My experience of epilepsy and anxiety

I was diagnosed with epilepsy at a very young age. As I grew up and learned to deal with my epilepsy, the impact on my mental wellbeing was something that I never even really considered. At least not until suddenly, out of nowhere, it’s something that I was dealing with.

My epilepsy has always been on a general upward trajectory, even if there have been dips here and there. As medications have been adjusted, my epilepsy has gradually improved over the years. It was only after the worst dip my epilepsy has ever had that anxiety came crashing into my life.

My seizures went from clusters (having lots of seizures over a day) every 6-7 weeks,  to happening every day or every other day. I was spending my life just lying on my living room floor unable to really move, and not really wanting to, for fear that I would seize and injure myself. I was scared to go out and terrified of public transport. I worried the few days I did go into work that I was going to have a seizure there.

And so, came the panic attacks. The first one I had, I didn’t really know what was happening to me, I just knew that I couldn’t breathe and that I was terrified. Stress has always been a trigger for my seizures so that didn’t help.

I found myself in a vicious cycle. I’d get anxious because I was having myoclonic jerks, then when the jerks became worse because of the anxiety that made the anxiety worse, which in turn made the jerks worse. This was happening over and over until I got to a point where I thought I was about to start seizing and I would go into full panic mode. This was made worse when my contract at work wasn’t renewed because I was taking too much time off sick.

After my second panic attack my mum encouraged me to go to see a psychotherapist. This psychotherapist was absolutely amazing.  She took me through a course of CBT (Cognitive Behavioural Therapy), which focussed on scenarios around my seizures. She also helped me with general stress management and I don’t really find have to worry about stress being a trigger anymore. The support helped me to sleep better too.

Anxiety can be really hard to manage but there are definitely ways to cope. I’m definitely a talker, and I found talking things through with people outside of the situation really beneficial. I’m so glad my mum encouraged me to get support. It felt a bit strange initially but it’s been so helpful. I’ve got used to taking steps to overcome situations, and learnt how to stop my thought processes as they were happening. Relaxation techniques have also really helped me to be less stressed overall.

Learning how to manage and cope with anxiety brought on by epilepsy is tricky, but I found taking it one step at a time and learning how to be OK with asking for help were my first steps to managing it. When my seizures break from their usual pattern, my anxiety still sometimes comes back, but I now have the tools to cope.