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My POTS Story

Kaitlin, age 22, Indiana

I was diagnosed with autonomic dysfunction and neurocardiogenic syncope when I was 12, and here I am 10 years later still struggling with it. So when you look at me you may see someone who looks young and healthy on the outside, but actually I get very bad migraines and deal with brain fog, fatigue, memory issues, chest pain, very fast and sometimes very slow heart rate, light sensitivity, insomnia, and the list goes on.

My head feels so heavy, I get very dizzy, and very hot it feels like my skin is on fire. I slur my words. I close my eyes and it feels like the room is spinning but keeping them open makes it worse. I can feel the syncope episode coming on and I can feel my body start to panic. Sometimes I have to get on the floor so I don't fall and hurt myself. Sometimes I'm close enough to the couch or bed I can stumble my way there without passing out. Once I'm laying down, I start getting these sharp pains that end up causing me to twitch and it doesn't go away until I fall asleep.

I fell through a glass coffee table and sliced my arm during a syncope episode. I've also had a syncope episode when I worked at Subway. It was very embarrassing coming to and my coworkers standing over me asking if I'm okay. They sent me home.

Once, I puked all over the girl sitting next to me at school. I felt really nauseous and the teacher wouldn't let me go to the nurse. The next thing I know, I come to and this girl is fuming mad and covered in puke. The teacher is trying to calm everyone down. Everyone is laughing and saying "ew" "gross" and all I could do was cry. I never went back to that school.

Then another time, it was the middle of the night and I was home alone with my kids asleep in there room. I passed out in the shower and when I came to I was just laying there, the water was pouring over me and I had a massive headache. I couldn't stand up, so I had to crawl from the bathroom to the bedroom so I could lay down.

There is no cure, and there is no FDA approved medications for treatment, which is why we need to bring awareness to it so we can find a cure. It's been 10 long years and I gotta be honest, it sucks and I hate living like this. I don't know how I got it but I remember very clearly when i first started getting sick and how it felt to be so alone in my own bubble with my body betraying me and that loneliness never goes away.

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