The Story of My Experience With POTS

          I think it's time I talk about POTS. What is POTS? Postural Orthostatic Tachycardia Syndrome. I have it. But let's back up a bit, to the middle of March, 2012. I was in a musical at my middle school. It was tech week, the week leading up to opening night. 

     I was outside, standing and talking to friends during a break, and I collapsed. Everything was spinning, my heart was racing, my hands and feet were a startling purple. Most of my friends were terrified, but one of them was hypoglycemic, so she had food on her at all times and was used to getting lightheaded. She ran and got something for me to eat. I felt a little better, but it was mostly lying down that helped, not that we realized it at the time. I told my mom when she came to get me, and she didn't really believe me. She denies this, of course, but I could see the doubt written all over her face. Begrudgingly, she took me to an urgent care, where the doctor promptly told me I was dehydrated and sleep deprived. Normal teenage stuff. I hadn't fainted, so it didn't worry him. My blood was normal, and my blood pressure was lower than average, but not alarming. He sent me home, telling me to drink water and sleep. That I did. I slept and slept, the little I could under stress from bullies, school and the play. 

      My head hurt a lot in the three days after that incident. Horrible headaches I still have today made it impossible to focus. Nonetheless, I went to every rehearsal and even performed flawlessly on opening night (so I hope) while I had a headache and was dizzy. The next day, however, it took a turn for the dangerous. I was walking in the hallway, having just changed into my costume for our last show, and suddenly the room was spinning. My heart was racing faster than I'd ever felt, and I can't remember anything until I woke up, people leaning over me with worried expressions on their faces. About a quarter of the people in the show thought I was faking. I don't blame them. I wouldn't have believed me. I was going through an emotional time and I'm a dramatic person. That being said, it hurt that they didn't believe me, but I'm getting off topic. I got up, dizzy, and walk backstage, despite the concerns of the adults and my friends and the fact I'd never fainted before, another reason they probably thought I was faking. It was about one minute til the opening number, and I had the first solo. I fainted. I woke up after about 2-5 seconds, back then I fainted very quickly, and walked on stage acting like a drunk pirate. In my dizzy state, I probably looked and sounded more inebriated than I was going for. I went offstage, and fainted once or twice more. I told my mom this, and she was horrified, but was still doubtful as I then proceeded to insist on going to the cast party afterwards with my friends.

    That Monday I went to my pediatrician, informing him on what was going on. He was worried, but I hadn't shown many symptoms yet, so he couldn't treat me. He said to wait a week, and see what happened. The next day I went to fencing club. In retrospect, it wasn't the best idea, but I didn't know that. I was standing for a extended period of time, and I just collapsed, completely unconscious. The fourth or fifth time in my entire life. I went back to the doctor shortly, and he did orthostatic testing, which is when you get your blood pressure taken while lying down, sitting and standing. My hands and feet turned bright blue. It was startling. It seemed to confirm my pediatrician's thoughts that I had this syndrome where the blood drains to your hands and feet and out of your head. What he thought I had was called POTS. I had never heard of it before. My mom had. My sister's best friend has it. Unfortunately, she got it by way of Lyme Disease, and was home bound for all four years of high school. That wasn't her only health issue, but POTS definitely contributed to making her life suck. 

    So we were sent to a hospital nearby, and my new doctor was the head of cardiology. He decided, after a month or two of treatment that I didn't have POTS, but something that is sometimes a companion to it, a thing called Vasovagal Syncope. It's fainting, but with no other symptoms. When we tried to tell him the medicine wasn't working, he told me it was because I wasn't taking it when I was supposed to. That was true enough. Over the summer, I fainted a lot. Not as much as in school, because I wasn't as stressed or as active. It seemed like smooth sailing, but when I started school again it was even worse than before. I couldn't wake up in the mornings, I fainted about 20 times a day, and I was falling behind in school. So we called the doctor and he decided to have me take a Tilt Test. It's a test where the patient is strapped to a table and put in a standing position to monitor heart rate and blood pressure. Most doctors have a possible POTS patient take it right off the bat. He didn't. He made me take on months after, and right afterward, while I was still strapped to the table, he informed me it wasn't POTS. It wasn't my heart, it was probably psychological and I should see a psychiatrist. I nearly started crying. My doctor, to my face, did everything but inform me he thought I was making it up. 

     Just like that I was at square one. The doctor tried to take me off all my meds cold turkey, causing me to faint over 20 times in a class period.  That didn't work. So I went to my pediatrician, who was positive I had POTS, even though the other doctor didn't think so. I went ahead and had an overnight EEG, during which I looked like an alien. That proved....I wasn't having seizures, which we already knew. So my pediatrician sent me to a POTS expert about an hour away where he told me I without a doubt had a very severe case of POTS brought on by a bout of Mono we never knew I had. Now I'm on 6 different medicines, and I take 13 pills a day. It could be worse. I'm still in heavy treatment, and I still faint regularly, I just know soon I won't have it anymore because it was viral not genetic. So, that's my story, or at least a summary.
 

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