Blog #144: “Should I tell people I have epilepsy?” What do neurologists with epilepsy do?

 

Your insecurities, your anger, and frustrations about your epilepsy are not unique to just you. A neurologist in south Florida had to be driven to her clinic by her husband and picked up at the end of the day. This neurologist has left temporal lobe epilepsy for 16 years. Her focal seizures secondarily generalized into convulsions. Now, well controlled, this director of an epilepsy clinic worries about having breakthrough seizures. That’s why she concentrates on getting enough sleep and she counsels her patients to do the same. Her stress is managed by meditation and exercise.¹

 

Neurologists with epilepsy are more forgiving of their patients who occasionally lapse in their medications and self-care. They can relate. Having the condition has made these neurologists more compassionate and understanding of their epilepsy patients. They, too, feel the embarrassment and stigma that comes with epilepsy. One neurologist who has had epilepsy since she was an infant, relates that she tells people that the epilepsy doesn’t change who they are or what they do. It doesn’t mean they can’t achieve their goals and what they can accomplish in life. Despite a right temporal lobectomy after three different anticonvulsants failed to control her seizures, seizures recur every few months. Her seizures awaken her—she has a head rush and lip smacking and her left-hand clenches. Epilepsy worries are there for her every day. She avoids alcohol and tries to get adequate sleep.

 

One neurology chief of department and epilepsy specialist was diagnosed with “probable epilepsy” at age 16. Then a tumor was found. He has had no seizures since brain tumor surgery 29 years ago. One of his earlier convulsions caused a spinal fracture from the intense muscle contractions. He took anticonvulsants for 5 years after the brain surgery and has had no further seizures for 30 years. “Because I shared my story, some patients want to see me because they know I can understand and I can relate.” This neurologist helps epilepsy patients find a balance between their personal safety and their independence and autonomy.

 

Other neurologists with epilepsy don’t always disclose their condition, but they do if they feel it will convey more confidence that I understand what they are going through and how it will affect them long term. It’s advised that one needs a core group of people who know about their epilepsy. Wear an epilepsy ID bracelet/necklace to avoid interventions that could be unnecessary and risky if others are unaware of your epilepsy. The more people around you who know, the safer you will be and the better quality of your care.

 

Tell others of your epilepsy: “If I have a seizure, stay with me, and put me on my side to keep me safe. Don’t try to restrain my shaking or put anything in my mouth. The shaking will stop in a minute or two and then I’ll be sleepy and confused. Stay with me.”

 

 

 

1.)   Colino S. My neurologist has epilepsy. Brain and Life. June/July 2022 p24-27.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in a recent Publishers Weekly, New York Times Book Review and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.