Me, Myself and Epilepsy

My name is Gina and I’m an epileptic.

I was a 19 year old college student enjoying a house party when I had my first known seizure. While I was sleeping I had a grand mal seizure. The seizure caused me to bite my tongue, gums and to vomit. An ambulance was called and alcohol was blamed. My second seizure arrived later that day while resting. This time I was taken to the hospital and the usual tests were run but nothing was found. I was in so much pain after the seizures. My muscles hurt, I could hardly walk and I had badly bitten my tongue and gums. I can barely remember anything it was all a blur to me.
After this I gave up alcohol for a year and was an outpatient in the Our Lady of Lourdes Hospital. The seizures continued but were few and far between. Despite this the hospital told me I didn’t have epilepsy and I was checked out. It didn’t make medical sense as to why I was suddenly having seizures and this scared me. After experiencing another bad seizure while in college I was taken to Blanchardstown Hospital where I was told I did have epilepsy but to be properly diagnosed I had to see a specialist in Beaumont hospital. The waiting list was ridiculously long but thankfully I got an appointment in St James Hospital. I was so nervous about the appointment and even though I knew I would be diagnosed I was still devastated when I was. I felt confused, embarrassed and ashamed. I knew very little about epilepsy and I couldn’t understand how I could be epileptic. There was no family history and no explanation to why I was having seizures. The seizures followed no pattern and there seemed to be no rhyme or reason. The uncertainty left me feeling alone and afraid. People reacted differently when I told them and that made me want to hide and to ignore my epilepsy. I tried to forget about it and just get on with my life but ignoring it made me feel ten times worse.

My seizures had started off as irregular grand mal seizures that occurred in my sleep but got progressively worse. I had different types and they became more frequent as I got older. I had grand mal, partial, complex partial and everything in between. Had seizures both in my sleep and when I was awake. I could sense I was going to have a seizure when I was awake. I would have a strange feeling in the pit of my stomach that would take over my whole body and left me feeling like I was losing control over my mind. I would freeze up, look disorientated and smack my lips together. After a seizure I would struggle to go back to “normal”. I had little or no short term memory and it could take anywhere between 15 minutes to an hour for my memory and speech to improve. I would be out for the count for the rest of the day; slow, in pain and upset. I’ve been told by the people who took care of me that straight after a seizure I was pretty funny; acting like a drunk with no clue what was going on, barely able to walk and I went from giddy to cranky at the drop of a hat. Thankfully I have very little memory of this. Over the last few years I have tried different medicines and different dosages but the medicine wasn’t working. It got to the stage where I was tried, stiff and often sore every morning. My energy and concentration levels were dropping, I was moody, angry and depressed. I let the seizure’s take over and I was lost in my own mind. This was a difficult time for my family and friends. They all wanted to help but couldn’t. I often forget that the people who surround me are also affected by my epilepsy and have also gone through anguish and worry. They may not know how I feel but I don’t know how they feel.

After years of trying medicines I went to the epilepsy ward in Beaumont to fully understand my seizures. Despite the cabin fever and the discomfort of having camera’s watching over everyone, it was a good experience as I got to meet people who were going through similar situations. Talking about my epilepsy to other patients gave me a sense of relief and I didn’t feel so alone anymore. I made the mistake of hiding from my epilepsy for years when I should have reached out. I recommend anyone going through similar situations to reach out to Epilepsy Ireland and talk to people who will understand.

After finally learning exactly where my seizures were happening and how to deal with them I made the decision to have surgery. Medicine was not working for me so surgery was the best option.
A year on and I’m seizure free and happier than I’ve been in years. Now I will go and learn how to drive and finally be myself again.