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Coronavirus Disease 2019
When COVID-19 Meddles with Your Brain
The neurological aftermath that changes people of all ages.
Posted August 3, 2020 Reviewed by Lybi Ma
Doctors laughed at Katie Swanson, a 28-year-old triathlete who worked as a beer chemist in California. She started feeling sick in February. Doctors at the hospital joked about this model of health and sent her home.
When she returned to the hospital, gasping for breath, it became real to the COVID doctors and she was put on a respirator. But doctors saw no symptoms they believed were life-threatening and sent her home at 11 that night.
“That’s when the neurological symptoms began and they were the worst,” Katie recalls: “Memory issues, difficulty walking and using my arms, slurred speech.”
Katie turned 29 in June. About a month after being discharged from the hospital, she felt recovered and began going on walks every day starting on Mother’s Day. She kept it up until she felt eager to go on a bike ride with her mother, who had inspired her to become a triathlete. Katie fell off her bike.
“I knew there was something mentally wrong with me when I kept thinking about getting off my bike to take a nap on someone's lawn.” A month out of the hospital, she couldn’t recognize the names of people texting her.
"I wasn't there mentally."
Katie also remembered that she kept saying "juvenile things" and couldn't remember how to spell the word cheese. She said she spoke "like a baby" for some time, but she eventually got past this phase.
In April she went to the hospital because her oxygen meter at home showed her oxygen levels were very low. The hospital doctor chalked it up to anxiety. “She got rid of me as soon as possible. My primary care doctor believed me when I told her I felt something was not right. She advocated for me.”
“You twist your fears to match what you’re most afraid of. It’s like going on WebMD; you’re worried about a symptom with a cold, and you end up reading about cancer, and it’s all about the narrative you apply to yourself,” Katie continued. “Being anxious or afraid makes your heart work harder.”
Aftermath: “Brain Problems”
Young women treated with COVID-19 have described to me a nasty after-effect. When some of them were tested and found to have COVID symptoms, they were hospitalized and recovered from the active viral symptoms. Then, a nasty boomerang from the virus; they were surprised and disappointed by what they called “brain problems.” They described to me deteriorating into totally fuzzy thinking, sometimes progressing to speaking baby talk, or hardly being able to speak at all.
I found many young women who were first denied testing because doctors disqualified them from having COVID-19 on the basis of their young age. This bias was eventually exposed. Early studies indicated 29 percent of patients with COVID-19 were 20 to 44 years old and as many as 36 percent presented neurological symptoms.
The Super Doctor in both Infectious Diseases and Coronavirus
As the only doctor in the country who is a top expert neurological and infectious diseases, Dr. Allison Navis says the neurological impact of COVID-19 hasn’t gotten much attention. “We are definitely seeing, within our sick patients, our hospitalized patients, a bunch of different neurological issues. Some of the more common things that we are seeing are people presenting with headaches, a lot of confusion, and altered mental states. We're calling it COVID-encephalopathy at the moment because we're still trying to fully understand what the underlying cause is.”
Patients talk about numbness or burning or tingling in their extremities. But on top of those symptoms, doctors see the severely COVID infected with strokes.
“The source is often blood clots anywhere in the body, but we’re also seeing clots in the brain,” adds Dr. Navis. “That’s how many younger patients are presenting.”
Dr. Navis verifies that blood clots can be one of the first things people notice. “Though we don’t really know if these cognitive complaints are from a primary infection of the brain, or maybe from all these little blood clots in tiny blood vessels, that are causing some issue.” The neurologist adds that memory or attention problems after treatment are not uncommon.
“I have seen, especially in hospitalized patients who were quite sick, that as they resolve their cognitive issues, they did improve.,” is the neurologist’s optimistic They might not have moved completely back to their baseline, because they were still quite ill, but there was some improvement.” Dr. Navis remains optimistic that many people will recover from this virus.
The virus really wreaks havoc on the body. Recovering patients may feel persistently fatigued and easily winded when they walk long distances. “That doesn’t mean you’re still sick, it’s just the body healing after the infection.”
What is the length of hospital stay for most patients with coronavirus?
“It’s different for everyone,” remarks Dr. Navis. “Some people said they felt quite sick for a week or two, even up to three weeks, but recovered at home.”
Recovery could take more a month or more in people with severe courses. In people with strokes, recovery can be more complicated and there can be residual symptoms.
Rates of hospitalization go up with age.
“There are some young people who become quite sick. And especially for those few young people that we've seen come in with strokes, it will take some time for those deficits to improve,’Dr. Navis cautions. People who have a milder course might have some residual fatigue and concern that their memory and attention isn't 100%. “If you’re younger, you tend to have a much milder sort of course,” Navis says.
Rachel Melancon is a 24-year-old hairstylist in northern Illinois, about 30 minutes from Iowa. She started experiencing COVID-19 symptoms about a week before our interview. Next, she developed a consistent cough and trouble breathing.
“My doctor told me that I did test negative,” Melancon said. “However, they think that because of my symptoms, it might have been a false negative. And it’s just a mild case. They asked me to wait 10 days to go back to work.”
One aspect of her recovery she hasn’t read about is confusion. On her way home from being tested for COVID-19, she misdirected her boyfriend on a familiar route. She read the list of symptoms the doctor gave her: confusion is a symptom.
Dr. Navis explained that, like an infection of the blood vessels, It causes problems within the blood vessels.
“The blood clots can be one of the first things that people notice,” said Dr. Navis. “It is possible that maybe some of the residual confusion that we're seeing, or some of the nerve pains that we're seeing is due to some irritation or inflammation from the nerves.”
Melancon hasn’t asked her doctor about the confusion, but she said that it may be due to the lack of oxygen COVID-19 sometimes causes. On the phone with me, she still had trouble breathing and needed to take breaks.
Dr. Navis is really starting to ramp up the followup visits. She thinks that the neurological symptoms may be because we’re still in the early stages. People are only starting to go to followups.
“Right now there's no specific treatment for the neurological symptoms,” said Dr. Navis. “But I do think, if we're hoping that this virus is like sort of other viruses, it can cause a mild infection in the brain.”
“But we are seeing some residual symptoms, once people get better,” said Dr. Navis. “And it could just be that there's some mild damage from the infection. It could be, or the residual inflammation there. I think a lot of it depends on how severe the illness was. But it's not uncommon to have people continue to complain of either memory or attention problems afterward.”
Until Melancon is sure she’s not contagious, she’s not going back to work, and she’s not visiting anyone. This includes her parents who live in the same town, who she usually checks on.
“I have parents who are immunocompromised, so I definitely am taking this very seriously,” said Melancon. “They're both elderly. I just want to make sure they’re safe.”
Melancon’s voice wavers. “I’ve been trying to take this as light-heartedly as I can because if I don’t laugh, I cry.”
