But this has begun to change as researchers "have shown that there is real biology behind POTS," Taub says. POTS has overlapping features with chronic fatigue syndrome, including fatigue and brain fog, and experts who treat it say POTS has had some of the same challenges as CFS in gaining recognition. Short Wave What's It Like To Be A COVID-19 Long Hauler Pam Taub, a cardiologist who treats Minhas at UC San Diego. "Many patients do get better, significantly better," says Dr. The encouraging news is there are a host of medications and physical therapy that can help. POTS often comes on suddenly following viral infection, though there are also other triggers, such as a concussion, for instance. It was first named in the 1990s, though it existed – unrecognized – long before, experts say. POTS experts at other academic medical centers - including UC San Diego, where Minhas is being treated - also are reporting an uptick in cases. As part of the Johns Hopkins Post-Acute COVID-19 clinic team, he sees many patients who have POTS-like symptoms that need to be evaluated, though not all will be diagnosed with the condition. What is known, though, is that there is a backlog of patients waiting to be seen, Chung says. Experts say a small slice of people with long-haul COVID-19 have symptoms of dysautonomia, though its prevalence is unknown. found about 13% of people who had COVID-19 continued to have symptoms three months after their initial infection. They explained to her that an issue with her nervous system was causing her heart to race, usually upon standing - a signature feature of the syndrome - and the circulatory problems.Ībsolute numbers of long-haulers aren't known, but a recent survey in the U.K. The doctors told Minhas that they had begun to see other patients after COVID-19 who had developed similar symptoms. But for a subset of people with what's known as "long COVID" - mostly women such as Minhas - a POTS diagnosis offers a road map to treatment options and relief from their often-debilitating symptoms. "It was disconcerting," Minhas says, and "lingering way too long without a proper answer." But she persevered, determined to "dig in and look for answers."Īnd months later, in late 2020, a breakthrough: A group of cardiologists at the University of California, San Diego helped lead her to a diagnosis of a mercurial and little-known condition: postural orthostatic tachycardia syndrome, or POTS, a blood circulation disorder.Ī growing number of people are facing mountains of frustration over health problems that linger after COVID-19 with no clear path to improvement. At first, her primary care doctor thought it was anxiety. Yet doctors could not explain what was wrong. I used to play tennis and go to the gym," she says. Her symptoms became so severe that she stopped working. In addition, she continued to feel a tightness in her chest, and the brain fog was so intense at times, she says, she couldn't remember a four-digit code for her phone.Ĭoronavirus Updates People With Severe COVID-19 Have Higher Risk Of Long-Term Effects, Study Finds "I would wake up in the middle of the night with burning hands and feet, and I would look down and my feet would be bright red," Minhas says. The doctors couldn't find anything, Minhas says.Ībout the same time she developed another strange symptom that offered a clue to her condition. A normal heartbeat for an adult ranges between 60 and 100 beats per minute.ĭoctors ordered tests to rule out heart disease. "Just standing up to make a sandwich, my heart rate would be 120," recalls Minhas, a 54-year-old nurse who lives in San Diego. "I had profound fatigue," she says, along with brain fog, headaches and a rapid heartbeat, especially when she changed positions from lying down to standing up. In the months after she first got sick with COVID-19 in March 2020, Jennifer Minhas developed a cluster of mysterious symptoms. For months, she and her doctors struggled to understand what was behind her fatigue and rapid heartbeat, among other symptoms. Since then, lingering symptoms - what's known as long-haul COVID-19 - made it impossible for her to work. Jennifer Minhas had been a nurse for years when she contracted COVID-19 in 2020.
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