Labels

Labels. They’re slapped on you and when they stick they are the hardest to remove.

After the whole fiasco with my father was over my health started to truly deteriorate. One might say it was the after effects of stress during that time period, but it was persistent and it was getting worse on a daily basis. For years I had dealt with debilitating chronic migraines and on again off again acid reflux, but now more symptoms were getting thrown into the mix. It was my junior year of high school and every day I would end up in the nurses office. I was so tired, I couldn’t think, I was sweating terribly yet cold to the touch. I had gone out of state to a different children’s hospital to go through a tilt table test. The results were not in my favor.

For as long as I could remember I would have to hold onto something upon changing positions, such as from sitting to standing, or lying to sitting. I would say my “eyes were changing” meaning my vision literally turned to black and could stay that way for a few minutes. I was told I had low pressure after a round of preventative migraine medications when I passed out in the kitchen on Memorial Day. From that day forward we also had to mention to doctors of my low blood pressure situation. With a desperate mother researching away we both decided I might benefit from a tilt table test to see if blood pressure medication might help alleviate my symptoms. The procedure seemed harmless so I decided to make that decision and go forward with it.

Arriving at the children’s hospital was horrifying. The ward I was going to was mixed in with the cancer patients, and the constant sobbing of parents filled the hallways. In the procedure room I was hooked up to an IV and strapped to a table. The first test had me just lying down, then mechanically moved to standing. Nothing happened. My heart rate and blood pressure changed drastically but I did not pass out. The next test they injected an agent to make my heart race “like I was running”. The wording sounded harmless, but the actual agent felt like my heart was going to explode. I lay on the table, my heart beating a million miles a minute, my mother practically screaming to make it stop and turning away when they wouldn’t. I was thrust into the standing position, yet again keeping consciousness. Then the test was over. I had failed. Because of this test I was told I was fine and to improve my condition I should drink plenty of Gatorade and eat tons of salt, a diagnosis plenty of patients initially go through with this condition.

It was rather insulting, to be told to my face that I am perfectly healthy, to be told salt will fix my chronic fatigue. So I returned to school, struggling each and every day. The absences were growing and the school nurse was beginning to suggest things I might have. One day she thought maybe I might have this condition called POTS. My mother and I looked at each other like what in the world was she talking about, but then went home and researched the syndrome. POTS, Postural Orthostatic Tachycardia Syndrome, with a list of symptoms that I checked yes to every single one. The problem was POTS at this time was fairly new and doctors were hard to come by that treated specifically that. By lucks chance my mother called a doctor only 30 minutes away that would see me the next day, though not a POTS trained specialist. The next day I arrived and was diagnosed with POTS. I went for blood work to reveal my ferritin levels and that sealed my fate. The POTS label was slapped upon me.

The symptoms were getting worse and new symptoms arising. It was like walking a hallway, knowing there was an end but none currently in sight. The doors were endless. A symptom here, a symptom there. By winter break it was decided that I should be pulled from school and instead homeschooled. Instead of completely being homeschool the school provided that my actual instructors come to my house for a set amount of time each wehallwaysek. In a sense I was distance learning.

My growing number of symptoms was so vast and complicated that at times I stumped the doctor. The first issue to address was my blood pressure. It was incredibly low, and standard to POTS sufferers would go through severe drops when changing positions. Unlike some POTS patients though I never did pass out, but the severely low blood pressure might have been causing my other symptoms of chronic fatigue and brain fog. I was put on two medications, midodrine and fludrocortisone (which was a steroid). Together these were to keep my blood pressure at a certain level, which they did after months of taking them. The sides effects I had from both medications added to my daily woes. My head would go numb and tingle, which freaked my mother out but I told her I can handle it.

At the time the prognosis was slim but at least someone had figured out what was finally wrong with me. Even though I had this label it was still something compared to nothing. The hallway might have been long but it now had an end, so I was told. I was hopeful even though my condition was worsening.

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One thought on “Labels

  1. Wow, you made me realize just how damaging the POTS label has been for me as well. I’m so sorry you were ultimately traumatized through these tests and experiences. It’s really hard to grow up sick, especially when you have an unusual or invisible illness. Hugs to you! Dani

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