A condition called POTS rose after covid, but patients can't find care
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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 many patients are dismissed 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."
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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.
"I would go to the doctor, and he just started telling me, 'No, I think you just have anxiety,'" she said. "And I was like, you know what? I have anxiety because of what's happening to me."
Baez was finally seen by a cardiologist who diagnosed POTS in early 2022.
Life has changed dramatically for Baez since developing POTS. She needs to use a wheelchair to go longer distances and a shower chair to bathe. She gets dizzy if she sits upright or stands for long periods of time. Before getting sick, she was painting and interviewing for a job as a medical secretary. She can no longer work and can only paint in short bursts.
Now, Baez is taking salt tablets and fluids and wears compression garments, which are both common interventions for POTS. She hasn't been able to find a POTS specialist in her area. She sees a cardiologist and has been trying alternative treatments like acupuncture and herbal medicine.
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A two-year waiting list for POTS patients
Part of the problem in diagnosing and treating POTS patients is that many doctors aren't familiar with it and patients often see multiple doctors before finally getting diagnosed. One study of more than 4,800 POTS patients found that most didn't get diagnosed until a year or more after first seeing a doctor, and the average diagnostic delay was nearly five years.
It's still unclear how many covid patients develop POTS. Studies show that anywhere from 2 percent to 14 percent of people with covid develop POTS. One study of long covid patients found that overall 30 percent met the criteria for POTS, although it was far more common in women. In that study, 36 percent of women met criteria for POTS compared to 7 percent of men.
Before the pandemic, Tae Chung, director of the Johns Hopkins Postural Orthostatic Tachycardia Syndrome (POTS) program, said he had an appointment wait list that was about a year long, which was on par with many other POTS clinics. Now it's a little over two years long, he said.
Fries, the cardiologist and POTS specialist at Rochester Regional Health, said most cardiology appointments take about 40 minutes, but because of the complexity of symptoms associated with POTS, most of his appointments with POTS patients take 60 to 80 minutes. Because his caseload of POTS patients has roughly doubled since the pandemic, leading to longer wait times, Fries has started working on Saturdays.
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A lack of answers
After Jillian York, 17, of Spring, Tex., got covid in June 2022, she experienced stomach aches and excessive sweating, and began having trouble sleeping. She felt dizzy after standing up and like she might faint when she performed as a drum major in her marching band. Getting up from the sofa caused her to blackout for a few seconds.
Her mother, Heather York, 49, said she initially thought the Texas heat was to blame, but it soon became apparent that something was off.
She started taking her daughter to doctors, but felt dismissed. Doctors attributed Jillian's symptoms to her recent weight loss, despite the fact that she remained at a healthy weight.
Jillian said doctors made her feel "minimized." "I just felt really lost," she said.
Finally, in November, her mother took her to a pediatric neurologist, who told Jillian that she had POTS.
Jillian has struggled to find a treatment that works. She has seen numerous cardiologists and other specialists and tried alternative interventions like acupuncture. Physical therapy has offered some relief, she said.
"The lack of answers is the most frustrating thing that I have to go through," Jillian said. "I know that more and more people are getting it, so why is it not being talked about?"
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At least a million new patients
While nobody knows exactly what causes POTS, symptoms commonly develop following a concussion or viral illness, said Satish Raj, a cardiac sciences professor and POTS expert at the Libin Cardiovascular Institute at the University of Calgary. Most POTS patients are women.
"There's an element of dismissiveness and misogyny in the room. The POTS demographic is women who, for the most part, look pretty well," Raj said. "They complain that their heart is racing, and I think that gets dismissed as anxiety a lot."
POTS wasn't widely recognized as a real condition by the medical industry until a little more than two decades ago. In the United States, the condition only received a distinct diagnostic code in October 2022. Without a diagnostic code, POTS often got lumped in with other heart conditions, which is why it's been difficult to track the overall number of POTS patients.
Before covid, experts estimated there were about 1 to 3 million Americans who had POTS. And now there are at least 1 million or more new POTS patients as a result of covid, said Pam R. Taub, a cardiologist and professor of medicine at UC San Diego School of Medicine, who is researching post-covid POTS for National Institutes of Health's Recover covid initiative.
Another barrier is that even after POTS was recognized, there historically has been little funding from organizations like the National Institutes of Health to research POTS or any potential cure. One analysis found that NIH allocated, on average, $1.5 million dollars for POTS research funding per year between 2015 and 2020, whereas other diseases that are about as common in women as POTS, like multiple sclerosis and lupus, have received an annual average funding of $118 million or $127 million respectively.
