Ever wondered how it feels to lose control over your own mind? Intrigued by the mysteries of the human brain and autoimmune diseases? Dive into this gripping story of a young woman's journey through unexplained illness, misdiagnoses, and an eventual life-altering discovery. Learn about the instrumental work of renowned neurologists like Dr. Russo, Dr. Najjar, and Dr. Josep Dalmau, as they unravel the enigma of anti-NMDA-receptor encephalitis.

Brain on Fire: My Month of Madness

In early 2009, New York City was gripped by a bedbug scare, and one morning, Susannah Cahalan, the author, woke up with two red dots on her arm. Despite finding no evidence of bugs, Susannah became obsessed, calling in an exterminator who assured her that her apartment was bug-free. 

Yet, she insisted he spray anyway. At work, Susannah tried to hide her growing paranoia from her colleagues at the New York Post, a bustling, eccentric newsroom dating back to 1801, where she'd worked since she was seventeen.

During a pitch meeting with her intimidating new editor, Steve, Susannah realized she was completely unprepared. She managed to stumble through, but left feeling inept and anxious. That evening, Susannah discarded cherished work memorabilia, convinced they harbored bedbugs. This obsessive behavior, Susannah later learned, could signal psychosis.

A few days later, Susannah woke at her boyfriend Stephen's place, feeling a sudden, irrational urge to snoop. She found a photo and letters from his ex, which sent her into a jealous frenzy. This was unlike her, and she felt both ashamed and physically unwell. Susannah's left hand went numb, a sensation that spread to her toes.

Seeking advice, Susannah called her gynecologist, Dr. Rothstein, who urged her to see a neurologist. Dr. Bailey's examination found nothing abnormal, but he ordered an MRI. The MRI was normal, except for some enlarged lymph nodes, suggesting a virus, possibly mono.

Despite this diagnosis, Susannah's symptoms persisted. She struggled through a Ryan Adams concert with Stephen and his family, feeling disconnected and unwell. At work, Susannah shared her worries with friends, who reassured her but also urged medical attention.

Her father, concerned, visited Susannah, and they watched "The Wrestler." The film's father-daughter themes hit her hard, and she broke down in tears. Afterward, her father walked her home, where he saw her messy apartment and scolded her gently, urging her to get her life together. Despite the chaos, Susannah realized her problem was more than just an illness—it was a sign that something much deeper was wrong.

Did New York City's Bedbug Scare Trigger a Hidden Psychosis?

Returning to work after a bout of illness, Susannah felt like an impostor in her own skin, struggling with stories that went nowhere. Her confidence was shaken, and exhaustion from sleepless nights led her to call in sick again. Then, a twist: Susannah's doctor informed her that her suspected mononucleosis was a false alarm. Energized by this news, Susannah convinced her boyfriend Stephen to take a trip to Vermont for a much-needed escape.

Their weekend in Vermont was idyllic, filled with breakfasts at quaint diners and Stephen snowboarding while Susannah read by the fire.

Back at work, Susannah was tasked with interviewing John Walsh from "America's Most Wanted," but her focus wavered, and strange symptoms started to surface. Colors in Times Square were blindingly bright, and Susannah felt overwhelmed by sensations she couldn't control.

Desperate for answers, Susannah turned to Liz, a Wiccan priestess at the office, for a tarot reading. Her optimistic predictions provided fleeting comfort. However, the news of a colleague's death from melanoma haunted Susannah, echoing her own health fears. As her behavior grew erratic, Susannah experienced out-of-body sensations and vivid hallucinations. Despite her attempts to hide her distress, her colleagues noticed, and her friend Mackenzie advised her to document her symptoms meticulously.

Stephen, unaware of Susannah's increasing instability, witnessed a terrifying seizure that marked the beginning of a dark descent. The seizure, and others that followed, were severe, involving hallucinations and paranoia. Hospital visits provided no clear answers, leaving Susannah frustrated and scared. Her mother and stepfather, Allen, stepped in, trying to support her through this alarming crisis.

Back home, Susannah's erratic behavior persisted, leading to more surreal experiences and emotional swings. She clung to the idea that she might have bipolar disorder, finding solace in the thought that many creative minds shared this condition. Yet, her mom's worry grew, and a neurologist's vague reassurance did little to ease their fears.

As Susannah's condition worsened, the struggle to understand what was happening to her intensified. Each new symptom and emotional upheaval felt like another piece of a puzzle that refused to fit together, leaving Susannah trapped between reality and the chaos within her mind.

