A diagnosis changed my life. Now COVID is shining a light on my little-known illness.
My life changed forever in April 2011, as I was rushed by ambulance from a shooting range in Rockingham County to an area hospital.
I had been interviewing paramedic Justin Stewart when my head started spinning, a sharp pain radiated through my side and an incredible weakness overtook my body. My hearing and eyesight began to fade, and both Stewart and I knew I was about to faint.
The same thing had happened to me nearly two years earlier, in June 2009, while I was interning at WBTV in Charlotte. I stood behind the station’s nightside reporter, Tom Roussey, watching him interview business owners for a story about the revitalization of downtown Gastonia.
I suddenly felt very hot and dehydrated. I went to take a step to the side and couldn’t find my footing. I felt both legs wobble, as if I were on stilts. A painful cramp stabbed me in my side. I suddenly lost my hearing, and as I reached to tap Roussey on the shoulder to tell him something was wrong, my vision went out, too.
I fainted.
Doctors then blamed stress and dehydration.
But the dizziness never left me and only got worse throughout my senior year of college and into my job search after graduation. Doctors scratched their heads and said it was either from allergies or trauma-based stress. Both made sense in the moment.
So it wasn’t until I went down in front of Stewart that I knew something was actually wrong.
He had noticed veins bulging out of my forehead but kept the interview going because I wasn’t indicating anything was wrong.
But when that sharp pain hit my side, I knew it was a matter of seconds before I fainted. He helped me to a chair and yelled for a blood pressure cuff. It was 54/36.
He said he was surprised I was able to walk, let alone still be conscious.
“This isn’t stress,” Stewart said, urging me to get help.
That moment began a summer full of tests. Doctors guessed at a tumor, multiple sclerosis and epilepsy before admitting me to Wake Forest Baptist Medical Center. It was there that a doctor told me I had a condition I had never heard of: Postural Orthostatic Tachycardia Syndrome, known as POTS.
In 2011, the number of doctors who knew how to treat POTS was very limited — and that hasn’t changed much. There is no cure.
I’m sharing my story now because doctors are finding a high-number of COVID-19 patients who have recovered from the deadly virus but now have long-term effects. One of those long-term effects is types of dysautonomia, including POTS.
I’m one of the lucky few who received a fairly quick diagnosis and is also fairly high-functioning. I try not to let it show, but this is a medical condition that affects me minute by minute and one I wouldn’t wish on my worst enemy.
I know the frustration of trying to figure out what you have, with a myriad of symptoms that could be connected to who knows how many other medical conditions.
And now I’m watching as other people who already have been dealt a bad hand struggle to get a diagnosis in a state where we are lucky enough to have at least two clinics that specialize in treating this disorder. Apart from Duke and UNC, patients have options like the Mayo Clinic or Vanderbilt to get help.
What is POTS?
POTS is deemed an invisible illness. Just looking at someone like me, you probably wouldn’t have any idea I’m dealing with a medical condition unless you hear me talk about it or have seen me have a full-blown episode.
Dysautonomia International, the first global advocacy organization for conditions like POTS, details the syndrome both in videos and on webpages.
The organization explains that people with POTS don’t tolerate standing up, and doing so causes their heart rate to go up more than it should. This matters because the blood in your body reacts to gravity the way you would expect. When you stand up, your blood travels down to the rest of your body and your brain tells your heart to beat harder and the veins in your lower extremities to tighten in order to squeeze blood back to your brain.
In POTS, a patient cannot make or maintain the tightening of blood vessels, and the brain tells the heart to beat harder and faster. Most of the time, the heart compensates to keep us conscious but can’t maintain the amount of circulation needed to get the same level of blood flow to the brain and other organs as it did when we were sitting.
Doctors categorize POTS under the term dysautonomia, a label given to several medical conditions that involve the dysfunction of the autonomic nervous system. To understand that, think of anything that your body does automatically.
POTS comes with a long list of symptoms patients can experience. On a near daily basis, I’m dealing with dizziness, headaches, fatigue, weakness, shortness of breath, heat intolerance, gastrointestinal problems and pins and needles in my extremities.
On my worst days, I have trouble getting out of bed and walking. I gasp for air, have nausea, brain fog and light sensitivity. And I faint, just like I did on the job more than 11 years ago.
I take more than a dozen medications every day to maintain my lifestyle, and that is still only putting a Band-Aid on my condition.
But I also know what I deal with daily is nowhere near the level that POTS can affect other people.
Dysautonomia International reports that about 25% of people diagnose with POTS are unable to work. Researchers have found our quality of life is similar to those on dialysis for kidney failure.
A history of POTS
POTS, while rare, wasn’t a new condition when I was diagnosed. UNC cardiac electrophysiologist Dr. Sameh Mobarek, who is a favorite in the North Carolina dysautonomia community, said a Civil War surgeon first described POTS in 1871 after seeing soldiers who fought in the war.
Mobarek said the soldiers wound up with infections, but after recovering would have lasting effects, including higher than normal heart rates, gastrointestinal issues and concentration problems. The doctor also noticed dizziness, weakness and lightheadedness. Other countries recognized POTS throughout the early 1900s.
But Mobarek said doctors at the Mayo Clinic in 1993 gave POTS its name and defined the diagnostic criteria for the condition.