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Potential treatments for POTS
POTS patients often have low blood volume and difficulty with blood vessel constriction, so their blood tends to pool below their heart when they stand up. This depletes vital blood flow to the brain and can result in dizziness, brain fog or fainting.
Ingesting more salt and drinking more water may help people with POTS retain more fluid and increase their blood volume, experts say.
In a small, controlled Vanderbilt University study, researchers found that a high salt diet improved but didn't eliminate many symptoms of POTS.
How much salt and water an individual with POTS needs can vary, but a high-salt diet may not always be appropriate for patients with cardiac complications from covid or high blood pressure, according to Svetlana Blitshteyn, an associate neurology professor at the University of Buffalo who is the director and founder of the Dysautonomia Clinic, which specializes in treating POTS patients.
Other interventions include beta blockers or other drugs that can decrease heart rate. Medications to help the body better absorb salt and fluid, or blood vessel constriction medication, which allows the body to more easily get blood back to the heart and brain, are also used, she said.
Physical therapy can also help many POTS patients, according to Thomas Chelimsky, neurology professor and director of the Comprehensive Autonomic Program and Autonomic Laboratory at Virginia Commonwealth University.
Because POTS patients are sensitive to the effects of gravity, he typically has his patients start exercising from a seated or laying down position, or while in a pool.
With treatment, Maura White, 44, of Rochester, N.Y., has significantly improved. She was diagnosed with POTS last October after getting sick for a second time with covid in April 2022. Before she got help, she was fainting about once a week and had a fluctuating heart rate.
"I met with my general practitioner four, five or six times, each time going in, crying and saying 'I'm not getting better, I'm not getting better.' She would just say 'You're going to get better,'" White recalled.
It wasn't until White went to physical therapy that she found out she might have POTS. White was finally diagnosed by a cardiologist in October and started taking beta blockers along with wearing compression stockings, eating more salt and doing physical therapy.
She hasn't fainted since starting the treatments. Although she used to be an avid runner, she isn't able to stand for long stretches of time. Now she sits on a bench to shower, relies on grocery pickup so she doesn't have to walk store aisles and rents a scooter for longer outings. She also sleeps about 12 hours a night and continues to have other symptoms like tingling hands and feet, muscle twitches, diarrhea and brain fog.
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Worsening symptoms after covid
In some cases, covid seems to be worsening symptoms for existing POTS patients. Hanna Rutter Gully, 32, of Brooklyn developed POTS at the age of 17 after a concussion while playing soccer. She wasn't diagnosed until six and half years after the injury.
Her symptoms, which included dizziness, migraines, cognitive issues and fatigue, made it difficult for her to attend college. She took an extra three semesters to graduate, finished many semesters remotely and had her sister move in with her in her final year of college to help her.
Once she got diagnosed and got treatment, she was able to work her way up to living independently in New York and working full time as a corporate partnerships manager for Girls Who Code. Then, she got sick with covid in spring 2020 and her symptoms worsened to the point where she had to stop working.
"You name it, and it's gotten worse," she said.
Pre-covid POTS patients are having trouble getting appointments with specialists as well. Cara McGowan, 37, of Deerfield Ill., leads an Illinois support group for POTS patients. She has noticed that people have started to become more desperate for help. Some have lost their jobs as a result of their inability to get treated, she said.
"The patient community is in crisis," she said. "If you can't take care of your health, everything else falls apart too."
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Patients supporting other patients
In many cases, patients are learning more about POTS from each other than they are from doctors, said Charlie McCone, 33 of San Francisco, California.
McCone was a tennis, running and cycling enthusiast before he got sick with covid in March 2020. Then, he developed shortness of breath, chest pain, full body twitches, a rapid heart beat and fatigue, among other symptoms.
After a second covid infection in August 2021, his symptoms worsened to the point where he had to stop working in his nonprofit marketing job. He couldn't stand for more than five minutes or sit upright for more than 10 minutes without experiencing symptoms.
He was not taken seriously by doctors, he said, and one doctor laughed at him when he asked whether his symptoms could be related to his covid infections.
It was only through a long covid support group that he figured out others were having the same issues. After seeing three cardiologists and two neurologists, he was finally referred to Stanford's Autonomic Disorders Program and got diagnosed with POTS in May 2021.
With treatment like compression socks and increased salt and fluid, he can now tolerate sitting up for 20 minutes before symptoms begin but still has trouble leaving the house.
"It's so frustrating that we are three years into this and long covid patients are having an incredibly difficult time getting a diagnosis and having their symptoms validated," he said.
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