The Road to a POTS Diagnosis and Beyond

My name is Jeremiah, and I have Postural Orthostatic Tachychardia (POTS). My body has been a source of significant challenges since I was very young. Asthma, unexplained rashes, passing out, and other medical “adventures” kept my parents in doctor’s offices with me on a regular basis. The doctors I saw couldn’t figure out what was wrong with me. My family was frustrated by the lack of explanation and treatment for what they knew were serious issues.

As I grew up, they eventually learned that I had Ehlers-Danlos Syndrome (after pectus excavatum pushed my heart into my lungs). I was 12 when I had the Nuss Procedure to correct that fascinating abnormality.

At the age of 21, I become suddenly and extremely ill. I was in and out of doctor’s offices and emergency rooms continually for months because of extreme pain, inability to stand, and profuse vomiting. I even spent several days in the hospital while one specialist after another (including an infectious disease specialist) tried to find the source of my illness. Yet no one could explain what was happening in my body. My primary care doctor finally sent me to Mayo Clinic. There, it was discovered that I had a mast cell disorder, black pigment stones and “sludge” in my gallbladder (which required immediate surgery), gastroparesis, some general neurological issues, and POTS. At least I didn’t have the Systemic Mastocytosis/cancer that they thought I might have when I arrived. There’s always something to be grateful for.

My everyday life requires some maintenance. I take in 3000 mg of salt (mostly through salt tablets) and drink three liters of electrolyte fluids daily for POTS. I also have to take several types of antihistamines (for the mast cell disorder), asthma medication, a daily inhaler, and keep an emergency inhaler and epipens on hand. While I pass out daily, I’ve been able to work (at least part-time) for the past few years.

I recently left work to focus on getting an education (I tried doing both at once, but was unable to keep up physically. I ended up being in a wheelchair all the time.) This time, I’m working smarter, instead of harder. I use my cane for stabilization every day, take my meds, keep up the liquids, and rest as needed. POTS is rough, but it doesn’t define me. Keep fighting on, dysautonomia warriors. We got this.

Interested in learning more about dysautonomia? Check out our partners, the Dysautonomia Advocacy Foundation.

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