Long COVID patients join a chronic illness community seeking answers
The CDC estimates that one in five Americans who have had COVID will experience long COVID. In these cases, patients may continue to have symptoms for weeks or months after the initial infection. In some cases, those symptoms may last more than a year. Like COVID, they can range from mild to debilitating.
But 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.
“I never got better.”
Tanya Hovey came down with COVID in April of 2020. Before the infection she ran a newborn photography business, was active in her church, loved to garden and cycled several times a week. She was never hospitalized for her COVID infection, and thought she was recovering.
“I came out after two weeks, I probably had like three days, but I started to get better. And then like the fourth day I was all the symptoms came back and I was bedridden. Couldn't move, couldn't breathe. I was dizzy,” she said.
Hovey said her symptoms kept coming back. She would feel fine for two or three days, but then find herself unable to get out of bed.
“It would just cycle like a roller coaster was really weird. And then after about three weeks, I got hit hard, was back in bed, couldn't breathe, really did the heart pounding and it never went away. I never got better,” Hovey explained.
More than two years later, the mother of three still hasn’t fully recovered.
Hovey was eventually diagnosed with Postural Orthostatic Tachycardia Syndrome — or POTS as patients refer to it. But getting a diagnosis wasn’t easy. Her primary care physician ordered tests, which came back normal. She saw a ear nose and throat specialist, a neurologist, a pulmonologist, an infectious disease expert and a cardiologist.
None of them had answers for her. Eventually she joined a Facebook group for long haulers, and that’s when she learned about POTS.
“So I went to the cardiologist and said, you know, I'm learning about this POTS, I could have it. And he put me on a vasoconstrictor called Metatron. And sure enough, I was able to get out of bed. 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,” Hovey said.
Searching for answers
Hovey’s struggle for a diagnosis isn’t unusual. Jill Brook, who runs the POTScast podcast, says it took 17 years for her to get diagnosed. She first began experiencing symptoms in the 1980s, as a teenager.
There was, Brook said, no “Dr. Google,” no advocacy groups, and most of her doctors had never heard of POTS. In the early days of the internet, she made her own webpage in an attempt to find any answers.
“You know, in the very beginning, I actually made a website that was, you know, 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. Nobody could find what was wrong with me. And I was hoping to find that one other person who might have a few more answers,” Brook said.
Brook said because she didn’t have access to communities like the Facebook group Hovey joined, 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. So even just to go into a doctor's office and say that you have numerous symptoms was not an easy thing to do. And it set you up to be told that you were imagining it or it was just anxiety. So, you know, I tried to be very, very careful and just pick out one thing at a time to complain about,” she said.
The thing that changed everything for her?
Brook got stung by a hornet and had an allergic reaction. When she was treated with antihistamines she found she could function better. She researched possibilities, and was eventually diagnosed with POTS and Mast Cell Activation Syndrome. She was referred to the Mayo Clinic and things got easier.
But that didn’t mean they were easier.
Brook says her treatment plan is one she’s cobbled together through trial and error over the 30 years she’s had POTS. It includes things like eating more salt, drinking more fluids, not staying still in one position for too long, and elevating her upper body when she sleeps.
Brook also gets antibody treatments, but said they are expensive and difficult to access because they are not officially approved for her conditions. She is also able to work from home and has a supportive spouse.
A difficult diagnosis
Hovey and Brook both struggled with diagnosis because the symptoms of POTS can be so 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, so that the heart continues to beat normally and blood flows through the body.
For POTS patients, things aren’t so simple.
When they stand up, 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.
Cathy Pederson runs the Standing Up to POTS organization. Her daughter developed the syndrome after she had mononucleosis. At ten years old, Pederson says her daughter went from being full of energy to being unable to get out of bed. She says her daughter also suffered from severe pain when trying to move or after eating.
Pederson says her daughter’s case is one that illustrates how POTS can have a lot of different symptoms, including the fast heart rate that gives the syndrome its name.
“So it's harder for people with POTS to stand and be able to think or to do things that are physical. And so there's a lot of struggle. They're much better off when they're in a recliner or laying on the couch. There's also a lot of pain that's often associated with POTS,” she said.
In addition to the cardiac symptoms, POTS patients may have stomach aches, headaches, dizziness, and brain fog. Many of these are caused by blood pooling in the body.
New focus on an old condition
POTS isn’t a new condition, but it’s becoming increasingly common in people with long COVID.
Esther Vorovich is a cardiologist at Northwestern. She says reports of POTS-like symptoms go back 150 years, though long COVID has increased the number of cases she’s seen. She says patients are often very emotional when they come to her.
“I think the first thing that I do is listen to people. Often I would say I have a lot of tears in my long haul COVID clinic because people have been told that they're crazy, you know, in different words or sometimes in those words, but in different words that they're crazy in that it's kind of in their head. And so I think the first step is kind of acknowledging that someone doesn't feel well and these symptoms are real,” she said.
Like Brook, Hovey, and Pederson, Vorovich says patients in her clinic have often seen many specialists for their symptoms without getting any answers.
Living with POTS
But once patients do get a diagnosis, there are still 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 FDA has not approved any drugs to treat POTS specifically. Others make lifestyle changes, like increasing the amount of salt in the diet, wearing compression socks or leggings, and changing the way they live their lives.
For many, that means big changes from the lifestyle they had before becoming ill. Hovey says she can’t even go grocery shopping anymore.
“I actually tried to go to Costco a couple of days ago with my husband to get a Costco membership, and I needed to go so I could get my own membership and card. And just standing there with the lady was trying to upsell our membership. My heart started pounding. I started short of breath. 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 leaving behind activities like cycling. But she has found one physical outlet - swimming.
“Because the water is a compression on my body, that's like wearing compression tights. Like a whole outfit compressing. And so the water helps us not have to fight gravity. And so it keeps the blood up to my head. So swimming's fabulous,” she said.
While POTS has been around a long time, research into the disease has not traditionally been well-funded.
Vorovich hopes that the money being spent on long COVID research will benefit all POTS patients, but says even with funding, it’s still a challenging disease to research because the symptoms are so varied. Researchers, she says, want to design studies that include patients who fit very specific criteria, which is harder with a syndrome that is so broad.
“For clinical trials, you always want the purist group of patients that, you know, 100% have a specific type of a specific disease or a specific profile of a specific disease. Right. So that you can show benefit because the more. You know, different. The more heterogeneous a study group is, the harder sometimes it is to show an effect. And so it can be a little bit difficult to study.”
Pederson says her hope is that the rise in POTS cases will lead to more answers, benefiting not just people like Hovey, but the entire community.
“The pandemic has been horrible in so many ways, 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. And so we are really hopeful not only for the people that develop POTS after COVID, but for the 40% of people who develop POTS after some sort of illness that we're going to uncover new treatment options that will help to improve the quality of life for those patients.”
So far, Congress has allocated 1.15 billion dollars to the NIH to study long COVID over the next four years.