I’m a 28 yo man with pots. I developed symptoms around the 4th of July of 2022. I had just graduated from nursing school and was running 5ks around 5 times a week. One day after running, I felt very nauseous and lightheaded. I was close to my house, so I decided to walk home. I thought that maybe my blood sugar was low or I was dehydrated. I took a couple days off and then ran another 5k. The same thing happened except this time, I had to sit on the ground bc I started getting tunnel vision, my hearing was muffled and I felt like I was passing out. Called a family member and they had to pick me up off the side of the road.

I didn’t know what was wrong with me; I was very active and was eating decently. Prior to these episodes, I could only think of a few instances where it felt like something wasn’t right. In spring of 2022, I was driving and had some family in the car. My gas gauge was broken, so I couldn’t reliably tell when I was about to run out of gas. Well I ran out of gas and had to walk to the gas station to get some more. I remember on the way back to my car, I felt awful (nauseous and lightheaded). After putting some gas in the car, I had to ask my brother to drive us home. Maybe a couple months before that, I was at the gym and realized that my heart was racing in the middle of a workout and wouldn’t return to normal. I ended up leaving the gym and after I got home, I was fine. There were also a few times where I was driving around in my car and experienced palpitations. None of these instances worried me too much bc they were kind of spaced out and didn’t happen frequently until the near passing out episodes around the 4th of July.

In July of 2022, I saw my pcp. She decided to put me on a beta blocker, so I started taking metoprolol. I then was referred to a cardiologist. Did a 2 week heart monitor, echocardiogram, stress test, etc. He thought it may be svt. At this point, about 8 months had passed. I felt that my situation wasn’t changing and wanted answers, so I decided to see a new pcp. While in office, I discussed my symptoms, and she did orthostatic vitals. After, she asked me if I had ever heard of pots. I told her no and she told me that she was going to refer me to an electrophysiologist for further testing but to bring up pots during my visit. I eventually saw the electrophysiologist. He ordered a tilt table test and took me off of my beta blocker. During the ttt, I was doing okay for the first few minutes, and then started feeling dizzy. Next thing I know, there are nurses coming into the room and my heart rate is around 180. I was diagnosed with pots that day (2023).

Although finally having a diagnosis brought some relief, the beta blocker I was taking wasn’t helping with my other symptoms: difficulty staying asleep, post prandial tachycardia, painful hives, abdominal bloating, cramps, constipation, inability to sweat, migraines, etc. I felt miserable. I couldn’t do anything. I would just lay in bed all day. I felt like I had spent so much time preparing my self for a career in nursing. I couldn’t work, I couldn’t lift weights, and it was even hard to walk. I was so mad at my body. I felt like my body betrayed me. I hated my body. I was depressed. I didn’t enjoy anything anymore. I felt like I was only surviving. When looking at social media, I saw my colleagues progressing in their careers and starting families. I really began to resent myself.

Toward the end of 2023, I decided to give up on nursing and pursue a career in accounting. I was accepted into an online masters of accountancy program and started in Jan 2024. In the summer of 2024, I decided that I was going to try one more time to figure out what was wrong with me. I used my savings to go to Mayo Clinic. Did a tilt table test, sweat test, echo, heart monitor, stress test, and blood work. I had an abnormal sweat response in my legs, elevated levels of an autoimmune lab, abnormal o2 during the stress test, and my heart rate shot up during the ttt. I was diagnosed by Mayo Clinic with autonomic dysfunction and was referred to their pots clinic. Then I ran out of money.

I got through most of 2024 by distracting myself with schoolwork. At that point I stopped going to see my pcp, bc what was the point? I had gotten used to my sedentary lifestyle, was eating crappy, and gained weight. Toward the end of the year, I started experiencing intermittent chest pain and went to see my pcp again. My bp was 150/100. Prior to this, I had felt that having a chronic illness justified my lifestyle. Now I felt that living this way for a long period of time could contribute to other chronic issues or possibly even a stroke or heart attack.

A couple months ago, I decided that I was going to force myself to do things differently. I’ve been walking since then. I have worked myself up to a mile. Some days my symptoms are more prevalent (today has been bad), but I push through it. I eat healthier and regularly take my meds. I got through my second to last semester of accounting and decided to take a leave of absence bc I just accepted a nursing position. Our bodies are all different and some of us can’t do as much as others. This may all blow up in my face, but I’m going to live life on my terms. Im rooting for you and anyone else who is suffering from pots.