Fatigue, headaches and worse: for some, neurological symptoms persist after COVID

Craven sits in front of a light that mimics sunlight, one of the many things she uses to try to alleviate her lingering symptoms of COVID.

Craven’s strict schedule, a measured pace from morning to night, does not oppress him. It gives her hope – hope of a return from the lead fatigue, painful breathing and relentless sleeplessness that plagued her since battling COVID-19 in December. She has joined the ranks of the “long-haul”, the estimated 10 to 30 percent of COVID-19 survivors who remain sick months after their infection, many of whom the initial infection was mild.

Craven prepares for a walk.Jessica Rinaldi / Personnel du globe

A growing body of evidence suggests that problems with the brain and nervous system are prevalent among long-haul travelers. A recent study of 100 long-haul travelers found that 85 had at least five neurological symptoms, including ‘brain fog’, headache, numbness or tingling, loss of smell and taste, muscle pain. and dizziness. A larger study last week found that among 236,379 patients with COVID-19, within six months of infection, a third had been diagnosed with at least one of 14 psychiatric or neurological disorders, ranging from depression to stroke.

Even the bodily problems that many long haul trips experience – such as a fast heart rate, gastrointestinal distress, and shortness of breath – can originate in the brain. One theory attributes these symptoms to malfunctions in the part of the nervous system that regulates involuntary actions, such as inhaling and exhaling or emptying the stomach.

The National Institutes of Health has spent $ 1.15 billion studying the neurological effects of COVID-19 and created a “biobank” collecting data and biological samples from COVID-19 survivors with neurological problems.

“We need to understand what tissues have been injured in individuals and what the repair process is,” said Dr. Walter J. Koroshetz, director of the National Institute of Neurological Disorders and Stroke at NIH. He described the lawsuit as urgent: “We expect, from what we know so far, that tens of thousands of people will still have problems weeks to months after the virus infected them. for the first time.”

Meanwhile, dozens of post-COVID clinics have sprung up across the country. Unable to address the root cause of long-haul problems – because no one knows what it is – these clinics tackle symptoms one by one. Improve sleep. Relieve anxiety. Develop your physical strength. Learn tips for dealing with forgetting.

Craven sits in front of a light that mimics sunlight, one of the many things she uses to try to alleviate her lingering symptoms of COVID.Jessica Rinaldi / Personnel du globe

Craven, the principal of the school, has asked for help with the Critical Illness and COVID-19 Survival Program at Beth Israel Medical Center, which describes itself as New England’s most comprehensive post-COVID clinic , offering a large group of specialists. Dr Jason H. Maley, the director, said the program sees 10 to 15 new patients per week and is full for months.

Craven found her way to Maley after her primary care doctor was unable to relieve the fever, body aches, chills, burning lungs and headaches that kept coming back every time she tried to recover his old life.

“I was terrified that I couldn’t be there for my school, my students,” she said. But she found herself in a recurring cycle: when she felt better, she pushed herself to do more, only to crash for days afterward.

Maley, she said, explained that COVID-19 had thrown her into a “fight or flight” state; she needed to calm down and allow herself to “rest and digest.” He referred her to a sleep specialist, who recommended a series of “sleep hygiene” measures, such as avoiding naps, and a softbox that bathes her in artificial sunlight for 20 minutes each morning. .

For the burning sensation in her lungs, Maley referred her to the Stasis breathing exercise program, taught online, which involves inhaling and exhaling at set cadences. Originally developed to treat stress in veterans, the system has been adopted by many long haulers.

Despite Craven’s continued difficulty breathing, there is evidence of damage to his lungs. It is possible that injuries occurred in air sacs too small to be detected by standard imaging, Maley said. But it’s also possible that the sensations are the result of faulty pain signals, which breathing exercises might reset.

After meeting Maley, Craven mapped out his existence, listing all of his activities and assessing their physical and mental demands. She rearranged them into a manageable schedule.

“Now I know I can’t do high level mental activity for more than an hour. I take a break and vary it with a different type of activity, ”she says.

She considers herself one of the lucky ones – always able to work and with a lot of support.

