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Brain on Fire: An Interview With Susannah Cahalan on Anti–NMDA Receptor Autoimmune Encephalitis

Brain on Fire: An Interview With Susannah Cahalan on Anti–NMDA Receptor Autoimmune Encephalitis

schizoaffective disorderSusannah Cahalan is The New York Times best-selling author of Brain on Fire: My Month of Madness. Her work has appeared in Scientific American, Psychology Today, and The New York Times. She currently works at New York Post as a book reviewer and reporter. Recently she answered some questions for Psychiatric Times via e-mail about her recently published memoir, which explores a subject of vital importance to psychiatrists. Psychiatric Times will shortly be publishing its own review of the book.

Howard Forman (HF): In Brain on Fire, your debut book that has been called by NPR “stunningly brave” and a “gift of a book from one of America’s most courageous young journalists,” you write about some harrowing experiences that occurred during 2009, when you were 24 years old. Can you describe some of the symptoms that you experienced during that time?

Susannah Cahalan (SC): The earliest symptoms were subtle. At first, I just felt “off.” I was tired and emotional. I became fixated on certain things: I believed I had bedbugs to the point that I urged an exterminator to debug my apartment even when he insisted I didn’t have an infestation. I thought my boyfriend was cheating on me and went in search of nonexistent clues of his philandering.

Then, I felt numbness on the left side of my body, which my neurologist ascribed to “mono.” But I didn’t link my odd feelings with this physical experience.

Later, my behavior became increasingly irrational. My moods fluctuated from extreme happiness to despondency in a matter of minutes. I could no longer focus on my job as a journalist. Then I began having seizures, followed by increasingly outlandish and paranoid thoughts, and then full-blown delusions and hallucinations as the seizures started to intensify. I spent the next month of my life at New York University Langone Medical Center, where I finally got a diagnosis.

HF: Many psychiatrists might have concluded that you had bipolar disorder or maybe something from the psychotic disorders chapter of the DSM after reading your experiences. Before your disorder was correctly diagnosed, did anyone make a primary psychiatric diagnosis? If so, how did you respond to it?

SC: I had self-diagnosed bipolar disorder before my hospital stay. The symptoms really matched—and honestly, I was relieved to hear my diagnosis. The first psychiatrist I saw confirmed this bipolar diagnosis and prescribed antipsychotics. Again, I was filled with relief. Not having an explanation for my increasingly bizarre behavior was worse than knowing I had a disease with lifelong implications.

Later, when in the hospital, the psychopharmacologist initially offered a “rule out” diagnosis of schizoaffective disorder. But again on paper (ignoring many of the physical manifestations, which included seizures and high blood pressure), the symptoms matched both the positive and negative symptoms of schizophrenia combined with those of a mood disorder. So it’s not surprising to me that this was an early theory.

HF: After what was a very costly workup, the test that began the path to the correct diagnosis was astonishingly old-fashioned. Can you explain how your completion of the “Draw a Clock” test alerted the neurologist to a possible underlying neurological condition?

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