When Janet found out she had epilepsy at the age of 14, she thought her life was over. She couldn’t go to parties or ride her bike, dropped out of school and lost full weeks of her life in a series of seizures and unconsciousness. Now, 25 years on, she’s got her epilepsy under control, put herself through college and runs her own successful accounting business. Maire Bonheim spoke to Janet from Bognor Regis in West Sussex, to find out how getting her epilepsy under control turned her life around.

In the UK, there are more than 80,000 people living with epileptic seizures – but most could be seizure free with the correct treatment. A new Take Control campaign launched by Epilepsy Action is urging patients to take a look at their quality of life and discuss their epilepsy with a GP to make sure that they are receiving the most appropriate treatment.

How did you discover you had epilepsy?

I had a major seizure when I was 14 so I was diagnosed from that, but it turned out I had been having smaller seizures leading up to it that hadn’t been recognised. There are so many different types of epilepsy and each one has its own characteristics. It can be very mild, just having mild absences where you can still be functioning but your mind’s not there, and I used to have those as well. Or it can be right through to full blown losing consciousness and shaking.

What happens to you when you have a seizure?

I don’t have them any more because the medication controls it, so it’s a long time ago now, but I used to lose consciousness and have the shakes. Afterwards, I used to feel very drained, and for a while after I came around I’d be functioning but I wouldn’t have any awareness and I couldn’t actually remember anything of it. So I’d lose hours of consciousness each time I had a fit. At one point the medication they put me on was completely wrong and I was having up to 8 fits a day. I’ve always kept a diary, and there were three weeks that were completely blank because I had no awareness at all in that time. If I’d just accepted that I would have carried on taking that medication and not having a life at all. But we kept working with the neurologist and managed to get a cocktail of drugs that stabilise it and it’s made such a difference.

It must have been really difficult being so young?

It was. Twenty odd years ago there wasn’t the awareness and the help that there is now. I was given the diagnosis and left to get on with it, so I figured my life was over and I felt like giving up really. It did mess up my teenage years and schooling. My mum looked after me most of the time, I couldn’t go out on my own and I couldn’t go out on the roads on my bike. I also couldn’t do normal teenage things like going to parties because I couldn’t handle loud noise or crowds of people. So I just spent my life at home really.

At school I couldn’t concentrate and missed large chunks of my A level years where I was too ill to go to school or was in the sick room. I ended up dropping out half way through my A levels, got a job in a shop and got married at 18. It’s only over the years where I’ve been staying in touch with the doctors and going to see the neurologist and having regular updates and checks that I’ve got my life back really.

What are the side effects?

Once your epilepsy is under control, it’s the side effects of the drugs that are difficult. I lose my balance and fall over sideways, drop things, gain weight, get headaches, have poor memory and my hair stopped growing and got really thin. Also, the drugs I was taking while I was pregnant had an effect on my children, my two youngest especially. They’ve got medical problems but they’ve also got emotional and behavioural ones, Asperger’s Syndrome [a type of autism] and things like that.

Do your children understand what’s going on?

My oldest do, they have only been affected mildly. But my two youngest are 8 and 9 and the 9 year old has Asperger’s so he’s more or less in his own world anyway, and the 8 year old has a very poor working memory and his understanding is lower than his age. So I’ve not really been able to explain anything to them.

Was that your doctor’s fault?

I think it was just that there wasn’t enough awareness. I wouldn’t say it’s the doctor’s fault because doctors can only tell you what they’re told and I’ve always found them to be very helpful. I went to the neurologist 4 years ago and found that the side effects I have will steadily get worse, so I’ve now started trying to wean myself off one of the drugs so I can minimise the side effects as much as possible but still control the epilepsy.

Understanding Epilepsy

What do you think is the biggest misconception about epilepsy?

When I was first diagnosed, I was told I was epileptic and I thought I was disabled and my life was over. It would have been very easy to accept that and give up. Initially it was like that for me, but I’ve worked hard and completely turned that around. I think that shows that your life doesn’t have to end, and I really want people to know that they shouldn’t give up. I’m remarried now, I’ve brought up 5 children, I’m on the committee for several support groups, I’ve put myself through college and I now have my own accounting business that I run from home so I can work around my children. You do have to be sensible though – you can’t pretend its not there. I’m not going to go climbing any ladders!

What would people be surprised to know about epilepsy?

People would be surprised to know how common it is. I know I was, because epilepsy is not really talked about, it’s almost taboo. Years ago it was classed as a mental illness and I think some people still think that. You probably know more people with epilepsy than you realise.

I think people would also be surprised that you can actually have a normal day to day life with it, and do normal everyday things.

Have you ever had any negative experiences with people who don’t know about epilepsy?

I have. When I used to work in a retail warehouse I used to get comments, because people can be very cruel if they don’t understand. For example, I remember talking to a customer one day and he made a comment about how if he saw someone lying on the floor shaking he’d know it was me. He was trying to make a joke but it hurt. So you do get the odd negative but I think it’s when people don’t understand.

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