But Deb McDonnell, so far, has not been able to return to work as an intensive care nurse.

One recent afternoon, she picked up the phone at the appointed time. She had left a note to wait for a call from a reporter. But the 60-year-old couldn’t remember writing that note the day before.

A sign above his stove in his Watertown home reminds him to turn it off. She has programmed Alexa to tell her what to do and isn’t going anywhere in her car without a GPS program directing her. When McDonnell went for the COVID-19 vaccine in January, she got lost in the hospital where she had worked for 32 years.

It was probably there, in the early days of the pandemic, over a year ago, that she caught the coronavirus and brought it home to her teenage daughter. They were both sick for two and a half months.

“We had all the symptoms – headache, diarrhea, nausea, vomiting,” McDonnell said. “We both lost our sense of taste and smell. Exhaustion – we couldn’t get up from the couch.

When McDonnell returned to work, she had a rude awakening. She couldn’t stay on task. Looking at her notes from the start of her shift, she could barely understand them. “It really started to scare me,” she says. “I burst into tears at work.”

A colleague referred her to the Neuropsychiatric Clinic at Massachusetts General Hospital, where she underwent a series of tests. Doctors prescribed steroids for her which helped alleviate some of her symptoms. For her memory problems, she underwent “cognitive rehab,” which McDonnell described as learning to manage her symptoms with tips and tricks – like the note on the stove. Mindfulness training helped reduce stress.

Eager to try anything, she will soon begin with speech and language therapy which, she says, “will make my brain work and try to give it other ways to regain my memory.”

“I’m trying to keep my hopes up,” McDonnell said. ” It is not easy. They say, “Oh, I have a few patients, their memories have come back. So I think, “a few patients”? “

But doctors say people are getting better – though it’s hard to know whether to credit the treatment or just the passing of time.

How does COVID-19 attack the brain?

Dr Tamara Fong, cognitive neurologist at Beth Israel, said long-haul symptoms often resembled post-concussion syndrome. But unlike a concussion, it’s not clear whether the brain suffered a direct injury.

It is also not clear whether the virus even enters the brain. But there is some evidence that it attacks the blood vessels that nourish the brain, causing damaging leaks.

Dr Serena Spudich, an infectious disease neurologist who runs a post-COVID clinic at Yale, says the evidence indicates that continued activation of the immune system is the likely cause of persistent symptoms. The long-haul problems are similar to those seen in autoimmune diseases, she said.

Sleep disturbances are a hallmark of long-haul struggles and may be at the root of other symptoms.

“If you don’t have restful sleep, it’s impossible to feel energetic and do your daily job,” said Maley, of Beth Israel. “If we can restore sleep, it can have a huge impact.”

It is also important not to forget the critical role of agitated emotions during the trauma of the pandemic.

“For some people, COVID has occurred against the backdrop of a major life upheaval,” said Dr Ginger Polich, a physical medicine and rehabilitation specialist who works with post-COVID patients in the hospital Rehabilitation Center of Spaulding. “Lifestyles and habits differ. Exercise, sleep, mood, and anxiety all seem different. All of these things have an impact on the body and healing from injury or illness. “

The anxiety and frustration associated with memory failures only makes them worse, in a cycle of worry and dysfunction, she says.

Julie Craven, the principal of the school, is trying to get out of these cycles. She spends each day knowing that she has a limited reserve of energy to distribute with care. At this time, she won’t try to increase the speed or duration of her daily walks. Instead, she has worked to gradually extend the time she spends at school, each week by adding just 15 minutes, as the school prepares to resume full-time in-person teaching on April 28.

“Now I have a story to tell myself about what’s going on,” Craven said. “Telling this story reduces my anxiety, gives me emotional space and allows me to progress.”

Craven recently learned that she needs to get out of this lane to rest. Her throbbing headaches got so severe that on Friday she decided to stop working for two weeks.

“I clearly just didn’t do my brain any good as I was solving all the issues with reopening the school,” she said in a text message to The Globe. She feels guilty, but added: “Obviously I can’t go on like this. “

Felice J. Freyer can be reached at [email protected] Follow her on Twitter @felicejfreyer.

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