Daily Briefing

POTS affects millions of Americans — but we know little about it


Editor's note: This popular story from the Daily Briefing's archives was republished on June 2, 2023.

Since the pandemic, cases of postural orthostatic tachycardia syndrome (POTS) have risen significantly, particularly among young women, and can lead to debilitating symptoms. However, many patients have struggled to get properly diagnosed and find effective treatment for the condition, often being diagnosed with anxiety instead.

POTS is on the rise after COVID-19 infections

According to the Washington Post, POTS is a condition that affects the autonomic nervous system, which regulates involuntary bodily functions such as heart rate, blood pressure, and digestion. The condition can lead to low blood volume and poor blood vessel constriction, and some symptoms include fainting, irregular heartbeats, fatigue, and more.

"When the autonomic nervous system is not functioning properly, any or all of those things can go a little haywire," said David Fries, a cardiologist and POTS specialist at Rochester Regional Health.

Although the cause of POTS is unclear, it often develops after a concussion or viral illness. Prior to the pandemic, there were an estimated 1 to 3 million Americans with the condition. But now, experts say that there may be at least 1 million or more new POTS patients likely as a result of COVID-19.

Recently, Bethenny Frankel, a former "Real Housewives of New York City" star, opened up about her struggle with POTS after having COVID-19.

"This is an auto-immune disorder that seems to have been drastically exacerbated since COVID," she wrote on Instagram. " … I have always experienced extremely low blood pressure and dehydration, but it's gotten exponentially worse."

So far, it's unclear how many COVID-19 patients have developed POTS. Some studies show that anywhere between 2% and 14% of people with COVID-19 go on to develop POTS, while another study suggested that around 30% of long COVID patients meet the criteria for POTS, particularly women.

Although symptoms of POTS vary, they can be "debilitating" for some patients, according to the Post. COVID-19 has also sometimes exacerbated symptoms among existing POTS patients, with some now facing heightened difficulties with their work or daily lives.

"You name it, and it's gotten worse," said Hanna Rutter Gully, who developed POTS as a teenager after a concussion playing soccer. After getting COVID-19 in spring 2020, her symptoms, which include dizziness, migraines, fatigue, and cognitive issues, worsened to the point that she had to stop working.

Patients face difficulties getting diagnosed, finding treatment

Although millions of patients suffer from POTS, the condition is often overlooked. According to the Post, POTS was not recognized as a real medical condition until roughly 20 years ago, and it only just received a specific diagnostic code in October 2022.

Because of this, relatively few doctors are familiar with POTS, and patients often have to see multiple doctors before they are properly diagnosed. In a study of over 4,800 POTS patients, most said they were not diagnosed until a year or more after first visiting a doctor about their symptoms, with the average delay being almost five years.

Angelica Baez, a 25-year-old who developed POTS after having COVID-19 in March 2020, said she frequently visited the ED when her heart rate spiked after just standing up or walking short distances and consulted with various doctors, but they would often dismiss her concerns.

"I would go to the doctor, and he just started telling me, 'No, I think you just have anxiety,'" Baez said "And I was like, you know what? I have anxiety because of what's happening to me." A cardiologist eventually diagnosed her with POTS in early 2022.

"There's an element of dismissiveness and misogyny in the room. The POTS demographic is women who, for the most part, look pretty well," said Satish Raj, a cardiac sciences professor and POTS expert at the Libin Cardiovascular Institute at the University of Calgary. "They complain that their heart is racing, and I think that gets dismissed as anxiety a lot."

However, even after patients get diagnosed, they often face long waiting lists — up to two years — for treatment, largely due to a shortage of medical professionals who know how to care for POTS.

"They were overwhelmed and flooded long before covid," said Lauren Stiles, president and CEO of the nonprofit advocacy group Dysautonomia International. "We need to increase the amount of experts in this because it wasn't enough before covid, and it's certainly not enough now."

It can also be difficult to find the right treatment since there is currently no cure for the condition. Some potential treatments include dietary changes to increase salt and water intake, medications to decrease heart rate or improve blood vessel constriction, compression garments, and physical therapy.

According to Cara McGowan, who leads a support group for those with POTS in Illinois, many patients are starting to become more desperate as they struggle to get treatment for their symptoms. "The patient community is in crisis," she said "If you can't take care of your health, everything else falls apart too." (Morris, Washington Post, 2/27; Brockington/Hines, Today, 2/23; Vulpo, E! News, 2/24)

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