Viewing their own seizures improves understanding of disease in people with epilepsy

People with epilepsy (PWE) are frequently unable to recall the core manifestation of their disease, epileptic seizures. This limits their understanding of disease severity and social reactions to it.

The purpose of this study was to assess the effects of video presentation (VP) of one's own seizure and the role of seizure type/severity.

Ninety patients diagnosed with focal epilepsy undergoing diagnostic video-electroencephalography (EEG) monitoring were included. All participants were presented with a seizure of their predominant seizure type on videotape. Effects of viewing seizures were assessed using a questionnaire immediately after the VP (T1), after 3 days (T2), and after 3 months (T3).

Of the participants, 97.6%, 87.2%, and 85.2% considered VP as helpful at T1, T2, and T3, respectively. Participants who viewed a more severe seizure tended to assess the VP as more helpful, related to an improved understanding of the disease and of reaction of others to their seizures. Of the participants, 11.5% and 5.0% perceived the VP as stressful at T2 and T3, respectively. Severity of the presented seizure was positively correlated to the level of stress induced, mostly because of a feeling of helplessness based on ictal loss of control.

The VP of the patients' own seizures is a way to improve the patients' knowledge on their disease, which was appreciated by the vast majority of participants. The VP of severe seizures was regarded more informative yet also more stressful. Further research is needed to examine possible effects on quality of life and compliance.