A POTS Domino Effect: From POTS to Gastroparesis, MCAS, & May-Thurner Syndrome

On July 16, 2022, I experienced my first POTS episode while at work and was taken to the ER. My first symptoms were severe nausea and lightheadedness. I was previously very healthy and never had any chronic health problems before. As soon as I had heard of POTS, I knew it was what I had.

After 5 months of battling severe episodes every week and seeing a doctor who was not helpful, I was finally diagnosed by a different cardiologist who sees thousands of POTS patients. Right after my POTS diagnosis in December of 2022, I had a severe post COVID reaction, which dramatically worsened my symptoms. I have since been diagnosed with gastroparesis, chronic migraine, May-Thurner Syndrome, and mast cell activation syndrome.

I never thought I’d make it as far in my diagnosis journey as I have. I got blessed with a POTS expert as my doctor. However, because I’m still in the beginning of my journey and there is no cure. Every day is still a battle. I nearly missed my college graduation ceremony. I have had to drastically cut down on hours working and taking classes. I have had many episodes in public that require me to step out. I have had to miss out on countless family and friend outings, and have had countless struggles making decisions due to symptoms. The treatments that have helped me the most are infusions, medications, and lifestyle changes. I love to add salt on top of all my meals. My biggest triggers are heat and stress.

It’s been a hard journey, but the most important things I’ve learned from my experience so far is the value of rest, friendship, and advocating for yourself. It’s so important to not push yourself beyond what you can handle, and there’s so much grace in requesting accommodations. There’s an amazing support system within the chronic illness community, and some of my closest friends also have chronic illness. Most importantly, if I had not advocated for myself and pushed for the right doctor to listen, I have no idea how much longer just my first diagnosis would have taken or where I would be right now.