His brain was inflamed. Suddenly the line between physical and mental health began to blur
Research links brain inflammation, injuries to mental health issues. Are patients getting enough support?
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Last September, after Frank Parent fainted in the kitchen of his condo near Laval, Que., physicians suspected he'd had a seizure, or perhaps a blood clot in his brain.
But after multiple tests, the 59-year-old learned a more unusual diagnosis: He was experiencing an encephalitis attack, the medical term for brain inflammation.
Parent suffered memory loss and spent close to a month in hospital recovering from the condition, which his medical team told him was likely caused by a viral infection — though efforts to test his blood for various pathogens didn't turn up any clear cause.
By early October, he felt back to normal and headed home. Then, in the weeks that followed, Parent began to feel a new — and more alarming — set of symptoms.
Debilitating anxiety. Crushing depression. Severe panic attacks. A looming sense he'd gone to the "dark side," that his suffering was a burden on his wife and children. All of it hit him in waves.
Though he'd long experienced anxiety to some degree, it paled in comparison to the severity of the mental health issues the father of two was suddenly enduring.
"Take your worst anxiety attack, multiply it by a thousand," he recalled.
"I was shivering, I couldn't control my emotions, it was all over the place, and obviously I was panicked by it."
Parent's harrowing experience of a rare brain condition, later manifesting as serious mental health symptoms, may seem extreme. But he's far from alone.
Various types of damage to the brain, whether through inflammation or an injury, can spark or flare up an array of psychiatric conditions, and clinicians say far more research and support is required to help people recover from the complex, long-lasting after-effects.
"It doesn't really matter whether it's encephalitis or a motor vehicle accident or brain tumours, it all presents, roughly — at the end of the day — the same," said Toronto-based neuropsychiatrist Dr. Chanth Seyone.
Study links encephalitis, suicidal behaviour
When it comes to encephalitis, new research out of Mexico revealed just how severe mental health struggles can get for certain patients.
The paper, published this week by the Journal of Neuropsychiatry and Clinical Neurosciences, looked at data from 120 patients who were suffering from a specific type of brain inflammation known as anti-NMDA receptor encephalitis, an autoimmune condition in which someone's antibodies attack certain receptors in the brain.
It's known for causing a host of symptoms, from fever to confusion to seizures. The research found roughly 13 per cent of the patients studied also showed signs of major depression, exhibiting suicidal behaviours during the early stages of their illness — with nearly half actually attempting suicide.
Persistence of those symptoms after immunotherapy — a treatment used to slow down the body's hyperactive immune response — was more rare.
"There's a need for much more research addressing the causes and impacts of psychiatric symptoms in patients who've had encephalitis," said U.K. researcher Dr. Ava Easton, one of the study's authors and chief executive of the Encephalitis Society.
Prior studies suggest many patients with autoimmune encephalitis are first seen by psychiatrists because of the frequent onset of symptoms such as agitation, hallucinations, delusions, or depressed mood, which can even present before neurological symptoms like seizures.
Easton's organization also recently surveyed more than 400 people from various countries who reported being diagnosed with encephalitis, and nine in 10 respondents indicated that they had at least one current psychiatric symptom, while nearly 38 per cent had thought about suicide.
"What we found extraordinary was the overwhelming numbers, that for a neurological condition, so many people were then going on and reporting psychiatric issues afterwards," Easton said.
That finding on its own is concerning enough, but it's also the tip of a very large, little-understood iceberg. And multiple medical experts who spoke to CBC News said those connections aren't always clear to clinicians, putting patients at risk of depression, self-harm, or worse.
According to Dr. Matthew Burke, a cognitive neurologist at Sunnybrook Health Sciences Centre in Toronto, it's one of the most neglected areas in conventional medicine: How pain or other factors can modulate the brain.
"We've failed, really, to address some of these complex border-zones between medical and neurological illness and psychiatric illness," he said.
Various brain illnesses, injuries linked to mental health issues
Burke said the new encephalitis research from Easton and the team in Mexico was limited by its small sample size, but he praised the paper for shedding light on a phenomenon that can be "quite devastating" if it's not treated early on.
"We could've missed these cases," he said, "and chalked it up to some bizarre psychiatric disease or just some kind of other neurological medical condition."
The links between encephalitis and suicidal ideation is just one extreme example of how inflammation in the brain can present as psychiatric symptoms, he added. "But when you think about how this is happening more subtly on different continuums, it can explain a variety of states."
There is an entire spectrum of brain illnesses and injuries that may have links to serious mental health issues, emerging research suggests.
A country-wide, retrospective study out of Denmark, published in 2020 in the peer-reviewed Journal of the American Medical Association, explored whether people with neurological disorders die by suicide more often than others.
