Journey to Diagnosis

My journey to get diagnosed started back in high school, around my sophomore or junior year, even though it wasn’t until I was in my sophomore year of college that I finally received the answer I was desperately searching for. My search for an answer started when I began having a pretty much constant migraine. Everyone, including my doctors, initially thought that the migraines were caused by too many concussions or some general migraine disorder. However, my migraines persisted, and I was in an out of neurologist’s for years. I tried every migraine medication available to me and when nothing was working I moved on to nerve blocks and botox shots around my head, neck, and shoulders. That was the worst treatment I have experienced as I am terrified of needles and there were hundreds of needles way too close to my face. The migraine treatments were a long and grueling process filled with very little hope of anything working.

A few years into all of this trial and error, we finally thought we had found the root of the problem: a cerebral spinal fluid leak (CSF leak). I went through three blood patches in an attempt to fix the leak during 2020. Since it was covid, I had to go through all of these traumatic procedures without anyone physically with me to hold my hand, and the procedures didn’t even work. Eventually, since nothing we were trying had any positive results, I was referred to Duke University for their expertise in spinal CSF leaks. They were the first people to ask me if I knew what POTS was and ask if I had ever been evaluated for it. The doctors at Duke told me that since so many of my symptoms fit both a CSF leak and POTS, they did not want to continue treatment for the CSF leak until we knew whether or not I had POTS.

At that point I was completely unfamiliar with POTS or anything POTS entailed. Immediately, my mom and I started doing research about all of the facts, symptoms, and treatment options we could find. My doctors referred me to the Vanderbilt POTS Clinic in Nashville, but the waiting list for a new patient appointment was a year long and I couldn’t wait that long for relief. With the help of my doctors, my mom found a POTS clinic a couple hours away that could get me in sooner and provide temporary treatment until I could be transferred to the Vanderbilt POTS clinic. That clinic agreed with Duke’s assessment, concluding that I most likely have some type of dysautonomia. They sent me home from that appointment with a long list of strategies that could help me manage my symptoms for the time being.

Finally, I was able to get an appointment at the Vanderbilt POTS clinic. They began my evaluation with a heart echo and a month wearing a heart monitor every day and every night to get a better look at what was going on. After both of those tests pointing towards POTS, I finally had the ultimate POTS test, the tilt table test. For those that don’t know what a tilt table test is, it involves them strap you to a table and hook heart rate and blood pressure monitors on you. They take your vitals as they bring you from laying, to a 45-degree angle, to a fully upright position. If you pass out before the time limit is up, you almost definitely have POTS. I passed out a couple minutes after they stood me fully up. I was officially diagnosed with postural orthostatic tachycardia syndrome on November 10, 2021.