Postural Orthostatic Tachycardia Syndrome, or POTS, is a medical condition that is affecting more and more people. It’s characterized by a long list of symptoms that affect the day to day life of someone living with this condition. Things like extreme fatigue, fainting, high heart rate, blood pooling, brain fog, and more.
Many people are being newly diagnosed with POTS after exposure to COVID!
Long COVID and POTS
COVID has brought on a lot of change in our world, and many people who had COVID are still experiencing symptoms long after they’ve recovered from the virus. This is something called long COVID. People who experience this report more fatigue, headache, sleep problems, lightheadedness, brain fog, anxiety, and more. Long COVID can last weeks or months after your initial infection.
More common in women than men, POTS is the most common dysfunction of the autonomic nervous system within the US. We know that exposure to a virus, bacteria, and physically stressful events can cause your body to trigger POTS. In fact, 41% of people with POTS report that it was triggered by a viral event. Which leads up to our question… is it long COVID or is it POTS?
Is It Long COVID or POTS?
It’s no wonder people are beginning to wonder which they have. The symptoms of both POTS and Long COVID are largely similar. Prior or COVID, around one to three million people were diagnosed with POTS. Post COVID we expect to see a sharp increase in the numbers.
Researchers are just now beginning to understand the world we are living in post COVID. We are learning new and important things everyday, but one thing we know for sure is that some post COVID “long haulers” may actually have POTS. According to John’s Hopkins, even mild cases of COVID illnesses can be triggering the autonomic dysfunction leading to a POTS diagnosis.
According to studies, anywhere from 10% to 40% of people who have experienced long COVID may have triggered a dysfunction of their autonomic system (known as dysautonomia). People with POTS often have higher inflammatory markers than those without, and the COVID long haulers are also showing the same inflammatory markers.
Getting a Diagnosis of POTS after Long COVID
Overall, it’s hard to say if you’re experiencing long covid or if you’re one of the many people who are newly diagnosed with POTS post COVID. Doctors have gotten a new influx of patients, and that’s a problem. Even before COVID, the number of physicians who even knew about the existence of POTS was small in comparison to how many people were seeking treatment. Now, post COVID, the amount of people seeking treatment has greatly increased while the number of familiar doctors hasn’t changed significantly.
This can be a scary thing if you’re seeking treatment for POTS because you suspect you have it post COVID. In the past it would take patients up to six years to achieve a diagnosis. According to Dysautonomia International, more than half of those people had to travel more than 100 miles to seek a specialist who was able to help with 27% of people visiting more than 10 doctors to get a diagnosis! All that prior to COVID!
What Can I Do While Waiting for a Doctor?
There’s things you can do to prepare for a doctor's appointment, even if it’s your family care doctor and not yet a specialist. Here’s some tips:
- Try the “Poor Man’s Tilt Table Test”. Doing this at home and taking the results to your doctor so you can advocate for a diagnosis can be a lifesaver! If your heart rate increases more than 30 beats a minute from sitting to standing it’s possible you may have POTS post COVID. Here’s a tutorial on how to do the test at home.
- Read as much as possible about POTS. If you are aware of the signs and symptoms of POTS then you can advocate for yourself more when you are finally in front of a doctor. Dysautonomia International is a great resource and first place to start when trying to learn as much as you can.
- Join a Facebook group. Join a group of people who have POTS. Ask questions. Listen to their stories. Not only will it give you some support from people experiencing similar symptoms, it can also give you insight from real world people.
- Increase your hydration. One of the ways to manage symptoms of POTS is to increase your hydration and salt levels. This is done by increasing your electrolyte balances which can manage your symptoms. ORS solutions like Normalyte have been clinically proven to treat symptoms of POTS in a study. Find the study here.
Waiting for a diagnosis is the worst thing when you’re not feeling well and you just want to get better. Be patient while you’re waiting, but in that patience learn to advocate and be ready to educate your doctor on POTS post COVID. It may be the thing that gets you feeling better quicker.