Epilepsy - 'I can't remember my wedding day or the birth of my first child'

Mark Kellaway, from Basingstoke, found out he had epilepsy at the age of 26. He hadn’t realised he was having seizures, but the diagnosis has had an unexpectedly positive effect.

“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 see a doctor.

"At first I thought she was joking. I’d been living with my parents and they hadn’t noticed anything. I think they just thought I was occasionally being odd or drifting off.

“I have left temporal lobe epilepsy with complex partial seizures. I go blank, stare into space and dribble. I don’t respond to anything. I'm not aware it's happening. Apparently it lasts about one 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 that time has passed. How often the seizures happen varies, but on average it's once or twice a week." 

“The GP tested my blood sugar levels and didn’t find anything. I decided to see a second GP. He immediately said it seemed like epilepsy. He sent me for a variety of tests, including an EEG (electroencephalogram) to monitor my brain activity.

"I was shocked to hear that 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 that there were other forms.

"I've 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 arrived, I had a seizure. I fell unconscious on the floor and was taken to hospital in an ambulance." 

“The diagnosis had a huge effect on my life. I started taking medication to control the seizures and I stopped drinking alcohol. But the biggest change 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 helpful, 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. When our daughter was born, we had 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. Looking after the baby on my own felt like a big responsibility, but it was fantastic. We already had a daily routine, so I knew what I needed to do and when. 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."

“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. I remember random and pointless things, but I don’t really remember things such as our wedding day. It feels strange looking at the photos. I know I was there and had a great time, but I 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 overweight at 15 stone 3 pounds; 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. Avoiding alcohol made no 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 local job.

“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. I've 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.”

Since this interview, Mark has had an operation to remove his left temporal lobe – the part of his brain that was involved in his seizures. The operation was a success and he has not had a seizure since. Although he knows this might not be a permanent solution to his condition, Mark hopes that things stay the way they are now.

Read about epilepsy treatment, including surgery.