People with female sex hormones are disproportionately affected by epilepsy because of hormonal changes throughout their life. Menstruation, pregnancy, childbirth, and menopause can all change the frequency and severity of seizures.
This can have a huge impact. Many people living with epilepsy can’t be left alone, can’t drive, are forced to take time off work and miss social activities, or are unable to care for children or other family. Repeated seizures can lead to exhaustion, as well as a loss of independence and confidence. Epilepsy interrupts the lives people want to live.
It’s vital we address the unique impact that epilepsy has on women. The epilepsy community agrees – during the UK Epilepsy Priority Setting Partnership, research into the influence of hormones came out as one of the Top Ten priorities.
In this blog, we share just some of what we currently know about the influences of hormonal changes on epilepsy and the gaps in our knowledge that research will fill.
How does epilepsy affect the menstrual cycle, menopause and pregnancy?
For about one in three women with epilepsy, the frequency of their seizure’s changes through their menstrual cycle – known as catamenial epilepsy. Why this happens is not clear, therefore, there is no effective medicine to avoid it.
We also know that changes to hormones around menopause can cause a temporary increase in seizures, though again, the exact causes of this are unknown.
We’ve talked in depth in the past about epilepsy during pregnancy, in particular about the risks of anti-seizure medication (ASMs) on unborn children. However, we also know that pregnancy can change expectant mothers’ seizures too, and finding the right balance for seizure control can be challenging.
Though most will have a safe pregnancy and childbirth, we know that people with epilepsy sadly face higher risks of death during and after birth, and higher rates of post-natal depression and other mental health issues.
Research can make a difference
In short: while we know a lot about the impact of epilepsy on those with female sex hormones, we know very little about the exact causes of these effects.
This is precisely why we’re so committed to research in this area. We know how much difference research of this kind could make.
That’s why the Epilepsy Research Institute has made Reproduction and Hormones one of our six key areas for research investment.
One example of the work we’re doing in this area is a PhD project at the North West Doctoral Training Centre. Jointly led by researchers at the Universities of Liverpool and Manchester, the PhD is investigating the hormonal influences on epilepsy in women across the lifespan. The hope is that this project will inform future research, clinical practice, and policy.
The time is now
We have the power to better understand the role that female hormones play in the experiences of those with epilepsy.
Dr Faye McCleod, one of the Reproduction and Hormones theme leaders for the Epilepsy Research Institute, says it best:
“I want to help build a community of people from different clinical and scientific backgrounds to address key questions associated with the risks of taking ASMs during pregnancy or the influence of hormonal changes on seizure generation.
“The expertise is there, we just need to bring a task force group together to share resources, skill sets and ideas to radically advance research in this important area.”
Finding ways to mitigate the hormonal influence on seizures will change the lives of more than 300,000 people with epilepsy in the UK, and millions more across the world.
