Hi, my name is Jess, I’m 17 years old and this is my epilepsy story.
I had my first seizure when I was ten years old in 2012. For years previous I had the symptoms which could have explained my epilepsy: headaches, migraines, dizziness, sickness and occasional forgetfulness. The seizure I mentioned here was massive. It was an absence followed by the loss of consciousness, then I had difficulty breathing. This went on for four hours. My mum was told that if I didn’t wake up I would have to be transferred to another hospital. I woke up eventually, very disorientated and terrified. Because I had no history of seizures I was immediately tested for meningitis, brain tumours, brain haemorrhage and so on. They all came back clear, but it was still a scary process.
After that, I was sent for an EEG at the John Radcliffe Hospital in Oxford, where the results suggested ‘epileptic like tendencies’ but as I had only had one seizure I wasn’t officially diagnosed. I still continued to have migraines and headaches for the next two years.
In January 2015, it had been two-and-a-half years without a seizure but then all of sudden I had a tonic clonic. I didn’t think I was ever going to have a seizure again but then I suppose with puberty hitting and my mum being diagnosed with cancer (my mum is doing great now) it was only matter of time before my epilepsy was triggered, a bit like a dormant volcano.
Only this time the seizures never stopped. They peaked when I was 14: I was having a tonic clonic once a week, myoclonics on multiple occasions every morning – when I was getting ready for school (sometimes so bad that my mum had to spoon-feed me my breakfast), on car journeys and during school bus trips due to flickering sunlight through trees.
It was when I was 14 that I had another EEG and because of my characterised seizures, I was eventually diagnosed with photosensitivity along with Juvenile Myoclonic Epilepsy. I was medicated with Lamotrigine, for about six months but that wasn’t working so I was moved to Levitiracetum in 2016 which started to work.
I still had seizures up until October 2017 but that was partly because I wasn’t adjusting well to taking medication. By that point, I hadn’t been taking it properly, as I just wanted to be normal. It is only now that I realise how incredibly stupid, dangerous and contradictory I was being.
Now at the age of 17, I take my medication religiously and I have now been a whole year without a seizure. I am looking forward to the next stage of my life, confident that I won’t have any more.
I have been inspired to share my story after watching Young Epilepsy’s appeal video on absence seizures. I have a history of absent seizures and I know how hard they are to spot. I don’t actually know how many I have had and that is why I didn’t mention them earlier.
When I was younger, I had been picked on for being ‘forgetful’, ‘ditsy’ and a ‘day dreamer’. Particularly at secondary school, I sometimes looked a bit disengaged during lessons. Perhaps these were due the absences. I hope you find my story helpful in raising the awareness of epilepsy, particularly amongst older children and teenagers.
Have you experienced something similar? Tell us your story below.