Real Lives

Accounts of being a teenager with epilepsy

Katie

I was only nine when I had my first seizure and I’d never heard of epilepsy. My Mum insisted I see an epilepsy specialist as my behaviour on the medication I was prescribed was so out of character that she knew the drugs were the cause of it. I now take newer anti-epilepsy medications to control my condition. Now instead of having up to 15 seizures a day I have one or two a year, when I’ve got a cold or feeling a bit under par. I’ve still got a lot to cope with as I get older, for example, I’ll have to be careful with alcohol. I could have a few drinks but I’ll always have to be aware of my limit.

If I got very drunk I could have a seizure. Luckily the drugs I’m on now don’t interfere with the contraceptive pill if I decide to use this in the future.

My advice to other sufferers is not to be ashamed. Get as much information about the condition as possible. Don’t be fobbed off by your GP, demand to see an epilepsy specialist.

Joanna

I had my first seizure when I was 12 which was a difficult time when I had just started high school and wanted to be more independent – going shopping on my own and the cinema and parties with my friends. It was difficult for my parents too – to set their mind at rest they gave all my teachers a sheet about what to do if I had a seizure and I started wearing a ‘Medic Alert’ bracelet explaining my epilepsy and a number to ring. The epilepsy and the medication have affected my short and long term memory and I felt like instead of revision, I had to learn everything all over again for my GCSEs – I’m now studying art and design and hoping to study graphics at university.  

Jane

I was convinced that if I ever had an orgasm, I’d bring on some sort of seizure. If you are worried about experiencing a seizure while having sex, take a huge load off your shoulders and mention it to a person close to you and your partner if you have one. A couple of times when I’ve found it hard to say things, I’ve handed over a piece of paper instead – its all plain sailing from there!

Contact with other people who have epilepsy will work wonders for your confidence and self esteem. I did a bit of volunteering work at an epilepsy charity and it was there that after years of what felt like complete isolation, a girl came up to me and said “Do you have it too?”

Anna

When I was a teenager, I was given the medication sodium valproate and suffered the symptoms of polycystic ovary syndrome – acne, weight gain, irregular periods, and the side effects have got worse as I have got older. I think you should be told in your teens how the drugs you are on could affect you. Now, at age 27, the process of changing medication could affect my job if I experience breakthrough seizures. It would have been so much easier to change treatments when I was a teenager at home with the support of my family. I wish I knew then what I know now.

Janet

I would like to stress to teenagers with epilepsy, please stop and consider contraceptives before you take the chance of becoming pregnant - life as a teenager is difficult enough as it is without this possibility. It is so important that you speak to your GP about your anti-convulsant medication and contraceptives, as some do not work together.

If you want to watch, listen to and read more about young people talking about their experiences of living with epilepsy, visit the youthhealthtalk website.