Susannah Cahalan's Brain on Fire: A True Story of Madness and Recovery

Brain on Fire: A Memoir of Madness and Recovery

Introduction

Imagine waking up in a hospital bed with no memory of who you are, where you are, or what happened to you. Imagine being told that you have been suffering from a rare and potentially fatal brain disease that caused you to act like a violent and psychotic person. Imagine having to piece together your lost month of madness from medical records, interviews, and video tapes. This is what happened to Susannah Cahalan, a young journalist who wrote a best-selling memoir about her harrowing experience with anti-NMDA receptor encephalitis.

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What is Brain on Fire?

Brain on Fire: My Month of Madness is a 2012 autobiography by New York Post writer Susannah Cahalan. The book details Cahalan's struggle with a rare form of encephalitis and her recovery. It was first published on November 13, 2012, through Free Press in hardback, and was later reprinted in paperback by Simon & Schuster after the two companies merged.

Who is Susannah Cahalan?

Susannah Cahalan (born January 30, 1985) is an American journalist and author, known for writing the memoir Brain on Fire: My Month of Madness, about her hospitalization with a rare auto-immune disease, anti-NMDA receptor encephalitis. She published a second book, The Great Pretender: The Undercover Mission That Changed Our Understanding of Madness, in 2019. When she is not writing longer works, she works as a journalist for the New York Post. Cahalan's work has raised awareness for her brain disease, making it more well-known and decreasing the likelihood of misdiagnoses.

What is anti-NMDA receptor encephalitis?

Anti-NMDA receptor encephalitis is a rare autoimmune disease that causes inflammation of the brain. It affects the NMDA receptors, which are involved in memory, learning, and behavior. The disease can cause a variety of neurological and psychiatric symptoms, such as seizures, hallucinations, paranoia, aggression, confusion, memory loss, and coma. The disease can affect anyone, but it is more common in young women and children. It can be triggered by infections, tumors, or unknown factors. The disease can be treated with immunotherapy, which removes the harmful antibodies from the blood. If diagnosed and treated early, most patients can recover fully or partially. However, if left untreated or misdiagnosed, the disease can be fatal or cause permanent brain damage.

The Onset of Symptoms

Cahalan's disease manifested in 2009 when she was just 24 years old. It began with sensory issues, which she later described in her article, \"My Mysterious Lost Month of Madness\" as experiencing the world brighter, louder, more painful. She also began experiencing numbness in the whole left side of her body, and paranoid hallucinations of bed bug bites. Concerned by the numbness, Cahalan sought out a neurologist who ran multiple inconclusive tests including two normal MRIs. Susannah began experiencing severe insomnia and continued behavioral abnormalities. One night at her boyfriend's apartment, she had a grand mal seizure and woke up in St. Luke's Hospital.

Sensory disturbances and numbness

The first signs of Cahalan's disease were subtle and easily dismissed. She noticed that her sense of smell was heightened, and that she could smell things that others couldn't. She also felt that her hearing was more sensitive, and that noises were louder and more annoying. She felt a tingling sensation in her left hand, which soon spread to her whole arm and leg. She thought it was due to stress or lack of sleep, but it persisted and worsened. She also had trouble focusing and remembering things, and felt detached from reality.

Paranoid hallucinations and insomnia

As Cahalan's disease progressed, she started to have paranoid thoughts and hallucinations. She became convinced that she had bed bugs in her apartment, and spent hours searching for them. She even hired an exterminator, who found no evidence of any infestation. She also became obsessed with the color red, and saw it everywhere. She thought it was a sign of danger or evil. She also had vivid nightmares and flashbacks of traumatic events from her past. She could not sleep at night, and felt restless and anxious.

Seizures and hospitalization

The turning point of Cahalan's disease was when she had a violent seizure in front of her boyfriend. He called 911, and she was rushed to the hospital. There, she had another seizure, which lasted for 15 minutes. She was put on anti-seizure medication, but it did not stop her symptoms. She became more agitated, aggressive, and delusional. She thought that her father had kidnapped her, that her boyfriend was cheating on her, and that the nurses were trying to kill her. She also had episodes of catatonia, where she would stare blankly and not respond to anything. She was transferred to the epilepsy ward, where she was monitored by cameras and electrodes.

The Misdiagnoses and the Mystery

Cahalan's condition baffled the doctors who treated her. They ran numerous tests, but could not find the cause of her symptoms. They gave her various diagnoses, but none of them fit or explained her situation. They also prescribed her different medications, but none of them helped or worsened her condition. They were running out of time and options, as Cahalan's brain was deteriorating rapidly. Her family was desperate for answers, but they were met with frustration and uncertainty.

