What it feels like…living with epilepsy

By Mark McDonagh, Cheshire.

I thought I knew all about epilepsy before our youngest daughter’s diagnosis.

I had done lots of first aid training, had helped someone having a seizure and I thought I understood it all. I thought it was straightforward and posed little risk and only caused a small disruption to every day living.

I couldn’t have been more wrong.

There are so many different types of seizure, so many different outcomes, so many different conditions involved. Many of these have a huge effect on daily living and some pose grave risks to the people experiencing them.

When we first realised our daughter was having seizures there was a sadness but also an understanding as we knew she was high risk for developing epilepsy due to her stroke before birth.

Knowing that it might come didn’t make living with it any easier though and watching her have a seizure is heart-breaking. I always feel so helpless and she seems so alone.

I coach myself that she isn’t aware and it’s not hurting her but my instincts tell me different and I want so badly to take it away from her.

The day of her first big seizure was one of the worst experiences of my life, we both thought we were losing her and the wait for the ambulance seemed to take forever.

As with her other conditions I began to research the topic and immediately realised that I had dramatically underestimated the condition.

When I first read about Status Seizures (our daughter has these every few months), I was horrified, I had never considered that epilepsy could take our daughter away from us and I went into a spiral of anxiety and depression.

I couldn’t sleep at night, even with her in our bed (which became the norm), I spent the day looking in more and more detail at the condition, its effects and any treatments.

The range of drugs was bewildering and the fact that there is little or no understanding of how they work was even more so. The surgical intervention of removing half the brain seemed barbaric; I didn’t know how to cope and searching for more information had become an obsession that was not helping me at all.

Luckily, someone suggested the Muir Maxwell Trust and after a short wait, they sent out an epilepsy alarm; bed monitor that changed my life!

I found the knowledge that the alarm would wake me up in the event of a seizure allowed me to sleep properly for the first time since my daughters diagnosis.

Having proper sleep allowed me to manage the anxiety levels caused by the epilepsy in general and I finally became a normal human being again.

Without the epilepsy alarm I simply don’t know how I would have coped. The monitor will never replace vigilance or remove all anxiety but it is a vital support to keep parents functioning and providing for their children.

For support and information if your family receives an epilepsy diagnosis, please visit the Muir Maxwell Trust, a paediatric epilepsy charity based in Scotland and working throughout the UK.