Juvenile Myoclonic Epilepsy in Rural Western India: Not Yet a Benign Syndrome

Purpose. To study prevalence of uncontrolled seizures in patients with juvenile myoclonic epilepsy [JME] and assess factors responsible for it. Methods. An ambispective study of all patients with JME attending our epilepsy clinic was done. We recruited all patients with JME evaluated between 1 January 2009 and 31 December 2013 and followed them up to 31 December 2015. Results. Amongst 876 patients with epilepsy, JME was present in 73 patients. Amongst them, 53 [72.6%] had uncontrolled seizures prior to neurology consultation. Factors responsible for uncontrolled seizures included pitfalls in diagnosis like absence of prior neurology consultation missed history of myoclonus in prior consults and pitfalls in interpretation of EEG. Pitfalls in management were incorrect antiepileptic drug use, underdosing of AED, noncompliance with lifestyle, noncompliance with medicines, associated psychogenic nonepileptiform events, patients deliberately missing medicines for secondary gain, and concomitant alternative medicine use. 45 (84.9%) patients had "pseudorefractoriness." True refractoriness [seizures despite 2 correctly dosed rational drugs] was seen in 8 (15.1%) patients only. Conclusion. Three-fourth of our patients had uncontrolled seizures initially, predominantly due to pitfalls in its diagnosis and management. Improving patient awareness and primary physician training for JME management is the need of the hour.