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of everyone affected by epilepsy


I was diagnosed with Juvenile Absence Epilepsy when I was 12. I had, for a long time before this, been told that I was a day-dreamer and never paid attention. Turned out it wasn't daydreams but seizures! My mum took me to the doctors and they referred me to the local hospital with a thought it might be epilepsy. The paediatric consultant told me to not be ridiculous and no one over the age of five has absence epilepsy. My mum asked for a second opinion and we were sent to the Evelina Children's hospital. Even before my first appointment with them they had organised an EEG at King's College Hospital. They made me blow on a windmill while counting, and I kept stopping and couldn't remember where I was! The Epilepsy Specialist at the Evelina said it most definitely was Epilepsy, and again induced a number of seizures by making me hyperventilate. A part of me was relieved that I wasn't making up and I could be treated, but when they started talking to me about medications I was terrified. I was eventually put on Sodium Valproate and was extremely anxious about side effects. My seizures went from 200 a day to nothing, until three years later when I had a Tonic Clonic seizure at my friend's house. I was absolutely mortified, being fifteen and having collapsed into my fishfingers and wet myself. But I pretended I wasn't bothered and carried on!

When I was 16 I dropped out of school with anxiety and depression and ended up in a psychiatric hospital for 6 months. They eventually diagnosed me with factious disorder- using my 'invisible' seizures as evidence to the fact I was pretending I was ill. The consultant said 'you keep telling nurses you're having seizures but we can see you're not'. This was the worst feeling in the world and I got more and more ill and ended up in another unit for a year. I realised most doctors don't even understand there's more than one type of seizure, so no wonder none of my friends understood when I spoke about my illness. But it needs to become apparent to people that there's more than one time of seizure- and all are equally distressing!

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