I am still me

I want to tell people my story and journey of having epilepsy, and show people that it doesn’t change who you are – it makes you the person you are today!

On the night of my 8th birthday I had just got home from my school disco. Everything was normal. I got home put my pyjamas on, brushed my teeth and got in bed. At the time I shared a bedroom with my older sister. We had bunk beds I was on the top bunk and she was on the bottom.

After being asleep for about 10 minutes I had my first seizure. My sister panicked as it had never happened before. She ran into my mum and dad’s room and told them I was shaking and something was wrong.  My mum and dad came running into my bedroom and called an ambulance. Because it was my first seizure nobody in my family knew what to do. My dad thought I was swallowing my tongue so he decided to put his fingers in my mouth to try pull it out. (Very bad idea – I ended up biting his fingers down to the bone! Never put anything in someone’s mouth when they are having a seizure). The ambulance arrived they took me to the hospital and did some tests.

The hospital wanted me to have an MRI scan. As an 8-year-old girl I was petrified. I couldn’t stay still, I started crying and it was impossible to do the scan. The hospital let me talk to my mum and she managed to calm me down. When we tried the MRI scan again and it wasn’t bad at all! I think the thought of going into a huge noisy machine made me so scared but honestly the machine isn’t bad at all. You lie down, with earphones on because it’s really noisy, and then 10 minutes later it’s done.

After the MRI results came back they confirmed that I had epilepsy, and that flashing lights were a trigger. Like any parent would, my mum and dad panicked. They started googling epilepsy and obviously they see the all worst things, like I could die and it would change my life forever.

The hospital prescribed me medication to control the seizures but the first medicine was no good. It made me put on loads of weight and have all different kinds of ticks, from rolling my eyes to stretching my mouth open wide and moving my nose like a rabbit. Trust me they were not a good look!

By the time I was 12 or 13 the hospital tried another medication. That one had the complete opposite effect it made me lose so much weight that I ended up having to take milkshakes to help me gain weight, and I still had all the ticks.

I still take my medication (Lamotrigine) every morning and night to keep my epilepsy under control. I’m 20 now. I struggle with anxiety and depression and I still have ticks, where I blink for a long time and roll my eyes. But I haven’t had a seizure for 7 years now.

I live a completely “normal” life. I have a full-time job, a loving boyfriend and a family who love me. Epilepsy hasn’t changed me. Epilepsy put some restrictions on my childhood but it doesn’t control my life. It won’t if you don’t let it.