By Joan Tupponce 

Imagine your brain is a computer. As you turn it on for a regular workday, you notice something is off – the web browsers are loading slowly, applications crash when you try to open them, and rebooting doesn’t change a thing. That’s how people with Postural Orthostatic Tachycardia Syndrome, commonly known as POTS, feel on a daily basis. 

When tested, everything related to the hard drive (or brain in this case) comes back fine. But, it’s not the hard drive that is malfunctioning, “it’s the software,” said Thomas Chelimsky, M.D., professor in the Department of Neurology at Virginia Commonwealth University’s School of Medicine and the director of the Comprehensive Autonomic Program and Autonomic Laboratory. 

While many people aren’t familiar with POTS, it is more common than you may think. As of 2019, an estimated one to three million people are affected by it in the United States. 

Reference to POTS was first made by a team of researchers in 1993, but the syndrome didn’t receive its own diagnostic code until October 2022 in the U.S. POTS has garnered more attention in the last 20 years, in part because the condition has a possible connection to long COVID. Highly decorated U.S. swimmer Katie Ledecky also revealed she suffers from the condition during the Paris 2024 Summer Olympics. 

Thomas Chelimsky and his wife, Gisela Chelimsky, M.D., professor in the School of Medicine’s Department of Pediatrics and chief of pediatric gastroenterology at Children’s Hospital of Richmond at VCU (CHoR), both work with children and young adults with the syndrome. They shared insights with VCU Health News on the POTS symptoms and the impact the condition has on patients. 

What is POTS and what are symptoms of the condition? 

POTS primarily affects people going from a lying down position to standing. Their heart rate increases more than normal. People less than 19 years of age may see their heart rate go up more than 40 beats per minute, and older people may see an increase of 30 beats with no drop in blood pressure. 

Symptoms are very similar for patients of all ages, including, but not limited to, lightheadedness, dizziness, fainting, nausea, headaches, brain fog and severe fatigue.  

The symptoms can get worse if an individual becomes less active. Some kids can become completely disabled because they spend most of their day in bed. 

For kids, POTS usually hits in puberty. It is usually a disorder of younger adults, from the 20s to 50s that mainly affects women. We don’t know why more women have POTS. There is a lot of research going on into this. 

What causes these symptoms? 

One possible explanation is that the fight or flight response has been activated and did not turn off properly, which produces Persistent Sympathetic Activation (PSA). The fight or flight response turns on when you need to fight or run from a threat, but then it should turn off when the threat is over. 

We believe POTS may result from the system failing to turn off. PSA typically occurs after a trauma, where the brain trauma management mechanisms fail to reset properly. This can happen after a traumatic brain injury, emotional or abusive traumatic events, or even being sick with COVID-19 or mononucleosis. 

How do you get POTS and is it hereditary? 

At this point, it’s not entirely clear how people develop POTS. There is often a trigger, such as an infection or traumatic experience. POTS tends to run in families. However, this may be due to several family members experiencing similar triggers as much as it could be related to genetics.  

We believe that POTS is a disorder generated by the brain, similar to other disorders like migraine headaches or Parkinson’s disease. 

How do you treat POTS? 

The most complicated piece of this puzzle is turning off the fight or flight response that appears to be causing these symptoms. We use a three-part process to manage POTS. 

First, you give the person support by getting salt and fluid in their system. They may need medication to slow down their heart rate as well, though the ultimate goal is to wean the patient off these medications. 

Second, you have to activate the body through an exercise program, physical and occupational therapies to slowly start the process of re-exercising your body. A good approach is using a low gravity environment such as a recumbent bicycle or exercising in the pool. You should start low and go slow. 

Third, we use a bio-behavioral approach the includes cognitive behavioral therapy with a psychologist who can teach the patient to reframe the trauma, so the patient is not triggering the fight or flight system. This can include medication and changes in lifestyle. Other activities may include yoga, diaphragmatic breathing, tai-chi, and Pilates, to name a few. 

Once you are diagnosed with POTS, do you always have it or can you get over it? 

We have many patients who are basically cured and go on with their lives and never have symptoms occur again. They have learned a lot about managing the condition. There is a lot of research going on at VCU and other institutions to better understand the causes of POTS and develop targeted treatments. 

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