Battling the Unknown: From Vermont Getaway to Interviewing John Walsh Amid Health Crisis

Allen drove Susannah and the others to the Upper East Side, to the brownstone of psychiatrist Sarah Levin. Her waiting room was straight out of a Woody Allen film, and Susannah was eager for a diagnosis to confirm her self-identified bipolar disorder. 

Dr. Levin, resembling Carol Kane, welcomed Susannah. She took a Polaroid photo, a quirky routine of hers, and listened as Susannah explained her symptoms—vivid experiences, insomnia, grand ideas. 

Dr. Levin suspected a "mixed episode" of bipolar disorder and prescribed Zyprexa. Meanwhile, Susannah's family worried, with her brother James adamantly dismissing her self-diagnosis. 

Later, convinced that her symptoms were due to the new medication Keppra, Susannah attempted to purge it from her system, panicking over its effects. Despite her struggles, her family’s concern anchored her. Her erratic thoughts were scattered across random Word documents, where she tried to piece together her unraveling mind.

Susannah's behavior worsened, leading to seizures and moments of paranoia. At a crowded restaurant, she panicked, convinced everyone was talking about her, only calming down once outside. Even with Stephen, whom she loved, her mind was a whirlwind, leaving meals untouched and decisions unmade. 

In desperation, her family took her to Dr. Bailey for an EEG, but the test showed nothing abnormal. Frustrated, her family demanded answers, refusing to accept a diagnosis of alcohol withdrawal. Despite her resistance, they convinced Susannah to go to NYU for further observation.

At the hospital, she experienced another seizure, and her consciousness began to slip away entirely, marking the start of a month of madness—a period during which Susannah's identity felt completely lost.

Could Upper East Side Psychiatrist Unravel a Month of Madness?

After a sudden blackout while watching TV, Susannah found herself admitted to NYU Langone Medical Center's epilepsy unit. Despite its reputation, the only available bed was in a room meant for severe epilepsy cases requiring brain electrodes. 

This was a far cry from Susannah's initial complaint. Her condition rapidly worsened; she was confused, paranoid, and convinced her loved ones were imposters—symptoms pointing to Capgras syndrome. Surveillance in the hospital documented her erratic behavior, crucial for piecing together her lost weeks.

Her medical team was vast, including neurologists and psychiatrists, all puzzled by her symptoms. Initially suspected of postictal psychosis, the diagnosis shifted as her seizures ceased, making room for more psychiatric interpretations. The team considered bipolar disorder and schizoaffective disorder, but something didn’t add up. 

Her father, once distant, became a constant presence, sitting outside her room, determined to ensure she received the best care. Despite their divorce, her parents coordinated their visits and maintained a journal to track her progress. Her boyfriend, Stephen, provided nightly comfort, determined not to miss a day by her side.

Her condition was a rollercoaster, with moments of lucidity overshadowed by delusions. She obsessed over apples and cleanliness—perhaps a subconscious plea for healing. Over time, her psychosis receded enough to allow for a spinal tap, a step toward uncovering the mystery of her illness.

As the days turned into a week, Susannah’s disjointed reality seemed to stabilize slightly, allowing for more tests. Her family clung to hopeful words from doctors, but the journey was far from over. Through it all, her father’s steadfast presence and the unwavering support of her family and boyfriend were a beacon in the chaotic fog of her mind.

NYU Langone’s Lifeline: Susannah’s Battle with Mysterious Illness

In the second week, troubling new symptoms emerged for Susannah. Her words slurred as if a swollen tongue filled her mouth, terrifying her mother more than hallucinations or paranoia. Susannah drooled and spoke garbled sentences, even coughed when drinking liquids. Neurologists Dr. Russo and Dr. Arslan noted the slurred speech and constant chewing motions, suspecting issues in the brain stem or limbic system.

The brain stem, comprising the medulla and pons, manages life-or-death functions like blood pressure, heart rate, and facial expressions. Despite extensive testing, pinpointing the exact area causing Susannah's symptoms was complex, likened to a tangled mess of Christmas lights.

Dr. Siegel arrived with news of slightly elevated white blood cells in Susannah's spinal fluid, indicating possible infection or inflammation. Though vague, this clue was a relief amidst the uncertainty. Susannah's mother, desperate for answers, researched frightening possibilities online but found solace in the confirmation of a physical issue.

