February 3, 2023

I typically write posts from the perspective of a healthcare professional; planning to include facts, numbers, and a lot of medical jargon (and I will still include some of that). After all, I am a physical therapist and geek out on research and evidence. But I write this post also as someone who has had POTS for a long time and went undiagnosed for MANY years. I hope sharing my own story can help others get diagnosed and receive treatment sooner rather than later. I also hope it will explain why I’m passionate about treating others with POTS through physical therapy.

Even though POTS has been around for decades and has been known by many different names, most people (including some medical practitioners) have never even heard of POTS – until recently that is.

Here I go with some facts…

Unfortunately, more people are learning about POTS and being diagnosed with it because of COVID-19. That’s because POTS can be triggered by infection (and other health events like pregnancy). POTS has also been linked to long COVID. A recent study determined that 2%–14% of COVID-19 survivors have been diagnosed with POTS and an even greater number – 9%–61% – experience POTS-like symptoms after infection. POTS is also 5x more likely to affect women and those who were assigned female at birth.

But what in the world is POTS?

POTS or Postural Tachycardia Syndrome is a disorder of the autonomic nervous system. That’s the part of the nervous system responsible for regulating bodily functions including breathing, heart rate, and blood pressure. Normally, the autonomic nervous system helps maintain the balance between blood flow, heart rate, and blood pressure no matter your body position.

This all goes awry in individuals with POTS. People with POTS have low blood pressure and their bodies have a difficult time getting the blood back to the heart from the extremities (arms and legs). For example, when someone with POTS sits up from lying down or stands up from squatting or sitting, their blood pressure tanks, making them feel dizzy and maybe even nauseated. The body tries to compensate by speeding up the heart rate (but excessively); sometimes leading to heart palpitations. And this doesn’t happen infrequently. It happens a lot throughout the day and may occur with every change of
position for some individuals. The worst part is that the sensation of dizziness doesn’t always go away.

There are a whole host of other symptoms that people with POTS can experience including chronic fatigue, headaches, brain fog, irritable bowel, heat intolerance, shortness of breath, and exercise intolerance (just to name a few). Some individuals with POTS can have any, all, or some of these symptoms at all times.

It’s Not “All in Your Head”

From the time I was a teenager, I had terrible headaches. I saw several doctors, but no one could ever figure out WHY I was having headaches. The fact that no one could seem to help me made me feel confused and alone. I just continued to go through life with chronic headaches.

In college, I fainted a couple of times; while standing and talking with a co-worker, after a workout at the gym. I thought I had low blood sugar. That’s what the doctors told me but to my recollection, no one
ever actually checked my blood sugar levels.

I felt horrible when I was pregnant with our one and only child. I had a tough time standing up to work on patients because I felt like I was going to faint. I was referred to a cardiologist who determined that I had vasovagal syndrome. He told me to eat a couple of tablespoons of salt every day and eat salty food. It got me through.

When my son was old enough to go to the park and play hide and seek, I felt cranky and didn’t want to play because I needed to sit down. I felt fatigued and light-headed and just weird. It was even worse in hot weather. I felt completely drained of energy and had pounding headaches in the heat.

I have always been a runner, but post-partum something changed. My legs felt like lead when I ran and I would get short of breath if I had to run up a hill. I never looked forward to my runs like I had before pregnancy because I felt crappy. At this point , I really didn’t know how to make sense of what I was experiencing and feeling. because I LOOKED fine and everything always checked out fine at my yearly physicals.

Getting Clarity and a Diagnosis

Thankfully, we live in a high-tech world. We have all kinds of gadgets available to help us keep track of steps, calories burned, sleep, and HEART RATE. In 2018, I started paying more attention to what my watch was telling me. I would feel sick after doing an upper body workout, but I would also feel sick from something as simple as styling my hair. My heart rate would jump from 55 BPM in standing to 118 BPM when I was drying my hair. I had heart palpitations, headaches, constantly felt fatigued, and was not always mentally sharp because it’s hard to focus when feeling awful.

At the time, I was treating a patient with POTS. When she told me about her symptoms, I kept thinking “check, check, check – yep I have all of those too”. I went to my doctor and told her I thought I had POTS. She referred me to an awesome cardiologist, and the rest is history.

Over the years, I’ve learned how to manage my POTS using life hacks like compression socks, salt supplements, and exercise. Most of the time, my symptoms don’t keep me from doing the things I need to do or the things I enjoy. I still run, I play football and basketball with my son, I can stand a good part of the day while treating patients, and I have more energy. Some days are better than other days (which is typical with POTS) but all in all, the good days outnumber the bad. While my POTS will never go away, I feel like I have control over my body and I know what to do to try to improve the way I feel.

Physical Therapy Treatment Can Help Improve Quality of Life

As a physical therapist, I have started treating patients with POTS, and I LOVE it. I love being able to share my life hacks with my patients and help them learn how to exercise or progress their exercise tolerance. Exercise is the key and there’s good research to back that up.

Bouts of exercise help to increase circulation because the muscles can more readily return blood to the heart when they are moving and pumping. Cardio training can improve how much blood your heart pumps, which can help with symptoms of low blood pressure. It also helps increase your heart’s muscle mass, particularly in your left ventricle, where your blood gets pumped out to your body. Cardio training also helps your body to learn when it needs to increase heart rate (activity/work) and when to decrease heart rate (rest). Strength training can minimize blood pooling in your legs by returning blood back up to the heart.

Because exercise is such an effective way to treat and manage POTS, I prescribe exercise for patients daily. Physical therapists are musculoskeletal experts and the most highly qualified provider to help you safely begin an exercise program, monitor your symptoms, and progress your routine. As a physical therapist with POTS, I am in a unique position because I have both the clinical skills and personal experience to help you improve the quality of your life.

If any of the scenarios or symptoms I’ve described sound familiar to you, it might be time to ask your doctor about POTS. It would also be a great time to call Adeo Physical Therapy and schedule an initial evaluation with me so I can help you better manage your symptoms and start feeling better.

Dr. Leanne Johnston earned her Doctor of Physical Therapy degree from the University of Southern California in 2002. Dr. Johnston has a strong background in orthopedic rehabilitation (including trigger point dry needling) but specializes in treating pelvic floor dysfunction and POTS. She enjoys being able to combine her skills to provide a “whole person” approach to treatment. She believes in empowering her patients with the education and tools they need to improve and manage their conditions.

Contact Adeo Physical Therapy via our Contact page or call 970-339-0011.