My stove burners were filthy. I had put off cleaning them for close to five weeks, but cleaning falls to the bottom of a to-do list when you live alone and have to convalesce in a pandemic. It was the first week of May, and my acute textbook Covid-19 symptoms — fever, chest pain, shortness of breath — had gone away weeks ago. Now I was standing in my kitchen, grateful to be putting my life back together again. Though there was one part of me that definitely hadn’t recovered yet.
I finished dinner and grabbed the scrubbing sponge to chip away at the layers of crud on the stove. I had just put the kettle on to boil moments before, but the way my mind was working it could have been years ago that I’d decided to make tea. When I consider just how close I was to moving the kettle over to put my hand in an open flame and pick up a searing-hot burner grate, my body still shakes. But at that point, a month after recovering from Covid-19, it was my reality. My brain was broken. This had been going on for close to two weeks.
There was the time I walked from my bedroom to the bathroom and, out of habit, washed my hands immediately (and quite thoroughly!) but then forgot to pee. Or the times a text from a friend would appear on my phone screen and I’d have no idea what she was talking about, even though I’d written to her just a few seconds before and she was responding to me. One Sunday morning, my boyfriend Matt was over. We were making breakfast, and I cracked the eggs into the carton rather than the bowl: the kind of mistake you call a “senior moment,” but only when you are actually a senior. “Are you okay?” he asked me. I laughed it off and said I didn’t know. Was I?
I had other lingering neurological symptoms as well. I was still putting far too much pepper on my food because otherwise, it didn’t taste like much. Sometimes there was ringing in my ears. My entire body ached, and I was so fatigued it felt like I was training for a triathlon. There were also migraines every single day that started midmorning and didn’t go away until I eventually fell asleep (if I was even able to sleep at all). My brain felt too large for my skull. Some nights the throbbing was so intense it was as if my brain contained a second heart.
All of my symptoms added up to what doctors are beginning to define as a “post-Covid syndrome.” Many of the features of this illness can look similar to chronic fatigue syndrome, which was seen in some patients after the SARS outbreak. Headache, fatigue, malaise, cognitive slowing or dysfunction (“brain fog”), dizziness, loss of smell and taste, and muscle aches are some of the most commonly reported lingering symptoms from the virus that may endure — or even emerge — weeks and months after an acute Covid-19 infection.
“Are you okay?” he asked me. I laughed it off and said I didn’t know. Was I?
Doctors still don’t know what causes some people to experience long-lasting neurological symptoms from the novel coronavirus. Experts say these symptoms are either precipitated by the virus crossing the brain-blood barrier or by some immune-mediated response in the body — or a combination of both.
“When the virus gets to the brain through the nerve endings, for example, what ends up happening is there’s a viral attack on the brain, but there’s also an immune reaction,” says Siddhartha Nadkarni, MD, assistant professor of neurology and psychiatry at NYU Langone, and my doctor at the NYU Langone Comprehensive Epilepsy Center. “There’s an inflammatory state that can cause more widespread injury to the brain. Once the virus is gone, that inflammatory state takes a little time to sort of die down. On top of that, you also need time for recovery. When the brain is injured it usually takes longer for those networks to get back online and recover.” It also doesn’t help that, in general, the brain is much slower to heal than other parts of the body.
My own experience as a patient was perhaps complicated by the fact that I have an existing neurological condition. I’ve lived with epilepsy for nearly my entire life. As an adult, my epilepsy has mostly consisted of focal seizures where I do not lose consciousness, and until I got Covid-19 in early April, I was seizure-free for close to 10 years.
The first seizure happened at the very end of March, the day before I began to run a fever from the virus. I was sitting on my couch, typing away at my laptop, when suddenly my heart began to flutter like I’d run up a flight of stairs. Next, I felt like I needed to gasp for air, something akin to an asthma attack. Anxiety flooded my body, the kind sometimes described in medical literature as a “sense of impending doom.” The whole episode ended with the back of my head aching like someone had whacked me with a blunt object. It had been so long since I had a focal seizure I didn’t realize that this was what had occurred.
Instead, I went about my day, and later headed out to the grocery store. But when I arrived, I couldn’t recall what I needed. I stared at the display of Domino sugar bags near the entrance until I remembered I was there to buy half-and-half.
The next morning, I felt like I had the world’s worst hangover accompanied by a fever. I wished I could blame the wine I had the night before, but it was evident to me that I had Covid-19. I was sick at the point when New York City was still rationing tests so I couldn’t get swabbed. Besides, why did I need to stand on a long line with other sick people in the cold to get an answer I already knew? (Later on, I did get an antibody test that was positive.)
The first seizure happened at the very end of March, the day before I began to run a fever from the virus.
So, all I had were my instincts and the advice of my primary care physician over several telemedicine appointments to help me through two of the worst weeks of my life. Covid-19 is a bit of a medical rollercoaster ride. You feel awful, then you feel better, then you feel even more awful and then you slowly recuperate — this is a disease trajectory that’s been observed and documented in some research.
