From athlete at Wesleyan college to physical therapist, guest writer Dana shares her story with POTS.
It was fall of my sophomore year of college, I was nineteen years old when I started to have heart palpitations, chest pain, lightheadedness, increased fatigue, and tiredness. My symptoms were mild; I did not think too much of it. I was a collegiate athlete on a scholarship and nothing was going to stop me from competing.
I was already in the midst of the cross country season when the athletic trainer called me in after practice. He noticed that I was experiencing chest pain in my initial onboarding team assessment and he was worried I had WPW (Wolff-Parkinson-White) which can be a serious heart condition if not treated. I was told to immediately stop running until I saw a cardiologist. I went to 2 different cardiologists and had multiple tests done such as echocardiograms and EKGs; I wore a Holter monitor, recorded my symptoms in a log, all with no luck at a diagnosis, just recommendations to stop running until we “figure it out.”
POTS can be caused by deconditioning and since I stopped running, my symptoms with simple tasks got worse. I started to pass out and fall to the ground more often. Spring of that year I skipped out on my teams’ annual training trip to Florida in order for me to see a neurologist in my hometown.
I went through stress tests, sweat tests, a nerve conduction velocity test, and a tilt table test until I was then diagnosed with peripheral neuropathy and POTS. I was relieved to have a diagnosis and a plan for treatment.
I have been running competitively since I was ten years old and this was the longest I went since then without running. I wanted to get back into it as soon as I could, but it was not that easy. It was a very slow progression, but things were easier with the strong support from my family, teammates, and friends. It took a while for me to get back into competing with the team. I was not able to break any of my previous records, but I was back to doing something I love with the people I love.
After college, I went onto graduate school to get my Doctorate in Physical Therapy. Studying took priority, thus I hit a low point with exercise and managing my POTS.
I felt I did not have time for exercise, so I had to learn to minimize symptoms though additional measures. Managing my symptoms was (and still is) a learning process. One day in class we practiced utilizing a tilt table for managing orthostatic hypotension. I remember having flashbacks of my tilt table test and, let’s just say, I did not volunteer to act as a patient on that day.
We discussed POTS briefly in school so I was able to learn more about what was actually causing my symptoms. As time went on, I got back into exercise but not at the same level I was previously.
Currently, as a physical therapist in the inpatient setting, I still struggle. If I don’t have enough salt, if I forget my medication or compression socks, if I am working with a patient that requires a lot of physical assist, I get symptomatic.
It is very challenging to try to push myself and hide my symptoms since I am the professional; I am the one who is supposed to look strong to my patients. Although it took some time, I have learned what my body needs to keep working the way I need it to. I am able to manage well most of the time, but I am still trying to figure out exactly what I can handle.
My husband and I recently started multiple day backpacking hikes that I was worried I would not be able to handle, and sometimes I can’t.
One hike we went on, I started to become symptomatic and was not able to stand. It was probably the scariest moment of my life since we were hiking in what seemed to be the middle of nowhere.
We learned from that and now we don’t go when it is too warm, I carry extra salty snacks, we take more breaks, and we go slower. I learned to have to be okay with a lower level of activity, as this was going to be my new “normal”. We still get to enjoy all the things we want to enjoy, but I take extra precautions to prepare myself, and we take things slower if we must.
My journey with POTS has not been easy, and it is not over. My husband and I want to have kids someday and we are working through what will be best and the safest way to do so. My neurologist has said that sometimes people can “grow out” of POTS so I am holding onto that hope.
Mainly, I have learned that my college running days were not the most important time in life. I was so heartbroken at the time that I would not be able to get back to where I was competitively, but now I am competitive with myself. I want to see what I can push myself to handle in order to accomplish my goals.
Although some days are harder than others, I have done and seen many great things since my POTS diagnosis and I plan to continue to do so.
Interested in reading some more guest articles? Check out Athletes with Dysautonomia: Tips and Tricks to Battling POTS and How Chronic Pain Changed My Perspective on Life
Want to know how physical therapy can help with POTS/Dysautonomia? Read this article: Why You Shouldn’t Overlook Physical Therapists