Tara Pixley for NPR
In the months after she first got sick with COVID-19 in March 2020, Jennifer Minhas developed a cluster of mysterious symptoms.
“I had profound fatigue,” she says, along with brain fog, headaches and a rapid heartbeat, especially when she changed positions from lying down to standing up.
“Just standing up to make a sandwich, my heart rate would be 120,” recalls Minhas, a 54-year-old nurse who lives in San Diego. A normal heartbeat for an adult ranges between 60 and 100 beats per minute.
Doctors ordered tests to rule out heart disease. They all came back normal. The doctors couldn’t find anything, Minhas says.
About the same time she developed another strange symptom that offered a clue to her condition.
“I would wake up in the middle of the night with burning hands and feet, and I would look down and my feet would be bright red,” Minhas says. In addition, she continued to feel a tightness in her chest, and the brain fog was so intense at times, she says, she couldn’t remember a four-digit code for her phone.
Her symptoms became so severe that she stopped working. “Normally I’m very active. I used to play tennis and go to the gym,” she says. But all this activity came to a halt.
Yet doctors could not explain what was wrong. At first, her primary care doctor thought it was anxiety.
“It was disconcerting,” Minhas says, and “lingering way too long without a proper answer.” But she persevered, determined to “dig in and look for answers.”
And months later, in late 2020, a breakthrough: A group of cardiologists at the University of California, San Diego helped lead her to a diagnosis of a mercurial and little-known condition: postural orthostatic tachycardia syndrome, or POTS, a blood circulation disorder.
A growing number of people are facing mountains of frustration over health problems that linger after COVID-19 with no clear path to improvement. But for a subset of people with what’s known as “long COVID” — mostly women such as Minhas — a POTS diagnosis offers a road map to treatment options and relief from their often-debilitating symptoms.
COVID-19 brings new cases, new awareness
The doctors told Minhas that they had begun to see other patients after COVID-19 who had developed similar symptoms. They explained to her that an issue with her nervous system was causing her heart to race, usually upon standing — a signature feature of the syndrome — and the circulatory problems.
POTS is a type of dysautonomia, which stems from dysfunction in the autonomic nervous system. That’s the part of the nervous system that works automatically to regulate body functions such as breathing, heart rate, blood pressure and digestion.
Don’t be surprised if you’ve never heard of POTS. “There’s been a lack of awareness” of the condition, even within the medical community, says Dr. Tae Chung, a POTS specialist at Johns Hopkins Medicine in Baltimore.
The syndrome is estimated to affect about 1 million to 3 million people in the U.S. — most commonly women, young adults and adolescents. But the COVID-19 pandemic has brought new attention and many new diagnosed cases.
Absolute numbers of long-haulers aren’t known, but a recent survey in the U.K. found about 13% of people who had COVID-19 continued to have symptoms three months after their initial infection. Experts say a small slice of people with long-haul COVID-19 have symptoms of dysautonomia, though its prevalence is unknown.
What is known, though, is that there is a backlog of patients waiting to be seen, Chung says. As part of the Johns Hopkins Post-Acute COVID-19 clinic team, he sees many patients who have POTS-like symptoms that need to be evaluated, though not all will be diagnosed with the condition.
POTS experts at other academic medical centers — including UC San Diego, where Minhas is being treated — also are reporting an uptick in cases.
Long road to diagnosis
POTS predates the pandemic. It was first named in the 1990s, though it existed – unrecognized – long before, experts say. POTS often comes on suddenly following viral infection, though there are also other triggers, such as a concussion, for instance.
The encouraging news is there are a host of medications and physical therapy that can help. “Many patients do get better, significantly better,” says Dr. Pam Taub, a cardiologist who treats Minhas at UC San Diego.
But in many cases, POTS is a chronic condition, says Dr. Mitch Miglis, an autonomic disorder specialist at Stanford University, and patients require ongoing care. Symptoms can wax and wane over time, but he agrees that “most people get better with treatment.”
POTS has overlapping features with chronic fatigue syndrome, including fatigue and brain fog, and experts who treat it say POTS has had some of the same challenges as CFS in gaining recognition. But this has begun to change as researchers “have shown that there is real biology behind POTS,” Taub says.
Still, even before COVID-19, there were often long delays between the onset of symptoms and getting a diagnosis. Many patients see five or more doctors before they’re diagnosed.
“Even though 90% of people with POTS are females, males actually get diagnosed with POTS an average two years faster than females,” says Lauren Stiles, who was diagnosed with POTS in her early 30s and is the co-founder and president of Dysautonomia International, a nonprofit patient advocacy and research group.
“Young women complaining about multiple symptoms are often told ‘it’s all in your head’ before an autonomic nerve disorder like POTS would even be considered,” Stiles says.
The connection between COVID-19 and POTS
A leading theory for why COVID-19 long-haulers develop the syndrome is that “the antibodies produced after COVID may attack the autonomic nervous system,” says Taub, the UC San Diego cardiologist.
Chung at Johns Hopkins agrees that the onset of POTS following COVID-19 is likely “autoimmune” in nature. “The immune system is confused,” he says, causing the misdirected attacks.
