I had my first fit at a netball match when I was 13. I remember seeing flashing brightly coloured prisms which grew stronger and stronger in my left eye before I collapsed into a tonic clonic seizure. After that it happened multiple times.
The doctors in the small town where my parents lived were useless and said I was fainting - I clearly wasn’t - but my parents trusted them. Another doc said it was migraines, but migraines don’t make you have tonic clonic seizures. A third diagnosed anxiety.
They continued into my 20s, peaking when I was 25. I’d always see the same brightly coloured lights (which terrified me) before collapsing. I was shifting at national newspapers at the time and lost count of the number of times I woke up on the newsroom floor unable to remember anything. But, after having fits on a fortnightly basis, I pushed for a diagnosis.
It was 13 years since they’d started when I was given topimirate and it worked instantly. I was delighted. Finally I could do the job I wanted and go out without being afraid.
For nine years I was seizure free until March 2018, after a period of stress they returned albeit to a lesser scale. A dose increase saw it become controlled again but in January I started having severe focal seizures - which have effectively left me housebound for five months - and was formally diagnosed with occipital lobe epilepsy. I did some maths and the probability of me having this (it’s a rare type) and it continuing into adulthood (it is usually self limiting) is 0.0028 percent.
It took me 21 years to get properly diagnosed, multiple seizures, injuries and numerous trips to hospital. It beggars belief no one said, “Do you think this could be epilepsy?” I hope in the years since I was little there’s better knowledge of it as it could have been controlled a lot sooner.