We fight to improve the lives
of everyone affected by epilepsy

Steve Cole

I’ve read so many inspirational stories from people affected by epilepsy, many in such awful ways. Mine is very different…
I was diagnosed with temporal lobe epilepsy in April 2014. I don’t black out, I don’t have fits and I don’t have severe absence seizures. For that I feel very lucky. So, you may be wondering why on earth I am writing this post.
It all started in 2012 when I started going into a short daze – maybe 3 seconds – and having the most vivid Deja vu type feeling. These ‘feelings’ were so real, yet when they stopped I can’t tell you anything about them. When the daze stopped I’d have an awful taste in my mouth and struggle to concentrate for a while (if it happened at work I just had to look busy) and then I’d feel like I had the most awful hangover. These would usually happen every 6-8 weeks and I’d get 3 or 4 in a day and then nothing…
Typically for a man I didn’t tell anyone. I just thought I’d be fobbed off at being tired or stressed.
In September 2013 I had 8 in one day, including 1 in front of a work colleague. I then told my wife who said I should visit a doctor. I didn’t. It happened again in October when my wife, once again told me to book a doctor’s appointment. This time she was more forceful. I did and was told that they suspect it to be epilepsy. I was scared and did the usual ‘Google diagnosis’. This website was incredibly useful!
When I finally had my hospital neurology appointment it was confirmed that I had epilepsy. I’m not sure how I felt at the time, but hearing that I would lose my driving licence until my seizures could be stopped was the worst part! It must be a man thing, but the thought of having to rely on my wife to take the kids to all of their clubs, do all of those little shopping trips, ultimatly be my taxi was hard to take. It felt like this diagnosis would affect her more than me. She was (and still is) incredible and I can’t thank her enough.
In the coming months the hospital epilepsy team (who were brilliant by the way) started my medication. As I only had seizures every few weeks, it was a long process to find the right medication. Just when I thought they had stopped and my driving licence was in sight, I’d have a seizure and the medication would be increased or changed. Finally, after two years I was seizure free and got my licence back.
The scariest part was having an MRI scan to check for a tumour. I was told that it was very unlikely but they needed to rule it out. Thankfully no tumour was present and, to this day, they don’t really know why my epilepsy started at the age of 35.
Anyway, apart from taking tablets twice a day my epilepsy doesn’t affect me as it does for so many inspirational people that have posted their stories on this website.
So, back to the start of this post. Why have I wrote it? I was told that my form of epilepsy is the most common, yet is rarely talked about because it’s considered so mild. I just wanted to share my story, hoping that those who have experienced similar can relate to someone else’s story.
I’ve since started fund raising for Epilepsy Action in a bid to help those who suffer far worse than I. My next fund raiser is running the Great North Run in September (with my amazing wife). If you can relate to this story (or not…) and would like to donate, here’s my Just Giving page: https://www.justgiving.com/fundraising/steven-colegnr

Steve Cole
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