‘Brain on fire’: the saga of a woman with a rare disease for the right diagnosis

A little over a decade ago, 24-year-old American journalist Susannah Cahalan suddenly fell into an inexplicable state of delirium and paranoia.

She heard voices and became hallucinated. Months of fear and confusion would follow, with a strange, unknown disease taking over her world and twisting everything she knew.

The disease would prevent her from talking and walking. And, in a few weeks, she would lose her sense of self, her body and her mind.

Cahalan was terrified and her doctors baffled. Until, after several seizures and a series of misdiagnoses, she was hospitalized. This happened in New York, in the United States.

Next, learn about its history.

“Times Square is one of the most unpleasant places in New York City, filled with billboards, stores and chain restaurants. And to get to The New York Post office, I had to walk through the hell of Times Square.

As I walked through the crowd that morning, among the brightly lit billboards, something felt very different, as if I were hypersensitive to sounds, sight, smell. Everything was amplified.

I felt like the bright lights were making me physically sick, I felt pressure in my skull. The lights made me nauseous and I wanted to get out of there as quickly as possible.

I didn’t know it at the time, but there is something called photophobia, which is an acute sensitivity to light, which can occur before a seizure.

When I got to the paper, my emotions were running high. I was a very fast talker and had a lot of grandiose ideas about my career. I even took my editor aside and told him all my dreams, which was very disturbing out of context. He didn’t understand what was going on.

I’m an enthusiastic person. It wasn’t necessarily a complete departure from my personality, but rather an amplification.

Then I had a strange feeling in the hallway, which was full of framed front pages. The New York Post is a tabloid known for its outrageous headlines, and they were leering at me. I felt that the walls were breathing and that the ceiling was suddenly in the clouds.

But not everything was euphoria. I hid under the table because I was crying hysterically.

I walked down that corridor in fits and starts and a friend pulled me out of the newsroom. She realized something was up.

The month before, I had been very depressed. I had difficulty getting out of bed and a complete mental fog. I had no motivation. I was exhausted.”

Days later, Susannah Cahalan started to feel something more physical and really alarming.

“I had a numb feeling on my left side and in my fingers and toes. It scared me enough to go to a neurologist and get some tests done. They all came back negative.

Stephen, my boyfriend, woke up one day to the sound of my teeth grinding very loudly. He called me by name and my arms flew out in front of me very rigid, almost like Frankenstein or a walking mummy.

At that moment, I started shaking with jerky movements. It was a whole body convulsion.

He had never seen anything like this before, but he put me on my back, which is exactly what you should do if someone has a drowning fit, and called the emergency number.”

An ambulance took her to the hospital and Cahalan came to in a room with other patients. And she saw the chaos around her.

“That environment amplified my psychosis and paranoia. I woke up with the certainty that the doctors had misdiagnosed me, that I was dying, and I started screaming at them. It was a total personality change after that seizure.

In many senses, the first upheaval represents a break. There is a before and an after.

I stopped sleeping. I paced around the house instead of sleeping. There was a time when I woke my mother up in the middle of the night because she was standing next to the bed, looking at her.

It got to the point where she had to sleep with me to make sure I didn’t get hurt. I also started to have a new symptom of licking my lips almost all the time.

And while all this was going on, I kept having seizures.

As soon as I got back to the doctor he told me I had a virus and asked me a series of questions. One of them was how much I drank a day. I replied that I had a glass or two of wine in the evening.

But the doctor wrote down a bottle or two of wine a night, which completely changed the way he looked at me and saw what was happening to me – and, later, what other doctors would see when they looked at the same medical history.”

Cahalan was seized by paranoia until, one day, she had an electroencephalogram.

“The technician responsible for the electroencephalography said that the exam didn’t show anything and that she always saw this happen with people from Wall Street, who arrived stressed and nothing happened. “It’s all in your head”, she guaranteed.

When I left there, I went back to the waiting room of the office. My mother and stepfather were sitting waiting for me.

I remember looking around the room and believing that my mother and stepfather had hired all the people around and that they were all actors – even the technician who did the study for me – who were trying to teach me a lesson.

This artificiality, this idea that much of the world was scenery, was a delusion that I had very often.

I felt superior because I believed that I had figured them out, that I was smarter than all of them and I knew what was going on. Psychosis can turn into a deification of yourself, a feeling that you are God and have superpowers. I felt like I had complete control.”

