he was especially fascinated to know if I had the “purple legs.” While this happens very quickly in the shower or with high heat and humidity, it will happen if I stand for several minutes and don’t have any type of compression socks or leggings on. I told the med student, yes, in fact I did but I would have to stand for several minutes. He and the doctor said that they would have me stand for several minutes and then they would come back to see. As I am often known to do, I felt the overwhelming urge to break up this somewhat tense and embarrassing situation with some humor. I told the med student quietly before he left the room. “There’s just one problem,” I said. “Oh?” The med student wondered. “I don’t necessarily get purple legs, I get BARNEY legs.” “What?” He chuckled nervously. “It’s not really a purple-purple, if you know what I mean. It’s a reddish-purple, like the color of Barney the dinosaur.”