Tuesday, July 10, 2018

Brain on Fire: My Month of Madness

I heard this author interviewed on the radio, and then bought the book as an impulse. I think it was in 2014. It chronicles the true story of a successful young woman's rapid decline into violent psychosis, and the struggle by her family and the medical profession to figure out what was happening. Was she just partying too much? Was she bipolar? Schizophrenic? It was a fascination read, and it was important, because just a couple months later my family faced something equally frightening and mysterious.

When my dad woke up too weak to stay home, he went into hospital. He already has a spinal cord injury with limited mobility, so this weakness made him completely dependent, and he's too big for my mother to lift and transfer. He seemed to be getting better, but then, suddenly he was hallucinating, the next day incoherent, the next almost catatonic. We had never seen anything like this, of course and assumed he was dying, but the doctors kept telling us he might get better. He might get better. It was when one said the word encephalopathy that I realized he really might - because that was one of the words used to describe Susannah Cahalan, the woman in the book I had just read. He did get better, but with consciousness came paranoia - conviction that the hospital and my mother were conspiring to kill him. I was grateful for his mobility impairment, because I truly think he would have been violent if he could have been. Then, over then next week, the paranoia disappeared, too. He eventually become strong enough to return home - three weeks after he went into hospital.

We were relieved, of course, but within a week he was weak again and the cycle started all over. Weakness, brief improvement, hallucinations, incoherence, catatonia, consciousness, paranoia and anger, recovery and home. Still no answers for what was causing it. Three weeks. I had asked about anti-NMDA receptor encephalitis, Susannah's condition, but it wasn't what was causing Dad's encephalopathy.

A few days later, it happened again. Each cycle took 3 weeks. Each period of full recovery lasted a few days, and then we were at it again. And finally, after countless autoimmune disorder tests, MRIs, CAT scans, and blood tests, all negative, they decided it was Lewy Body Dementia. Really? What kind of dementia progresses so rapidly, then completely disappears? Then happens again? I'm no expert, but that just sounded wrong.

It was the neurologist who finally diagnosed absence seizures with post-ictal psychosis. His seizures were invisible. There was never any thrashing or anything else we would recognize as a seizure. He is on medication, and he's been fine since. It is still amazing to me that I picked up a book that would tell a story so similar to one we were about to live ourselves, just a month or two before we lived it.


  1. Oh, oh no. I'm relieved your family found answers and things got better. Seizures are part of my story and they can do terrifying things.

  2. Oh, I remember when all that was happening. It was so nightmarish just to hear about it, never mind living it.

  3. What an amazing, terrifying story! How long did it take to get the correct diagnosis for him?

  4. This is absolutely frightening and fascinating. And frightening.

  5. I remember when he was sick, but not that it cycled in that way. So scary! Thank goodness for the smart neurologist.

    1. And coincidentally, today I blogged about Lois Duncan, who didn't read a book that turned out to mirror real life, but wrote one.

  6. That is terrifying. I'm so glad he got a diagnosis and treatment in the end. The older I get the more I realise that our bodies are so ... well ... terrifying (I can't think of any other word) it's a wonder we can get out of bed in the morning.


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