Epilepsy is more than just seizures. / by Amy Frost

I've been wanting to write something about epilepsy for a while, but I've not really had the confidence. However, I'm going to bite the bullet and have a try. Please bare in mind, this is just my opinion based on my experience, and I know others may vary. 

I started having epileptic seizures around 11 years old, yet I wasn't diagnosed until I was 18. It is a misunderstood condition, even to some health professionals. Many people believe epilepsy is just having seizures, however there is more to it than that. It affects people in different ways, as there are so many different types of epilepsy it's hard to pin point a few, but some of the most common are; 

  • Anxiety
  • Depression
  • Memory Problems 
  • Insomnia
  • Concentration Issues

I have experienced all of the above, and still do to this day. The memory problems are probably the worst part for me, as I struggle to remember a lot of my childhood. I was once told by my doctor that essentially whenever I have a seizure, a part of my memory is erased, and I've had a lot of seizures. This made it especially hard to learn new things, I would learn something, have a seizure and boom it would be gone, then other times it wasn't. It made it very frustrating. As an artist I have to re-teach myself simple things all the time, and I've found as I've gotten older, it's harder to learn something new, this is probably also because of my concentration issues. 

It's no surprise to me that I developed Insomnia. I started at 11 having only sleep seizures, which meant every time I went to sleep there was a risk of having a seizure, so of course I began to fear going to sleep. Only in recent years have I started having awake seizures too. But the fear still remains. 

Although nowadays my seizures are pretty well controlled (for now), they are triggered by stress and tiredness. My anxiety doesn't help with this, nor does my insomnia, and I have to be careful because I seem to get tired easier than other people. This is apparently a known side-effect of my medication! This often gets in the way of when I have a job, as I struggle to work the normal 8 hours, and I can't manage full time hours. I need regular breaks, or I can have a seizure, and I have done in the past. In my experience, not many of my employers liked this, and so now I have a bit of a bad rep with them! 

Of course this is just my experience and experiences vary and thankfully some things seem to be improving, such as support for people with invisible disabilities, so onwards and upwards!