As Susannah's paranoia about work persisted, her parents kept her hospital stay secret from most, allowing only close friend Katie to visit. Vibrant and goofy, Katie tried to distract Susannah with college gossip, struggling with her delayed responses and garbled speech. Despite her physical decline, Susannah managed an awkward dance, hinting at life within her.

Visits from friends Angela and Julie brought laughter and momentary clarity to Susannah, but left her exhausted. Angela, ever the reporter, pressed for details, but Susannah could barely respond.

Despite worsening symptoms, including blue devil fits and constant chewing motions, the medical team remained puzzled. Dr. Najjar, known for solving mystery cases, suspected autoimmune encephalitis. A second spinal tap showed increased white blood cells in Susannah's spinal fluid, confirming brain inflammation.

Dr. Najjar’s clock test revealed visual neglect in Susannah, suggesting inflammation in the right hemisphere. His diagnosis: autoimmune encephalitis, confirmed by a brain biopsy revealing inflamed nerve cells. Intravenous steroids began, suppressing inflammation but causing temporary diabetes.

Though symptoms persisted, moments of clarity for visitors hinted at Susannah's recovery. Eventually, intensive treatment and a resilient spirit led to Susannah's gradual improvement, shining light through the dark labyrinth of illness.

Could Dr. Najjar's Diagnosis be the Key to Unlocking a Medical Mystery?

Later that day, Dr. Russo arrived with a list of diseases they had ruled out for Susannah, including hyperthyroidism, lymphoma, and Devic’s disease. However, hepatitis was still a suspect, although unconfirmed. 

Susannah's mother, anxious for answers, pressed Dr. Russo on his thoughts. He revealed that he and Dr. Najjar had a bet: Dr. Najjar suspected autoimmune encephalitis, while Dr. Russo leaned towards paraneoplastic syndrome, a condition often linked to underlying cancers like lung, breast, or ovarian cancer.

Meanwhile, Susannah's cerebrospinal fluid and blood samples were sent to Dr. Josep Dalmau at the University of Pennsylvania. Years earlier, Dr. Dalmau had discovered a pattern in young women with psychiatric symptoms and encephalitis who also had teratomas in their ovaries. These women had antibodies reacting against the brain, particularly the hippocampus. 

Through meticulous research involving rat brains, Dr. Dalmau identified the antibodies targeting NMDA receptors, crucial for learning, memory, and behavior. This discovery led to the identification of anti-NMDA-receptor encephalitis.

By Susannah's twenty-fifth day in the hospital, with a preliminary diagnosis in sight, her doctors assessed her cognitive skills. A speech pathologist noted her aphasia and dysarthria, impairments typical for brain injury patients. A neuropsychologist tested her attention, memory, and ability to process information, confirming significant deficits. Despite her impairments, Susannah remained aware of her struggles.

The next day, Dr. Russo confirmed the diagnosis: anti-NMDA-receptor encephalitis. This autoimmune disorder, which starts with flulike symptoms and progresses to psychiatric issues, seizures, and severe neurological deficits, was attacking Susannah's brain. Despite the frightening prognosis, her father found solace in having a name for her condition.

Treatment began with steroids, IVIG, and plasmapheresis to reduce inflammation and remove harmful antibodies. Dr. Najjar assured Susannah's parents that she could recover up to 90 percent of her former self. After 28 days in the hospital, Susannah was discharged, though recovery remained uncertain.

At home, Susannah struggled with basic tasks but was determined to regain independence. A week later, she returned to NYU for more plasma exchange treatments. Despite the discomfort and the grim environment, Susannah found solace in small moments, like singing along to a favorite song with Stephen, which reassured him that she was still there, fighting to return to her old self.

Dr. Dalmau's Breakthrough: Unraveling Anti-NMDA-Receptor Encephalitis

Susannah inserts a silver DVD marked “Cahalan, Susannah” into her player. The video begins with her, disheveled in a hospital gown, mouthing “Please.” Her eyes betray the fear within, staring into the camera as if facing death. Watching this, Susannah feels unsettled; the emotions she once felt profoundly have vanished, and the person on screen is a stranger to her.

After her hospital stay, Stephen drives Susannah to his sister Rachael’s house. Nervously holding hands, she remembers blurting out “Good turkey” from a past Easter dinner memory. Stephen's sisters and their children greet them, unprepared for Susannah's altered appearance. She struggles with motor skills, and her appearance shocks them. The children react differently; toddlers Audrey and Grace don't notice, but six-year-old Aiden is frightened.

