Long-time COVID patients join chronic disease community in search of answers
Tanya Hovey caught COVID in April 2020. Prior to infection, she ran a photography business, was active in her church, loved to garden, and cycled several times a week. She was never hospitalized with COVID and thought she was recovering.
But her symptoms kept coming back. She felt fine for two or three days, then found herself unable to get out of bed.
“I couldn’t move, I couldn’t breathe. I was giddy,” Hovey said.
More than two years later, the Utah mother of three still hasn’t fully recovered.
Getting a diagnosis was not easy. Hovey’s primary care physician ordered tests, which came back normal. She saw doctor after doctor – an otolaryngologist, a neurologist, a pulmonologist, an infectious disease specialist and a cardiologist.
None of them had answers, she said. Eventually, Hovey joined a Facebook group for the long haul COVID, and that’s when she learned about postural orthostatic tachycardia syndrome, or POTS.
Eventually, her cardiologist prescribed her a medication that helped ease her symptoms.
“And of course 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 nobody here at the hospital specializes in POTS.
The United States Centers for Disease Control and Prevention estimate that 1 in 5 Americans who have had COVID will experience a long COVID. These patients may continue to experience 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 the long COVID has increased the number of POTS cases she’s seen. Patients at his clinic have often seen many specialists for their symptoms without getting an answer.
“I have a lot of tears in my long-distance COVID clinic because people were told they were crazy…it’s kind of in their head,” Vorovich said. “And so I think the first step is kind of recognizing that someone isn’t feeling well and that those symptoms are real.”
So far, Congress has allocated $1.15 billion to the National Institutes of Health to support long COVID research over the next four years.
While COVID is new, post-viral illnesses are not. Long-time COVID patients are now part of a larger community of chronic disease patients, many of whom have been searching for answers for years.
A disease difficult to understand and treat
The symptoms of POTS can be varied and the disease is not 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 getting up, and the heart continues to beat normally and blood circulates through the body.
When POTS patients move from a reclined position to a standing position, the blood vessels in their body may not constrict as they should and blood pools in their lower body. This can cause dizziness or fainting. For some POTS patients, standing or even sitting for long periods of time may become impossible.
POTS patients may also experience upset stomachs, headaches, and brain fog. Between one and three million people in the United States are living with the condition.
Jill Brooke, who runs the POTScast Podcast, said it took her 17 years to be diagnosed. She began experiencing symptoms as a teenager in the 1980s. In the early days of the internet, she created her own webpage in an effort to find answers.
“I actually made a website that said ‘my legs hurt dot com’, hoping someone in the world would contact me because I didn’t know what was wrong with me,” said said Brooke.
She struggled because she didn’t have the vocabulary to explain her symptoms to doctors.
“Our healthcare system is not designed for people who have complex, chronic conditions with multiple symptoms. They’re kind of set up for a primary complaint,” Brooke said. “So even going into a doctor’s office and saying you have many symptoms was not an easy thing to do.”
Then Brooke made a breakthrough. She was bitten by a hornet and had an allergic reaction. When she was treated with antihistamines, she found that she could function better. She searched for 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 are diagnosed, they still face challenges. There is no single treatment for POTS, and managing the condition usually means trying to treat different symptoms. Some patients will benefit from medication, although the United States Food and Drug Administration has not approved any drugs to specifically treat POTS. Others make lifestyle changes.
Brooke said she cobbled together a trial-and-error treatment plan over the 30 years of living with the disease. This includes eating more salt, drinking more fluids, and not standing still in one position for too long. Brooke also receives 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 store is now impossible.
“My heart started beating…. I couldn’t breathe, I started feeling dizzy, dizzy. I actually thought I was going to pass out,” she said.
For Hovey, running POTS meant closing her business, relying more on her husband and children, and no longer doing activities she loved.
COVID research could benefit POTS patients
Although POTS has been around for a long time, research into the disease has traditionally not been well funded.
Northwestern Medicine’s Vorovich hopes the money spent on lengthy COVID research will benefit all patients with POTS.
But even with funding, it’s still a difficult disease to research, Vorovich said. In order to conduct trials, researchers often look for patients with similar clinical presentations. That’s hard to do with POTS, a disease that varies widely from person to person.
Ohio resident Cathy Peterson is very familiar with POTS. Her daughter developed the syndrome after having mononucleosis. Peterson now leads the Standing Up to POTS organization. She hopes the new focus on POTS due to COVID-related cases will lead to more responses that will benefit the entire rare disease community.
“The pandemic has been horrific in many ways,” Peterson said. “But in a weird way, it’s been a silver lining for these chronic disease communities that have been around for a long time, but no one really knows about them.”
This story comes from a reporting collaboration that includes WSIU and Side Effects Public Media – a public health information initiative based at WFYI. Follow Steph on Twitter: @stephgwhiteside.