Life with epilepsy: Murray’s story

Since the age of 16, Murray has lived with epilepsy. Now 44, he recently took part in a successful trial for a new device designed to forecast seizures. Murray shared his experiences of the trial and how the technology has reshaped his future.

I've been living with epilepsy for 28 years. I first experienced absence seizures, which initially occurred six times a day, but have now reduced to five or six times a month.However, there was a time when I had a cluster of 90 seizures in a single weekend. I rarely receive warning before a seizure, leaving me little time to prepare. This lack of awareness has led to slips, trips, and near accidents; I have almost walked off train platforms three times but was thankfully stopped by kind strangers on each occasion. The side effects I deal with include frequent headaches, fatigue, low mood, and forgetfulness.Over the years, I’ve tried various medications, some of which were more effective than others. I was also offered invasive surgery, but I declined due to the risk of potential physical disabilities, memory loss and speech issues. I've lived with epilepsy long enough to understand that for some people, surgery may be an opportunity to improve their quality of life. There are many things I’ve missed out on, such as driving, but I still find joy in working and enjoying my hobbies, like attending music concerts.A few years ago, my neurologist asked if I would be interested in participating in a trial for a new device designed to forecast seizures. I was curious about the technology and interested in finding out more.The device is called the Subcutaneous EEG, or a ‘SubQ’. It’s a small implantable device that would be placed under the skin on the right side of my head, where my seizures are linked to my temporal lobe. I was told the procedure to install it, done under local anesthetic, would take about 20 minutes. Along with the device, I would wear a wrist sensor and use an app to log my daily experiences. The SubQ would monitor seizures, muscle movements, brain signals, and other metrics to help predict seizure occurrences, for 15 months. I knew that many other people might benefit from this minimally invasive technology. It sounded futuristic and pretty cool to me!Why was I chosen? The researchers said my seizure patterns were deemed suitable for the study. I felt that even if it only helped one person, it would be worthwhile for me to contribute. I’ve never let epilepsy define me, and I wasn’t going to start now. I believe in owning a condition when you have one, not the other way round.I also hoped that the SubQ would tell me more about my epilepsy – I had many questions. Was I recording them correctly? Were they actually seizures? How long did they last? What was my brain doing at that moment? Would I be able to see them in a graph or a picture maybe?The trial was successful and provided valuable insights for my neurologist, influencing ongoing treatment adjustments. While I’m not seizure-free, I believe SubQ represents a significant step towards that goal. I am now on my second implant, which has become a regular part of my life. I wear it comfortably during sleep, while shopping, working or socializing with friends. Its impact on my daily life is minimal compared to the benefits it offers. It has accurately recorded my seizures, revealing that I experience more than initially thought — up to 25 a month.With continued data collection, advanced algorithms and predictive technology, I’m confident that others will benefit from this innovation. It has reshaped my future and if it can help me then that’s a positive outcome. I recognize that my brain has been affected, and while medication might offer future benefits as science progresses, I hope that the data from my seizures will aid the next generation of individuals living with epilepsy. If this technology can prevent others from experiencing harm, that would be my greatest wish and the most meaningful gift. This is why I believe in the importance of future epilepsy technologies, as I am already experiencing their impact first-hand. Source: epilepsy-institute.org.uk