Emily shares her story as part of Epilepsy Awareness Week

Since 2007, Emily Lloyd has been treated at The Walton Centre to manage her epilepsy. As a teenager in 2002, Emily experienced her first seizure and was cared for by Alder Hey Children’s Hospital. Transitioning to The Walton Centre, Emily was able to work with her clinicians on the best treatments and innovations possible to live with her condition.

Making her way through different medications to control her seizures, Emily found the rate of instances was unreliable and hard to manage.

She said: “I had both absence and tonic-clonic seizures and they were happening very frequently - my body was not getting time to recover before the next instance. I was constantly exhausted and also it was getting dangerous. One time I had a seizure while straightening my hair, burning my face, and another time I collapsed waiting for a train, falling onto the tracks. I was also struggling to think clearly, and my memory was extremely poor. I went back to Professor Tony Marson and the team at The Walton Centre for a better solution.”

Tonic-clonic seizures involve both tonic (stiffening) and clonic (twitching or jerking) phases of muscle activity, a serious disruption to people who experience them. During ongoing treatment and investigations, the specialist epilepsy service at the Trust recommended that Emily consider a Vagal Nerve Stimulator. A stimulator such as this is considered for patients where a specific area of the brain causing seizures cannot be identified. The device detects a seizure forming, and disrupts the episode with an electric signal, essentially stalling the seizure. Emily underwent the pathway in 2018.

The 35-year-old from Liverpool said: “After it had been turned on and calibrated, the rate of seizures dropped dramatically. I’ve gone from weekly instances, to approximately two tonic-clonic seizures a month. Having the rate decrease like this has meant I can notice how other environmental factors such as stress and sleep influence my epilepsy. I can also see a huge change in thinking and memory due to the reduction in absence seizures.

“I can only thank the team at The Walton Centre for the incredible support they have given me over the years. With their help I’ve been able to take control of my condition as much as possible, and therefore improve my quality of life.

“The team are so supportive, especially the Epilepsy Specialist Nurses – they’ve been invaluable. They’ve helped me to incorporate seizure awareness into my workplace and now they’re supporting me in managing my condition in conjunction with starting a family. I’ve also been able to take part in research which will hopefully help improve services for other patients.”

The Walton Centre hosts one of the largest Epilepsy services in the UK. The specialist Trust offers multidisciplinary care, from the first seizure through to complex epilepsy and brain surgery. The hospital has recently been announced as one of only two centres for Laser Interstitial Thermal Therapy, a cutting-edge procedure for patients with Epilepsy that is not easily controlled with medication.

For more information on our Epilepsy services at The Walton Centre, click here