June 3, 2021

Seeking relief from 'long-haul' Covid, one woman finally got a new—and rare—diagnosis

Daily Briefing

    Among the growing number of people with ongoing health issues after Covid-19, a subset of patients are getting diagnosed with a little-known blood circulation disorder—a diagnosis that can provide a "road map to treatment options and relief from their often-debilitating symptoms," Allison Aubrey writes for NPR's "Shots."

    Recovery clinics for Covid-19 long-haulers

    A Covid-19 long-hauler gets an unusual diagnosis

    According to Aubrey, Jennifer Minhas, a 54-year-old nurse in California, developed "a cluster of mysterious symptoms" in the months after she was diagnosed with Covid-19 in March 2020. Her symptoms included ongoing fatigue; an intense brain fog; a racing heart, particularly when moving from lying down to standing up; a burning sensation in her hands and feet; and tightness in her chest.

    Eventually, Minhas's symptoms grew so severe that she had to stop working.

    By the end of 2020, however, a group of cardiologists at the University of California-San Diego (UCSD) had a name for Minhas's constellation of symptoms: a blood circulation disorder called postural orthostatic tachycardia syndrome (POTS).

    What is POTS?

    According to Aubrey, POTS—first named in the 1990s—results from dysfunction in a person's autonomic nervous system—the part of the nervous system tasked with regulating breathing, heart rate, blood pressure, and other body functions. The condition typically presents after people experience a viral infection, concussion, or other triggering event.

    Overall, the syndrome is estimated to affect between 1 and 3 million people in the United States, generally women, young adults, and adolescents. However, POTS patients frequently experience long delays between developing the condition and getting diagnosed, with people often visiting at least five physicians before receiving an official diagnosis, Aubrey writes.

    According to Aubrey, experts use different techniques to diagnosis the condition. For instance, Tae Chung, a POTS specialist at Johns Hopkins Medicine, uses a combination of symptom review and tests, including the so-called "tilt-table" test, for which patients are brought from a laying down position to a standing up position to see whether their heart rate increases significantly. Other experts rely on a cutaneous nerve biopsy to see whether a patient has the sort of small fiber nerve damage in their skin consistent with POTS.

    Covid-19 boosts POTS awareness

    However, despite the difficultly in diagnosing POTS quickly, Covid-19 appears to have generated more awareness about the condition, as a small but significant subset of Covid-19 long-haulers appear to have symptoms consistent with POTS, according to experts at UCSD, Johns Hopkins Medicine, and other academic medical centers.

    In fact, given this growing crossover between Covid-19 long-haulers and POTS diagnoses, POTS advocates are calling on leaders to dedicate some of the $1.15 billion NIH has allocated for research into long-haul Covid-19 into POTS and other autonomic disorders.

    "Millions of long-haulers and people living with other forms of post-viral dysautonomia are counting on the research community to figure this out so they can get back to living their lives," said Lauren Stiles, a POTS patient and co-founder and president of the nonprofit patient advocacy and research group Dysautonomia International.

    How are Covid-19 and POTS connected?

    While experts do not have a clear-cut explanation for why a subset of Covid-19 long-haulers appear to be presenting with POTS symptoms, Pam Taub, a cardiologist at UCSD who treats Minhas, said a leading theory was that the "antibodies produced after Covid may attack the autonomic nervous system."

    Chung agreed that the onset of POTS after a Covid-19 diagnosis likely stems from an autoimmune issue. "The immune system is confused," he said, which can cause misdirected attacks on the body and eventually damage the autonomic nervous system's ability to regulate blood flow.

    In turn, Chung explained, inadequate blood flow leads to POTS symptoms including brain fog and an inability to exercise, as "exercise requires a lot of blood flow to the muscle."

    Treating a chronic condition

    While POTS is considered a chronic condition, experts say that a variety of medications and physical therapy exercises can significantly improve patients' quality of life. "Many patients do get better, significantly better," Taub said.

    For instance, some patients—including Minhas—have found relief by using the drug ivabradine to help lower their heart rate. "Within a couple of days, I started feeling better," Minhas said of the drug. "I was able to stand up without feeling a racing heart. I was able to do more activity."

    Other medications that have helped POTS patients include beta blockers, which like ivabradine can help lower the heart rate; fludrocortisone, which helps expand blood volume; mestinon, which can help keep heart rate from spiking; and certain stimulant medications, which can help combat brain fog.

    Patients often also seek out physical therapy to regain any lost muscle mass and strength in ways that don't set off their symptoms, such as floor exercises. They are also often advised to make certain dietary changes, such as drinking more water to help expand plasma volume and reduce symptoms; eating more salt, to help the body retain fluids; and limit carbohydrates, refined grains, and sugar, which can exacerbate symptoms.

    As for Minhas, simply receiving a diagnosis has helped her look ahead. "I definitely felt a sense of relief, somehow we could explain what was going on," she said. She added that as she recovers, she is working to get involved in raising awareness about the condition (Aubrey, "Shots," NPR, 5/22).

    Recovery clinics for Covid-19 long-haulers

    Download the case study

    Recovery Clinics for Covid-19 Long-haulers

    Several health systems have set up dedicated recovery clinics to help treat and coordinate care for long-haulers. This resource provides an overview of Covid-19 recovery clinic models pioneered by two early adopters—The University of Iowa Hospitals and Clinics and the University of Pennsylvania Medicine—and considerations for assessing whether it is a model you should pursue.

    Download now

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