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Journey to my POTS Diagnosis

Morgan, age 16, Illinois

In August of 2020, I started to feel some symptoms such as shortness of breath, headache, extreme fatigue, and cough. They diagnosed it as bronchitis and I took what I thought was going to be a short break from running. Little did I know that I still wouldn’t be running today. After many weeks of medications not making a dent in my symptoms and many new symptoms such as chest pain, dizziness, and loss of appetite along with my other symptoms listed above, I ended up seeing a pulmonologist and found out nothing was wrong with my lungs. My doctor and my family were puzzled as to why I was experiencing these symptoms.

For the next couple of months I was in the Emergency Department and hospitalized, and I saw several doctors all claiming that I was probably just anxious or had after effects of COVID even though I had at least 4 negative tests. I started to believe that all the symptoms were actually in my head, but my family was amazing during this time and assured me that what I was feeling was real.

Throughout the months since my first symptoms I was practically bedridden, and just short of breath walking up the stairs. Going from a healthy teen athlete to being exhausted from doing the bare minimum of everyday tasks was really hard and to be honest I still have trouble accepting the fact that I will most likely never be as fit as I was before I was diagnosed.

At the beginning of January, my parents and I decided it was time to take the next step and go to Mayo clinic as we were getting no help at home. Six months after my initial symptoms, we finally had answers. I was diagnosed with POTS by a tilt table test and it had been caused by Lyme disease. I finally had answers to many of the symptoms I was experiencing such as dizziness, chest pain, shortness of breath, high heart rate, fatigue, etc.

I was told by my doctor it was going to be hard to get back to where my body was before but if I put forth the effort, it is possible. I’m not going to lie, the road back has not been as easy as I thought and there are many days when I feel like I have made no progress. But luckily I am having so many more good days which outweighs the bad. I want to to raise more awareness for POTS so in the future people don’t have to end up in a situation like mine and have a prolonged diagnosis just because doctors didn’t know what POTS is.

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