Wednesday, 27 July 2016

I Have Epilepsy

Last September, I had my first seizure. I was between chemotherapy and radiotherapy, and was taking a few different medications, so it was put down to that, and after a brain MRI I continued as normal.

I was given the fantastic opportunity of a 4 day sailing trip off the Isle of Wight with the Ellen MacArthur Cancer Trust, something that was first mentioned to me last year that I was very excited about. I travelled down to the Isle of Wight last Monday, and went to bed on the boat that night.

At 1am I got up to use the toilet. As I stood washing my hands I could feel myself twitching, and I was struggling to control my hands. I turned to walk back to bed, and then everything went black. I then had a seizure on the bed for around 3 and a half minutes. I had no idea that had happened, because I was so tired after a long day travelling, so I thought I had gone back to sleep. The girl I was sharing the cabin with went and got the skipper of the boat, who then got the doctor who was on the trip with us, who woke me (I fell asleep after the seizure) and told me what had happened. I was aware someone was talking to me, but I didn't know what they were saying. Apparently I was talking nonsense. I'd bitten my tongue badly down one side, and it had swollen so much I sounded like I had a lisp. I was taken to A&E where they observed me for a few hours, before letting me leave. I then collected my things off the boat, and headed back to Southampton where my parents picked me up.

The day after I got home I went to my GP, before seeing a Neurology consultant, who asked for a description of both fits, as well as the twitching. He told me I would need an EEG, a brain MRI, and said I had juvenile myoclonic epilepsy. I was given a prescription for medication to start straight away. 

Epilepsy can usually be well controlled with medication, and my Mum is a prime example of that, having epilepsy herself and not having had a seizure in over 20 years. I think the timing of this is adding to the fear and loss of confidence as I had been slowly building myself back up. Although my Mum has the condition, I knew very little about epilepsy, which I don't think helps with trying to get past the fear factor. I know more now, and triggers that could make a seizure more likely, such as drinking, being sleep deprived or having low blood sugar.

After I was told I'd had a seizure, I knew that I wouldn't be driving for a year. I'm pretty gutted, I'd 
only held my license for a month and it had then been taken away from me. I've also been told not to swim or cycle, while we see if the medication is effective or not. I'm thinking positive and hoping it will, as my condition is not severe as I had 2 fits in 10 months; I've heard other people can have several every day.

This wasn't something I was expecting to happen, but I suppose a lot of things are unexpected. I'm sure in a few weeks when I have my confidence back in doing things alone, I'll be in a much more positive frame of mind.