Cahalan’s mother followed very closely what happened to try to help her. She tried to be with her daughter all the time, but one day she decided to let her spend the night at her father’s house.

“At that time, my father and I weren’t as close as we are today and I didn’t know his home well. It was a whole new element that unsettled me and amplified my psychosis.

My dad’s house has a room full of Civil War memorabilia. My perception at that time was that it was a very scary environment.

There’s a big picture of a train. I remember the smoke coming out of the frame and seeming to move, like an optical illusion.

At some point, I looked at the bust of Abraham Lincoln that my father was guarding and I was sure that he was following me with his eyes. Then I started hearing sounds of my father hurting my stepmother. I heard her scream, I heard her struggling.

Nothing was happening, everything was in my head. But I heard it very clearly. I ran up three floors and hid in the bathroom.

My dad heard me scream and tried to go into the bathroom, but I wouldn’t let him. I seriously thought about jumping out the window to escape him, since I was sure I would be the next victim.

Until a Buddha statue in the bathroom smiled at me. For some reason, that calmed me down and I didn’t jump. But my father took hours to convince me to leave. I didn’t want any contact with him, I was terrified.

When he got me out of the bathroom, he called my mom and said, ‘We need to do something, this is getting out of hand.'”

They took Cahalan back to the hospital and she had a seizure as soon as she arrived. She was taken directly to the epilepsy room, where she spent a month. The “month of investigation of madness” began there.

“We had immunologists doing different tests, rheumatologists, people coming to see if it was cancer, if it was Lyme disease, some autoimmune disease…

They did lumbar punctures, MRIs, CT scans, PET scans – and everything came back negative.

For the first two weeks, I was very, very psychotic. My delirium about my father and stepmother continued in the hospital. I believed that my father really had murdered my stepmother, and I assumed that the other patients were undercover reporters, gathering information about me.

My emotional state was one of extreme fear and paranoia, as if I was being attacked, being harassed. But it was also marked by almost mystical moments, as if I had the power to rejuvenate or age people with my mind. It was an extremely moving and powerful weapon.”

One day, while in the hospital, Cahalan was in bed holding a switched off cell phone. She was very agitated, her eyes a little bulging. She exclaimed “I’m on the news”. She thought she was watching herself on television and that her cell phone had been intercepted.

“I ripped off the drip, took the wires off the EKG and ran up and down the hall. In fact, I was trying to get away.

I tried to escape several times, I punched and kicked the nurses. They posted a guard watching me 24 hours a day.

One day the psychosis went away, but something worse came in its place. I stopped talking, could barely walk, had trouble swallowing liquids, and started lying rigid as a board, leaving my arms raised and immobile for hours.

The doctor would describe it as catatonia and the evolution was going the wrong way.

Until Doctor Souhel Najjar came. He handed me a sheet of paper and asked me to draw a clock. I seem to have drawn the circle several times, it was really hard. Then I started to write the numbers from 1 to 12 and it also took a long time.

Finally, I managed to draw everything, and when he saw what I had done, he took his breath away. I had placed all the numbers from 1 to 12 on the right side of the clock. The left side was completely blank.

There he realized that there was something wrong with the right side of my brain, which is responsible for the left field of vision. Somehow that was proof that something in my brain was happening on a neurological level.

He walked out of the room with my parents and the first words out of his mouth were: ‘Her brain is on fire. Her brain is being attacked by her own body.’

He took my hands and said, ‘Let’s work this out.'”

When Najjar said that Susannah Cahalan’s brain was on fire, he meant that there was inflammation within the brain. The symptoms are similar to the behaviors of psychiatric illnesses such as schizophrenia, but there are known physical causes.

Najjar suspected the cause was an autoimmune disease – and he was right. A doctor from the University of Pennsylvania, in the United States, would later diagnose Cahalan as the 217th person in the world to have autoimmune encephalitis against the NMDA receptor.

This disease attacks some of the most fundamental elements of the brain related to memory, learning and behavior.

When she was diagnosed, Cahalan could no longer read, write or speak. She could only walk. Steroid treatment was prescribed.

“Najjar was optimistic. He said I would get 80% to 90% of myself back.

And about a year and a half later, I was able to say, ‘Here I am back, completely.'”

* This report is a summary of Susannah Cahalan’s testimony for the BBC World Service radio program “Outlook”. listen to the episode “They Said My Brain Was ‘on Fire'”which gave rise to this report, on the BBC Sounds website.