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Published on September 03, 2015

Brain on fire, with no extinguisher in sight

Brain on fire, with no extinguisher in site


Susannah Cahalan & Dr. Karen Lynch

One day Susannah Cahalan wasn’t quite feeling herself. A few weeks later, she was having seizures and psychotic episodes. She was suffering from an undiagnosed autoimmune disease and inflammation of the brain and was on her way to coma and, ultimately, death.

Susannah Cahalan, a New York Times best-selling author and Dr. Karen Lynch, a Cape Cod Healthcare neurologist, were the key note speakers at the Cape Cod Healthcare Foundation’s annual Women’s Health Initiative. The room at the Wequasset Resort and Golf Club was full of women (and a couple of men) from across Cape Cod interested in “Putting Our Heads Together”, the event’s theme. The luncheon paired physician and patient perspectives on neurological diseases – from memory loss and dementia to migraines to Ms. Cahalan’s official and final diagnosis, Anti-NMDA-Receptor Autoimmune Encephalitis – a disease where the immune system attacks the brain resulting in inflammation and the manifestation of seemingly unrelated symptoms.

Dr. Lynch began practicing on Cape Cod just last year and remains the only female neurologist on the Cape. She brings with her vast experience in clinical care for patients with many neurological issues but her particular interest is in women’s neurology, specifically headache disorders and pregnancy and neurology.

Her clinical interests serve a strong need in our community, as there approximately 36 million patients in the U.S. who suffer from migraine. “Migraines are three times more common in women than men,” Dr. Lynch said, “and are likely to affect women during their most productive years – between the ages of 30 and 60.”

At the onset of Susannah Cahalan’s illness, she experienced a host of physical symptoms, including an alarming numbness along one side of her body. She went to her primary care physician. Tests were ordered. Everything came back normal. She began to have seizures. A specialist evaluated her. More tests were ordered. All came back negative. She was eventually hospitalized in a bed with wrist restraints. More tests. And still no diagnosis. The onset of her symptoms to eventual diagnosis lasted only two months but her symptoms spanned from seizures, to psychosis, to catatonia. A neurologist – nicknamed ‘Dr. House’ – eventually evaluated her and diagnosed her with anti-NMDA-receptor autoimmune encephalitis. Ms. Cahalan was the 271st person to be diagnosed with this disease which had only officially been classified since 2005.

Ms. Cahalan decided to pen her story, cataloging those weeks of illness and experiences with a spectrum of physicians who didn’t know what was wrong with her. “It is important to me to share my story with women and push the issue of patient advocacy,” she said. “Autoimmune encephalitis affects many women who are often misdiagnosed. This opens the conversation about mental illness, health and women. We have to be advocates for our health.”

Learn more about Dr. Karen Lynch, including an innovative, new treatment for migraines using Botox©.

The Women’s Health Initiative focuses on advocacy, education and philanthropy. Now in its ninth year, WHI brings together local experts for conversation about important and relevant topics on women’s health. Learn more about it.