Abstract, published in Epilepsia
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 signs 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.
Methods: Ninety patients diagnosed with focal epilepsy undergoing diagnostic video-EEG monitoring were included. The ability to memorize individual seizure elements was evaluated with a questionnaire. Patient knowledge was then compared to the findings of subsequent seizure documentation during video-EEG 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 signs and symptoms 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 group would only have had seizures classified as a seizure with “impaired awareness,“ according to the new International League Against Epilepsy (ILAE) seizure classification.