Juvenile myoclonic epilepsy 25 years after seizure onset A population-based study

Objective: To document the long-term evolution of juvenile myoclonic epilepsy (JME) in a population-based cohort. Methods: All patients developing JME by 16 years of age in Nova Scotia between 1977 and 1985 were contacted in 2006-2008. Results: Twenty-four patients (17 women) had JME, 3.5% of all childhood-onset epilepsy. Age at first seizure was 10.4 +/- 4.3 years. We contacted 23 of 24 (96%) at a mean age of 36 +/- 4.8 years. All were initially treated with antiepileptic drugs (AEDs). At the end of a 25.8 +/- 2.4-year follow-up, 11 (48%) had discontinued treatment: 6 were seizure-free (without AEDs for 5-23 years), 3 had myoclonic seizures only (without AEDs for > 18 years), and 2 continued with rare seizures. Convulsive status epilepticus occurred in 8 (36%) and 3 had intractable epilepsy. About 70% reported good satisfaction with their health, work, friendships, and social life (Likert scales). Despite 87% high school graduation, 31% were unemployed. Sixteen live with a partner, 7 alone. Nine received antidepressant medications. Ten women had >= 1 pregnancy and 4 men fathered a child. Eleven pregnancies (80%) were unplanned, outside of a stable relationship. At least 1 major unfavorable social outcome was noted in 76%. Conclusions: Our sample size is modest but the long follow-up and population-based sampling is unique. All seizure types in juvenile myoclonic epilepsy (JME) resolved in 17% and for 13%, only myoclonus persisted. Therefore, one-third of people with JME have troublesome seizures vanish and antiepileptic drug treatment is no longer needed. Depression, social isolation, unemployment, and social impulsiveness complicate the lives of many patients. Neurology (R) 2009;73:1041-1045