Posted by: bipolarmystic | January 8, 2013

Book Review – Brain on Fire

Brain on Fire is not a book about bipolar.  Or at least, it it not directly about bipolar disorder.  The book is actually about many things, but the main story line follows a young woman’s descent into what at first appears to be severe mental illness.  The woman’s name is Susannah Cahalan and she raises questions in her memoir that will likely resonate with anyone who is mentally ill.  Susannah actually suffer(ed) from a rare type of encephalitis or inflammation of brain tissues due to an immune reaction.  This syndrome is called Anti-NMDA (N-methyl D-aspartate) receptor encephalitis and like many immune conditions, the cause is unknown.  Many young women appear to fall ill in conjunction with an ovarian teratoma or tumor of the ovary.  In other populations such as children, the cause is not known.  According to the book, thousands of patients have been diagnosed with this particular syndrome and related syndromes are being discovered.  Scientists believe that these syndromes are responsible for some cases of autism, schizophrenia and bipolar disorder.

In the course of Susannah’s memoir she describes the course of her illness beginning with wild mood swings vacillating between crying jags and euphoria.  She is initially diagnosed as bipolar.  What comes next is nothing less than harrowing.  Cahalan descends into paranoia so severe she is next suspected of being schizophrenic.  The final stage of the illness is catatonia and in some cases, death.  By the time Susannah was admitted to NYU she was already slipping into catatonia and showed significant cognitive impairment.  Cahalan’s illness progressed quickly, in a matter of eight weeks or so by my timing.  However other patients are known to present differently, especially children.  Syndromes such as Anti-NMDA Encephalitis may explain some treatment resistant forms of mental illnesses.  It can be detected by testing the spinal fluid of the patient for white blood cells.  An elevated count indicates inflammation of brain tissues.

Treatment involves cycling the blood out of the body and replacing the harmful immune laden plasma (white blood cells).  Steroids are typically used to depress the immune system and a treatment called IVIG  is sometimes used.  IVIG is an infusion of plasma from over one thousand donors.  All in all, Susannah Cahalan’s one month stay at NYU and her treatments cost around one million dollars.  Susannah got lucky: she had very good insurance and support systems in place.  Individuals labeled with a mental illness are still quite marginalized and often find themselves with a weak support system and few financial resources.  The doctors working to discover these syndromes point out that testing the spinal fluid of all mentally ill patients is cost preventative.  How many are suffering needlessly?

36_lost-month-of-madness-1Susannah Cahalan’s memoir raises intriguing questions for those suffering from mental illness.  Is it possible that many cases of bipolar, schizophrenia and other mental illnesses are caused by inflammation?  Could less severe cases be due to chronic but less severe forms of encephalitis or other inflammatory conditions?  If our mental illnesses are not caused by inflammation are we suffering from another form of brain damage?  Are the “chemical imbalances” so often cited by physicians merely the result of an insidious attack on our brains?  Do the medications we take merely remedy the symptoms of a damaged brain?  I think it is too simplistic to expect that all folks who have a mental illness may be suffering from the same underlying cause.  However, I do think it is possible that many or most folks suffering from bipolar may have related underlying causation such as inflammatory conditions.  Anti-NDMA encephalitis is a brand new diagnosis, discovered only through one doctor’s observations of unusual similarities in a group of “mentally ill” young women.  In other words, in the past people with Anti-NDMA encephalitis would have been, without question relegated to an institution under the false belief they suffered from severe mental illness.  I can’t help but wonder if we too are just waiting for the discoveries and treatments that will illuminate the biological mechanisms responsible for our suffering.

The book is an unusual memoir because Susannah can’t actually remember a great deal of the time during which her encephalitis raged.  Footage from hospital cameras, brief diary entries and recollections of her family fill in the blanks.  Instead of creating distance, Cahalan skillfully intersperses these fragments with her present day, haunted voice.  Susannah is haunted by the time she lost and although she has a biological explanation for what happened to her, she still suffers the spiritual fragility of a person whose life went straight to hell.  Many of the issues Cahalan still struggles with will resonate with the mentally ill.  She fears a relapse.  She wonders if she is still the same person, with the same capabilities.  She also feels guilt that she survived and wonders how many people like her are locked away in institutions and nursing homes.  Overall, Cahalan’s story is an excellent echo of the experiences and concerns of mentally ill individuals.

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Responses

  1. WOw does this resonate with me, having been diagnosed with schizophrenia for decades then come down with tertiary Lyme disease in the brain in 2000. I now believe that I have had Lyme disease all along, but try to get the doctors to take me seriously..! NOT! Thank you so much for posting this. I do indeed believe that brain inflammation could be a culprit behind a great many so-called “mental” illnesses.

  2. I have an autoimmune disease and I had brain swelling that put me in the hospital a couple of years ago. The most terrifying that’s happened to me to date. Thanks for the review, I’m going to pick up this book. 🙂

    • Sounds horrifying! Heck, any autoimmune disorder is scary enough even on it’s own. Hope you enjoy the book 🙂


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