I wouldn’t consider myself much of a writer, nor do I like sharing much about my emotions with the general public. However, special times call for special measures…I guess. This is my POTS story. Now, you may be asking “why are you sharing this?” Well, good question. October is Dysautonomia awareness month. I hope that with my story and the support of friends and family like you all we can spread awareness of this silent disease so nobody will have to go through the long, unknown journey of sickness that I had to suffer through.
I was always a healthy person. I played sports, I ate my vegetables (and some ice cream too), and I always got the perfect attendance award at school. Nothing in my life could have prepared me for what was to come.
Around November of my sophomore year I started getting weekly migraines. I found this odd, but didn’t think this made me different from any other high schooler getting migraines. A couple of months later these went away, and obviously I went back to having a killer sophomore year. But then summer came along and it all went downhill from there. I remember the first time I felt the strange dizzy feeling. I was waiting to get into the One Direction concert with my friend. She had just made me get her a water bottle because she was overheated and felt like she was going to pass out. After she had rehydrated, we scooted our way up to the front of the mob of screaming teenage girls dreaming of dating Harry Styles, and waited for the doors to open. Suddenly as we were standing there I felt as if I couldn’t stand anymore. My hands started tingling, my face went completely numb, and I felt as if the room was spinning (despite the fact that I was outside and there was no room to actually spin). I immediately made my one direction adoring friend abandon her amazing spot in line so I could get out of the overwhelming crowd of people and maybe blame my dizzy spell on excitement or claustrophobia. Unfortunately, my excitement of seeing one direction had nothing to do with these strange symptoms. As the summer progressed my symptoms only got worse, not to mention more strange things kept happening to me.
By the start of my junior year we had already seen multiple doctors, all with the same response; “there’s nothing we can do, it’s just anxiety.” As much as I respect medical professionals and all of their hard work, I knew this was not the correct diagnosis, and so did my parents. I went from being a normal healthy child to not even being able to get off of the couch. By October of my junior year I had to be homebound from school; I was too sick to get out of bed. I was having daily migraines, was constantly dizzy, never slept, always had stomach aches and felt like I was going to throw up everywhere (sorry for all of the unpleasant imagery, I’m just trying to be real), my brain was so foggy I couldn’t concentrate, and the list goes on; but as you can see I just was not myself and was clearly not healthy enough to do anything.
Through the grapevine of mutual friends, my mom had heard of someone who had POTS, or Postural Orthostatic Tachycardia Syndrome. Her symptoms sounded very similar to mine, so we immediately made an appointment with her doctor. Soon after, in November of 2013 I was diagnosed with POTS. However my journey was not over there. After this, it took me two more doctors and I cannot even count how many medications before I was able to get my symptoms under control and get myself healthy enough for life activities again.
I ended up missing over one hundred days of school my junior year of high school, and only went to school for four periods a day my senior year because I simply wasn’t healthy enough to make it through a whole day. It took a while, but with the help of the correct doctors and trial and error with MANY different medications, I am finally able to say that POTS doesn’t completely own my life anymore (don’t get me wrong it’s definitely still there and makes itself known all of the time, but I’ve learned to deal with it). POTS isn’t something that will go away, for now at least, I still struggle with it on a daily basis. However, with the right management of medications and a healthy lifestyle I am able to live a normal life again, finally! Two years after my diagnosis I am healthy enough to workout, hangout with friends, and most importantly go to college (something I didn’t think I would be able to do for the longest time).
Now you may still be asking yourself, “Why is she telling me all of this?” That’s still a valid question, and here’s my answer. I missed out on a lot. I suffered and had a long journey to go through. I’m not telling you this for your sympathy, or for you to think I’m a freaky sick girl (I mean think what you want…I guess). Don’t let someone you know go through what I went through! POTS is not a very widely known illness, it’s nicknamed a “silent disease”. I went to eight doctors before I was finally diagnosed with POTS, and if my mom wouldn’t have heard about it randomly, it could have been eight more than that. I wouldn’t wish this on anybody. All I am asking is that you would share this, verbally, electronically, or however you need to so we can spread awareness of Dysautonomia and POTS. Educate yourselves with the link below if you’re interested, wear blue, I don’t know just do something this month to spread the word! Thank you for all of your support!