Long COVID sufferers are joining a chronic disease community searching for answers

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The CDC estimates that one in five Americans who have had COVID will have COVID for a long time. In these cases, patients may still have symptoms weeks or months after the initial infection. In some cases, these symptoms can last for more than a year. Like COVID, they can range from mild to debilitating.

But while COVID is new, post-viral diseases are not. Long COVID sufferers now find themselves part of a larger community of chronic disease sufferers, many of whom have been searching for answers for years.

“I’ve never felt better”

Tanya Hovey contracted COVID in April 2020. Before the infection, she ran a newborn photography business, was active in her church, loved gardening, and rode her bike several times a week. She was never hospitalized for her COVID infection and thought she would recover.

“I came out after two weeks, I’ve probably had three days but I was better. And then around day four all the symptoms came back and I was bedridden. Couldn’t move, couldn’t breathe. I was dizzy,” she said.

Tanya Hovey

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Tanya Hovey

COVID changed everything for Hovey, who has struggled to get out of bed even after her infection has cleared.

Hovey said her symptoms kept coming back. She felt fine for two or three days, but then she couldn’t get out of bed.

“It would just ride like a roller coaster, which was really weird. And then, after about three weeks, I got hit hard, was back in bed, couldn’t breathe, my heart was really pounding and it never went away. I’ve never been 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 call it. But getting a diagnosis wasn’t easy. Her GP ordered tests, which came back normal. She saw an 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-distance drivers and that’s how she found out about POTS.

“So I went to the cardiologist and said, you know, I’m learning about this POTS, I could have it. And he prescribed me a vasoconstrictor called Metatron. And actually I could get out of bed. I felt so much better. So he said yes you have POTS but I don’t know much about POTS. And no one here at the hospital specializes in POTS,” Hovey said.

search for answers

A man and woman in winter clothes stand next to a snowman.
Jill Brook fought for years to be diagnosed with POTS.

Hovey’s struggles to find a diagnosis are not uncommon. Jill Brooke, who runs the POTScast podcast, says it took her 17 years to be diagnosed. She first developed symptoms in the 1980s as a teenager.

There was, Brooke said, no “Dr. Google,” no advocacy groups, and most of their doctors had never heard of POTS. In the early days of the internet, she created her own website to find answers.

“You know, at the very beginning I actually made a website that was, you know, my legs were doing .com hoping that someone out there in the world would get in touch with me because I didn’t know what was wrong with me No one could figure out what was wrong with me. And I was hoping to find that one other person who might have some more answers,” Brooke said.

Brooke 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 healthcare system is not designed for people with complex, chronic, multi-symptoms. They’re kind of set up for one main complaint. So walking into a doctor’s office and saying you have numerous symptoms wasn’t easy. And it told you that you’re imagining it or that it was just fear. You know, I tried to be very, very careful and just pick one thing at a time to complain about,” she said.

The thing that changed everything for her?

A hornet.

Brooke was stung by a hornet and had an allergic reaction. When she was treated with antihistamines, she found that she was able to function better. She researched options 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.

Brooke says her treatment plan is one that she cobbled together through trial and error over the 30 years she’s had POTS. These include things like eating more salt, drinking more fluids, not staying still in one position for too long, and elevating her torso when she sleeps.

Brooke also gets antibody treatments but said they’re expensive and difficult to access because they’re not officially approved for her conditions. She can also work from home and has a supportive spouse.

A difficult diagnosis

Hovey and Brooke both struggled with the diagnosis because the symptoms of POTS can be so 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. In most people, the body automatically adjusts to changes such as standing up so that the heart continues to beat normally and blood flows throughout the body.

For POTS sufferers, things are not that simple.

When they stand up, 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 POT patients it may become impossible to stand upright or even sit for long periods of time.

A woman with gray hair and a microphone speaks

Cathy Peterson

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Cathy Peterson

Cathy Peterson leads Standing Up To POTS and works to educate patients and doctors about the syndrome.

Cathy Peterson leads the organization Standing Up to POTS. Her daughter developed the syndrome after she had mononucleosis. By the time she was ten, Peterson says, her daughter was no longer energetic and could not get out of bed. She says her daughter also experienced severe pain when trying to move or after eating.

Peterson says her daughter’s case shows how POTS can have many different symptoms, including the rapid heart rate that gives the syndrome its name.

“That’s why it’s harder for people with POTS to stand and be able to think or do things that are physical. And so there is much struggle. They are much better off lying in a chair or lying on the couch. There’s also a lot of pain that’s often associated with POTS,” she said.

In addition to cardiac symptoms, POTS patients may experience abdominal pain, headaches, dizziness, and brain fog. Many of these are caused by accumulations of blood in the body.

New focus on an old state

POTS is not a new condition, but it is becoming more common in people with long COVID.

Esther Vorovich is a cardiologist at Northwestern. She says reports of POTS-like symptoms date back 150 years, though COVID has long 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 I do is listen to people. A lot of times I would say I have a lot of tears in my long haul COVID clinic because people have been told they’re crazy, you know, in other words or sometimes with those words but in other words they’re crazy in it it’s kind of in her head. I think the first step is acknowledging that someone isn’t feeling well and those symptoms are real,” she said.

Like Brooke, Hovey, and Peterson, Vorovich says that patients at their clinic have often visited many specialists for their symptoms without receiving answers.

life with pots

But once patients receive a diagnosis, there are still challenges. There is no single treatment for POTS, and treating the condition usually means trying to manage different symptoms.

Some patients benefit from medications, although the FDA has not approved any medications specifically to treat POTS. Others make lifestyle changes, such as These include increasing the amount of salt in your diet, wearing compression stockings or leggings, and changing your lifestyle.

For many, this means major changes from the lifestyle they had before the disease. Hovey says she can’t even go shopping anymore.

“I tried going to Costco with my husband a few days ago to get a Costco membership and I had to go so I could get my own membership and card. And just standing there with the lady tried to improve our membership. My heart started pounding. I started short of breath. I couldn’t breathe, got dizzy and dizzy. I actually thought I was going to pass out,” she said.

For Hovey, managing POTS meant closing her shop, relying more on her husband and children, and giving up activities like cycling. But she has found a physical outlet – swimming.

“Because the water is a compression on my body, it’s like wearing compression tights. Compressed like a whole outfit. And so the water helps us not to have to fight against gravity. And so it keeps the blood in my head. So swimming is fabulous,” she said.

Although POTS has been around for a long time, research into the disease has traditionally not been well funded.

Vorovich hopes the money spent on the long-running COVID research will benefit all POTS patients, but says that despite the funding, it’s still a challenge to research the disease because the symptoms are so diverse. Researchers, she says, want to design studies that include patients who meet very specific criteria, which is more difficult with such a broad syndrome.

“For clinical trials, you always want the purist group of patients who are 100% 100% of a certain type of a certain disease or a certain profile of a certain disease. Right. That way you can show even more benefit. you know, different The more heterogeneous a study group is, the more difficult it is sometimes to show an effect. And so it can be a bit difficult to learn.”

Peterson hopes the rise in POTS cases will lead to more responses, benefiting not just people like Hovey but the community at large.

“The pandemic has been terrible in many ways, but in a weird way it has been a silver lining for these chronic disease communities that have been around for a long time but nobody really knows about them. So we’re really hopeful not only for the people who get POTS post-COVID, but also for the 40% of people who get POTS after any illness, that we’ll uncover new treatment options that will help improve quality lives for these patients.”

So far, Congress has allocated $1.15 billion to the NIH to study long-term COVID over the next four years.

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