Has anyone else’s POTS gotten worse as they’ve aged?
The very first time (that I can remember at least) I experienced syncope was in 1993, when I was 11. My dad had taken me to my junior high school’s open house, and he was showing me how to open my locker. This was actually the year when researchers from the Mayo Clinic defined the characteristics and named it POTS.
By the time I was 15/16, I had to stop doing dance and Taekwondo. I had been doing these activities for years. Instead of conditioning my body, it had the opposite effect. At this time, I was diagnosed with reactive hypoglycemia.
In 2003, when I was 22, I got into the police academy. As hard as I tried, I could not do the physical training. I even tried going to the gym and working out. This is the year I was sent to the Mayo Clinic and received my real diagnosis. I’d been misdiagnosed several times throughout the year. Needless to say, I had to drop out of the academy.
After my diagnosis, the neurologist said I’d grow out of it by the time I was in my late 20’s. Instead, as the years passed and I got older, my symptoms grew stronger. Much stronger. I eventually became a respiratory therapist. While working with patients who weren’t breathing on their own and I was manually breathing for them, I often became worried that I’d become a patient.
In 2012, I was 31, and I could no longer control my body temperature. Even in the hospital's cold settings, I’d overheat. My regular syncope, where I’d just quietly wilted like a graceful flower, became convulsing syncope. Now it wasn’t the graceful fall to the ground I had to worry about; it was the violence of convulsions that was the danger. In 2014, I left the medical field. Also, at this point, research said it outgrows it by my 40’s.
It is now 2026, I’m in my 40’s, and research suggests I’ll outgrow my POTS around my late 40s/early 50s. At this point, I go through these long sleep episodes. I call it forced hibernation. I'll sleep for days and sometimes a week or so straight. Only waking up to take a few sips of water, eat a little bit, and use the bathroom. Last year, I slept through most of April. It's not me being lazy; I can't wake up, and when I do, I'm not functional.
Thanks to the convulsing syncope, in July, I will have my 2nd cervical spinal fusion in 2 years. In 2024, my spinal surgeon fused 2 levels, and now they'll fuse 2 more. Essentially, most of my cervical spine will be fused.
But yeah, has anyone else experienced their POTS growing stronger with age rather than “growing out of it”? Has anyone “grown out of it” in reality, or is it just a fantasy they tell us to give us hope that one day we’ll be able to lead normal lives?