COVID-19 long haulers are developing debilitating, chronic condition called POTS

Coronavirus

A debilitating chronic condition is being linked to COVID-19. Though it existed long before the pandemic and impacts between one and three million Americans, few doctors know much about it and there is no cure. It’s called POTS. That stands for Postural Orthostatic Tachycardia Syndrome.

It’s a form of dysautonomia or a disorder of the autonomic nervous system. Think auto. It controls everything in your body that you don’t think about. That includes blood pressure, heart rate, temperature regulation, digestion, pupil dilation, and more. When this system is damaged, the result can be disabling and cause widespread, unpredictable symptoms.

“There was several times I walked to the mailbox and back and that’s all I did and my pulse was like 190 when I got back into the house,” Ericka McCarty, a Knoxville woman who has POTS, described.

She was diagnosed 12 years ago. That’s before nonprofit organizations like Dysautonomia International even existed. It’s a group that funds research for autonomic nervous system disorders and provides support and information to patients.

“We kind of have to do our own research,” McCarty explained. “I went to doctors and I’m like hey, I’m having this thing where I stand up, things kind of turn grey, I feel really lightheaded, I don’t feel great, and, you know, not super helpful answers including the all in your head-itis.”

Despite debilitating physical symptoms, 85% of POTS patients are given a psychiatric diagnosis before getting the right one. Few doctors around the world understand the condition. Many patients turn to the internet for answers.

“That’s actually kind of where I first sort of learned of the correlation and people coming like here are my symptoms. I’m dizzy when I stand up. I can’t walk for more than a few feet without my pulse racing and I’m like, oh that’s what I experience everyday,” she said.

She now spends time online paying it forward.

“Several posts that, you know, people have described symptoms that sound like my experience everyday and I’m like hey, I’m not a doctor, I can’t diagnose you, but you probably should look into POTS,” she said.

The Survivor Corps group on Facebook has more than 120,000 members. They’re long haulers and nearly 100 posts mention POTS.

“There’s even been like other people with COVID and COVID long-haulers that have like commented on my post and like yeah, I was actually just diagnosed with it.”

Ericka hasn’t had COVID. Roughly 50 percent of POTS patients, though, develop the condition after a viral illness or infection. She’s not the only one taking notice. By April, COVID patients were making their way into the autonomic dysfunction clinic at Stanford University.

“I expected it and after seeing the second patient with classic POTS symptoms it became fairly obvious and I think all of us in the autonomic field probably recognized this,” Dr. Mitch Miglis, an auotnomic disorder specialist at Stanford, said.

He said much of the connection between COVID and POTS has originated on social media. He knows the signs and symptoms. Most doctors don’t. It takes an average of four years for patients to get diagnosed. Even then, they often have to travel more than 100 miles to see a specialist who can help. This pandemic may force more doctors to understand.

“If at least 10 percent of patients have lingering symptoms at six months now, that’s a sizeable proportion of the population, so I can’t give it a percentage, but I can say we’re probably going to get a lot busier,” Dr. Miglis said.

Based on current COVID data, 10 percent would be about 1500 people in Knox County alone and more than four million around the world. That’s the low end. Dr. Anthony Fauci recently estimated 25-35 percent of COVID patients would develop long term issues like dysautonomia.

An article published in the JAMA Network Open, a medical journal published by the American Medical Association, reports the severity of COVID symptoms has no bearing on whether or not a patient develops a long term condition. According to the article, most patients who become long haulers didn’t require lengthy hospitalization or intensive care.

Physicians are stumped as to why many, young, previously healthy patients, aren’t recovering completely. Additionally, French doctors report long-term symptoms are impacting more women than men by a 4:1 ratio.

Similarly, roughly 85% of POTS patients are women. The symptoms often strike them during childbearing years. Still, prior to COVID it was estimated that 1 in 100 teens would develop the condition.

Though she doesn’t wish this condition upon anyone, for people like Ericka, the prospect of this kind of awareness and focus on POTS brings hope. Doctors who have committed careers to this little known condition feel the same way.