Dysautonomia International estimates that 1 to 3 million Americans are affected by POTS, and 80% of those patients are female.
“Unfortunately, it has been and is still, which is very frustrating, under-recognized and under-treated, and mistreated as well,” Mobarek said.
Post-COVID POTS
Both dysautonomia and POTS gained national attention in 2020 as people survived COVID-19 but still seemed to feel COVID-like symptoms, even after the virus left their bodies.
In mid-November, Dr. Anthony Fauci, a leading expert on infectious disease who has been the face of America’s fight against COVID-19, listed dysautonomia as one of the manifestations of the virus in long-haulers.
“We do know for absolutely certain that there is a post-COVID syndrome,” Fauci said in an American Medical Association video posted to YouTube. “Anywhere from 25% to 35% — or more — have lingering symptoms well beyond what you would expect from any post-viral syndrome like influenza and others. It’s fatigue, shortness of breath, muscle aches, dysautonomia, sleep disturbances and what people refer to as brain fog or an inability to focus or concentrate.”
Fauci said that post-COVID syndrome could last anywhere from weeks to months and that even in asymptomatic COVID-19 patients, about 60% have some indication of inflammation of the heart.
Lauren Stiles, the president and co-founder of Dysautonomia International, noticed early in the pandemic that post-COVID-19 patients seemed to suffer from dysautonomia symptoms.
She told The News & Observer in an interview in December that she had COVID-19 early on in the pandemic after traveling by train from New York to Miami. It wasn’t until her trip home that she fell ill.
With the virus being new to the United States, Stiles joined COVID-19 support groups online to learn more. She quickly noticed a “significant percentage” of people having autonomic nervous system dysfunction. She said people reported higher than normal heart rates, blood pressure abnormalities, profuse sweating and pupil dysfunction.
Stiles contacted researchers, asking if they had noticed the reports. COVID-19 had not yet spread through the entire country, but with San Francisco being one of the cities hit earliest, researchers at Stanford University reported that they had.
“They were like, ‘Yes, we need to do a study on this,’” Stiles said.
Stiles is an associate professor of neurology at Stony Brook University in New York and has partnered with researchers at Stanford to study COVID-19 and its effect on the autonomic nervous system. Stiles said a significant number of patients in her study are reporting autonomic nervous system symptoms after recovering from COVID-19.
Stiles said it takes about a month for the virus to clear the body. About 10% to 30% of patients who recovered from COVID-19 have post-COVID syndrome. That figure is in line with prior research that shows 15% to 30% of people with a virus develop post-viral syndrome, Stiles said.
Similarly, research has found that half of those with POTS developed it after first having a virus.
“There’s a subset of humans that when they get an infection their body just doesn’t bounce back,” Stiles said. “The infection is gone, but it sets off some sort of long-term chronic illness.”
How do you know if you have POTS?
Stiles said it’s important not to self-diagnose post-COVID-19 symptoms.
“We don’t want COVID patients, assuming that they have dysautonomia or POTS on their own, because we know from COVID research that a majority of COVID patients have evidence of myocarditis and other cardiac damage,” Stiles said.
Myocarditis is inflammation of the heart muscle. Stiles said that 78% of COVID-19 patients, even with mild cases, appear to have some sort of heart damage.
POTS treatment includes a high-salt intake and exercise, both of which could have grave repercussions for a patient with heart damage.
Stiles said doctors need to rule out cardiac damage, myocarditis, pulmonary embolisms and blood clots. Some of these conditions can look a lot like dysautonomia as well.
“We want to make sure our patients have the right diagnosis, before they begin any treatment,” Stiles said.
Diagnosis
Mobarek said he hasn’t seen post-COVID-19 POTS patients in his clinic yet, but that makes sense to him.
The virus first came to North Carolina nine months ago. Mayo Clinic’s diagnostic criteria says a person must have POTS symptoms for three months before diagnosis. And with so few doctors treating POTS, the waiting list to get into his clinic is lengthy.
North Carolina has another doctor who specializes in dysautonomia and POTS, Dr. Camille Frazier-Mills at Duke University Hospital.
In 2015, when it became clear to my primary care physicians that the care I was receiving at a Triad hospital wasn’t adequate, they decided to send me to Vanderbilt, the closest hospital they thought specialized in the condition.
But then they learned about Frazier-Mills and sent me to Duke instead. Like Mobarek, Frazier-Mills, who frequents POTS conferences, also has a lengthy waiting list. I was given an appointment a year out but fortunately was able to meet with her after three months due to a cancellation.
The difficulty in dealing with the condition, along with the challenges of finding doctors who understand it, has left many in the POTS community frustrated that the condition is only now getting attention because of those with COVID-19.
But Stiles said there has never been as much discussion about dysautonomia and POTS as there is now in the media, in medical journals and at physician meetings.
“This is a dramatic increase in awareness,” Stiles said.
This can lead to opportunities for advanced research and better understanding of autonomic dysfunction.
“I view COVID as a global tragedy,” Stiles said. “But out of tragedy we are going to see more research on post-viral syndromes, including post-viral dysautonomia and POTS.”
This story was originally published January 5, 2021 at 8:00 AM with the headline "A diagnosis changed my life. Now COVID is shining a light on my little-known illness.."