Epilepsy and I.

We have a weird relationship, Epilepsy and I – it’s been off and on again. First diagnosed when I was 20 (one month before my 21st, standard) with Stress Induced Nocturnal Epilepsy after having a grand mal in my sleep on the sofa. I was on medication for a year and a half, these turned me in to a walking, talking zombie for the majority of the time. As I went on I decided to come off of the medication, due to not suffering any other episodes.

Fast forward 7 years, just left my fiance of 5 years, moving back in with my mum, step dad and sister with the dogs, I started having blank periods. I had no idea they were happening, or if I did I didn’t want to admit it happening. After suffering from these for 2 years, they became more frequent, people were noticing, I was noticing. My car had broken down and whilst I waited for the AA my mum drove by with my sister in the car, I was talking to them and had an ‘episode’ (my eyes rolled around my head, lips smacking, no idea what was going on). That was the last time I drove a car. The next day, my mum gave me a lift to work as my car was dead to the world, turned to me “Babe, it’s happened again. You’ve got to go to the dr’s”. Sitting in Sainsbury’s cafe, crying, having just booked a GP appointment (though one good thing that came out of that trip was my mum finally had avocado on toast and loved it!!). 2 hours later I was sitting in the GP office being told I won’t be driving until a neurologist sees me and signs me off.

The first lot of EEG’s

Now 9 months later I’ve been diagnosed with focal onset impaired awareness seizures; part of my temporal lobe has calcified and I won’t be driving again. I even held off selling my car for 7 months, as that was admitting defeat. When the new owner came to pick up my car was such a hard day. I stood in my hallway and cried for my loss of independence, I cried because I just felt like a failure. That car was the first thing I ever bought outright, myself and I loved it.

If I’m not being sick from the medications side effects, I’m feeling sick from the auras and subsequent seizures that I have throughout the day. Though, the seizures only last a couple of seconds now rather than the 15-30 seconds they were lasting before, so this lot of medication is helping somewhat – though the side effect of my nails falling off is less than fun…

I know people say ‘it could be worse’, well it could be a lot bloody better as well!