Brain on Fire

1. A young reporter's descent into madness: The mysterious onset of anti-NMDA receptor encephalitis

Maybe it all began with a bug bite, from a bedbug that didn't exist.

Subtle onset of symptoms. Susannah Cahalan, a 24-year-old reporter for the New York Post, began experiencing strange symptoms in early 2009. What started as perceived bedbug bites and numbness in her left hand quickly escalated into more severe issues:

• Paranoia and anxiety
• Difficulty concentrating and memory problems
• Seizures and erratic behavior
• Hallucinations and delusions

As her condition worsened, Susannah's personality changed dramatically, affecting her work and relationships. Her descent into madness was rapid and bewildering, leaving her family and doctors scrambling for answers.

2. The struggle for diagnosis: Navigating the complex world of neurology and psychiatry

I'm the one who is lucky. I did not slip through a system that is designed to miss cases just like my own—cases that require time and patience and individualized attention.

Misdiagnoses and frustration. Susannah's journey to a correct diagnosis was fraught with challenges and setbacks:

• Initial misdiagnosis of alcohol withdrawal and stress
• Considerations of bipolar disorder and schizophrenia
• Multiple hospital visits and inconclusive tests
• The critical importance of a brain biopsy in revealing inflammation

The case highlighted the gaps between neurology and psychiatry, as well as the limitations of the medical system in dealing with complex, rare conditions. It took the persistence of her family and the expertise of Dr. Souhel Najjar to finally uncover the true cause of her illness.

3. Inside the mind of madness: Hallucinations, paranoia, and the loss of self

I am a prisoner, as we all are. And with that realization comes an aching sense of vulnerability.

Vivid experiences of psychosis. Susannah's account provides a rare glimpse into the mind of someone experiencing severe psychosis:

• Visual and auditory hallucinations, including believing she was on the news
• Paranoid delusions about loved ones and medical staff
• Loss of basic functions, including speech and movement
• Dramatic personality changes and loss of self-awareness

These experiences, while terrifying, offer valuable insights into the nature of consciousness and the fragility of our sense of reality. Susannah's journey through madness and back again highlights the profound impact that brain chemistry has on our perception and identity.

4. The power of persistence: How family and medical professionals fought for answers

Dr. Najjar estimates that 90 percent of people suffering from this disease during the time when I was treated in 2009 went undiagnosed.

Unwavering support and advocacy. Susannah's recovery was made possible by the tireless efforts of those around her:

• Her parents set aside their differences to advocate for her care
• Her boyfriend, Stephen, visited her daily and provided emotional support
• Dr. Najjar's persistence in pursuing unconventional diagnoses and treatments
• The medical team's willingness to collaborate across specialties

This support system was crucial in navigating the complex medical landscape and ensuring that Susannah received the care she needed. Their persistence serves as a powerful reminder of the importance of advocacy in healthcare.

5. Brain on fire: Understanding anti-NMDA receptor encephalitis and its impact

Anti-NMDA-receptor autoimmune encephalitis can certainly appear malevolent. Afflicted sons and daughters suddenly became possessed, demonic, like creatures out of our most appalling nightmares.

A rare autoimmune disorder. Anti-NMDA receptor encephalitis is a recently discovered condition where the body's immune system attacks the brain:

• Caused by antibodies targeting NMDA receptors in the brain
• Affects memory, behavior, cognition, and autonomic functions
• Often misdiagnosed as psychiatric disorders or other neurological conditions
• More common in young women, sometimes associated with ovarian teratomas

The disease's dramatic symptoms and potential for recovery make it a fascinating subject for medical research and highlight the complex interplay between the immune system and the brain.

6. The road to recovery: Treatments, setbacks, and the long journey back to normalcy

I talk fast again, can do my job with ease, feel comfortable in my own skin, and recognize myself in pictures. However, when I look at photographs taken of me "post," versus pictures of me "pre," there is something altered, something lost—or gained, I can't tell—when I look into my eyes.

Gradual return to self. Susannah's recovery was a long and challenging process:

• Intensive treatments including steroids, plasmapheresis, and IVIG
• Cognitive and physical rehabilitation
• Gradual reduction of medications
• Emotional challenges of reconnecting with her former self and others

The journey back to normalcy was marked by small victories and ongoing challenges, illustrating the resilience of the human brain and spirit. Susannah's experience underscores the importance of comprehensive, long-term care in treating complex neurological conditions.

7. A new perspective on mental health: Bridging the gap between neurology and psychiatry

Dr. Najjar, for one, is taking the link between autoimmune diseases and mental illnesses one step further: through his cutting-edge research, he posits that some forms of schizophrenia, bipolar disorder, obsessive-compulsive disorder, and depression are actually caused by inflammatory conditions in the brain.

Paradigm shift in understanding mental illness. Susannah's case has far-reaching implications for the field of mental health:

• Challenges the traditional divide between neurology and psychiatry
• Suggests that some psychiatric conditions may have autoimmune origins
• Highlights the need for more comprehensive testing in mental health diagnoses
• Emphasizes the importance of considering physical causes for mental symptoms

This new perspective could lead to more effective treatments for a range of mental health conditions and reduce the stigma associated with psychiatric disorders.

8. Life after illness: Survivor's guilt, lasting changes, and a renewed sense of purpose

Sometimes, just when we need them, life wraps metaphors up in little bows for us. When you think all is lost, the things you need the most return unexpectedly.

Transformative experience. Susannah's journey through illness and recovery profoundly changed her life:

• Dealing with survivor's guilt and the knowledge that others weren't as fortunate
• Coping with lasting changes to her personality and cognitive functions
• Finding new purpose in advocacy and raising awareness about the disease
• Developing a deeper appreciation for life and relationships

Her experience serves as a powerful reminder of the fragility of health and the resilience of the human spirit. It also underscores the importance of continued research and awareness about rare neurological conditions.

Last updated: January 22, 2025