Long COVID patients join a chronic illness community seeking answers
Tanya Hovey came down with COVID in April 2020. Before the infection, she ran a photography business, was active in her church, loved to garden and cycled several times a week. She was never hospitalized for COVID and thought she was recovering.
But her symptoms kept coming back. She would feel fine for two or three days, then find herself unable to get out of bed.
“Couldn't move, couldn't breathe. I was dizzy,” Hovey said.
More than two years later, the mother of three in Utah still hasn’t fully recovered.
Getting a diagnosis wasn’t easy. Hovey’s primary care physician ordered tests, which came back normal. She saw doctor after doctor – an ear nose and throat specialist, a neurologist, a pulmonologist, an infectious disease expert and a cardiologist.
None of them had answers, she said. Eventually Hovey joined a Facebook group for COVID long haulers, and that’s when she learned about postural orthostatic tachycardia syndrome, or POTS.
Eventually her cardiologist prescribed a medication that helped ease her symptoms.
“And sure enough, I was able to get out of bed,” Hovey said. “I felt so much better. So he said, ‘Yeah, you have POTS, but I don't know much about POTS. And no one here at the hospital specializes in POTS.’”
The U.S. Centers for Disease Control and Prevention estimates that 1 in 5 Americans who have had COVID will experience long COVID. These patients may continue to have mild to debilitating symptoms for weeks, months or more than a year after the initial infection.
Dr. Esther Vorovich, a cardiologist at Northwestern Medicine in Chicago, said long COVID has increased the number of POTS cases she’s seen. Patients in her clinic have often seen many specialists for their symptoms without getting any answers.
“I have a lot of tears in my long-haul COVID clinic because people have been told that they're crazy … that it's kind of in their head,” Vorovich said. “And so I think the first step is kind of acknowledging that someone doesn't feel well and these symptoms are real.”
So far, Congress has allocated $1.15 billion to the National Institutes of Health to support research on long COVID over the next four years.
While COVID is new, post-viral illnesses are not. Long COVID patients are now finding themselves part of a larger community of chronic illness patients, many of whom have been seeking answers for years.
A difficult disease to understand and treat
The symptoms of POTS can be varied, and the disease isn’t well-understood.
POTS is a condition of the autonomic nervous system — the part of your body that regulates things like blood pressure, heart rate, temperature and digestion. For most people, their body automatically adjusts to changes like standing up, and the heart continues to beat normally and blood flows through the body.
When POTS patients go from a reclined position to standing, the blood vessels in their body may not constrict like they are meant to, and blood pools in their lower body. That can lead to dizziness or fainting. For some POTS patients, standing or even sitting upright for extended periods of time can become impossible.
POTS patients may also have stomach aches, headaches and brain fog. Between one and three million people in the U.S. live with the condition.
Jill Brook, who runs the POTScast podcast, said it took her 17 years to get diagnosed. She first began experiencing symptoms as a teenager in the 1980s. In the early days of the internet, she made her own webpage in an attempt to find any answers.
“I actually made a website that was, ‘my legs hurt dot com,’ hoping somebody out there in the world would get in touch with me because I didn't know what was wrong with me,” Brook said.
She struggled because she didn’t have the vocabulary to explain her symptoms to doctors.
“Our health care system is not set up for people who have complex, chronic multi-symptom things. They're kind of set up for one chief complaint,” Brook said. “So even just to go into a doctor's office and say that you have numerous symptoms was not an easy thing to do.”
Then, Brook had a breakthrough. She was stung by a hornet and had an allergic reaction. When she was treated with antihistamines, she found she could function better. She looked into possible explanations for this welcome relief, and was eventually diagnosed with POTS and mast cell activation syndrome. She was referred to the Mayo Clinic.
But once patients do get a diagnosis, they still face challenges. There is no single treatment for POTS, and managing the illness usually means trying to treat different symptoms. Some patients will benefit from medication, though the U.S. Food and Drug Administration has not approved any drugs to treat POTS specifically. Others make lifestyle changes.
Brook said she’s cobbled together a treatment plan through trial and error over the 30 years of living with the condition. It includes eating more salt, drinking more fluids and not staying still in one position for too long. Brook also gets antibody treatments, but they are expensive and difficult to access because they are not officially approved for her conditions, she said.
Hovey, who was diagnosed with POTS after first having COVID, said a simple trip to the grocery story is now impossible.
“My heart started pounding…. I couldn't breathe, started getting lightheaded, dizzy. I actually thought I was going to pass out,” she said.
For Hovey, managing POTS has meant closing her business, relying more on her husband and children, and no longer doing activities she used to love.
COVID research could benefit POTS patients
While POTS has been around a long time, research into the disease has not traditionally been well-funded.
Vorovich with Northwestern Medicine hopes the money being spent on long COVID research will benefit all POTS patients.
But even with funding, it’s still a challenging disease to research, Vorovich said. In order to carry out trials, researchers often look for patients with similar clinical presentations. That’s hard to do with POTS, a disease that varies dramatically from person to person.
Cathy Pederson, a resident of Ohio, is very familiar with POTS. Her daughter developed the syndrome after she had mononucleosis. Pederson now runs the organization Standing Up to POTS. She hopes the new attention on POTS due to COVID-related cases will lead to more answers that will benefit the entire rare disease community.
“The pandemic has been horrible in so many ways,” Pederson said. “But in a strange way, it's been a silver lining for these chronic illness communities who have been around for a long time, but nobody's really known about them.”
CORRECTION: A previous version of this story included two misspelled names. Cathy Pederson and Jill Brook's names have been corrected.