Women and Epilepsy: A Handbook of Health and Treatment Issues

Every physician’s fantasy, when confronting a vexing patient, probably mirrors a scene in one of Woody Allen’s movies in which he stands in line with Diane Keaton to buy tickets for an esoteric foreign film when another patron loudly expounds his own thoughts about “the medium” to his date. Woody brings forth media guru Marshall McLuhan and thereby humbles the pedant into submission. The fantasy of conjuring up experts to answer vexing conundrums in medicine is made real in this tidy little paperback. This could well have been titled Everything You Ever Wanted to Know About Epilepsy in Women…But Were Afraid to Ask.

Published in association with the Epilepsy Foundation of America, this book includes 34 authors ranging from clinicians and researchers to actual patients. The editors have skillfully woven the chapters together into a strong tapestry. The first of six sections leads off with why this book was written in the first place. Lisa Zobian Lindahl tells her story of dealing with epilepsy and provides a number of suggestions for other women with the disorder. Her table titled “Managing Your Seizures” should be required reading for anyone who has any chronic medical condition—not just epilepsy. This table is a triumph of the human spirit: commonsensical, practical, and self-empowering. Like the rest of this book, it invites all patients and their significant others to become “experts” on their condition and to be self-advocates in the often daunting and frustrating quest for compassionate treatment approaches.

The next chapter in this section took me on a roller coaster ride of intense emotions: from shame to fear, to anger, and, finally, to a resolve to be a better physician. Dr. Orrin Devinsky of New York University deftly and passionately acts as a tour guide through the history of medicine in relation to epilepsy, including some shameful episodes. I never knew that Hippocrates was the first to write about epilepsy (in On The Sacred Disease, circa 400 B.C.). In an era when people believed epilepsy to be fearsome, ineffable, unknowable, and “sacred,” he identified epilepsy as a brain dysfunction that had nothing to do with the gods. He also debunked the theory that epileptics could predict the future.

Hippocrates’ work, unfortunately, had been forgotten by the time the handbook on witch-hunting called Malleus Maleficarum was published under papal authority in 1494. Written by two Dominican friars, this book had inclusion and exclusion criteria for witches, many of which uncannily described seizure disorders. It also said that witches could cause epilepsy to develop. This book brought on a wave of persecution and torture and led to the deaths of an estimated 100,000 to 1,000,000 women. Even today, 48% of women with epilepsy feel that their physicians—regardless of gender—do no listen to them empathetically, especially in terms of catamenial vicissitudes of their emotions and their seizures.

The section on diagnosis and treatment covers genetics, epidemiology, definitions, diagnostic procedures, and antiepileptic drugs as well other treatments for females with epilepsy from birth into old age. It also features a well-written chapter on nonepileptic seizures.

The section on hormones and the brain is “must” reading for patients and health care professionals alike. It needs a little updating in view of the recent developments in research on hormone replacement therapy.

The section on unique health challenges for women with epilepsy, including family planning, pregnancy, and parenting, is gutsy, illuminating, and hopeful, an antidote to the misinformation that has characterized the medical and popular press surrounding epilepsy, especially in women of childbearing age.

The last section, Living With Epilepsy, tackles practical issues like relationships, sex, driving, legal issues, and problems in the workplace. To hear a female lawyer with epilepsy speak on legal issues gives the chapter a sense of authority and authenticity missing from similar works by the nonafflicted.

Reading the chapter titled “Parenting the Daughter With Epilepsy” by Joan Kessner Austin, R.N., and her daughter, Janet Austin Tooze, pharmacology doctoral candidate, left me touched and overwhelmed.

There is a book by Robert Hopcke called There Are No Accidents(1). As I was finishing this book review, two things happened in my personal and professional life. The first was when I was asked to see a family on an emergency basis. The oldest son was “going ballistic” in school and at home, threatening everyone. It turns out that this behavior came on the heels of his mother’s recent surgery for intractable epilepsy and his father’s threats to leave the family because he could not stand the messiness of the house and the fact that he had to drive his wife everywhere. This scenario was well covered in this book. Next was during a family reunion, when my wife’s cousin saw the title of this book and asked me how I would rate it on a scale of zero to five stars. When I told her I would rate it as five she eagerly wrote down the name of the book. Her teenage daughter had just been diagnosed with epilepsy and “her doctor just does not listen very well,” she said. So much for accidents.