Epilepsy and sex hormones (such as oestrogen and progesterone) have complex interactions. Changes in hormones can influence how well seizures are controlled, and seizures can also affect the body’s release of hormones. During perimenopause and menopause, significant changes in sex hormones occurs. How these changes affect women with epilepsy is not fully understood and research in this area is lacking. In the same way, it is not known how hormone replacement therapy (HRT) may affect epilepsy.
We are setting up a study to address this knowledge gap. It is a questionnaire-based study where women with epilepsy between the ages of 40 and 65 years will be invited to complete a questionnaire every six months for two years. The questionnaire will include questions on seizure frequency, mood, cognition, quality of life, menopause status, hormone replacement therapy (HRT) use, and bone health. The study results are expected to provide valuable insights to help women and their healthcare teams better understand the potential impact of menopause on epilepsy.
I had the pleasure of speaking with a fantastic group from Shape about our research and the study questionnaire. The conversation had an immediate impact. Thanks to their input, we shortened the time between questionnaires and added new important questions on topics that may affect seizure control or influence decisions on hormonal treatments. The group also came up with a great idea: encouraging participants to keep a seizure diary and involving relatives in tracking seizure frequency. This will make reporting of seizure frequency more accurate.
I can’t recommend working with Shape highly enough to other epilepsy researchers. The Institute team were incredibly supportive in facilitating the meeting and the study design has been hugely strengthened by insights from women with lived experience of epilepsy.
Furthermore, it was motivating and inspiring to hear the group’s enthusiasm for our research and to hear the challenges caused by this overlooked area – powerfully highlighting the urgent need to close this knowledge gap.