Bipolar disorder and schizoaffective disorder

The first diagnosis that Cahalan received was bipolar disorder, also known as manic-depressive disorder. This is a mental illness that causes mood swings between highs (mania) and lows (depression). The doctors thought that Cahalan's erratic behavior, paranoia, hallucinations, and insomnia were signs of mania, while her numbness, detachment, and memory loss were signs of depression. They prescribed her mood stabilizers and antipsychotics, but they did not work.

The second diagnosis that Cahalan received was schizoaffective disorder, which is a combination of schizophrenia and bipolar disorder. This is a mental illness that causes psychotic symptoms (such as delusions and hallucinations) along with mood symptoms (such as mania or depression). The doctors thought that Cahalan's symptoms matched this disorder better than bipolar disorder alone. They increased the dose of antipsychotics, but they did not work either.

Partying too much and alcohol withdrawal

The third diagnosis that Cahalan received was partying too much and alcohol withdrawal. This is not a medical diagnosis, but a judgmental assumption by some of the doctors who treated her. They thought that Cahalan's symptoms were caused by excessive drinking and drug use, which damaged her brain and nervous system. They also thought that Cahalan was going through withdrawal symptoms from stopping alcohol abruptly. They dismissed her condition as self-inflicted and irresponsible.

The frustration of Cahalan and her family

The misdiagnoses and the mystery of Cahalan's disease took a toll on her and her family. Cahalan felt scared, angry, confused, and hopeless. She did not recognize herself or anyone around her. She did not understand what was happening to her or why. She felt like she was losing her mind and her identity.

Here is the continuation of the article with HTML formatting: The Breakthrough and the Treatment

Cahalan's condition was finally solved by Dr. Souhel Najjar, a neurologist who specialized in autoimmune diseases of the brain. He performed a simple test that revealed the true nature of Cahalan's disease. He also prescribed her the appropriate treatment that saved her life and restored her brain function. He became Cahalan's hero and mentor, and helped her understand and cope with her disease.

Dr. Souhel Najjar and the clock test

Dr. Souhel Najjar was consulted by Cahalan's doctors after they exhausted all other possibilities. He reviewed Cahalan's case and noticed some clues that pointed to an autoimmune origin of her symptoms. He suspected that Cahalan had anti-NMDA receptor encephalitis, a newly discovered disease that was first described in 2007 by Dr. Josep Dalmau. To confirm his diagnosis, he asked Cahalan to draw a clock on a piece of paper. Cahalan drew a clock, but she put all the numbers on the right side of the circle, leaving the left side blank. This showed that Cahalan had hemispatial neglect, a condition where one ignores or is unaware of one side of space. This also showed that Cahalan's right hemisphere, which controls the left side of space and body, was inflamed and damaged by her disease.

The diagnosis of anti-NMDA receptor encephalitis

Dr. Najjar explained to Cahalan and her family that she had anti-NMDA receptor encephalitis, a rare autoimmune disease that causes the body to produce antibodies that attack the NMDA receptors in the brain. These receptors are crucial for memory, learning, and behavior. When they are impaired, they cause neurological and psychiatric symptoms similar to those of schizophrenia or bipolar disorder. The disease can also affect other parts of the brain, causing seizures, movement disorders, autonomic instability, and coma. The disease can be triggered by infections, tumors, or unknown factors.

Dr. Najjar also explained that Cahalan had a tumor in her ovary, called a teratoma, that contained brain tissue. This tumor was likely the source of her antibodies, as it exposed her immune system to NMDA receptors that were normally hidden in the brain. The tumor was removed by surgery, which helped reduce the antibody production.

The immunotherapy and the recovery process

Dr. Najjar prescribed Cahalan immunotherapy, which is a treatment that modulates or suppresses the immune system to stop it from attacking the brain. Cahalan received different types of immunotherapy, such as steroids, IV immunoglobulin (IVIg), plasma exchange (PE), rituximab, and cyclophosphamide. These treatments helped remove the antibodies from her blood and prevent them from reaching her brain.

Cahalan's recovery was gradual and challenging. She had to relearn how to walk, talk, read, write, and think. She had to deal with physical and emotional changes caused by her disease and treatment. She had to cope with memory loss and gaps in her life story. She had to rebuild her relationships with her family, friends, boyfriend, and colleagues.

