“It’s a moment when the public and medical community realize this is real. That happens after certain infections,” said Akiko Iwasaki, a professor of immunobiology at Yale University and a co-author of a review article on covid-19-related cognitive impairment.
“I think it’s time to be recognized,” she said.
How Covid brain fog may overlap with ‘chemo brain’ and Alzheimer’s
Research shows the majority of people with long-lasting Covid symptoms have reported brain fog – a collection of symptoms including impairments in attention, concentration, memory and processing speed. Iwasaki and Michelle Monje, a professor of neurology at Stanford University, reviewed more than 100 studies relevant to post-Covid cognitive dysfunction.
They outlined six possible causes of Covid-related cognitive dysfunction and concluded that a likely common cause is pneumonia, which causes inflammation in the brain and subsequent nerve cell dysfunction.
Patients who have experienced brain fog caused by a variety of medical 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 have had to change their hours or stop working altogether. And nearly 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 no one method has been proven to work for all patients.
How long Covid has been reshaping the brain – and how we might treat it
Dennis Kolson, a neurologist at the Penn Neuro COVID Clinic at the University of Pennsylvania, said doctors have screened about 350 long-Covid patients for ailments, including brain fog, since the clinic opened last year. He said people consistently appreciate having the opportunity to speak to a doctor who understands their symptoms.
“‘Am I like the others? Do you meet people like me?’ I get that question every time,” Kolson said. “I almost always say, ‘Yes. You’re not alone.’ ”
Edwin Hall, a 65-year-old Navy veteran from Fulton, Missouri, spent 12 days in a medically-induced coma from Covid in the summer of 2021, breathing on a ventilator. Doctors also spotted signs of a probable stroke, although they didn’t know when, he said.
Even now, he said, he wrestles with brain fog. He searched for words to describe it.
He recalled an incident during a Walmart trip shortly after his hospitalization that he attributed to brain fog. He and his wife walked separate hallways, and once she was out of sight he couldn’t remember if she had told him where she was going or if she was contemplating how to deal with it.
“I had a big panic attack then and there,” he said, adding that he was clinging to a pillar, waiting for his wife to find him.
Earlier this year, he said his symptoms forced him to retire as an application systems manager for the Missouri Department of Elementary and Secondary Education.
Another longtime Covid patient, Dave Nothstein, 52, of Colorado Springs, said he can still work remotely for a car dealership but only enough hours a week to pay for his insurance.
His biggest challenges are word recall and short-term memory.
After his lengthy Covid diagnosis in March, Nothstein said his brain was so foggy he had to make detailed to-do lists to get through the day. “As silly as it sounds, it included ‘make sure you have breakfast,’ ‘make sure you feed the dogs,’ ‘get the mail,’ ‘do the laundry,’ ‘do the dishes,'” he said.
He is now working with an uninsured cognitive therapist to try to manage 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, often referred to as “chemo brain.”
The severity and duration vary, but the symptoms “can adversely affect work, family, and social life and result in a decreased 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 through 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 were dreaming about, but then the dream just gets further and further away as the seconds go by?” she said. “That’s how it felt the whole time.”
It started for Kelsey Botti with a concussion after a snowboarding accident in 2012. Botti, a 32-year-old physical therapist from Pittsburgh, was later diagnosed with POTS, a syndrome often characterized by a rapid heart rate, low blood pressure, and often dizziness, light-headedness, and Fainting on standing up – and in some cases, brain fog.
“I wanted to cry because I was so grateful that someone helped me and I had a diagnosis and a 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 though there were bumps along the way and emergency room visits, she said her symptoms have improved.
A challenge in treating brain fog is that patients can appear healthy but feel terrible, said Robert Wilson, a neurologist at the Cleveland Clinic’s Neurology Institute. “If they don’t find the right medical team to understand them, they will withdraw from healthcare and have less access to healthcare, so there are fewer opportunities for them,” he said.
A barrier to the effective care of patients with brain fog is the stigma attached to it, said Jacqueline Becker, a neuropsychologist at Mount Sinai who has studied post-Covid cognitive impairment.
“The stigma prevents people from getting proper care, where doctors tend to write them off and say, ‘No, you’re young. Don’t worry. You will get better.’ Or, “Look, your brain scan came back normal. You’re fine,’” she said. “And on the other hand you have a patient who is really struggling to function.”
Rachael Grossman, a 22-year-old from Chagrin Falls, Ohio, said that after a whooping cough attack at age 17, she developed symptoms of brain fog in my head and said it was anxiety,” she said.
Two years later, in 2019, she was diagnosed with POTS. Grossman is now studying neuroscience at Baldwin Wallace University and works part-time as a medical writer. She said she needs to find ways to try to overcome her “haze.”
She said that on bad days, she can spend hours studying for a test without remembering a word, struggle to get to the level she wants at work, or feel uncomfortable driving because she fears she might could switch off.
“It will continue to affect me unfortunately, but it’s just a matter of finding ways around it,” she said.
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