October 26, 2023
Postural orthostatic tachycardia syndrome – commonly referred to as POTS – usually affects people who have experienced trauma, viral infections including meningitis, flu and cold viruses, and even pregnancy. But now, physicians are seeing POTS in more patients who have had COVID-19 and have long-COVID symptoms.
“When we think about POTS, we think of it primarily as an autonomic nervous system problem,” says Branden Comfort, MD, internal medicine specialist. “It affects the part of our nervous system we don’t have to think about that controls our heart rate, our blood pressure, whether we sweat or not – things like that.”
Dr. Comfort explains that when you stand up, gravity is going to try to pull your blood volume down. But your head needs blood, so your body has reflexes in place that constrict your blood vessels to make sure that it gets the blood it needs. Your body also increases your heart rate to increase the cardiac output to ensure there is enough blood in your head.
The heart rate of a person who doesn’t have POTS may go from 70 to 80 beats per minute when they stand up. For a person who has POTS, their heart rate may jump from 70 to 140 beats per minute or higher. This accelerated heartbeat is called tachycardia, which can lead to lightheadedness, dizziness and fatigue. Sometimes, a person who has POTS will see significant improvement if they become pregnant.
Mikayla’s story
That was the case for Mikayla Dreyer, who contracted COVID-19 in December 2020 when she was 29 years old. She was active and healthy, a long-distance runner, when she contracted the coronavirus and developed COVID-19. She lost her sense of taste and smell and had a fever that lasted for 21 days. After that, she had chest pain, extreme heart rate fluctuations and palpitations, and trouble breathing while sitting, walking and talking.
Her symptoms continued for weeks, then months, and expanded to include dizziness, fatigue, muscle weakness and tremors that caused her to lose her grip and drop things.
“I’d never had to be afraid I might not wake up in the morning because I wasn’t able to breathe,” Mikayla says. “I knew I had COVID, but I didn’t know why I was having all these symptoms.”
She got a referral to The University of Kansas Health System’s post-COVID clinic, which provided specialized care for people experiencing long COVID in the early part of the pandemic, and had her first visit at the clinic in May 2021. There, she finally felt like less of a mystery when she was diagnosed with POTS.
“Everything I described they had heard before,” says Mikayla. “I felt heard and that was really, really big.”
But even while under the care of a post-COVID specialist and a cardiologist, Mikayla’s symptoms continued to increase and became more alarming. She had started taking beta blockers to help control her heart rate, but by June 2021 had to increase the dose because her symptoms continued to worsen. She had numbness in her hands and feet and experienced dizzy spells that were so severe she had to rely on a wheelchair.
From June to September 2021, Mikayla went to physical therapy twice weekly. With the medication and physical therapy, her symptoms improved dramatically over the summer.
Mikayla:
I'm just not much of a sit-around-and-do-nothing kind of person.
Narrator:
At 29 years old, Mikayla Dreyer was enjoying an incredibly active life.
Mikayla:
I was a long-distance runner, so I liked to do 5Ks, 10Ks and even half marathons.
Narrator:
When the pandemic hit in March of 2020, she was also in the process of becoming a mom to two small children.
Mikayla:
I was hypervigilant from the start.
Narrator:
Then one day at the end of December, she woke up with a tickle in her throat. And we all know how this next part goes. The tickle became a cough, the cough became a fever, add in a racing heart. Then Mikayla lost her sense of taste.
She got tested – COVID positive. Mikayla's fever took 21 days to break. After that, she had trouble breathing, walking, sitting, talking. It was terrifying.
Mikayla:
I was 29 years old; I'd never had to be afraid that I might not wake up in the morning because I wasn't going to breathe.
Narrator:
Days turned to weeks, weeks turned to months, and the symptoms multiplied, now including chest pain, fatigue, muscle weakness and tremors causing her to lose her grip and drop things constantly.
Mikayla:
I knew I had COVID, but I didn't know why I was having all of these symptoms.
Narrator:
After five months of suffering, Mikayla got a referral to The University of Kansas Health System's post-COVID clinic, a special clinic for long haulers, where she finally didn't feel like such a medical mystery.
Mikayla:
Everything I described, they had heard it before.
Narrator:
And she finally got a diagnosis. Mikayla was diagnosed with something called postural orthostatic tachycardia syndrome. It's a mouthful and it's most commonly known as POTS.
Doctors say typically they see someone with POTS who has suffered a traumatic injury, something like a brain injury, meningitis, even pregnancy. But now more and more often, they're seeing it in their COVID patients.
While under the care of post-COVID specialists, Mikayla developed more alarming symptoms. Numbness in her hands and feet and dizzy spells so severe she had to rely on a wheelchair. But at least she had doctors who told her they knew why it was happening and they had a plan to get her on a path to recovery.
And equally important, they gave Mikayla validation at a time she was feeling as if she was coming unmoored.
Mikayla:
I felt heard and that was really, really big.
Pregnancy relieves symptoms
In February 2022, 14 months after her positive COVID-19 test, Mikayla found out she was pregnant. About 3 weeks later, she noticed that she was not experiencing the long-COVID symptoms she’d been dealing with for more than a year. Her obstetrician explained that when you’re pregnant your blood volume increases, and the increase could be correcting some of her heart rate and blood pressure issues.
“In pregnancy, blood volume increases by 40%, 50%, sometimes even doubling,” says Dr. Comfort. “We think that increase kind of counteracts some of the effects that people who suffer from POTS have.”
Mikayla’s cardiologist also monitored her throughout her pregnancy. Even though she had seen improvement in her symptoms, she remained on beta blockers. He told her to wait until she was about 3 months postpartum to see if pregnancy had acted as a reset for her autonomic nervous system and her body had recovered on its own.
In February 2023, when her new baby was about 4 months old, Mikayla’s symptoms had not returned. However, when they tried to wean Mikayla off the beta blockers, her symptoms did return. Her cardiologist recommended she stay on a half dose of the original amount of beta blocker she was prescribed.
“My symptoms are virtually nonexistent as long as I’m on my meds,” Mikayla says.
What should I do if I have POTS symptoms?
If you are experiencing symptoms like the ones Mikayla had – feeling dizzy or lightheaded or like your heart is pounding out of your chest – call your primary care provider.
“The first thing they should do is check your orthostatic vital signs. They’ll have you lie down and check your blood pressure and heart rate, then they’ll check your blood pressure and heart rate while sitting, then standing,” says Dr. Comfort. “That alone can give us a pretty good indication of whether you have POTS. If the tests are negative, then we can look into other causes for the symptoms.”
If you are diagnosed with POTS, you will likely be referred for physical therapy, occupational therapy or other symptom-based treatments, including medication. You may also be referred to pulmonary, cardiology or other specialists.
You might be concerned that a POTS diagnosis means you could be at higher risk of heart attack. While the symptoms can be debilitating, there is not a higher risk of heart attack or death from POTS.
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