The Aftermath and the Awareness

Cahalan's disease changed her life forever. She became a different person after surviving her ordeal. She also became a voice for others who suffered from the same disease or similar conditions. She wrote a memoir about her experience, which became a best-seller and a movie adaptation. She also became an advocate and an educator for anti-NMDA receptor encephalitis.

Cahalan's memory gaps and video tapes

Cahalan had no recollection of what happened to her during her month of madness. She only remembered fragments of events before and after her hospitalization. She relied on medical records, interviews with doctors and nurses, and testimonies from her family and friends to reconstruct her lost month.

She also watched video tapes of herself in the hospital, which showed her acting like a different person. She saw herself being violent, paranoid, catatonic, dyskinetic, and mute. She felt shocked, embarrassed, and scared by what she saw.

Cahalan's research and writing of the memoir

Cahalan decided to write a memoir about her disease and recovery, as a way of understanding and processing what happened to her. She also wanted to share her story with the world, and raise awareness about anti-NMDA receptor encephalitis. She used her skills as a journalist to research and write her book, which she titled Brain on Fire: My Month of Madness. She published it in 2012, and it became a New York Times best-seller. It was also translated into several languages and adapted into a movie starring Chloë Grace Moretz.

Cahalan's advocacy and education for the disease

Cahalan became an advocate and an educator for anti-NMDA receptor encephalitis. She gave lectures, interviews, and talks to various audiences, such as doctors, patients, students, and journalists. She also supported and collaborated with organizations such as the Autoimmune Encephalitis Alliance, the Encephalitis Society, and the Anti-NMDA Receptor Encephalitis Foundation. She helped spread the word about the disease, its symptoms, its diagnosis, its treatment, and its outcome. She also helped inspire hope and courage for those who suffered from the disease or similar conditions.

Conclusion

Brain on Fire is a memoir of madness and recovery that tells the story of Susannah Cahalan, a young journalist who survived a rare and devastating brain disease. Cahalan's disease, anti-NMDA receptor encephalitis, caused her to experience neurological and psychiatric symptoms that mimicked schizophrenia or bipolar disorder. She was misdiagnosed and mistreated by several doctors, until she met Dr. Souhel Najjar, who solved her mystery and saved her life. Cahalan underwent immunotherapy and tumor removal, which helped her recover from her disease. She wrote a book about her experience, which became a best-seller and a movie adaptation. She also became an advocate and an educator for anti-NMDA receptor encephalitis.

FAQs

Here are some frequently asked questions about Brain on Fire and anti-NMDA receptor encephalitis:

Q: How common is anti-NMDA receptor encephalitis?

A: Anti-NMDA receptor encephalitis is a rare disease, but it is not as rare as previously thought. It is estimated that there are about 1-2 cases per million people per year worldwide. However, the exact incidence and prevalence of the disease are unknown, as many cases may be undiagnosed or misdiagnosed.

Q: Who can get anti-NMDA receptor encephalitis?

A: Anyone can get anti-NMDA receptor encephalitis, regardless of age, gender, ethnicity, or health status. However, the disease is more common in young women and children. About 50% of female patients have an ovarian teratoma that triggers the disease. About 40% of patients have no identifiable trigger.

Q: How is anti-NMDA receptor encephalitis diagnosed?

A: Anti-NMDA receptor encephalitis is diagnosed by detecting NMDA receptor antibodies in the cerebrospinal fluid (CSF) or blood of the patient. The CSF test is more sensitive and specific than the blood test. The diagnosis can be confirmed by finding a tumor that contains NMDA receptors in the patient.

Q: How is anti-NMDA receptor encephalitis treated?

A: Anti-NMDA receptor encephalitis is treated with immunotherapy and tumor removal (when present). Immunotherapy consists of medications that modulate or suppress the immune system to stop it from attacking the brain. These medications include steroids, IV immunoglobulin (IVIg), plasma exchange (PE), rituximab, and cyclophosphamide. Tumor removal consists of surgery to remove the tumor that triggers the disease.

Q: What is the prognosis of anti-NMDA receptor encephalitis?

A: The prognosis of anti-NMDA receptor encephalitis depends on several factors, such as the severity of symptoms, the duration of illness, the response to treatment, and the presence of complications. If diagnosed and treated early, most patients can recover fully or partially from the disease. However, if left untreated or misdiagnosed, the disease can be fatal or cause permanent brain damage. 71b2f0854b