Tag: diagnosis

POTS rose after covid. Patients face delays in diagnosis and treatment.

Dania
POTS rose after covid. Patients face delays in diagnosis and treatment.

Covid is causing a sharp rise in cases of postural orthostatic tachycardia syndrome, a disorder of the autonomic nervous system that causes rapid heart rate, fainting and dizziness

February 27, 2023 at 6:00 a.m. EST

Angelica Baez uses a motorized chair to get around a park in Sacramento on Feb. 3. Baez developed postural tachycardia syndrome, called POTS, after getting covid in 2020. She quickly becomes fatigued by walking. (Max Whittaker for The Washington Post)

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A life-changing condition called POTS, which can cause fainting, irregular heartbeats and dizziness, particularly among young women, appears to be on the rise as a result of the coronavirus pandemic.

But the condition isn’t well understood, and doctors dismiss many patients as having anxiety, delaying diagnosis. Once diagnosed, many patients face waiting lists as long as two years to get treatment from specialists.

POTS stands for postural orthostatic tachycardia syndrome, a disorder of the autonomic nervous system, which regulates involuntary functions like heart rate, blood pressure and digestion.

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

POTS patients typically experience a marked rise in heart rate when standing and a complex combination of symptoms, including dizziness, brain fog, fainting, headache and fatigue, among many others.

There is no known cure for POTS, but physical therapy, medications and diet changes related to salt intake can sometimes help.

Experts say there is a dire shortage of medical professionals who know how to care for patients with POTS. Lauren Stiles, president and chief executive of Dysautonomia International, a nonprofit advocacy group, estimates that the number of people with POTS has at least doubled since the start of the pandemic, while the number of specialists has remained the same and waiting lists are getting longer.

“They were overwhelmed and flooded long before covid,” Stiles said “We need to increase the amount of experts in this because it wasn’t enough before covid, and it’s certainly not enough now.”

POTS symptoms are often diagnosed as anxiety

Symptoms can vary widely, and in some cases, can be debilitating.

Angelica Baez, 25, of Sacramento, got sick with covid in March 2020. Soon after, she developed unusual symptoms, including tingling hands, frequent diarrhea and either feeling extremely cold or extremely hot. But the most debilitating symptom was that she almost constantly felt dizzy. She often felt like she might pass out and had trouble walking long distances.

“My heart started going insane. I could feel it pounding in my chest,” she recalled. “I literally felt like I was going to die.”

Just standing up or walking across the kitchen caused her heart rate to spike to 160 beats per minute, and she frequently rushed to the E.R., worried that she was having a heart attack. She tried consulting various doctors but was dismissed because nothing seemed wrong with her heart or overall health.

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Long COVID diagnosis puts extra strain on family caregivers : Shots

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Long COVID diagnosis puts extra strain on family caregivers : Shots

Louise Salant (right), 72, and her aunt Eileen Salant (center), 86, both got very sick with COVID-19 in 2020. And as Eileen developed long COVID symptoms, so too did Louise, who struggled with fatigue and shortness of breath while also managing her aunt’s care. Nearly three years later, home health aides like Elfnesh Legesse (left) help Louise take care of her aunt.

Gabriela Bhaskar for NPR


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Gabriela Bhaskar for NPR

Louise Salant (right), 72, and her aunt Eileen Salant (center), 86, both got very sick with COVID-19 in 2020. And as Eileen developed long COVID symptoms, so too did Louise, who struggled with fatigue and shortness of breath while also managing her aunt’s care. Nearly three years later, home health aides like Elfnesh Legesse (left) help Louise take care of her aunt.

Gabriela Bhaskar for NPR

For Louise Salant, long COVID has meant new stress, new responsibilities, and multiple medical crises to manage. It’s transformed her life.

But there’s a twist. She’s had to deal with this condition not just as a patient but also as a caregiver for her 86-year-old aunt Eileen Salant, who has coped with long COVID’s disabling symptoms for almost three years.

Eileen and Louise both caught an acute bout of COVID-19 in March of 2020. Eileen had been taking care of her brother, who was admitted to a New York City hospital with heart failure during those dark days of the early pandemic. He got COVID there, and died from his infection with the virus. Both aunt and niece also became very ill.

It was early days of the pandemic in New York, and hospitals were so crowded that Louise was told to stay home and fight out the illness on her own. Meanwhile, Eileen was hospitalized and stayed there all spring, including two months on a ventilator. After that, she spent five months at a rehab hospital. She finally came home to her apartment in Riverdale, the Bronx, the day before Thanksgiving in 2020 — but she was very weak.

Eileen and Louise both got COVID-19 in the early days of the pandemic in New York. Eileen ended up on a ventilator for two months and then spent five months in a rehab hospital. Louise fought the illness at home as hospitals started filling up.

Gabriela Bhaskar for NPR


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Gabriela Bhaskar for NPR

Eileen and Louise both got COVID-19 in the early days of the pandemic in New York. Eileen ended up on a ventilator for two months and then spent five months in a rehab hospital. Louise fought the illness at home as hospitals started filling up.

Gabriela Bhaskar for NPR

“She could barely sit up in bed, couldn’t hold a fork,” says Louise, who lives a 10-minute taxi ride away.

Over the years, Louise, now 72, has worked at various times as an art therapist, taught piano to children and adults and done medical interviewing for a cancer research team. But when COVID hit,

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