The researchers looked at more than 560,000 patients who had medical treatment for brain-related conditions — such as head injury, stroke, epilepsy, multiple sclerosis, encephalitis — throughout a nearly four-decade span up to 2016.
There was a "significantly higher rate of suicide among those with a diagnosed neurological disorder than persons not diagnosed with a neurological disorder," the researchers concluded.
WATCH | They all got concussions. Here's what happened next
Encephalitis, whether triggered by an autoimmune response or a pathogen, is a fairly rare condition, striking just a handful of people out of every 100,000 individuals in any given year. It's sometimes confused with meningitis — inflammation and swelling of the protective membranes of the brain and spinal cord — which has also been linked to a host of mental health issues, sleep disorders, and personality changes.
There are also traumatic brain injuries, or TBIs, ranging from mild concussions to more severe forms of trauma, which can also put people at a heightened risk of mood changes, anxiety, and depression.
Most headline-making in recent years has been chronic traumatic encephalopathy (CTE), a neurodegenerative syndrome which can manifest after repeated blows to the head through sports like football, and has been linked to serious psychiatric symptoms, including depression, aggression, and suicidal behaviour.
Some conditions remain 'poorly understood'
Scientists are starting to make strides in understanding the connections between those kinds of conditions and potential impacts on mental health, said Burke, though he feels the divide between medical specialties has held some of that work back.
"The brain is the home of both neurology and psychiatry," Burke said. "The circuits in the brain are very close to each other — intimately overlapping — but we sometimes consider them separate entities."
Seyone, the founding director of the Acquired Brain Injury Clinic at the Toronto Western Hospital, agreed there's a divide between those specialties. Yet the mechanisms at play linking brain trauma to mental health conditions are fairly straightforward, he said.
"The way to understand brain injury is that it makes who you are — or who you were — more prominent," said Seyone, who regularly treats patients suffering from lingering, and life-altering, psychiatric issues.
"So if you had some depressive tendencies before the injury, you could end up with clinical depression."
Same goes with anxiety developing into severe panic attacks, or minor sleep issues evolving into full-blown insomnia.
WATCH | Return to activity could speed concussion recovery, research suggests
The struggle, Seyone said, is that when patients are treated in hospital for the immediate impact of a brain condition, like memory loss or cognitive deficits, they're often left in the dark about the ripple effect on their mental health.
"What happens after that is patients go home, and suddenly they're living in the community with significant deficits and they can't manage it," he said.
And that's when things can take a turn. Anxiety, psychosis, irritability, or depression can all impact people's relationships, while cognitive decline can force people to step away from their jobs, leaving them increasingly isolated. In severe cases, Seyone said, that can lead to people becoming violent to others, or even suicidal.
'It just overtakes your brain'
Alongside more research, Seyone stressed the need for more government funding and support to develop community-based programs to help patients manage lingering symptoms, retrain their brains, and improve their quality of life. Without those supports, he warned, more and more people will keep falling through the medical system's cracks.
"There has to be more recognition that brain injuries lead to lifelong problems," he said. "It affects the patient, but also patients' families and communities."
Parent, who only recently started to feel better in the wake of his encephalitis attack, is now among those calling for more awareness of those links.
There are protocols for people recovering from cancer or heart disease, he said, yet when he was discharged from the hospital, there was little follow-up, and no discussion of potential mental health ramifications from his illness.
"I completely freaked out," he said, "and I had the sense that I was alone."
In the months that followed, he made another hospital trip to deal with an upset stomach — which he suspects was brought on by his extreme anxiety — and eventually made connections with encephalitis advocates who helped him better understand what he'd just gone through.
Parent's wife also bought him a world map, and the pair would put stickers on countries they each wanted to visit. Any spots that overlapped, she told him, they'd have to travel to before they died. "I grabbed on to something meaningful, right?" Parent recalled. "Something that I enjoy, that brought me out of this whole mess."
With that support from his family, and other encephalitis survivors, he began to feel more like his old self.
But he won't forget the overwhelming sense of isolation and mental strain he endured in the weeks after his diagnosis.
"You have to cope with something you can't smell, you can't touch, you can't feel. It just overtakes your brain, for lack of better words," he said. "And even though you try to make sense of it, it's completely out of control."
If you or someone you know is struggling, here's where to get help:
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Talk Suicide Canada: 1-833-456-4566 (phone) | 45645 (text between 4 p.m. and midnight ET).
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Kids Help Phone: 1-800-668-6868 (phone), live chat counselling on the website.
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Canadian Association for Suicide Prevention: Find a 24-hour crisis centre.
This guide from the Centre for Addiction and Mental Health outlines how to talk about suicide with someone you're worried about.
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