What doctors wish patients knew about long COVID-19 brain fog

AMA News Wire

What doctors wish patients knew about long COVID-19 brain fog

Feb 17, 2023

Patients with long COVID—sometimes called COVID long-haulers—experience an assortment of symptoms that may persist for weeks, months or even years after their SARS-CoV-2 infection. While symptoms vary widely, months after COVID-19, some patients can’t shake the feeling that their brain is lost in a maze, and they can’t find their way back. This is a common complaint from COVID long-haulers, which has been described as “brain fog.”

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Brain fog—one of long COVID’s most misunderstood symptoms—is a name that has gained more traction to refer to a range of neurological symptoms such as feeling slow, difficulty thinking or concentrating, confusion and forgetfulness. Nearly half of patients report either poor memory or brain fog, according to a JAMA Network Open study on long COVID symptoms. And it doesn’t just afflict patients who were sick enough to need a ventilator or hospital care—it can affect anyone who has been infected with SARS-CoV-2.

In 2021, the AMA House of Delegates adopted policy to support “the development of an ICD-10 code or family of codes to recognize Post-Acute Sequelae of SARS-CoV-2 infection (‘PASC’ or ‘long COVID’) and other novel post-viral syndromes as a distinct diagnosis.”

The AMA’s What Doctors Wish Patients Knew™ series provides physicians with a platform to share what they want patients to understand about today’s health care headlines, especially throughout the COVID-19 pandemic.

For this installment, three physicians took time to discuss what patients need to know about long COVID brain fog and how to manage the symptoms. They are:

• Katherine Gantz-Pannel, DO, a psychiatrist and medical director of Right Track Medical Group in Oxford, Mississippi. She is also an alternate delegate in the AMA House of Delegates for the Mississippi State Medical Association and a member of the AMA Ambassador Program.
• Laura E. Halpin, MD, PhD, a child and adolescent psychiatrist with Southern California Permanente Medical Group in Downey, California. She is also an alternate delegate for the American Psychiatric Association.
• David Sousa, MD, a pulmonologist and critical care physician at Atlantic Medical Group as well as co-director of the Atlantic COVID Recovery Center. Atlantic Health System in New Jersey is a member of the AMA Health System Program.

“It’s a term that’s been around for a while, but we’re just hearing about it more now because it is one of the more common symptoms of long COVID,” Dr. Pannel said, noting that “people also refer to brain fog when they’re sleep deprived or experiencing a migraine.”

“Before COVID there really wasn’t this diagnosis of brain fog,” Dr. Halpin said. “There were cognitive issues caused by a variety of different things, whether it was brain injury, dementia, brain infection or other condition.”

“In the spring of 2020, patients really created the long COVID term and a lot of these reports of people having symptoms were on social media where patients were bringing it out,” Dr. Sousa explained. “When we think about brain fog, it’s not really a true medical term—it encompasses a few different things.”

“When people describe it to us, it is this idea of feeling sluggish, difficulty thinking or concentrating and some people just feel not as sharp,” he said.

“I had COVID-19 and brain fog was my main symptom. I didn't really have a whole lot of respiratory stuff, but I was left with big word-finding problems,” Dr. Pannel said. “I was hesitant to do any kind of public speaking because I knew what I wanted to say, but I could not find the words. It was so frustrating.”

“It probably lasted about six months. I feel like I am still not 100%, but I’m comfortable speaking again,” she said.

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“As a psychiatrist, I’m used to stigma surrounding mental health with depression and anxiety, but I’m even starting to see stigma surrounding long COVID brain fog where a lot of people aren’t believing that it exists,” Dr. Pannel said. “And patients are frustrated because they have all these symptoms, but there’s not a lab test or imaging to prove this is what’s going on.”

“A lot of cognitive issues can make a person feel like it’s all in their head and not real because when you have a cognitive issue, your brain is not working the best it can, so it’s hard to characterize what’s going on,” Dr. Halpin said. “But it is a real thing.” 

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“We work up our patients just like we would with anything else. And then sometimes we’ll do more formal stuff,” said Dr. Sousa. “So, for example, patients in the ICU have had these symptoms and, in those cases, we’ll do formal neurocognitive testing where we send them to our speech and language pathologists and they will test things like memory, attention, focus, all of these domains and see if there are deficits.”

“The workup is really based on the patient. It’s individualized and geared at their symptoms,” he said.

“If you have more of a severe primary infection with COVID-19, you’re at an increased risk of getting long COVID, which brain fog is a very common symptom of,” Dr. Pannel said. 

