It’s a frustrating puzzle for physicians: a long COVID-19 patient’s lab work and imaging might look okay, but their quality of life is drastically different from their pre-COVID life. From brain fog to dizziness, lack of appetite, joint pain, tingling and numbness, the list of symptoms is endless – and debilitating – for millions of long COVID patients.
Physicians are working to put together the pieces on why some patients have long COVID and suffer from significant symptoms months – or years – after their illness. Recent breakthroughs have discovered connections between long COVID symptoms and a neurologic component.
Dysautonomia: Patterns Point to Brain Inflammation
Karima Benameur, MD, neurohospitalist at Emory, noticed early in the pandemic that her COVID ICU patients were confused and agitated, requiring large doses of sedation.
When an ICU nurse mentioned to Dr. Benameur that her patient became agitated “like clockwork” every 40 minutes, Dr. Benameur began suspecting that dysautonomia was present.
The autonomic system, otherwise known as the nervous system, regulates involuntary body functions like breathing, heartbeat, blood flow and digestion. A dysfunction of that system – dysautonomia – causes rhythmic, cyclic patterns.
Once Dr. Benameur made the connection, she began working with neurologist and researcher Dr. William Hu, chief of cognitive neurology at Rutgers, to gather data to prove this hypothesis. They performed MRIs, collected spinal fluid on COVID patients and analyzed the results.
“We started to look for any signs of brain dysfunction in the spinal fluid,” says Dr. Benameur. “Not only did we see signs of COVID serology, which are antibodies in the spinal fluid, but we also saw very high levels of cytokines.”
Cytokines in the spinal fluid is a sign of brain inflammation, which confirmed that the autonomic dysfunction – and symptoms accompanying it like agitation – are neurologic. The discovery also provides vital insights into the high number of long COVID patients experiencing anxiety or depression as neurologic – and part of the COVID disease process.
An Emory physician at a long COVID clinic operated at Emory University Hospital Midtown, Alex Truong, MD, says that 40-50% of his long COVID patients have experienced anxiety and depression. More than 11 million Americans with long COVID report anxiety and depression, the most commonly reported symptoms.
“COVID is doing something to the brain or the brain activity in the acute phase,” says Dr. Truong. “As we look at these post-COVID folks, you can see that there is a weird hyper-activation in terms of brain fog activity. And then comes anxiety and depression.”
Treating Long COVID Nationwide
For many patients with long COVID, brain fog is a crippling piece of their long COVID recovery.
Dr. Jeff Siegelman, an ER physician at Grady Hospital in Atlanta, was on the front lines of the pandemic – until he got COVID in August 2020. He spent the next 40 days isolating in his basement, staying away from his wife and children while fighting near-constant fevers. Once Dr. Siegelman’s fevers finally broke, he was left with long COVID.
“I wake up feeling well, but the more I exert myself physically or cognitively, the more I get brain fog, dizziness, headaches,” says Dr. Siegelman. “The heart palpitations can come on if I’ve done way too much.”
Dr. Siegelman is benefitting from a growing movement in the medical community to treat long COVID symptoms with repurposed drugs. His cardiologist recommended that he start Allegra and Pepcid, which gave him enough symptom relief to return to work part-time.
There are fewer than 50 long COVID clinics in the country, and most are near academic medical centers. To reach the general population, there is an emerging need to educate family physicians who will be treating long COVID patients for years – many who will be struggling with long COVID side effects for their lifetimes.
Repurposing medications like Ritalin, beta blockers and antihistamines can significantly impact the quality of life for long COVID patients. Government agencies like the National Institutes of Health (NIH) and U.S. Food and Drug Administration (FDA) support efforts and provide tools to track results. The NIH has also dedicated more than a billion dollars to fund long COVID research, which could involve studying tens of thousands of patients.
There are also grassroots patient-led organizations appearing nationwide for people with long COVID. Body Politic, Long COVID Alliance and Survivor Corps are all committed to supporting long COVID patients through education and research as they learn to live with the virus that changed their lives.
“It makes me grateful for the training I’ve had,” says Dr. Truong. “We do this because we want to help people. We run in when everyone else runs away.”
Physicians can make patient referrals to Emory’s Long COVID Clinic by calling 404-778-3261. Our online COVID-19 Resources and Safety Center is also available at any time with the latest COVID-19 information to help you stay informed and healthy.
About Your Fantastic Mind
Emory University and the Emory Brain Health Center have partnered with Georgia Public Broadcasting (GPB) on a television series, “Your Fantastic Mind,” which features compelling stories about brain-related health and wellness.
“Your Fantastic Mind” began airing Season 3 in November 2021 on GPB’s statewide television network. The Emmy-winning news magazine-style show highlights patient stories and reports on cutting-edge science and clinical advances in neurology, neurosurgery, psychiatry, sleep medicine and rehabilitation medicine.
To watch complete episodes of Your Fantastic Mind, visit emoryhealthcare.org/yfm.
Seasons 1&2 of “Your Fantastic Mind” examined topics including how COVID-19 can affect the brain, sleep apnea, obsessive-compulsive disorder, Alzheimer’s disease, stroke, PTSD, Huntington’s disease, migraines and video gaming disorder, which has been designated a mental health disorder by the World Health Organization.
Jaye Watson is the show’s host, writer and executive producer. She is an Emmy- and Edward R. Murrow award-winning veteran Atlanta journalist and video producer for the Emory Brain Health Center.
Emory Brain Health Center
The Emory Brain Health Center uniquely integrates neurology, neurosurgery, psychiatry and behavioral sciences, rehabilitation medicine and sleep medicine and transforms patient-centered care for brain and spinal cord conditions through research and discovery.
Bringing these specialties together allows more than 400 researchers and clinicians from different areas to collaborate to predict, prevent, treat or cure devastating diseases and disorders of the brain more rapidly. These collaborations are demonstrated in numerous centers and programs across the Brain Health Center, including the Epilepsy Center, Pituitary Center, Stroke Center, Treatment-Resistant Depression Program and Veterans Program.
Emory’s multidisciplinary approach is transforming the world’s understanding of the vast frontiers of the brain, harnessing imagination and discovery to address 21st century challenges.
Learn more about comprehensive, diagnostic and innovative treatment options at the Emory Brain Health Center.