Despite the many advances in the treatment of epilepsy, many patients still have seizures, sometimes with no decrease in their frequency or severity. That is why I am impressed that most of my patients still maintain a lust for life, show great courage, and continue to focus in the positive aspects of their lives.

Two of the most important problems faced by people with epilepsy are loneliness and difficulty finding a job. Consequently, social rehabilitation programs have a very important role in their overall treatment plan. Unfortunately, however, most physicians who work in the field of neurorehabilitation have no training in epilepsy, and most books on neurorehabilitation do not include chapters on epilepsy.

As a doctor and an epileptologist, I experience the deepest frustration when I am notified of the sudden and unexpected death of one of my patients. Often these patients have been found dead in bed, lying dead in the floor of their apartment, or drowned in the bathtub. They are invariably young and are often at the beginning of their lives. I never forget them, and I feel that I have truly and ultimately failed them.

Sudden death among patients with epilepsy is something we do not discuss with patients often enough. But how should this issue be addressed? Should we tell every patient with epilepsy about the risk? Most of all, should more research be done to find out why this happens and how to prevent it?

Recently, a lovely 24-year-old woman with epilepsy was found dead in the bathtub. Only a month before she had proudly shown me her 18-month-old daughter and described how she had succeeded in finding a nice apartment. She was optimistic because she felt as if she were starting a new life (her boyfriend had left her when she became pregnant). I often think of her daughter and wonder who is taking care of her now.

Another one of my young patients, a 25-year-old man, died last year while in bed. His parents had encouraged him to live alone so that his life would be as normal as possible. They had visited him that evening and had eaten dinner with him. He had a girlfriend, but she had not been there that night.

The next morning he was found lying face down on his bed, fully dressed. No one was sure whether or not he had experienced a seizure. When his parents called me, we talked about the problem of sudden death and epilepsy. They wondered why his other doctors and I had not told them or their son that this could occur. I asked them if they thought he would have lived any differently if he had known. If we told every patient with epilepsy about this possibility, some might not dare live independent lives or might be burdened by anxiety, knowing that they might not awake in the morning.

To this day, I do not know if my answer was appropriate.

Epilepsy in Our Experience: Accounts of Health Care Professionals by Steven C. Schachter, MD, Oxford University Press, 2007, Amazon