While long COVID symptoms such as brain fog can still develop if a person is vaccinated, it happens “at a lower rate, kind of the same way if you’re vaccinated, you’re less likely to get COVID, but you can still get COVID,” Dr. Halpin explained. “But vaccines do significantly reduce your risk.”

“The other big thing that reduces the likelihood of getting long COVID is treatment with Paxlovid,” she said.

“There are studies showing a dose response with vaccination and minimizing your risk of long covid. When you look at Delta versus Omicron, there's less of an incidence,” Dr. Sousa said. “So, anything that decreases your severity of disease tends to decrease your risk of long covid.”

One way to combat brain fog is to “protect what you have left of the cognitive reserve and make sure you’re not doing extra things to make it worse,” Dr. Halpin said. “If you can identify the deficits like you’re not great at multitasking right now or you have a hard time paying attention, schedule shorter meetings, avoid multitasking.

“Even if you’re doing an activity, take a moment, sit fully, come up with a plan for what you’re going to do and write it down. Then you can carry out the plan,” she added. Additionally, “take notes in situations where you wouldn’t have taken notes before, use a calendar, those sorts of things to find accommodations that help fill that gap.”

“It may even be helpful if you have a trusted friend or partner who can let you know if they notice anything different about you,” Dr. Halpin said.

“What I tell patients—and this helps with other long COVID symptoms too—is you want to make sure you’re getting good sleep, a healthy diet and are properly hydrated,” Dr. Pannel said. “Stay away from things like alcohol or other medications that can slow cognitive function.”

“We do focus a lot on getting a good night’s sleep. Sleep is super important,” Dr. Sousa. Additionally, “what we always want to do is make sure that we don’t get tunnel vision and we look for mimickers. So, if someone has had an issue with sleep apnea and they’re sleeping during the day, we’ll look for that too.”

“Sometimes it's tough for people to just start exercising if you don't feel well or if you have fatigue. But it’s about starting slow,” said Dr. Sousa. “Sometimes it may be five or 10 minutes, but make sure you put yourself in a situation where you can see how your body responds to exercise so that you’re not completely fatigued the next day.”

“Ultimately, getting up to 30 minutes five times a week of aerobic exercise is helpful,” he said.

“A lot of patients with brain fog are feeling anxious and it’s making them feel down, so meditation, yoga, any of that can not only address the memory and brain fog component of it, but also the mental health part of it,” Dr. Pannel said, noting that “you get anxious because you don’t know when it’s going to go away or if it will go away.

“But also try to stimulate and work your brain,” she added. That “means you can do crossword puzzles, read books, learn new skills, all of that to challenge your brain.”

“Any kind of stress or anxiety is going to make it hard because multitasking is a challenge,” said Dr. Halpin. “If you have one process running that’s terrified that you have brain fog and you don’t know what you can and cannot do and then trying to actually do what you’re trying to do, your brain is going to have a hard time running both of those processes at the same time.

“So, the stress can definitely make it harder. And again, that’s where you think about how you can accommodate the situation,” she added. For example, “bringing someone to your appointment to help write down your questions ahead of time and take notes in the appointment, that can make a big difference.”

“Especially with everything going on, prioritize emotional health,” said Dr. Sousa. “That’s why a big part of our screening looks at post traumatic stress disorders, anxiety and depression.”

Additionally, “there are lots of different options out there for peer support as well,” he said. “And part of that is talking about social and emotional health. It's beneficial.”

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COVID long-haulers: Questions patients have about symptoms

“Another thing that can help prevent brain fog and long COVID is to avoid getting COVID-19,” said Dr. Halpin. “It’s still important to get vaccinated and it’s still important to mask up and physically distance, especially when community prevalence is high.”

“Even if people are less likely to get COVID-19 or they think the disease is going to be less severe, there’s still a risk for long COVID, including brain fog, so it is still something worth trying to prevent,” she said.

“It’s important to know that a lot of people are experiencing these symptoms,” said Dr. Sousa. “Sometimes people find it either hard to come forward and see their doctor or talk to people, but it’s really important that people try to work on recovery and getting better.

“Even though they’re not perfect, exact targeted treatments, there’s always help out there,” he added. “You never want people to not feel well and not get help, so it’s important to know that a lot of people are going through the same things.”

“When brain fog is there and it's a problem, it's worth seeing a doctor. It's usually not something that's super subtle,” Dr. Halpin said. That means “you would notice it being really hard to work or it would come up in relationships or you would be forgetting appointments or that sort of thing.”

“If brain fog is starting to interfere with activities of daily living or if it's getting worse, it's time to reach out to someone,” Dr. Pannel said. “Whether it is a primary care physician or psychiatrist, just someone that can help you with your specific symptoms.”