Ever since I was little, I would experience what I call “blackouts” when I stand up. Which is exactly what it sounds like. My vision would literally dim and black out as if I was blind and I would feel really light-headed. Usually it only lasted for a few seconds and once I sat down my vision returned to normal. My parents just believed that I was standing up too fast. It kept happening, but just became something that I got used to and tried not to make a big deal of.
Around High School, these blackouts and light-headed spells became more prominent and more often. I started actually fainting, like falling on the ground because I was so dizzy and weak. I often missed school due to the constant migraines and just feeling sick and tired everyday. I had no clue what was wrong with me and neither did any of the doctors that I had seen. At some points I started to just think I was crazy because I had no clue why I always felt sick… I just tried to continue on and just take this as something that I had to deal with and try to get over.
And then 2 1/2 years ago, I finally got my answer. I was shadowing a nurse at a hospital and due to standing too long I started to feel light-headed and my vision started to black out. Next thing I know I’m on the ground and all of these nurses are huddled around me taking my vitals and one of the nurses commented “her heart rate is really fast”.
Postural Orthostatic Tachycardia Syndrome, or POTs. Basically the easiest way to describe it is having a fast heart rate while standing. And finally it made sense why it took me so long to get answers. Every time I went to the doctor they were always taking my vitals while I was sitting, AKA when they are normal. No one had ever taken them when I was standing, AKA when my heart rate would skyrocket. Finally I saw a cardiologist who suspected that I had POTs, but ordered a tilt test to be sure. The tilt test showed that my heart rate went from 76, while laying, all the way up to 129 while I was upright, which is tachycardia. Tilt tests can last up to 45 minutes, I fainted within the first 6 minutes of the test. It was an awful experience but I’m glad that I went through with it because it was what finally diagnosed me and gave me the answers to my health mystery.
With all of the information my cardiologist gave me on POTs and the research that I did myself, it finally explained everything and made me realize that I wasn’t crazy, I had POTs. This is why I believe it is extremely important to raise awareness about conditions like POTs and dysautonomia. People often don’t even know that these syndromes/conditions exist unless someone they know has been diagnosed, which is often why it takes so long for POTs patients to be diagnosed. It took me many years and multiple doctors to get answers myself. My hope is that if enough awareness is raised, future POTs patients (or anyone with dysautonomia conditions) will be able to reach their diagnosis faster.