“I think it’s the most exciting aspect of this. I mean, it’s the silver lining with a disease like this,” Dr. Miglis said. “Because previously, we really haven’t had a pathogen or any kind of virus where we know the virus, know what it is, and when the onset of infection was.”

That’s why he’s jumping at the opportunity to learn from this. Dysautonomia International is funding research that Dr. Miglis is heading up. Phase one is a survey for anyone who has had COVID.

“It will address a lot of the systemic symptoms people are describing from the fatigue to rashes to joint pains, chest pains, things like that. Autonomic symptoms. Nerve pain. Quality of life,” he explained.

Anyone who has had COVID-19 can take the survey. You don’t have to have developed POTS. The goal is to track symptoms over time. It takes about 15 minutes to complete. It will be sent out every three months for one year. No medical records are required and anyone in the world can participate. The next phase will be bringing patients in for testing. So far, they have received more than 1,500 responses. You can take the survey by clicking here.

Ericka is just one of an estimated one to three million Americans living with POTS. Researchers now expect that number to grow because of COVID.

“I think it’ll create more awareness that there can be disabling post viral syndromes and it’s not in patients’ heads,” Dr. Miglis said.

A doctor in New York, Dr. Shannon Caspersen, recently wrote an article describing her own experience developing POTS after COVID. Advocates say it’s a disorder starving for credibility within the medical community. Her account alone serves as further validation for patients who have met many doctors who don’t even believe POTS exists or disregard the severity of disability it can cause.

“Some days symptoms are just kind of an annoyance and like every time I stand up my vision might grey out for a couple of seconds, but then kind of move on. On the really terrible days, like I stand up and immediately have to sit down,” McCarty said.

According to Dysautonomia International, 25 percent of people with POTS are so disabled they cannot work or attend school. The symptoms include high heart rate upon standing, vision disturbances, brain fog, extreme fatigue, exercise intolerance, memory trouble, breathlessness, heat intolerance, nausea, and many others.

Though there is no cure, some treatments can help manage symptoms. Some patients are prescribed a high salt and water diet to boost blood volume. Others are given medication to control heart rate and blood pressure. Most are advised to begin physical therapy to avoid deconditioning and help train the body to tolerate standing up.

“I’m sad for the people who are now experiencing it, but I’m also really excited about the possibilities of future research, medication, and treatment, and possibly a cure,” McCarty said.

There are many conditions that appear to be coming out of COVID-19. Chronic Fatigue Syndrome is another one the doctors at Stanford said they are seeing. Dr. Miglis encourages you to see a doctor if you are having persistant symptoms. POTS cannot kill you on its own, but other complications from COVID can, so it’s important to rule out other issues. If you do get diagnosed with POTS he has some advice.

“It may be a longer road, it usually is, than most people expect,” Dr. Miglis said.

The quality of life in people with POTS has been compared to that of people with COPD, congestive heart failure, or on dialysis in end stage kidney failure. For many, it changes life tremendously. For Ericka, who developed the condition in college, it guided her career choice. She made sure to take a job with flexible hours where she can work from home.

“Trying to find words and like, in school, I was the one who would read the dictionary for fun, but so not being able to recall those, like that’s one of the frustrating aspects of it,” she explained.

If you are diagnosed with POTS, there are resources available. Click here to learn about Dysautonomia International. You can find specialists near you and connect with other patients. COVID clinics are also opening up across the US.

“Allowing yourself to go through the grief process is very important,” McCarty suggests.

It is considered a spectrum condition, meaning some are severely disabled, while others show only mild symptoms. Doctors aren’t sure why this happens to the body, but having a trigger to study, like COVID-19, may help uncover more answers.

“It’s a good niche and, you know, obviously, challenging, but also exciting because it’s not very well understood so, I think there’s a lot of room for research here,” Dr. Miglis said.

Click here to take the Stanford COVID-19 survey.

WATE Anchor Summer Dashe was diagnosed with POTS in 2019. She didn’t have COVID. You can watch her story or read her article about it here. You can also watch the live Q&A with Summer about POTS on her Facebook and Instagram accounts.

WATE Anchor Summer Dashe shared her story of a POTS diagnosis while working in South Carolina at WPDE in 2019.

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