‘Brain On Fire’ – True Story Made Into Netflix Movie

It’s not ironic that after being diagnosed with a congenital defect like Chiari Malformation my fascination with the brain and neurology overall has flourished. There aren’t many opportunities where I can watch the morning news without quickly being pushed to switch the channel to more important things like Elmo and Peppa Pig – my kids favorites.

However this week, this particular morning was different, I was able to watch Megan Kelly on Today interview Susannah Cahalan and Dr. Souhel Najjar – to say that this interview and as I watched the movie was both shocking and captivating is an understatement. I was so eager to know more about her story that I already watched the movie, I’m not one to do that, as I’d prefer to read the book first. If I can throw some names out there to capture more of your interest in this Netflix original, Chloë Grace Moretz plays Susannah Cahalan, Carrie-Ann Moss plays her mother, Jenny Slate her friend and co-worker and Tyler Perry plays Richard, her boss at the New York Post. Susannah Cahalan captures in her book ‘Brain on Fire’ in what she calls, her ‘month of madness.’ Without giving too much away so you can grab this New York Times bestselling book and/or watch the movie on Netflix, I’ll try to be brief on Susannah Cahalan’s journey after going misdiagnosed. She retells the events that took place prior to her diagnosis made by Dr. Souhel Najjarof of an auto-immune disease called Anti-NMDA receptor encephalitis, this is an acute form of brain inflammation that is potentially lethal but has a high probability of recovery with treatment. Although there’s a range of  neuro-psychiatric symptoms some may include;

  • cognitive impairment
  • memory difficulties
  • seizures
  • involuntary movements
  • slowed or loss of ability to speak
  • behavioral changes such as agitation
  • loss of inhibition
  • hallucinations (visual or auditory)
  • paranoid thoughts
  • severe anxiety
  • sleep disruption including severe insomnia
  • decreased level of consciousness – to the point of unresponsiveness, catatonia or coma
  • weakness or numbness of part of the body
  • loss of balance
  • vision changes

Dr. Souhel Najjar was able to diagnose Susannah Cahalan using a test that involved her drawing a clock, this is a test that is normally given to people that are thought of having dementia or Alzheimer’s disease. Susannah rather than drawing the clock’s face with the numbers going from numbers 1 through 12 going around. The disease caused her to draw all of the numbers 1 through 12 only on the right face of the clock. This happened because the right side of her brain, which regulates the left side of the body, was inflamed. Dr. Souhel Najjar helped her from being placed in a psychiatric ward because she was already thought to be losing her mind, to being bipolar and to having schizophrenia, to name a few. This doctors determination to finding Susannah again, helped her on her road to recovery and rebuild her career as an up-and-coming journalist at the New York Post.

Book Available On Amazon – Brain on Fire: My Month of Madness

As someone who went misdiagnosed for years with Chiari Malformation and Syringomyelia , even after multiple testings, blood work, MRI’s and spinal taps, and still continuing to be misdiagnosed, this movie struck a cord. Chiari Malformation is found in only 1 in every 1,000 people and even after decompression, I am still living with symptoms, including memory difficulties, insomnia, weakness and numbness in the body, loss of balance to name a few. As Dr. Souhel Najjar states, only 10 percent of people with the disease found in Susannah Cahalan were properly diagnosed at that time. However, a better understanding of the disease and its symptoms has resulted in more frequent diagnosis and treatment today. This is such an inspiring journey of one woman’s long road to rebuilding her life after being misdiagnosed.


22 thoughts on “‘Brain On Fire’ – True Story Made Into Netflix Movie

  1. I just watched it. I almost didn’t because I thought it would just be a repeat of my life, which I did have a lot in common with the doctors not believing but it was just so inspiring to see the doctor who didnt give up and the real life people it showed at the end!

    Liked by 2 people

      1. I kept thinking I need this man. He had true heart and never gave up and has diagnosed others that never would have been diagnosed. It’s pretty fantastic for her although i know her recovery was hard

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      2. Yes and her families determination. It’s often times easier to give up, but the doctor didn’t, he knew she was in there and wasn’t going crazy, as other doctor so quickly said. There’s a pivotal moment in the film where he’s looking at her in the screen, still not sure what’s wrong with her and says, ‘what am I missing?’ Yes! We have to look so closely at each case, stop looking so much at the negative test results – because they all come out negative, and ask, what am I missing.

        Liked by 1 person

      3. Yep i remember it. I’ ve often wished a doctor would stay up all night and wonder about me as I have researched myself through the night for 12 years now.
        I just got word that the latest genetic testing on me did not get any results. The findings were sent from US to England and the doctor there said that the variants found were not causal to a disease so they are back to square one for the millionth time on testing for me. Very very frustrating.

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      4. Ugh! So sorry about that. I know the frustration. People think that we want there to be something, but when you constantly feel bad, you know in your heart there is definitely something wrong with your body and are desperate for answers. I remember one time before my diagnosis, went to the ER, had blood work, had MRI done, spinal tap, nothing, the ER doctor said, it’s a migraine, go home and take a Tylenol! 😳 He was so wrong! It was NOT a migraine. Next day, my mother called 911 because of the excruciating pain in my head, ambulance took me to the ER, again, misdiagnosed and sent home. How many people experience this exact same thing? How many people are still suffering because doctors are not willing to ask, what am I missing?! So incredibly sad.

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      5. I would rather someone say ” you know I wish I knew but I just don’t” instead of blaming me like what was done for so so long or poo pooing it like they did you. But now it is visible. So things are a little different. You can see my muscles atrophying just like my muscle biopsy said they were doing on the inside you can now see on the outside. It is getting someone to want to help enough to keep on trying. I hope it happens. I want an answer because I want a cure or at least some sort of treatment

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      6. Yes, mine is an invisible illness. I can’t tell you how incredibly sad that is, that this is still happening to you. Maybe you have, but have you tried switching hospitals to get a new doctors perspective? I had to do that about 3 times. In the midst of my frustration, I would switch doctors but not hospitals – I wasn’t getting answers. Then I realized the doctors were all backing each other, no one wanted to say or admit the other was wrong because they all worked for the same hospital. At the end of the day, it’s the Neuro department, they all work with one another, no matter if they have their own separate offices. It was then I switched hospitals, got a new doctor – did that about 3 times until I met my current team of doctors. The road is long, but it’s worth it. You’ll get your answers, soon. 🙏🏽


      7. Oh yes. I’ve been in studies now at the national institute of health, in canada, even in england. All the hospitals around here know nothing. Now there is a doctor studying me up in North carolina. I am in florida. They’ve realized I’ve done every study to be done and the only way to find it is in genetic studies. Getting someone to do the whole genome testing has been the hold up. I hope this guy finds something soon. 12 years is a long time to wait

        Liked by 2 people

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