Personal Stories

Growing Up With Epilepsy

13 August 2012
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Until now, like many other people, I haven't spoken much about my epilepsy. I've never been sure how people would react, but having read some of the articles in Epilepsy News, and knowing how they have helped me, I decided I would share my own story with others. Hopefully, it will be of some help to some who are still a bit nervous of sharing their own story.

I was 11 months old when I got the whooping cough and had to have half my lung removed. The following day I had my first seizure and also had a stroke. I lost the power of my left hand side and doctors and nurses thought that I might not walk again. Thankfully, their prediction was wide of the mark and with the help of family members, I'm back on my feet and walking today.

Growing up with epilepsy in my childhood was hard but I felt I had to get on with it and didn't let it get in the way of anything. When I first started primary school I was put on phenobarbitone. I didn't have any tonic-clonic seizures for the first year after I started school but the side effects were a different story.

I didn't seem to know what I was doing some of the time - I could be walking in and out of the room and not remember. Sometimes, my eyes would start to flicker and I would have absence seizures. Because of the side effects of the medication, which were quite severe, I was taken off the tablets but started having seizures again. They've stayed with me to this day.

Like many people with epilepsy, I have a number of different types of seizures. I can have generalised seizures such as absences and tonic clonic seizures, also simple and complex partial seizures. Sometimes I will experience a "warning" (a simple partial seizure) and somehow I feel I can "fight it" and not have the big seizure. This is the best way I can explain it.

After I come around from a seizure, I still find myself saying sorry to those around me even though I know I don't need to or shouldn't have to. People will be polite and say it's ok but I know it's often the opposite. Sometimes, if I'm asked if I drive, I will say that I don't because I haven't taken the theory test. It depends on who is asking I suppose, but I find it hard to say I don't drive because I have epilepsy.

As a past student of the Training For Success course - I did the 2009-2010 term - I can honestly say it was a great year for me. I found the course a great help in many ways especially getting to meet new people who were in the same situation as me.

On one occasion, in April 2010, while on the TFS course, I took a seizure and was brought to the bed in the classroom. The Student Nurse wasn't available to assist with my emergency medication, epistatus (buccal midazolam) and I was brought to Sligo hospital. Staff there gave me a double dose of diazepam which they only had in there to give me. After I was discharged, I have to say my flatmate and the rest of my friends were very good to me and looked after me until my family came from Cavan to Sligo. I had a VNS (Vagal Nerve Stimulator) inserted in 2005 with a ten year battery which changed my life completely but unfortunately the batter ran out in August 2010. I had a three year battery inserted last November.

Since finishing TFS last year, I've undertaken another FAS course in Cavan. I'd love to be working it's very difficult at the moment to find something. Another factor is that often when I apply for a job, I'm asked if I have any health conditions. Saying that I have epilepsy makes it harder to get through the interview, I think.

At the moment, I am taking 12 tablets a day. "Why me?" is something I often find myself asking, but I'm very grateful that I have a wide group of friends and I get a lot of support from the. And I don't know what I would do without my brother and family.

I suppose it is thanks to all this support that I have finally been able to speak out. I'm 23 years old now and if I could give young people reading this any advice I would say that you need to try to not let your epilepsy get to you. Take each day as it comes.

I hope this helps someone. If anyone would like to get in touch with me please feel free. I can be contacted via Brainwave's Head Office at 01-4557500.

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