COVID Long-haulers: Waiting for Relief

For the growing ranks of patients suffering

from lingering neurological effects of COVID-19, the recent attention, and the prospect of new research, are welcome developments. The answers can’t come soon enough.

Cassandra Hernandez, a 37-year-old, registered nurse working in Methodist Hospital in San Antonio, Texas, came down with the virus around the same time four coworkers got sick last June. After 40 days of COVID-19, she tested negative. But she is still reeling from its effects. Her legs often feel like they are “on fire,” though she is not sure why. She’s experienced seizure-like convulsions, profound exhaustion and short-term memory problems, and sometimes passes out. Sometimes it comes on so fast and strong, she can’t remember how to brush her teeth or walk.

“I have times when I couldn’t remember how to write. I didn’t know how to add. I didn’t know how to subtract,” she says. “I have five degrees. To not be able to add or subtract just blows my mind. I felt like a child.”

Though she has experienced some progress, the symptoms often come in waves, and she has had many setbacks. “My face and lips still go numb,” she says. “My hair falls out. I feel like someone has robbed me of my life, of my career, of everything.”

“I’m still technically in rehab. But I’ve asked them, how long is it going to take for me to get better? At first they were saying six months to a year, and now they’re just like, ‘We don’t know’.”

Her experience is not unique. Dr. Allison Navis, lead clinical neurologist at Mount Sinai Hospital’s POST-COVID-19 center and an expert in neuro-infectious diseases, says the vast majority of long-haul patients she is seeing experienced only mild symptoms, were not hospitalized and are far younger than the patients you typically see on the news. Many are dealing with significant neurological issues.

These include headaches, tingling numbness and burning sensations throughout the body, confusion, memory problems, difficulty focusing, profound exhaustion and an intolerance for physical activity, where something as simple as climbing the stairs can result in dizziness, heart palpitations and light headedness. The severity varies widely. Some people can only work limited hours, while others are entirely incapacitated. Brain imaging studies have not revealed any abnormalities.

There is no treatment for the underlying condition. All Navis can do is treat the individual symptoms.

Many of her patients, for instance, meet the diagnostic criteria for Postural Orthostatic Tachycardia syndrome or POTS, a dysregulation of the autonomic nervous system, that can contribute to “dysautonomia symptoms,” such as lightheadedness, heart palpitations, heart racing, and fatigue.

This is treated with hydration, salt intake and compression stockings. She estimates that about one third of the patients she sees meet the diagnostic criteria for Chronic Fatigue Syndrome. Many have headaches. Some who have trouble focusing or directing attention have been prescribed medication for Attention Deficit Disorder. Some patients are improving, others are not. “We wish we had more options, but we really don’t,” says Navis. “It’s really just kind of working things up, making sure we’re not missing anything else. A lot of what we do is just reassurance. Even if we don’t have an answer, the normal test results are reassuring and it’s a lot of just managing the symptoms.” One of the biggest challenges is keeping up people’s spirits. “It’s very frustrating for the patients, understandably, that they don’t know what’s going on and feel so horrible,” she says. After working with CFS patients for years, Dr. Avindra Nath, clinical director of the National Institute of Neurological Disorders and Stroke, also knows well how frustrating unexplained chronic illnesses can be. “It’s very important to not take away hope from people,” he says. “The person afflicted with the disease has a very different perspective on timescale than a scientist does.”