The long covid pushed brain fog into the center of attention
“This is the moment where the public and the medical community realizes that this is real. This happens after certain infections,” said Akiko Iwasaki, professor of immunobiology at Yale University and co-author of the book. review article on cognitive impairment associated with covid-19.
“I think the time has come for them to be recognized,” she said.
Research shows most people who have lingering symptoms of covid report brain fog — a cluster of symptoms, including reduced attention, concentration, memory and processing speed. Iwasaki and Michelle Monje, professor of neurology at Stanford University, reviewed more than 100 studies relevant to cognitive dysfunction after covid.
They listed six potential causes of covid-related cognitive dysfunction and concluded that the most likely common cause is pneumonia, which causes inflammation in the brain, and then nerve cell dysfunction.
Patients who have experienced brain fog, caused by a wide range of conditions, say the effects can be life-changing and devastating. They say it prevents them from many activities such as driving, cycling and public speaking. Some had to change their work schedules or stop working altogether. And almost all of them say it’s forced them to rely on a notebook — keeping to-do lists that include the most basic tasks like remembering to eat.
Depending on the underlying cause, there are treatments for brain fog ranging from exercise protocols to cognitive rehabilitation, but there is no method proven to work for all patients.
Dennis Kolson, a neurologist at the Penn Neuro COVID Clinic at the University of Pennsylvania, said since the clinic opened last year, doctors have evaluated about 350 long-term Covid patients for symptoms including brain fog. He said people just as much appreciate having the opportunity to talk to a doctor who understands their symptoms.
“‘Am I like the others? Do you see people like me?’ I get that question every time,” Kolson said. “I almost always say, ‘Yes. You are not alone.’ “
Edwin Hall, a 65-year-old Navy veteran from Fulton, Mo., spent 12 days during the summer of 2021 in a medically induced coma from Covid, breathing with the help of a ventilator. Doctors also detected signs of a possible stroke, although they did not know the timing, he said.
Even now, he said, he struggles with brain fog. He was looking for words to describe it.
He recalled an incident during a trip to Walmart shortly after his hospitalization that he attributes to brain fog. He and his wife went down different aisles, and when she was out of sight, he couldn’t remember if she told him where she was going or think about how to do it.
“That’s when I had a huge panic attack,” he said, adding that he held on to the pole and waited for the woman to find him.
Earlier this year, he said, his symptoms forced him to retire as application systems manager for the Missouri Department of Elementary and Secondary Education.
Another long-term Covid patient, Dave Nothstein, 52, of Colorado Springs, said he can still telecommute for a car dealership, but only enough hours a week to pay his insurance.
His biggest challenges are recalling words and short-term memory.
After being diagnosed with long-term Covid in March, Nothstein said, his brain was so foggy that he had to make a detailed to-do list to get through the day. “As silly as it sounds, it included ‘must eat breakfast,’ ‘must feed the dogs,’ ‘get mail,’ ‘do laundry,’ ‘do dishes,'” he said.
He now works with a cognitive therapist, who is not covered by insurance, to try to address his impairment.
Brain fog can also affect people with myalgic encephalomyelitis (also known as chronic fatigue syndrome), fibromyalgia, postural orthostatic tachycardia syndrome (POTS), Lyme disease and depression, experts say.
Patients who have undergone chemotherapy also report brain fog, which is often described as “chemotherapy”.
Severity and duration vary, but symptoms can have a “detrimental effect on professional, family and social life and can result in reduced quality of life,” said Jeffrey Wefel, professor and chief of neuropsychology at the University of Texas MD Anderson Cancer Center.
Angela Hernandez, 36, of Houston, said she struggled with months of brain fog starting in 2018 after four rounds of chemotherapy for ovarian cancer.
“You know when you’re dreaming and then you wake up and you can almost remember what you dreamed about, but as the seconds pass, the dream gets further and further away?” she said. “That’s how it felt the whole time.”
For Kelsey Botti, it all started with a concussion from a snowboarding accident in 2012. Later, Botti, a 32-year-old physical therapist from Pittsburgh, was diagnosed with POTS, a syndrome often characterized by a rapid heart rate, low blood pressure, and often dizziness, lightheadedness and fainting. when standing – and in some cases, brain fog.
“I wanted to cry because I was so grateful that someone helped me and that I had a diagnosis and direction,” she said. “And then I also wanted to cry because the person I was was completely gone.”
Botti underwent months of treatment that included medication and a controlled exercise program to build up her tolerance. And although there have been bumps and emergency room visits along the way, she said her symptoms have improved.
One of the challenges in treating brain fog is that patients can look healthy but feel terrible, said Robert Wilson, a neurologist at the Cleveland Clinic Neurological Institute. “If they don’t find the right medical team to understand them, they’re going to withdraw from health care and access it less, so they’re going to have fewer options,” he said.
A barrier to effective care for patients with brain fog is there a stigma attached to it, said Jacqueline Becker, a neuropsychologist at Mount Sinai who studied cognitive impairments after covid.
“Stigma prevents people from getting proper care where doctors usually write them off and say, ‘No, you’re young. Don’t worry about it. You’ll get better’. Or, ‘Look, your brain scan is back to normal. Everything is fine with you,’ she said. “And on the other side of that, you have a patient who is really struggling to function.”
Rachael Grossman, a 22-year-old from Chagrin Falls, Ohio, said she started developing symptoms of brain fog after a bout of whooping cough when she was 17. in my head, I was told it was anxiety,” she said.
Two years later, in 2019, she was diagnosed with POTS. Grossman is now a neuroscience major at Baldwin Wallace University and works part-time as a medical scribe. She said she has to find ways to try to overcome her “fog”.
On bad days, she said she can spend hours studying for a test without remembering the words, struggle to perform at her desired level at work or feel uncomfortable driving because she worries she might lose her position.
“Unfortunately, it’s still going to affect me, but I’m just figuring out ways to work around it,” she said.