Use of an online epilepsy diary to characterize repetitive seizures

Abstract

Significance: Little is known about patterns of seizures that occur multiple times a day, sometimes called clusters or serial seizures.

Objective: The online diary, My Epilepsy Diary (MED), provided self-reported data from community-based patients to describe the characteristics of clusters.

Methods: We used MED data to define a population of 5098 community outpatients, including 1177 who specified time of multiple seizures in a 24-hour period. Outcomes included cluster prevalence and frequency, distribution of interseizure time intervals, as well as the types of triggers commonly reported.

Results: One-fourth of days with any seizures included clusters for these patients. Most days with clusters included 2 seizures, with >5 events occurring in only 10% of days. One-third of seizures occurred within 3h of the initial event and two-thirds within 6h. When more than 2 seizures occurred, the time to the next seizure decreased from an average of over 2h (to the 3rd event) to a quarter-hour (from the 4th to the 5th event).

Conclusion: My Epilepsy Diary data have provided the first overview of cluster seizures in a large community-based population. Treatments with less than 3-hour duration of action would be bioavailable at the time of only one-third of subsequent seizures. Although limited by the self-reported and observational nature of the diary data, some general patterns emerge and can help to focus questions for future studies.

Keywords: Clusters; Diaries; Epilepsy; Patient-reported outcomes; Seizures; Serial seizures.