Brain on Fire
Susannah Cahalan

Brain on Fire

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Though it’s notoriously obsessed with what’s new, the Post is nearly as old as the nation itself. Established by Alexander Hamilton in 1801, it is the longest continually run newspaper in the country.

Finally, he jumped into action—though he’d never seen a seizure before, he knew what to do. He laid me down, moving my head to the side so that I wouldn’t choke,

The healthy brain is a symphony of 100 billion neurons, the actions of each individual brain cell harmonizing into a whole that enables thoughts, movements, memories, or even just a sneeze. But it takes only one dissonant instrument to mar the cohesion of a symphony. When neurons begin to play nonstop, out of tune, and all at once because of disease, trauma, tumor, lack of sleep, or even alcohol withdrawal, the cacophonous result can be a seizure.

The type and severity of a seizure depend on where the neural dysfunction is focused in the brain: if it is in the visual cortex, the person experiences optical distortions, such as visual hallucinations; if it is in the motor areas of the frontal cortex, the person exhibits strange, zombie-like movements; and so forth.

Another site listed at length the famous people who were suspected to suffer from bipolar disorder: Jim Carrey, Winston Churchill, Mark Twain, Vivien Leigh, Ludwig van Beethoven, Tim Burton. The list kept going and going. I was in good company. “No great mind has ever existed without a touch of madness,” Aristotle said.

“Her EEG was completely normal,” Bailey protested, looking through my file. “MRI normal, exam normal, blood work normal. It’s all normal.”

One study revealed that Capgras delusions might emerge from structural and circuitry complications in the brain, such as when the parts of the brain responsible for our interpretations of what we see (“hey, that man with dark hair about 5'10", 190 pounds looks like my dad”) don’t match up with our emotional understanding (“that’s my dad, he raised me”). It’s a little like déjà vu, when we feel a strong sense of intimacy and familiarity but it’s not connected to anything we actually have experienced before. When these mismatches occur, the brain tries to make sense of the emotional incongruity by creating an elaborate, paranoid fantasy (“that looks like my dad, but I don’t feel like he’s my dad, so he must be an imposter”)

My short-term memory had been obliterated, a problem usually rooted in the hippocampus, which is like a way station for new memories. The hippocampus briefly “stores” the patterns of neurons that make up a memory before passing them along to the parts of the brain responsible for preserving them long term. Memories are maintained by the areas of the brain responsible for the initial perception: a visual memory is saved by the visual cortex in the occipital lobe, an auditory memory by the auditory cortex of the temporal lobe, and so forth.

After that fateful accident, H.M. experienced clusters of seizures that increased in intensity until, by his twenty-seventh birthday in 1953, his doctor had decided to remove the bit of brain tissue that seemed to be the focus of his seizures: the hippocampus. When H.M. recovered from the surgery, the seizures were gone, but too went his ability to make memories. The doctors noticed that his old memories were intact up to two years before the surgery, but he could no longer retain new ones. Any new information stayed with him for a mere twenty seconds before it vanished. H.M. lived into his eighties, but always thought of himself as a young man in his mid-twenties, the age he was before his surgery.

memory: declarative (places, names, object, facts, and events) and procedural (those learned as a habit, like tying shoes or riding a bike). Although H.M. could not make any new declarative memories, he retained his procedural memory, which he could unconsciously strengthen with practice.

At the top of the spinal cord and at the underside of the brain is the brain stem, one of the more primitive parts of the brain, which helps oversee basic life-or-death functions. A thumb-sized cluster of cells in the brain stem called the medulla manages blood pressure, heart rate, and breathing.

Antibodies are created by the body’s immune system to counteract an unwanted, external element, such as when a pathogen of some sort—a virus, bacterium, fungus, or other foreign substance—enters the body. This sets off a series of reactions beginning with the body’s basic alarm system, the innate response, which is a one-size-fits-all process designed to get rid of unwanted visitors quickly. If the innate system can’t eradicate the pathogen, the next defense stage is the “adaptive response,” which tailors itself to the specific intruder, using an arsenal of white blood cells and antibodies. This takes much longer to mobilize than the innate response, ten days versus the innate system’s minutes or hours. Usually the collateral damage of these internal battles results in familiar flulike symptoms such as headache, fever, muscle ache, nausea, and enlarged lymph nodes.

Encephalitis, one neurologist would eventually explain, colloquially meant “bad brain,” or the inflammation of the brain due to a host of causes.

Dr. Najjar, beaming, grabbed the paper, showed it to my parents, and explained what this meant. They gasped with a combination of terror and hope. This was finally the clue that everyone was searching for. It didn’t involve fancy machinery or invasive tests; it required only paper and pen. It had given Dr. Najjar concrete evidence that the right hemisphere of my brain was inflamed.

