Brain on Fire –> Must Read!

Susannah Cahalen was a 24 year old reporter for the New York Post when she was suddenly and mysteriously struck down with what appeared to be schizophrenia. It began somewhat nebulously with an obsession with bedbugs. It was 2009 and at the time, New York City was “awash in bedbug scares.” An exterminator told Susannah her apartment was bug free but she was so convinced of infestation that she shelled out an exorbitant amount to fumigate. She later learned that bug obsession can be a sign of psychosis called parasitosis or Ekbom syndrome.

As her illness progressed, she suffered seizures, paranoia, numbness and tingling on the left side of her body, wild mood swings, dizziness, nausea, flu-like symptoms, insomnia, loss of appetite, delusional thinking, hallucinations, and catatonia. She had out-of-body experiences where she could see herself as if floating above her own body. She was convinced that her dad was an imposter, even believed at one point that he had murdered his wife. For a month, she was hospitalized and completely out of her head. She has practically no memory of this time. A whole month of her life gone. Just like that.

A multitude of doctors struggled to diagnose her. They suspected alcohol withdrawal, mononucleosis, bipolar disorder, schizophrenia, postictal psychosis (psychosis following seizure), schizoaffective disorder. Then, a million dollars later, finally, FINALLY, the amazing Dr. Souhel Najjar, a neurologist, neuro-pathologist, and epileptologist discovered the true nature of her illness. Her blood work and spinal fluid came back positive for rare antibodies called anti-N-methyl-D-aspartic acid receptor. Her brain was inflamed; she had anti-NMDAR encephalitis. The NMDA receptors in the frontal lobe, responsible for cognitive reasoning, and the limbic system, or the emotional center of the brain, were under assault by her immune system. Her body was attacking her brain.

Brain on Fire: My Month of Madness is Susannah’s memoir about her terrifying experience. And I couldn’t put the book down. Susannah was the 217th person worldwide to be diagnosed with anti-NMDA receptor encephalitis since 2007 when a neuro-oncologist, Dr. Josep Dalmau designed two tests that swiftly and accurately diagnose the disease.

“Though researchers are far from fully understanding how NMDA receptors (and their corresponding neurons) affect and alter behavior, its clear that when they are compromised, the outcome can be disastrous, even deadly. Still a few experiments have offered up clues as to their importance. Decrease NMDA receptors by, say, 40 percent and you get psychosis; decrease by 70 percent and you have catatonia.”

To me, one of the most profound things about this memoir is how concretely it demonstrates that what we define as mental illness is, in fact, a symptom of a physical malfunction in the brain. Mental illness is NOT the illness. It’s a symptom of the illness which is in fact biological and possibly reversible. And that gives us all a tremendous amount of hope for future treatment. Susannah was cured. CURED. Once treated, 75% of patients with anti-NMDA receptor encephalitis fully recover, 20% remain permanently disabled, and 4% die. As Susannah says in her book:

“It just begs the question. If it took so long for one of the best hospitals to get to this step, how many people were going untreated, diagnosed with a mental illness, or condemned to a life in a nursing home or psychiatric ward?”

As I read, I thought of K, who I met in NAMI’s Family-to-Family class. Like me, K was attending the class because her sister was diagnosed with mental illness. Her sister had a breakdown in college and had been diagnosed with schizophrenia. Given that the median age for anti-NMDA receptor encephalitis is 20, the memoir made me question K’s sister’s diagnosis. I also thought about Jerri’s neighbor, C, also diagnosed with schizophrenia who is constantly in and out of the hospital. She, too, is obsessed with bedbugs and plagued with paranoia and delusional thinking. C was also first diagnosed while in college.

Many of the patients being diagnosed with anti-NMDA receptor encephalitis are children. The disease presents differently in kids and they are often misdiagnosed with autism. Researchers believe a percentage, albeit a small one, of people who have been diagnosed with schizophrenia or autism, are actually suffering from an autoimmune disease. Our understanding of these two brain disorders will likely gain the most from NMDA receptor research and in fact, just this week, I ran across this news item Hypertension Drug Works for Schizophrenia that describes a study where 20 patients with schizophrenia who took sodium nitroprusside, an antihypertensive medication, saw most of their symptoms diminish within 4 hours. There is pre-clinical evidence that suggests sodium nitroprusside modulates the activity of N-methyl-D-aspartate (NMDA) glutamate receptors.

The other thing that struck me as I read Brain on Fire is the huge role family played in Susannah’s diagnosis and recovery. Her parents did not label her “crazy” and refuse to have anything else to do with her. They stuck by her all the way, showing up at the hospital everyday, demanding that the healthcare system figure out her illness. Without their support, Susannah would likely have died or been institutionalized. Family members, you have no idea how important your support may be to recovery. Stick with it. This is God’s work we do.

You can read more about Susannah’s experience in her New York Post article, My Mysterious Lost Month of Madness and of course, Brain on Fire. I can’t promote this memoir enough as the information contained within could very well save someone’s life. Please feel free to share this post or spread the word about this memoir through all your favorite social media channels.

[Image source: Simon & Schuster]