Which seizure elements do patients memorize? A comparison of history and seizure documentation.

OBJECTIVE: People with epilepsy (PWE) are frequently unable to recall the core manifestation of their disease, epileptic seizures. This means that seizure frequency is often underestimated by practitioners and that seizure classification based on reports of patients or their relatives is difficult because seizure semiology remains unclear. The purpose of this study, therefore, was to prospectively explore patients' memory regarding seizure elements and to assess the role of seizure types. METHOD: Ninety patients diagnosed with focal epilepsy undergoing diagnostic electroencephalography (EEG)-video monitoring were included. The ability to memorize individual seizure elements was assessed using a questionnaire. Patient knowledge was then compared to the findings of subsequent seizure documentation during EEG-video monitoring. Seizure elements were categorized in four groups: subjective, motor, autonomic, and postictal elements. RESULTS: In all categories, the number of documented seizure elements during monitoring strongly exceeded the number of elements that were recalled. Only 45.6% of subjective elements, 5.4% of motor phenomena, 11.9% of autonomic findings, and 2.1% of postictal impairments were recalled. The ability to recall seizure elements varied significantly depending on seizure types (secondarily generalized tonic-clonic seizures [SGTCS] < complex partial seizures [CPS] < simple partial seizures [SPS]), but not on the relative timing of the element during the seizure. SIGNIFICANCE: Patients' memory of seizure semiology is almost always fragmentary. Although the rate of correctly remembered seizure elements depends on the seizure type, complete recall of a seizure is almost never obtained. Consequently, 89 of 90 patients in this cohort would only have had seizures classified as a seizure with "impaired awareness" according to the new International League Against Epilepsy (ILAE) seizure classification. The involvement of brain areas involved in memory encoding and consolidation and in the context of seizure classification schemes.

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

BACKGROUND: 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. PURPOSE: 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. METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.