I have photosensitive epilepsy

I have photosensitive epilepsy. I remember going for the EEG tests in hospital to confirm this, which I hated.

They would glue all these wires to my body and head so they could scan and check what’s going on. The worst one for me was when they put a huge light in front of my face and it started flashing loads of lights in different sequences. This obviously freaked me out because I thought I would have a seizure. I didn’t that time. However, when the EEG was over I got up and went to the toilet. I had to keep the door unlocked just in case anything happened and while I was washing my hands I collapsed and hit my head.

About every 6 months I was having EEG scans. This was to see if seizure activity in my brain would occur under different circumstances. I had some done while I was awake, some while I was asleep and I’d have ones with different images and lights flashing up in front of my face. When they did an EEG with flashing lights and I had a seizure, it gave the hospital clear results that it was flashing lights which were triggering my abnormal brain activity.

Since being diagnosed with epilepsy and finding out it was flashing lights which were triggering my seizures, I have had to make some changes in my life. Things like not being able to watch 4D films at the cinema anymore, avoiding strobe lights and avoiding anything that stimulates too many of my senses, as this can make me feel dizzy. When I went on holiday to Disneyland, I was restricted by some of the rides I could go on because of the strobe lights.

It can be frustrating not being able to go on rides or watch a new film out at the cinema because they involve strobe lights, but after a while you get used to having restrictions in your life. At the end of the day I could potentially put myself in danger if I didn’t consider the dangers and triggers of my seizures.