As a result, the ability of the autonomic nervous system to regulate blood flow is damaged. In POTS patients, the nerve that regulates blood flow isn’t working, Chung says, and not enough blood circulates to the brain. That accounts for the brain fog among POTS patients. And exercise is tough, too, because “exercise requires a lot of blood flow to the muscle,” he explains.
Chung uses a combination of tests and symptom history to diagnose POTS, including a tilt-table test. Patients are secured to the table and go from lying to standing up as the head of the table is raised. If a patient’s heart rate jumps significantly when the table goes up and the symptoms are reproduced with that movement, that’s a strong indicator of POTS, Chung says.
Another diagnostic test is a cutaneous nerve biopsy to look at the small fiber nerve in the skin — which makes up the autonomic nervous system — to look for nerve damage.
Medication, physical therapy, diet can all bring relief
After a POTS diagnosis, there are a few treatment routes. Physicians can prescribe various medications to treat symptoms, and there’s some new evidence that a drug called ivabradine can help lower heart rate.
A small double-blinded, placebo-controlled study published this year in the Journal of the American College of Cardiology found ivabradine significantly lowered the heart rate of patients, including 22 people with POTS.
The drug has helped Minhas, the nurse in San Diego, although she pays for it out of pocket because her insurance company denied coverage.
“Within a couple of days, I started feeling better,” she says. “I was able to stand up without feeling a racing heart. I was able to do more activity.”
Tara Pixley for NPR
Patients can use ivabradine as “a bridge,” explains Taub, who is the author of the JACC study and has been a consultant to Amgen, a pharmaceutical company that makes the drug.
Some patients are so disabled by POTS that it’s hard for them even to stand up. But ivabradine enables them to start moving aground again, Taub says. Once their exercise tolerance improves, “they no longer need to rely on the drug,” she says.
Chung says he prescribes ivabradine to some patients, but it’s not right for everyone, since it may exacerbate fatigue, lightheadedness or other typical POTS symptoms. The same goes for beta blockers, another class of drugs that also lowers heart rate, he says.
Other medicines can help, depending on which symptoms are present. For instance, research shows that POTS patients tend to have a lower than normal level of plasma and red blood cells. Patients with these symptoms might benefit from fludrocortisone, which helps to expand blood volume. Mestinon can help prevent increases in heart rate and improve symptoms, too.
Given that POTS is a syndrome with a range of symptoms, Stanford’s Miglis says he chooses medications that are tailored to each patient. “Some patients with brain fog benefit from stimulant medication, for instance,” he says.
Another recommended treatment for POTS patients is to drink lots of fluids.
“I am up to drinking a gallon of water a day,” says Michaelene Carlton, 47, who was recently diagnosed with POTS by Chung. The extra water helps to expand the volume of plasma, which can help tamp down symptoms. Extra salt is recommended, too, since it can help the body retain fluids.
Before her COVID-19 infection about a year ago, Carlton, who lives in Magnolia, Del., was active. She practiced yoga four to five times a week and ran 15 to 20 miles a week.
But now, she’s now on long-term disability and has stopped working as a middle school paraeducator, a job she says she loved. She spends much of the day in bed or on the sofa, because the fatigue, headaches and lightheadedness have been so intense. “It’s slow going,” Carlton says.
She has begun physical therapy to regain strength and muscle mass, especially in her core and legs. The PT regimen emphasizes floor exercises and strength training to avoid sudden positional changes that may exacerbate her symptoms. She’s also pedaling on a recumbent bike to regain some aerobic capacity. “Little by little” is her motto, she says.
Carlton is also trying a new diet that emphasizes fruits, vegetables and proteins, including lean meats. She has cut out refined grains and sugar. Her approach fits with some preliminary research from Vanderbilt University that found POTS symptoms get worse after meals rich in carbohydrates.
That research suggests that “eating small meals throughout the day, and following a low-carb diet, low in refined-grains and sweets could be beneficial, as a complementary approach,” says Dr. Cyndya Shibao, a researcher at Vanderbilt University Medical Center.
It’s been known among POTS patients that eating high-carb meals can make you feel worse, says Stiles of Dysautonomia International. She says this is an example of how people in the POTS community “advise each other” and share information.
As for Minhas, she says pinning down a diagnosis has made her more optimistic.
“I definitely felt a sense of relief,” she says, “somehow we could explain what was going on.” And as she slowly improves, she has become involved in efforts to raise awareness about the condition, and the need for research to understand better all of the post-COVID-19 illnesses.
The National Institutes of Health recently announced a $1.15 billion investment to study long-haul COVID-19. NIH Director Francis Collins says the goal is to “identify the causes of long COVID, to develop ways of treating individuals who don’t fully recover, and, ultimately, to prevent the disorder.”
Advocates in the POTS community such as Stiles say that given the significant number of cases related to COVID-19, it’s essential that some of these research dollars be dedicated to understanding autonomic disorders.
“Millions of long-haulers and people living with other forms of post-viral dysautonomia are counting on the research community to figure this out so they can get back to living their lives,” Stiles says.