The Story Of A Girl Who Wouldn’t Take No For An Answer

One day in 2021, as a 17 year old girl, I started getting crazy palpitations and felt like my heart was racing out of my chest just sitting in my chair. I immediately knew something was not right and knew it was not anxiety. This was out of nowhere! A few days later, I then went to urgent care just for them to tell me it was anxiety due to COVID and a cardiologist wouldn’t help me. Although my EKG was “normal,” I knew that wasn’t right and started to monitor my symptoms.

Six months later, I had a physical and just by sitting down at the nurses station checking in, my heart rate was 115. The nurse was concerned as this was not my normal heart rate. During my physical, without saying anything, my doctor knew something was not right so he ordered an EKG. The EKG showed that I had a slightly deviated heart and the electrical part of my heart was pumping faster than it should, therefore it showed I had Sinus Tachycardia. Thinking about it, I always went to my doctor for GI issues, fatigue, Raynauds, and much more with every test coming back normal. I was then sent to get an echocardiogram but that was normal. I also had a 24 hour Holter monitor that came back with waves of tachycardia.

Looking back at it, these were signs of POTS (tachycardia part) but I did not think anything of it. I continued to monitor it until I developed COVID…fast forward another 6 months. I started “seeing black” every time I would stand up… as well as my blood pressure being low. I then went back to my doctor where he brought up POTS and had me do an orthostatic Standing Test. My HR went up by 25 bpm. It did not meet the medical criteria for POTS yet.

I was sent to a cardiologist and he told me it seemed like I had POTS, (he did another orthostatic test as that showed it)…He then told me about dysautonomia and POTS and ways I could help myself. I then had a Tilt Table Test almost a year later of waiting, to confirm the culprit was POTS. It was. My heart rate went up 65bpm. Along with that I had a 2 week long heart monitor and all signs pointed to POTS as well. I finally got the diagnosis after 3.5 long years of feeling lost. I always knew something was wrong. It was not my anxiety, it was way more than that. I am so happy I listened to my body and the signs it was giving me.

I am now more educated on dysautonomia and POTS. I have an amazing care team that wants the best for me and hears me out. I love to advocate for those that aren’t able to, along with sharing my story on social media. I hope to meet more friends that have POTS or dysautonomia as well.