The lived experience of initial symptoms of and factors triggering epileptic seizures

The aim of this study was to document the self-perception of initial symptoms of and factors triggering epileptic seizures in a sample of people with epilepsy (PWE) and their carers. Among 600 participants, questionnaires were returned by 309 (51.5%), of whom 72.8% were PWE and 27.2% were carers and others. Experiencing at least one symptom prior to a seizure was reported by 86.9% of PWE and 74% of carers. The most common symptoms were a funny feeling, confusion, and anxiety. Experiencing one trigger that resulted in a seizure was reported by 89.8% of PWE and 85.5% of carers. The most common triggers were tiredness, stress, and sleep deprivation. Among PWE and their carers, 63.6% and 51.3%, respectively, indicated that they can tell when a seizure is about to occur, and 26.7% and 15.4%, respectively, indicated that they felt they could stop a seizure. The most common techniques were resting, medication, and relaxation.