A Teenage Perspective on POTS

I have had POTS for a little over 2 years. I might have been symptomatic for 2 weeks when I was 12 but we never knew what it was at the time. When I started getting symptoms, they hit me really hard. I had to stop going to school. I tried to go in a couple of days that year, but I had to go home early most of the time. Most days it would be hard for me to even lift my head and I felt like my body was shutting down. I went to every kind of doctor and got all kinds of scans and blood tests, but the really couldn't find anything at first. I was really blessed because one cardiologist took my blood pressure laying down to standing and saw it was irregular. It took 2 or 3 months to figure out I had postural orthostatic tachycardia syndrome. I did the tilt table test to confirm the diagnosis. They only really told me to eat salty foods, drink water, and try to sit up more.

I used to play sports and was pretty active but all of that had to stop because of POTS.The doctor wanted me to do physical therapy but I really hated it and it made me feel sick. It did make me feel stronger physically, but if they pushed me too hard I would usually be really sick for the next couple of days. So I ended up stopping because I told them I could do it myself. But I ended up stopping after doing it myself for a little bit.

Over the summer, I went to a POTS treatment center for 2 weeks. It really didn't help me though. I was doing better than I was in the very beginning but I was still dizzy and had bad days. I ended up getting really bad anxiety and was terrified to go to school. Every time it was brought up, I would start crying and having a panic attack. This was the I was going into eighth grade. I ended up going, but shortly after the year started I had a lot of bad days so the school would send work home for me. I couldn't do most of the work because it was really hard for me to sit up and concentrate. I got a tutor that came to my house and helped me with math, that was the only thing the school made me do because they understood my situation. For ninth grade I did a homeschool that was meant for people who can't leave there house to go to normal school. I was able to talk on the phone 3 days a week with my teachers. Still, I was having really bad days and had to miss a lot of the online classes. My brain fog made it very hard to concentrate. Also when I tried to concentrate it made me feel unwell and my memory became all messed up making it hard to remember things. I also really missed the social aspect of going to school. Now I am done with the school year and will probably end up doing some type of homeschool for tenth grade.

Eating has been hard for me. I am never hungry and if people don't constantly remind me to eat I will forget and miss meals. I have become very sound sensitive and I don't like places with a lot of people. Lately I can't go to places like movies, big malls or even church because it is all to loud. I feel like I am being controlled by the fear of having bad days. That fear has kept me inside most of the time.

Now I live in Florida which is very hot but my family and I are in the process of moving to Oregon for my fathers job. The heat really causes my symptoms to get bad. Even if I'm only outside for five minutes I will have to lay down and stay inside the rest of the day. I am optimistic about the colder weather and hope it will help some of my symptoms. I have been to Oregon before and it was the best I ever felt while having POTS. I have become more used to the daily dizziness and I don't really remember what it's like to not feel like this. But I think that is a good thing in a way so I don't compare how I used to feel and how I feel now. Even though I have this I think God gave this to me for a reason that I just don't see yet. I am excited to be moving and I will get better someday.