SAN ANTONIO – An important new study shows COVID may be to blame for an increase in POTS, a neurologic disorder that causes dizziness or fainting upon standing.
Jennifer Ramey lived an extremely active life, running marathons, hiking mountains, and working as a cardiac nurse for 12 to 14-hour shifts.
Then in December 2020, she got COVID. Two months later, she had serious lingering symptoms and was diagnosed with long COVID.
“A lot of cognitive issues, a lot of blood pressure ups and downs, temperature changes,” Ramey said.
She ended up with a rare autoimmune disease that was combined with another condition called POTS, or postural orthostatic tachycardia syndrome.
POTS is caused by a sudden reduction in blood flow returning to the heart after standing up, leading people to become dizzy, lightheaded, or even faint.
“I passed out a couple times in the beginning. My blood pressure could be 160/120, and then three minutes for no reason, it could be 70/40,” Ramey said. “But now I mostly know how to pay attention, and I take my blood pressure before getting up.”
Experts report that more than half of POTS cases are caused by infections.
Now, a study just released showed a spike in POTS diagnoses following COVID infections.
The research was done partially by the National Heart, Lung, and Blood Association and published in the Nature Cardiovascular Research.
“It’s become increasingly common, especially women who are younger,” said Dr. Monica Verduzco-Gutierrez with UT Health San Antonio.
Dr. Verduzco-Gutierrez is one of the nation’s top experts on long COVID, running two clinics in San Antonio with months-long waitlists.
A handful of her patients have POTS and other related autoimmune diseases.
“Imagine you stand up and your heart rate zooms up and you have brain fog or you’re at risk of passing out, then you can’t sit up and do a job or stand up and do a job. You almost have to be laying down a lot of the time,” she said.
Verduzco-Gutierrez said delayed diagnosis is extremely common.
“Some of them took a year to get the diagnosis. Being told that they had something else, anxiety, it was nothing, just drink more water and you’ll be fine, or your heart looks fine. And a lot of times their hearts do look fine, but it’s just more their autonomic nervous system’s response that’s thrown off,” she explained.
Now that these conditions are associated with COVID, she said it’s crucial that the conversation about long COVID continues.
“The new variants are still causing symptoms in patients and still causing the dysautonomia or the POTS. We are definitely seeing that even with the quote-unquote mild variants,” Verduzco-Gutierrez said.
“A lot of people are trying to make this known. That’s my goal, for people to know this is real,” Ramey said.
She is now on a national committee for long COVID, as a patient advocate alongside Dr. Verduzco-Gutierrez.
Ramey wants people to know she had to quit the job she loved, that she’s now on disability, trying to gain strength back, and undergoing different treatments that aren’t guaranteed to work.
“You lose your life, your identity, everything changes. You get depressed, you get anxious, things are challenging,” she said.
She hopes research continues to quicken diagnosis and improve treatments.
Until then, Ramey and Verduzco-Gutierrez advise patients with symptoms to advocate for themselves.
Sometimes POTS can be the first sign of an autoimmune disease. It can happen to teenagers all the way up to people in their 50s and 60s.
“People don’t know they have it, and it’s not even taught that much in medical school, unfortunately,” Verduzco-Gutierrez said.
She said if you’re having dizziness, lightheadedness, or a feeling that you’re going to faint upon standing, go to a doctor, make sure you get a full workup, and ask for a specialist if you feel it’s necessary.