Hi! My name is Emma and I was diagnosed with epilepsy when I was seven years old. Before being diagnosed I’d had two convulsions, but it was a tonic clonic seizure that kicked off more serious investigations. For the next ten years I was affected by focal seizures during the night.
I always knew when they were coming. I would get a weird feeling in the back of my throat, strange tastes in my mouth and tingling sensations in my body. It’s scary knowing you're about to have a seizure; I would just hide under my duvet and wait for it to be over. I felt as if I was out of my body and looking down on my self. I couldn’t speak and felt like I had no control, but would always remain conscious and was fully aware they were happening. During seizures, I would sometimes put a thumb up, just to let my Mum know that I was OK – naturally my family would be worried.
Nobody could tell me what triggered my seizures and this led me to keep a seizure diary from the age of fourteen. I spent the next ten years trying out new medications at various dosages. I would get side effects like headaches, loss of feeling and rashes and it was extremely frustrating every time a new course of medication failed to work.
Because my seizures occurred at night, I didn’t feel that my epilepsy had a significant impact of my day-to-day living. I did notice some impact on my schooling from a young age, but my teachers were aware of my epilepsy and were very supportive. It wasn’t until I went to sixth form college that my epilepsy started to affect my education. I had been a good student and was proud of my As and Bs at GCSE, but the jump in what is expected of pupils at A-level is so large; I found it difficult to cope. When it came to remembering information for exams I struggled, my memory had always been quite bad and there was so much to remember at college. I would get frustrated as I knew the information, but would struggle to get the words onto paper. My epilepsy began to affect me so much, I knew it was more important than ever for it to be treated successfully.
When I was seventeen, I got an appointment to see Professor John Duncan at the National Hospital for Neurology and Neurosurgery and had a number of tests such as an MRI, fMRI and EEG. I was used to these tests being inconclusive, so I was surprised at how quickly Professor Duncan diagnosed the problem! It was one of my first appointments when he turned his computer screen in my direction and showed me my MRI scan. I could see the scarring on my brain that was the source of my seizures. This may sound strange, but I remember a huge sense of relief for me and my family; after ten years we finally knew what was causing my seizures!
From here, things started to move really quickly. Professor Duncan explained to me that because of my age and the location of the scarring on my brain, I could be an eligible candidate for surgery. I didn’t take the decision lightly, brain surgery is a scary concept to get your head around! I knew how important it was for me to control my seizures though and Professor Duncan was so reassuring. So, after a week of tests to determine my eligibility for surgery, it was found that I was the perfect candidate! About six months later in July 2008, I had the brain surgery that would change my life forever.
Immediately after the surgery I felt different. Obviously, as soon as I woke up I felt a bit rubbish; after all, I had just had brain surgery! But something felt different and I’ve never had a seizure since. I’ve now been seizure free for two and a half years! From having seizures almost every second night, this is something I never thought would have been possible.
Words cannot express how much the surgery has meant to me. Before this, I had always wanted to go travelling, but it didn’t seem like something that would be possible. There was always the worry that I could have another tonic clonic seizure whilst abroad and away from my family and support network. So, after the surgery I knew exactly what I was going to do! Almost as soon as I came around, I started planning my trip. That Summer, I went travelling around the world for six months. My favourite place was New Zealand where we bought a car and travelled the north and south islands. The scenery was breathtaking; it’s such a beautiful country. I loved every second of it!
When I returned, I started at university. I had always wanted to go to uni, but felt that I wouldn’t be able to because of how badly I was affected by my epilepsy during my A-levels. Now, I am a first year nursing student and having the time of my life! Living in halls has been a really fun experience. The university have been fantastic at offering support and information too. They understand that I still have problems with my memory and have even supplied me with a dictaphone to record lectures with. I must look a right geek sitting in lectures with it, but I don’t care! Because of my memory I need to record everything and go over my notes again and again when I get home. I know I have to work a bit harder than my peers because of my memory, but it will all be worth it in the end!
After my surgery, I told Professor Duncan that I really don’t think I would have gone travelling or gone to university if it wasn’t for his work, and I still stand by that. I would like to thank him and everybody at the National Hospital and Epilepsy Society; they have all made such a huge difference to my life.