In the aftermath of the pandemic that began in early 2020, we are hearing more and more about a syndrome evolving known as post-acute sequelae SARS-CoV-2 infection (PASC), otherwise known as long COVID. Interestingly, a syndrome that isn’t new but is not well known is now receiving more exposure as a potential symptom of long COVID: Postural Orthostatic Tachycardia Syndrome (POTS). This is a long and fancy term for a person who has an intolerance to being upright. While it sounds relatively benign, POTS is anything but harmless. Here’s everything you need to know about this little-known disorder.
POTS is defined by an increase of a person’s heart rate by at least 30 beats per minute (BPM) within ten minutes of standing without a simultaneous drop in blood pressure. Johns Hopkins Medicine explains that symptoms of POTS can develop slowly or suddenly and can vary from person to person. They include long-lasting and severe fatigue, lightheadedness while standing (with or without fainting), brain fog, pounding heartbeat and/or heart palpitations, nausea, vomiting, headaches, excessive sweating, exercise intolerance, and shakiness, to name a few. Heat, dehydration, illness, and standing or walking for long periods of time can make the symptoms worse. These symptoms might be specific to POTS, but they are what are considered nonspecific symptoms, meaning you can find these symptoms in a large number of diseases and syndromes.
According to the American Autonomic Society, it’s theorized that POTS symptoms were noted as far back as World War I. However, it wasn’t until the early 1960s that it became the focus of study for Dr. Phillip Low, MD, Professor of Neurology at the Mayo Clinic in Rochester, Minnesota, who is now considered one of the utmost experts on POTS.
Usually, when a person stands, blood is drawn toward the lower body by gravity. This change in position triggers an automatic response in our body to do several things. First, blood vessels in the abdomen and lower body constrict to slow the blood flowing to the feet and legs. Then, the heart rate increases its pace and strength to assist in bringing the correct blood volume back up to the body’s major organs like the brain, lungs, and heart. However, when a person with POTS stands, the blood vessels fail to constrict sufficiently, allowing blood to pool in the lower legs and feet. This triggers the brain to send the message to the heart to work faster and harder to return the blood to the middle and upper body where our major organs reside, causing lightheadedness, tachycardia (fast heartbeat), shortness of breath, and heart palpitations.
It’s easy to see how long COVID has contributed to shining a spotlight on POTS. By now, most of us understand that the people who developed more severe COVID infections were those in high-risk categories, such as older adults and those with one (or more) chronic conditions. And those with more severe COVID infections tend to make up the majority of long COVID patients.
Several chronic conditions are known to damage the autonomic nervous system. This damage is considered to be the cause of POTS. What is not clear from researching long COVID is whether or not POTS symptoms were evident before the person became ill, were they just exacerbated by the infection, or did an active COVID infection lead to the damage and, therefore, the resulting POTS. It will be interesting to follow the long-term case studies to see if researchers can determine a distinction.
To add to the confusion as to which came first, we are also seeing an emerging number of people who received COVID vaccinations but never developed an active infection and have now been diagnosed with POTS. Using the same logic just mentioned, it may never be clear for some of those patients whether or not the resulting POTS is an actual vaccine injury.
POTS is a chronic (long-term) condition. There is currently no cure, and treatments mainly aim to ease the symptoms. A few medications are approved to treat POTS. Still, most healthcare providers prefer lifestyle modifications over medication as they seem to be the most effective. Patients are encouraged to consume a large amount of salt daily (anywhere from 2000 to 8000mg, depending on patients’ needs). Extra hydration (as much as two to three litres of fluid each day, mainly water) is highly encouraged. Eating several smaller meals throughout the day rather than three large ones helps decrease symptoms. And sitting or lying down when symptoms are escalating is another behaviour POTS patients are encouraged to adopt.
For those who haven’t been diagnosed with POTS or have any symptoms, it’s hard to understand how much this syndrome can affect your daily life. To better illustrate how life-changing this disorder is, I’ll use myself and my daily activities to shed some light on this.
Before I began having POTS symptoms, I was an active person. I exercised three to five days a week, cared for three young children, and worked part-time as a Neonatal ICU nurse. There was also volunteering, shopping, and general activities requiring a good bit of walking. Now, I have severe exercise intolerance, meaning my heart rate will exceed 200 beats per minute during light cardio exercises. Walking for more than five minutes significantly worsens my symptoms, and working 12 hours shifts mostly on my feet is no longer possible. And this brings me to the fact that I sometimes require assistance walking. Depending on how far or how long I need to walk, that might mean either a walker or a wheelchair.
Some lifestyle modifications I have had to adopt include: drinking at least two liters of water daily (which also means I visit the restroom a lot!), increasing my salt intake to nearly 4000mg per day, wearing compression garments when I’m going to be more active, and generally being very aware of what my body is telling me.
I also have frequent and sometimes severe nausea, so Zofran (an anti-nausea medicine) has become my constant companion. I have, thankfully, never fainted from POTS symptoms, but I have come precariously close to doing so. My first POTS flare sent me to the emergency room for more than 12 hours of fluids and close observation due to heart symptoms and extreme dizziness. The doctors thought I was having a heart attack. Needless to say, my daily life looks quite different today than it did before POTS, and my symptoms fall on the less severe side of the scale than most.
If you believe you are experiencing symptoms of POTS, start by visiting your primary care physician. Take a written list of your symptoms, a comprehensive list of all medications (prescriptions and over-the-counter, including any supplements you are taking), and a timeline of when your symptoms began and how often you experience them. Be prepared to have many medical tests performed. Unfortunately, the average time for a POTS diagnosis is nearly six years. Advocating for yourself, keeping track of medical tests and procedures and their results, and being proactive in promptly following up with providers will go a long way in decreasing the time until you receive a diagnosis.
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