Towards a better understanding of living with epilepsy: The lived experience of seizures

The study aimed to document self-perceived warning signs, initial symptoms, and triggers of epileptic seizures and techniques to control seizures for people with epilepsy, and to establish patterns in these self-reported experiences of epilepsy in relation to age, gender and seizure type. Of the 338 people with epilepsy who had registered interest in participating in social research, 225 returned a self-report questionnaire (66% response rate) that contained information regarding demographic characteristics, living with epilepsy, and self-perceived warning signs, initial symptoms, triggers of seizures and techniques to control seizures. Of 225 respondents, 195 (86.6%) experienced at least one initial symptom prior to a seizure and 202 (89.8%) experienced at least one seizure trigger. Gender analysis of triggers revealed that females differed from males regarding seizures triggered by low blood sugar, dieting, fasting, touch and female specific triggers (menstruation, pregnancy and ovulation). Respondents reported tiredness as the most frequent trigger (65.3%), followed by stress (64%) and sleep deprivation (55.1%). Many respondents (63.6%) reported that they could predict seizure occurrence, with 91 (40.4%) also indicating that family members could predict seizure occurrence. A total of 157 (69.8%) respondents had tried at least one of 12 possible seizure avoidance techniques, with resting and medication the most frequently reported. Finding that respondents were able to recognise warning signs, initial symptoms and triggers of seizures, and some were able to stop seizures provides scope for developing interventions, such as promoting avoidance of high risk triggers, which supplement existing treatments of epilepsy.