Researchers point to autonomic nervous system disorder for some COVID-19 long-haulers
RICHLAND, Wash. – While some people completely recover from COVID-19, others, referred to as ‘long-haulers’ continue to experience symptoms months after the virus has left their body.
Doctors and researchers said it’s been hard to pinpoint why this happens to some and not others, but they have been able to start diagnosing people with a disorder.
It’s called Postural Orthostatic Tachycardia Syndrome or POTS.
During the summer of 2017, Sajal Sanan was diagnosed with POTS after months of back and forth with doctors. An undergrad at the University of Washington, Sanan said she was close to dropping out of school.
“I just felt really crappy all the time, really sick all the time,” she said.
Sanan never had COVID-19 but developed POTS. According to Dysautonomia International, POTS affects one to three million Americans and has several symptoms. Essentially, people with POTS have a hard time standing up, they can have an abnormal heart rate and constantly feel lightheaded.
“It kind of hits in waves, and it’s always worse when I’m sick with something else,” Sanan said.
Robin Jackson believes she had COVID-19 back in March. She said the symptoms lingered for months but started to feel better right before summer started.
“I started noticing heat intolerances, and I was getting very light headed and winded very easily. Could feel my palpitations of my heart going kinda crazy. It’s been a very emotional roller coaster,” she said.
Both women have gone the the Tilt Test, which doctors can perform to confirm a POTS diagnosis.
Lauren Stiles, the President and Founder of Dysautonomia International said the disorder can appear after an infection like COVID-19.
Preliminary research and reports have connected the dots for COVID-19 long-haulers.
“A good subset of patients who have long term symptoms after a COVID infection lasting three or more months have some suggested evidence of autonomic nervous system dysfunction, and some of that looks like POTS,” Stile said.
Lauren explained people must display certain symptoms for at least six months to be diagnosed. However, it’s not largely studied, and specialists can be few and far between, which makes getting to the point of a diagnosis difficult.
“It was always ‘oh you have anxiety, so workout, eat right, meditate, do yoga and all that stuff.’ Once you have a diagnosis it’s like a weight’s lifted off of your shoulder because you’re validated in knowing that you have a diagnosis, it’s not just in your brain”” Sanan said.
“I think it’s really important for doctors to validate their patients that it’s real, it’s not in their heads,” Stiles added.
As for Robin, it could be a while before her life returns to normal. She said tasks that were once taken for granted, now feel like a chore.
“I used to be a very sort of busy person, always on the go. I can’t really walk much anymore. I think the hardest thing is not knowing how long this is gonna last, if it’s gonna get better if it’s gonna get worse,” she said.
Lauren encourages COVID-19 patients to fill out their online survey, it helps them research long-haulers.
For people who live with POTS, she urged them to keep pushing forward.
“Be patient I know it’s hard to do that when you feel so sick. There are specific treatments that we know can help you feel a little bit better,” she said.