I had all the symptoms in the book, but thankfully I never needed to physically take myself to the hospital or a doctor. It hurt to breathe in, my body ached and I’d wake up completely drenched with sweat. However, years from now what I’ll probably remember most about my Covid-19 experience is the migraine-induced insomnia made worse by the endless ambulance sirens and wondering if I would need one to come get me.
During one of those sleepless nights, a few days after I first became ill, I was reading about a new study, a case series out of Wuhan, China, that described the neurological symptoms of 214 patients who were hospitalized with severe Covid-19 infection. The landmark paper, published in JAMA Neurology, reported that more than a third of the patients had neurological symptoms including dizziness, headache, altered consciousness, impaired taste and smell, neuropathy, and seizures.
Of course, since that study, more research has emerged that identifies a link between Covid-19 and incidences of stroke, encephalitis, seizures, neuropathy, and encephalopathy. In one of the very most recent studies, conducted by researchers in the U.K. and published in the Lancet Psychiatry, 39 of the 125 hospitalized patients had altered mental status, due to encephalitis and encephalopathy.
Still, we don’t know much yet about why these symptoms endure for some long after the rest of the body has recovered. This is, in part, because SARS-CoV-2 was identified only a little more than six months ago.
However, when it comes to the natural history of pathogens, SARS-CoV-2 is actually not unlike most other viruses in its potential to shake up the central nervous system in its human host, even possibly after acute infection. These neurological and psychiatric sequelae are well recorded in medical literature but possibly less so by popular history.
During the 1918 influenza pandemic, doctors noted that viral infection was often followed by diseases of the central nervous system, especially psychiatric illness, known as influenza psychosis with symptoms that were similar to schizophrenia or dementia. Patients also suffered from encephalitis lethargica (“sleeping sickness”). Some patients of the more recent Middle Eastern Respiratory Virus (MERS) outbreak had encephalopathy, Guillain-Barré syndrome (GBS), and other neuromuscular and demyelinating conditions. And polio, Zika, measles, and HIV are other viruses that can have neurological manifestations that may endure but don’t necessarily occur in every patient with that particular virus.
In one recent study, 39 of the 125 hospitalized patients had altered mental status, due to encephalitis and encephalopathy.
“There’s a lot of heterogeneity in the ways human hosts respond to viruses. Some people have kidney problems, some people have mostly lung problems, some people have no symptoms, and some people end up in the ICU,” says Serena Spudich, MD, chief of neuroinfectious diseases and global neurology at Yale University School of Medicine. “If you have a chronic underlying neurological condition there is a higher risk that if you get Covid, there may be some unmasking of that or some worsening of symptoms.”
“I actually think epilepsy is a perfect example: Someone who has a seizure disorder that’s well-controlled when everything else is fine is probably at risk for having breakthrough seizures or more severe seizures in the setting of having Covid,” Spudich added.
Which brings us back to my own case study. From what we know so far, seizures appear to be a less common neurological symptom of Covid-19. However, according to Nadkarni, the virus likely lowered my seizure threshold and made me more vulnerable to breakthrough seizures.
In fact, without the protection of my regular anti-seizure medication, it is very possible that I would have faced a more serious generalized seizure and lost consciousness. I may have had more serious cognitive symptoms and even some associated neuropsychiatric symptoms such as psychosis or delirium during or after the virus. Really, we just don’t know. “If you already have a vulnerable brain it would be possible to believe that this virus would affect you more,” says Nadkarni. “My patients that have had TBIs [traumatic brain injuries], for example, I tell them they should assume they’re on that list.”
A recent MRI of my brain, ordered by Nadkarni and conducted nearly two months after my onset of Covid-19 symptoms, showed some subtle abnormalities when comparing it to my last brain scan from 2011, which served as a baseline. Specifically, the new MRI showed subtle structural abnormalities in both hippocampi, according to Nadkarni. The hippocampus is part of the temporal lobe, and it is the area of the brain associated with memory function: in particular, declarative memory. It is also a location in the brain where partial seizures tend to arise and where focal seizures tend to arise (mine have).
Interestingly enough, this area of the brain is the same neighborhood as the entorhinal cortex, which is where the brain processes smell, which could explain why olfaction is affected in some people with Covid-19. This area is also close to the amygdala, which could give us a window into why literature is reporting patients with emotional lability. “I think it all makes sense anatomically, actually,” Nadkarni says.
My MRI findings do check out with the symptoms of memory problems and seizures I experienced during and after the virus. I rode them out, just like I did the virus, and finally made a full recovery. According to Nadkarni, the hippocampal changes may be related to the seizures I had while sick, but they could also be simply related to having epilepsy. And there’s yet another possibility: the MRI findings could be an overreading of a scan and overdiagnosis due to the fact that image quality has vastly improved even over the last five years. It’s hard to know, and even a follow-up MRI in six months will never address all of these questions. In this pandemic, I certainly won’t be the last patient without all of the answers.