Feb. 23, 2023 – In 2017, during a year of study abroad in Paris, Michelle Cano Bravo began to have hallucinations, insomnia, and paranoia. She also had problems with her thinking skills – she would get lost frequently, even in places she knew.
“I had no idea what was happening,” the 25-year-old says. “I was like a dying dog under a house and just looked for solitude.”
During that period, Bravo, who today is a law student based in New York, tried to take her life twice.
After she returned to the U.S. in early 2018, she began to have more disturbing symptoms. Once, when visiting Times Square, “I thought the people on the big screens were talking to me,” she says.
She panicked and couldn't find her way to the subway. She doesn’t remember how she got home. But when she did, she collapsed, screaming that she was dying. She was rushed to the hospital, where she was admitted to the psychiatric unit.
Days later, she was getting worse. She became unresponsive and comatose. Finally, she was diagnosed with encephalitis and multi-organ system failure.
Unfortunately, people with Bravo’s symptoms often are regarded as having a psychiatric illness rather than encephalitis, says Jesús Ramirez-Bermúdez, MD, PhD, of the National Institute of Neurology and Neurosurgery in Mexico City.
Caring for patients with encephalitis, he says, is “challenging,” because the patients can have sudden and severe mental health disturbances.
“They are often misdiagnosed as having a primary psychiatric disorder, for instance schizophrenia or bipolar disorder, but they do not improve with the use of psychiatric medication or psychotherapy,” Ramirez-Bermudez says. Rather, the disease requires “specific treatments,” such as antiviral medications or immunotherapy.
What Is Encephalitis?
Encephalitis is an inflammation of the brain caused either by an infection invading the brain (infectious encephalitis) or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis).
The disease can strike anyone at any age, and more than 250,000 people in the U.S. were diagnosed with it during the past decade. Worldwide, 500,000 people are affected by it annually.
Unfortunately, about 77% of people don’t know what encephalitis is, and even some health care professionals don’t recognize that psychiatric symptoms can be signs of acute illness in encephalitis.
Along with psychiatric symptoms, encephalitis can also include flu-like symptoms, fever, headache, sensitivity to light and/or sound, neck stiffness, weakness or partial paralysis in the limbs, double vision, and impaired speech or hearing.
Suicidality in People With Encephalitis
Between 2014 and 2021, Ramirez-Bermúdez and his colleagues studied 120 patients hospitalized in a neurologic treatment center in Mexico with anti-NMDA receptor encephalitis – a condition in which the antibodies produced by the person’s own body attack a receptor in the brain.
This receptor is particularly important as part of the way the body signals itself and is required in several processes that lead to complex behaviors, he explains. Dysfunction in this receptor may lead to times when these processes are disturbed, which may result in psychosis.
“In the last years, we observed that some patients with autoimmune encephalitis … had suicidal behavior, and a previous study conducted in China suggested that the problem of suicidal behavior is not infrequent in this population,” he says.
Ramirez-Bermúdez and his colleagues wanted to investigate how often patients have suicidal thoughts and behaviors, what neurological and psychiatric features might have to be related to suicidality, and what the outcome would be after receiving treatment for the encephalitis.
All of the patients had brain imaging with an MRI, a lumbar puncture (spinal tap) to check for signs of infection in the brain or spinal cord, an electroencephalogram (EEG) to detect possible seizures or abnormal electrical brain activity, as well as interviews with the patient and family members to look at mental skills, mood, and suicidal thoughts.
Of the 120 patients, 15 had suicidal thoughts and/or behaviors. These patients had symptoms including delusions (for example, of being persecuted or of grandiosity), hallucinations, delirium, and being catatonic.
After medical treatment that included immunotherapy, neurologic and psychiatric medications, rehabilitation, and psychotherapy, 14 of the 15 patients had remission from suicidal thoughts and behaviors.
Patients were followed after discharge from the hospital between 1 year and almost 9 years, and remained free of suicidality.
“The good news is that, in most cases, the suicidal thoughts and behaviors, as well as the features of psychotic depression, improve significantly with the specific immunological therapy,” Ramirez-Bermúdez says. .
Fighting Stigma, Breaking the Taboo
Study co-author Ava Easton, PhD, chief executive of the Encephalitis Society, says that encephalitis-related mental health issues, thoughts of self-injury, and suicidal behaviors “may occur for a number of reasons. And stigma around talking about mental health can be a real barrier to speaking up about symptoms – but it is an important barrier to overcome.”
Easton, an honorary fellow at the University of Liverpool in the United Kingdom, says their study “provides a platform on which to break the taboo, show tangible links which are based on data between suicide and encephalitis, and call for more awareness of the risk of mental health issues during and after encephalitis.”
Ramirez-Bermúdez agrees. There are “many cultural problems in the conventional approach to mental health problems, including prejudices, fear, myths, stigma, and discrimination,” he says. “This is present in popular culture but also within the culture of medicine and psychology.”
Bravo, the law student who dealt with encephalitis and its mental effects, told no one about her thoughts of suicide.
“It was cultural,” she says.
Even though her mother is a doctor, she was afraid to share her suicidality with her. In her South American family, “the subject of mental illness isn’t a fun topic to talk about. And the message is, ‘if you’re thinking about killing yourself, you’ll end up in an asylum.’”
Unfortunately, these attitudes add to a “delay in the recognition” of the diagnosis, Ramirez-Bermúdez says.
After treatment and as the acute disease lifted, Bravo slowly regained day-to-day function. But even now, more than 5 years later, she continues to struggle with some symptoms related to her mental skills, as well as depression – although she’s in law school and managing to keep up with her assignments. She’s not actively suicidal but continues to have fleeting moments of feeling it would be preferable not to live anymore.
On the other hand, Bravo sees a psychotherapist and finds therapy to be helpful, because “therapy refocuses and recontextualizes everything.” Her therapist reminds her that things could be a lot worse. “And she reminds me that just my being here is a testament to the will to live.”