My POTS Story

This is my personal experience with POTS. I am by no means a medical expert and am only speaking about what I have experienced and how I have learned to cope with life with POTS.

I suffer from a medical condition that many don’t know about. It’s a form of Dysautonomia called Postural Orthostatic Tachycardia Syndrome or POTS for short.  It’s somewhat of an invisible illness. If you look at me at any given day, or at any of my pictures, you’ll see a happy, healthy, smiling girl. However, what you don’t see is that it’s rare when I actually feel 100% healthy and myself.

I was diagnosed with it when I was 14, a freshman in high school. It was absolutely devastating for me. I was always that girl that was involved in everything. I played three sports, was involved in theater, and the blue key club. I had a great group of friends and felt like I was on top of the world. When I started having terrible headaches and getting dizzy every time I stood out of my chair, even fainting from time to time, we knew something was up. I also would either have insomnia or sleep for a week straight, only being awake to shower, go to the bathroom, and eat. Sometimes, I would even get sick for seemingly no reason at all.

I went to a lot of doctors and tried many tests. My primary care doctor thought I was simply depressed, which my mom and I both knew wasn’t the case. I was sent to a psychologist and she confirmed that I wasn’t depressed, something else was going on. When I started getting heart palpitations, I was sent to a cardiologist. They did an xray of my heart, to show it was strong and nothing was wrong there. But clearly, something was since I was having all of these issues. She was the one that said I might have POTS and sent me to a POTS specialist.

I remember that day perfectly. I was sitting in the waiting room with my mother and I was having a great day. I felt good for the first time in what seemed like ages. My mom laughed but also mentioned how she wish the appointment happened when I wasn’t feeling well so he could actually make a diagnosis. I went into the room and when he started to do tests, I remember yelling at him to stop. Suddenly the color drained from my face and I felt like I was going to be sick. In a matter of 10 minutes, I went from feeling amazing to feeling absolutely terrible, like I was going to get sick and faint. This confirmed that was indeed what I had.

I tried to go to school, but eventually it got so bad that I was coming home early everyday from school and would sleep or take medicine. This was so devastating for a teenager that only wanted to go to school and be around people. I ended up working out a solution to go to school for an hour a day to pick up homework and return it whenever it was completed. I thank the teachers for helping me finish my freshman year.


(Some of my friends from freshman year are still some of my best friends to this day!)

I knew that I couldn’t continue to do this for the rest of high school and I didn’t see any sign of POTS getting any better. There isn’t a cure for it and I was afraid that I was going to be a vegetable – not being able to get off the couch or go out and do anything because I felt so terrible all of the time. I ended up finding an online high school (read my short story on their website here), that let me go at my own pace and do work when I was feeling okay and take a few days off if I was feeling awful. This was the best decision I made at that point. Because of it, I was able to focus on my health first and I even ended up graduating 6 months early from high school! If It hadn’t been for focusing on my health and getting better during my high school years, there is no way that I would be where I am today.

Treatment

I am actually able to live a fairly normal life now, which wouldn’t have been the case without the treatment I received. What changed my life was not medicine, but a holistic type of treatment – craniosacral therapy. I was not a believer in holistic healing, until I got so desperate to feel better, I would try absolutely anything to have a normal life again. My mom’s friend happened to be experienced in craniosacral therapy and she was the one that said she might be able to help me. This treatment absolutely changed my life. I am no longer a vegetable and can go on adventures, not letting POTS hold me back.

Granted, this type of treatment isn’t for everybody and it takes a while. It took years for me to get back to what I considered a good place. I was going to treatment 4 – 5 days a week for years, before I finally was able to reduce it over time. Now, almost 10 years after I was diagnosed, I still go to craniosacral therapy, but once every 2 – 3 weeks.

POTS is something that I live with and I still am affected by it, I just know how to manage it better now. I have to listen to my body and rest when I need to rest. I drink a ton of water and generally lead a healthy lifestyle. I carry a snack/water bottle and a plastic bag with me, almost at all times, in case I am having a moment where I feel dizzy or feel like I’m going to be sick. It still happens, but it’s not even close to as often as it used to be.

When I was in high school, I never thought I would be able to have a normal life again. But I do, and I even do things I never thought I could do. I was able to have a normal college experience, moved halfway across the country, and even backpacked europe 

I’m so thankful for the help I received over the years and know that I’m lucky for being able to live a normal life again. Because of this, I don’t take it for granted. This is why I go on adventures and try to experience as much in life as I can. You never know when life will throw you a curveball.