Soon after, her brother James returns from college, warned by their father about Susannah's condition. When they reunite, he’s shocked by her appearance, and Susannah realizes how ill she still is. Despite her struggles, James spends time with Susannah, introducing her to new music and driving her to get ice cream.

One day, Susannah wanders off without informing anyone, leading to a frantic search. Her father finds her in a salon, dazed with spit pooling around her lip. Susannah and her mother later go shopping, and a saleswoman mistakenly thinks she’s slow. These interactions highlight how social situations have become challenging for her.

Despite these challenges, glimpses of Susannah's old self shine through. Watching a David Lynch movie with friends, she unexpectedly provides a detailed analysis, confirming her personality remains intact.

During a party for a friend, Susannah feels like everyone is gawking at the "sick girl." Stephen, her "Susannah whisperer," stays by her side, speaking for her when necessary. Another social test is her stepbrother’s wedding, where she tries to appear normal but feels demoralized by the way people talk to her.

Recovery involves medications, doctor visits, and evaluations. Susannah struggles with tasks like identifying letters in a text, revealing her cognitive impairments. Yet, she makes progress in verbal functioning and complex thinking. Dr. Bertisch, a psychologist, reassures her that recognizing her weaknesses is a strength.

Despite contemplating another hospital stay for treatment, moments of joy emerge. At her father’s backyard dinner, Susannah suddenly dances to Rihanna’s “Umbrella,” showing signs of life. Her father's emotional support is evident through his private journal, detailing his heartbreak and relief during her illness.

Rebuilding relationships is challenging. Her mother and Susannah have a breakthrough when her mother acknowledges her fear during Susannah's illness, allowing them to reconnect. With time, love, and support, Susannah reclaims pieces of herself, moving forward in the journey of recovery.

Can Susannah Cahalan's Remarkable Journey Through Illness and Recovery Inspire Us All?

Four months after Susannah's hospital stay, she had to move out of her Hell's Kitchen apartment. With disability payments halved, her father helped pack up her life. Familiar streets and faces greeted her, but her independence was gone. Her sanctuary, now a memory, symbolized her lost adulthood.

Faced with a new reality, Susannah focused on rebuilding. She crafted daily to-do lists, filled with simple activities to regain her self-sufficiency. Studying for the GRE and reading David Foster Wallace’s "Infinite Jest" became her lifeline. She struggled with memory, jotting down every unknown word.

Physical changes tormented Susannah; weight gain from steroids and a sedentary lifestyle left her disgusted. Her diary reflected this obsession. One day, a lawn worker's stare made her realize she was still a woman, igniting a flicker of confidence. She joined a spin class, but self-doubt shadowed her. Shame and fear of losing her identity haunted her.

Returning to work at the New York Post was daunting. A brief reunion with her editor, Paul, showed Susannah wasn't ready. Yet, she took on a small assignment, and the joy of writing again was unmatched. Her article on Facebook etiquette, though minor, felt like a triumph.

Gradually, Susannah rejoined the newsroom, embraced by her colleagues but still grappling with her changed self. Dr. Najjar's lecture on her disease at NYU's grand rounds was eye-opening. Learning about the disease's history and potential misdiagnoses fascinated her. Susannah realized how lucky she was to be diagnosed and treated in time.

Writing about her illness for the Post became her mission. Interviews with family, doctors, and colleagues helped piece together her experience. The hardest part was watching hospital videos of her madness, a stark reminder of vulnerability.

On October 4, Susannah's article ran, marking the biggest story of her career. It was her redemption, a declaration to the world that she was back.

Rebuilding Life: From Hell's Kitchen to NY Post Triumph

Survivor’s guilt is an intense and unique form of trauma, especially when dealing with a rare disease like anti-NMDA-receptor autoimmune encephalitis. Diagnosed as the only patient with this condition at NYU, Susannah initially felt isolated. But she soon realized she was part of a much larger community – one of over 50 million Americans affected by autoimmune diseases, with women constituting 75% of this group.

The work of Dr. Dalmau has been instrumental in identifying similar antibody-mediated autoimmune diseases. His research has already uncovered several types of antibodies targeting brain receptors, suggesting that many cases previously labeled as “encephalitis of unknown origin” might soon have proper names.

The response to Susannah's story was overwhelming. Her inbox filled with messages from people seeking hope and information, many sharing harrowing stories similar to hers. Survivor's guilt haunted her, especially when she spoke with families whose loved ones had not been as fortunate. Their stories were heartbreaking: misdiagnoses leading to unnecessary surgeries, lost pregnancies, and tragic deaths.