Because the brain works contralaterally, meaning that the right hemisphere is responsible for the left field of vision and the left hemisphere is responsible for the right field of vision, my clock drawing, which had numbers drawn on only the right side, showed that the right hemisphere—responsible for seeing the left side of that clock—was compromised, to say the least.

“Her brain is on fire,” he repeated. They nodded, eyes wide. “Her brain is under attack by her own body.”

These receptors receive instructions from chemicals called neurotransmitters. All neurotransmitters carry only one of two messages: they can either “excite” a cell, encouraging it to fire an electrical impulse, or “inhibit” a cell, which hinders it from firing. These simple conversations between neurons are at the root of everything we do, from sipping a glass of wine to writing a newspaper lead.

The frontal lobes are largely responsible for complex executive functions, prompting experts to refer to it as “the CEO.” It only fully develops into our twenties, which tempts many experts to hypothesize that the frontal lobe’s maturation is what distinguishes children from adults. But one thing is certain: the frontal lobes make us creative, human, and simply less boring.

The brain is radically resilient; it can create new neurons and make new connections through cortical remapping, a process called neurogenesis. Our minds have the incredible capacity to both alter the strength of connections among neurons, essentially rewiring them, and create entirely new pathways. (It makes a computer, which cannot create new hardware when its system crashes, seem fixed and helpless.) This amazing malleability is called neuroplasticity.

When the brain is working to remember something, similar patterns of neurons fire as they did during the perception of the original event. These networks are linked, and each time we revisit them, they become stronger and more associated. But they need the proper retrieval cues—words, smells, images—for them to be brought back as memories.

Studies seem to point to all autoimmune diseases in general as being about two-thirds environmental, one-third genetic.

It had cost $1 million to treat me, a number that boggles the mind. Luckily, at the time I was a full-time employee at the Post, and my insurance covered most of the exorbitant price tag.

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.

In the spring of 2009, I was the 217th person ever to be diagnosed with anti-NMDA-receptor autoimmune encephalitis. Just a year later, that figure had doubled. Now the number is in the thousands. Yet Dr. Bailey, considered one of the best neurologists in the country, had never heard of it. When we live in a time when the rate of misdiagnoses in the United States has shown no improvement since the 1930s, the lesson here is that it’s important to always get a second opinion.

The girl in the video is a reminder about how fragile our hold on sanity and health is and how much we are at the utter whim of our Brutus bodies, which will inevitably, one day, turn on us for good. I am a prisoner, as we all are. And with that realization comes an aching sense of vulnerability.

But, ready or not, on Sunday, October 4, the biggest story of my career ran in the Post under the headline: “My Mysterious Lost Month of Madness: I was a happy 24-year-old suddenly stricken by paranoia and seizures. Was I going crazy?”

Survivor’s guilt as a kind of posttraumatic stress disorder (PTSD) is common—a study indicates that 20 to 30 percent of survivors develop it—and it has been documented in those with cancer and AIDS, as well as war veterans.

Overnight, every news outlet there covered the story of how a Syrian boy had become a miracle doctor in America.

Apparently relapses happen in about 20 percent of cases. Unlike cancer, there is no remission date. After a full recovery, you could relapse tomorrow as easily as five years from now. Those who did not have a teratoma, like me, have a higher rate of relapse, for reasons unknown, but at least those who do relapse tend to have the same rate of recovery as they did after the initial onset of the disease.

The amygdala, an almond-shaped structure situated atop the hippocampus, located at the sides of the head above the ears in the temporal lobes, is a structure intimately involved in emotion and memory, helping to choose which memories should be kept and which should be discarded, based on which events have traumatized or excited us. The hippocampus tags the memory with context (the hospital room and the purple lady, for example), and the amygdala provides the emotion (fear, excitement, and pain).

When the amygdala stamps the experience with high emotional value, it’s more likely to be preserved, a process called encoding, and eventually made into a memory, called consolidation. The hippocampus and amygdala help encode and consolidate the experience, or make it into a memory that can be retrieved later. When any part of this elaborate system is compromised, the memory may not be formed.

The team uncovered another step in the memory process, called reconsolidation: when a memory is recalled, it’s essentially remade, allowing new (and sometimes wrong) information to filter in. This is normally useful because we need to be able to update our past experiences to reflect present information, but it sometimes creates devious inaccuracies.

But with every memory I recapture, I know there are hundreds, thousands even, that I cannot conjure up. No matter how many doctors I speak with, no matter how many interviews I conduct or how many notebooks I scavenge, there will be many experiences, bits of my life that have vanished.

“The existence of forgetting has never been proved: we only know that some things do not come to our mind when we want them to.”

When I was diagnosed, it was believed that 90 percent of cases went undiagnosed. Now many doctors know to test for it, and if it is found early and treated aggressively, 81 percent of patients recover fully, a staggeringly high figure considering how utterly devastating the disease appears at its height.