I was first diagnosed with epilepsy ten years ago, when I was eight years old. I was having absence seizures at the time. I was put on Epilim but my seizures just got worse, so in addition to the Epilim I was put on Zarontin. This turned out to be the wrong medication because it provoked tonic clonic seizures. I came off the Zarontin but my tonic clonic seizures continued and so did my absence seizures.

My medication had loads of side effects: I felt sick, I put on weight and I felt so drowsy all the time, which affected my schoolwork. I would often just get home from school at about quarter to four, flop down on the sofa and just sleep until about seven o'clock. Of course, this ended up just making the problem worse because it meant I couldn't sleep at night, so when I got up in the morning I would have a tonic clonic seizure due to lack of sleep.

On average I was having tonic clonic seizures at least once a week, and apparently having absence seizures on and off throughout the day. I can remember one time I had a tonic clonic seizure at school. I was about nine or ten years old, and we were in assembly listening to the teacher reading a story. When I woke up I didn't realise what had happened at first and I couldn't think where I'd been for the last few minutes. My head was aching, my tongue was sore (I bite my tongue during a seizure) I felt groggy and confused and everything seemed to be spinning round. Most of the other children were staring round at me. Some looked shocked, others very frightened. My friend who was sitting next to me said that I had cried out, had gone stiff and every part of my body started shaking uncontrollably. Luckily I was sitting down at the time of the seizure, so hadn't fallen backwards and banged my head on anything.

When I have a tonic clonic seizure I remember after a while what happened before the seizure and what happened afterwards, but I lose consciousness during the seizure so I'm never aware of anything happening in between. When I wake up I'm usually tired and aching for the rest of the day and can't really motivate myself to go and do anything.

Most of the children were OK about my seizure once they had calmed down but some were scared to play with me at breaktime after that, in case it happened again. I've heard it is frightening to watch, especially for a small child. There were times though that I knew I was "different" to the other children and sometimes I felt singled out. I sometimes felt isolated, because I didn't know anybody else who had epilepsy who I could chat to about it. My school teacher, my family and most of my friends were very supportive towards me, which helped me a lot, but I feel that its sometimes difficult for them to really understand what its like if they haven't been through it themselves.

Just before I started at secondary school I started on new medication and my seizures stopped. When I hadn't had any seizures for two years, they started slowly bringing me off my medication. Even when it got to the point where I wasn't taking any at all any more, my seizures didn't return. A year after that, with still no seizures, I was discharged from the hospital.

I was seizure free for five years in total, from when I was 11 to when I was 16. It was a big relief because I didn't have to go around worrying about it all the time. I could be myself more. I became more independent; my mum wasn't as protective of me as she had been previously.

In October 2003, I went on a week's holiday with my family (to Pisa in Italy, we had a lovely time) and we got a late flight back in the middle of the night. I went straight to bed when we got in, but at about 9.00 am I woke up with a spinning headache and my mum was standing over my bed. She said during my sleep I'd had a tonic clonic seizure which was probably due to a disturbed sleep pattern. Following that, every morning when I've had to little sleep or a disturbed sleep pattern I have a seizure. I do sometimes have absence seizures but they don't happen very often, as far as I know, and they don't really bother me that much. We asked my neurologist why my epilepsy had come back after five years, but he said at the moment theres no logical answer to that question. On a more positive note, I never have tonic clonic seizures during the day any more, so nobody at college has ever seen me have one. They only happen first thing in the morning within an hour of waking. I decided to go back on medication because I wanted to learn to drive.

Three months ago I started having myoclonic seizures as well. I'd get twitches of an arm, or of one of my legs; it was like an involuntary movement. It didn't really bother me at first because it was only happening very ocasionally, say once a month. Then I started having seizures that affected my whole body. They usually occur at college, I think its stress related. My arms go right up for a second, I sometimes drop my pen or anything else that I'm holding, and I'm thrown back in my chair. The first time I had a really major one, I was really shocked. I was sitting in class, listening to what was being said, and it hit me suddenly. It's like an electric shock. I was thrown back and I instinctively grabbed hold of the person next to me, just to stop myself. Other students laughed at me, finding it funny, because they didn't realise what had happened. I became upset and had to leave the room, accompanied by my tutor. I had a chat with her about it and she came back on her own and explained to the other students about my seizures. She said I can't help it and that it doesnt do me any good when people draw attention to it. So she told them to take no notice of my seizures: to not stare or laugh or comment on it.

I have to think about my health and safety as well. Sometimes when I have really violent myoclonic seizures I topple over backwards on my chair. I have to make sure that I'm sitting in places where there isnt a wall, or a bookshelf, or something else behind me that I could bash my head on if I go back. It's really embarassing sometimes and it must be disruptive for other students. Say you're sitting there trying to get on with your work, or listen to what the teacher is saying, and the girl opposite you keeps jumping out of her seat every 5 minutes, for no obvious reason. I try not to worry about it though, as that increases the frequency and severity of the seizures. My medication is not particularly effective against my seizures (sometimes I can have up to 30 or 40 seizures a day) but we're working on it.

If you have epilepsy, one of the best pieces of advice I can give to you is to let people who you spend a lot of time with know about it. Especially if you have uncontrolled epilepsy like I do, and you have seizures very frequently. If people who are with you don't know whats happening they can react in the wrong way, as I've described above, eg you having jerks and people laughing at you, or people telling you off because they think you're doing it on purpose. Or if you have a tonic clonic seizure people may panic and think there is need for medical attention when there is not.

I worry about times when I have to be in places where people don't know me and how they will respond to my seizures if I have one. However, I'm not just going to hide away from life. I feel that those of us who have epilepsy should not let it control us. We need to get on with everyday things and not try not to let it hold us back. Thanks for taking the time to read this.