One story that profoundly impacted Susannah was that of Emily Gavigan. Her father, Bill, found Susannah's story and pushed doctors to test her for anti-NMDA-receptor encephalitis. Thanks to this, Emily received the correct diagnosis and treatment, and she recovered. Moments like these, although born from tragedy, became a source of immense gratitude for Susannah.

Post-recovery, Susannah navigated significant life changes. Moving in with her boyfriend, Stephen, earlier than planned due to financial constraints, was a testament to her progress. Yet, fears of relapse and the lingering effects of her ordeal remained. Brief lapses and vivid hallucinations were constant reminders of her vulnerability.

Susannah's journey back to NYU Langone Medical Center two years later was surreal. The familiar yet distant sights and smells brought back a flood of memories. Meeting the nurse who had cared for her, the "purple lady," they embraced, symbolizing the closure of a tumultuous chapter in her life.

Through it all, Susannah learned to cherish the connections and the resilience in the face of adversity. Her experiences, though marked by trauma and fear, have also brought unexpected gifts: renewed perspective, deeper empathy, and a commitment to helping others navigate their own battles with autoimmune diseases.

How Did Dr. Dalmau's Research and a Chance Encounter Save Emily Gavigan's Life?

In 2009, New York City was in the grips of a bedbug scare, and Susannah found herself waking up with two red dots on her arm. Convinced her apartment was infested, she called an exterminator who found no evidence but sprayed anyway. Her paranoia persisted, affecting her work and personal life.

A sudden urge to snoop through her boyfriend Stephen's belongings led to a jealous frenzy, marking the start of a series of alarming symptoms. Her left hand went numb, and her toes soon followed. Seeking help, Susannah contacted her gynecologist and later a neurologist, who found nothing abnormal but suspected mono.

Despite this diagnosis, her condition worsened. She struggled through a concert, felt disconnected, and shared her fears with friends who urged her to seek medical attention. Her father visited, and after watching "The Wrestler," she broke down, realizing her problem was deeper than an illness.

Returning to work, Susannah felt like an impostor, struggling with stories and exhaustion. A false alarm about mono led to a trip to Vermont with Stephen, where she experienced a panic attack. Back at work, she interviewed John Walsh from "America's Most Wanted" but felt overwhelmed by blinding colors and uncontrolled sensations.

Desperate, Susannah turned to Liz, a Wiccan priestess at the office, for a tarot reading. Her optimistic predictions provided fleeting comfort, but her behavior grew erratic, leading to hallucinations. Her friend Mackenzie advised her to document her symptoms, but a terrifying seizure marked the beginning of a dark descent.

Hospital visits provided no clear answers, and her family and boyfriend tried to support her through the crisis. Erratic behavior and more seizures followed. Her mother and stepfather took her to a psychiatrist, Dr. Levin, who suspected bipolar disorder and prescribed medication.

Despite her family's concern, her condition worsened. Hospital stays and tests revealed nothing abnormal until Dr. Najjar, a renowned neurologist, discovered her right hemisphere was inflamed. A brain biopsy confirmed autoimmune encephalitis, where her immune system attacked her brain.

Treatment with intravenous immunoglobulin (IVIG) offered a chance at recovery. Her condition fluctuated, with moments of clarity overshadowed by delusions. Visits from friends provided brief normalcy, but her ability to communicate deteriorated. Dr. Najjar's clock test led to the diagnosis of anti-NMDA-receptor encephalitis, a rare autoimmune disorder.

Recovery was slow and challenging. Medications, doctor visits, and evaluations became her new reality. Small triumphs, like writing an article for the New York Post, marked her progress. Despite setbacks, love and support from family and friends anchored her.

Survivor’s guilt haunted Susannah, especially as she heard stories of others who weren't as fortunate. Yet, sharing her journey brought hope to many, including Emily Gavigan, who received the correct diagnosis and treatment thanks to her story.

Two years later, she revisited NYU Langone Medical Center, reflecting on her journey. Embracing the nurse who cared for her symbolized the closure of a tumultuous chapter. Her experiences, though marked by trauma, brought renewed perspective, deeper empathy, and a commitment to helping others navigate their battles with autoimmune diseases.

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Brain on Fire: My Month of Madness

Susannah Cahalan

10 Key ideas

27 MINS

4.7 (2.6k)

Ever wondered how it feels to lose control over your own mind?

Intrigued by the mysteries of the human brain and autoimmune diseases?

Key Ideas

#1