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Life with epilepsy: Lisa’s story

Lisa

Lisa was diagnosed with a form of epilepsy called transient epileptic amnesia (TEA), after occasions when her husband would find her staring into space and not knowing where she was. This National Epilepsy Week, Lisa is sharing her story of living with TEA, why she thinks the involvement of people with lived experience of a condition is so important and her hopes for future research.

“It’s not the falling down kind” and “no, flashing lights don’t affect me” are always the first things I have to say when I tell people I have epilepsy. Most people know very little about epilepsy. I used to be one of them.

It started when my husband would sometimes find me staring blankly into space and then I’d briefly not know who people were or where I was. I was also forgetting things, both recent and from my past. I didn’t believe there was anything wrong for a long time. I finally saw my doctor and was referred me to a consultant who told me it was likely to be epilepsy; a kind called transient epileptic amnesia (TEA). I was completely shocked. I had no family history of epilepsy and didn’t know much about it. I still hadn’t felt or remembered any of these episodes myself.

Epilepsy has had a considerable effect on my life. My seizures were short periods of absence and confusion. I also had big gaps in my memory including most holidays and many family events. I couldn’t concentrate, forgot things, and got tired easily. I felt lost every time I went out as I didn’t know where to go or the way back; places I used to know were strange to me. I had to stop driving and to withdraw from a job application. I lost a lot of confidence. After starting medication, the seizures stopped and after a while I now feel more like my old self. I still experience some of the problems and the missing memories of my life haven’t come back, but things are getting better. I’m grateful that I was diagnosed so quickly and for the support of my family and friends.

Research is vital to improve treatments and improve the lives of people affected by epilepsy. It’s important that the research being done takes the views of people who have epilepsy or care for someone into account. I found out about the Epilepsy Research Institute’s Shape Network on their website in early 2023 and signed up. I wanted to be a part of something relevant to me and that was at the sharp end of changing things. When the opportunity to be involved as a layperson in the Institute’s grant round applications came up, I put myself forward.

I was part of several panels looking at grant applications, written in ordinary language, and talking to the researchers to make sure they were listening to the people directly involved and would communicate about their research in a straightforward way. It was interesting to see the many different areas being researched and very rewarding to be involved. Being part of a study or talking to the scientists doing the research means using your experience to help make the studies more effective. Being involved and doing something useful was important to me and, I hope, made a small but positive difference.

Epilepsy has particularly affected my memory, both long and short term. Memory loss affects many other people with epilepsy as well, so I hope that more research is done in this area. I was pleased to see that impact on brain health, including memory loss, was a Top Ten epilepsy research priority and will be a focus of the Institute’s Neurodevelopment research theme. My hope is that research will lead to better treatments and understanding, meaning that in the future living with epilepsy will be easier.

If you’ve been affected by epilepsy and would like to join the Shape Network to help influence and shape research, sign up here.

This National Epilepsy Week, please consider making a donation to the Epilepsy Research Institute so that we can continue supporting crucial research and providing hope for people affected by epilepsy. Thank you.