“I think I’d had epilepsy for a while before I realised anything was wrong. It wasn’t until I moved in with my girlfriend Ruth, who is now my wife, that she noticed it and made me go to the doctor.
"At first I thought she was joking. I’d been living with my parents and they hadn’t really noticed anything. I think they just thought I was occasionally being a bit odd or drifting off.
“I have left temporal lobe epilepsy with complex partial seizures. I go blank, stare into space and dribble, and don’t respond to anything. I'm not aware it's happening. Apparently it lasts about a minute.
"It normally happens in the evening and at night when I’m asleep. Ruth says I make strange sounds, worse than snoring.
“Sometimes I feel a bit odd afterwards, similar to the early stages of being drunk. I can carry on doing normal tasks but later on I'm surprised that I've done them. I'm not aware of having lost any time. How often they happen varies, but on average it's once or twice a week."
Surprise diagnosis
“The first GP we saw tested my blood sugar levels and didn’t find anything. We decided to see a second GP. He immediately said that it sounded like epilepsy. He sent me for a variety of tests, including an EEG to monitor my brain activity.
"It was a shock to hear it was epilepsy. I thought people with epilepsy fell on the floor and wriggled about [a tonic-clonic seizure]. Like most people, I didn’t know there were other forms.
"I have had one tonic-clonic seizure, about six months after my diagnosis. It was the day after my stag party. I was eating out with my parents and close friends and, just as our food came to the table, I had a seizure. I fell on the floor unconscious and had to be taken to hospital in an ambulance."
Life changing
“The diagnosis had a huge effect on my life. I started taking medication to control the seizures and I stopped drinking alcohol. But the main thing was losing my driving licence. You can’t drive if you have epilepsy.
"At the time I drove 25 miles every day to my job designing a website for a charity. I tried public transport but it involved a bus, two or three trains and a lift from colleagues. They were all very good about it but it was too hard so I left my job.
“This turned out to be positive because it meant I became a stay-at-home dad, which I love. Ruth was pregnant when I left my job, and when our daughter was born we were able to have the first four months at home together getting used to life with a newborn baby.
"I was very scared the day before Ruth went back to work. It felt like a big responsibility looking after the baby on my own, but it was fantastic. We already had a daily routine, so I knew what I needed to do and when, and I took the baby out as much as I could, mainly for walks. My daughter is now five and she has a two-year-old sister, so I look after them both."
Medication side effects
“I’ve taken seven types of medication since my diagnosis. Some of them have made things worse and some have made things better, but none of them has solved the problem. At the moment I’m on three drugs.
"The main side effect is having a poor memory. It’s terrible. Some things I remember are random and pointless, and then things like our wedding day I don’t really remember at all. It feels strange looking at the photos. I know I was there and had a great time, but can’t remember much, which is very sad.
“Another side effect of the drugs is that I’ve lost weight. I used to be a bit big at 15 stone 3 pounds and now I’m 10 stone 8 pounds, which is good, although sometimes I think I’ve lost a bit too much.
“At home, we try to keep things as normal as possible. Not drinking alcohol didn’t make any difference to my seizures so now I can enjoy a glass of wine in the evening. I hope to stay at home until the girls are at school, then I’ll get a job locally.
“I would never have considered being a stay-at-home dad if I hadn’t been diagnosed with epilepsy. I have so much fun being with my girls and have enjoyed seeing them grow up right in front of me. Although I was devastated when I was diagnosed, it's had a positive impact on our lives.”
