Personal Stories

Getting the Balance Right

05 March 2012
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 I have had epilepsy for the past ten years. It was my 12th birthday when I got my first seizure and although I cannot remember it, my family can. I was standing by the television about to put a tape in to record "Home and Away", (something I would never miss!), when it happened. I can only remember my hands going stiff.

My sister got quite a fright but my mother believed it to be an epileptic seizure as her brother had epilepsy. When I came round I was annoyed that everyone was crowding me. I needed time to come to terms with what had happened. I was so tired that I did nothing for the rest of that weekend but on Monday morning I had to go to the hospital for tests. I remember doing a lot of tests and then I was put on Epilim. I was fine for about the next five years.

I was at the hospital for one of my checkups when my mother told the doctor that she had noticed my hands jerking and I was in a daze, especially in the mornings. The doctor booked me in for a sleep deprived EEG. I heard nothing abut the results of my scan for a long time, so I thought that everything was OK. About four months after that scan, I was getting up one Saturday morning to do a trial day in one of the hairdressing salons in town, when I remember my sister passing by the door and telling me I was after having a seizure I couldn't believe it and I won't repeat what I said to her!

I eventually heard the results from the sleep EEG were abnormal. The consultant decided to change my medication. I was so scared in case something would happen because he also said the dosage was to be increased. He told me one of the side effects of the medication would cause my weight to increase. I was never a small girl and when I started the new medication my weight went up and up and up! I will admit I did not have the healthiest diet in the world, so I decided to join Weightwatchers and although I lost a stone and a half, I soon lost interest in going and I put all the weight up again.

I started a college course in computers after doing my Leaving Cert. I enjoyed the course and I also got a part time job in the local late-night pharmacy. The job was ideal as I was working 6 to 10 four nights a week and Sunday 10 till 10. It was tough going but I got on with it - I had to make money.

When I finished my course I started working full-time. One night I was out celebrating with my friend Katrina and I met one of her brother's friends, John, I had met him before and I liked him but I was too shy to talk to him. Soon after though, John and myself got together (thanks Kieran and Katrina). I really started looking after myself properly but I was afraid that he would think I was a freak and run. I told him one night when we were on the way home from the cinema and he was very understanding but I could see that he got a fright. I thought that I had seen the end of him, but thankfully he stayed around.

When John went to Australia for three months, I missed him so much. When he came home I was delighted but I had put a lot of weight on and I was finding it hard to lose it. John was a great support whenever we were out. I could see that he was looking out for me. I got a new job in Kelly's Pharmacy in Middleton and it was only then that I started to take a serious interest in my epilepsy. I started reading books on epilepsy and learning about the medications and what could trigger seizures. Of course I also met a lot of people with epilepsy in the pharmacy.

Everything was going well until June 2009. I was excited getting ready for my sister's wedding; she is my only sister and the first in the house to get married so it was going to be something special! I had started to get forgetful with my medication - I thought I had grown out of the epilepsy, but I was wrong.

The week before the hen party, one of my friends came to my house and we had a few drinks. I had taken my tablets and I was feeling fine but the next morning I began to feel funny in the shower. I remember putting my hand up on the wall and feeling "light headed". I came out of the shower and I took my tablets but my hands started jerking and I knew what was happening.

When I came around I was in bed and my mother was sitting by my side and my sister was standing at the door. I called John and told him that I was after having a seizure. I was so afraid that he would run from me as it was my first time to have a seizure since we started dating. He just said okay but I think he was in shock. I knew that he would not ask me anything, and I knew that he would not come up to see me that day. I think he needed time to adjust to it and although he denied it, I understood.

On that Saturday night, John came up and we went for a spin. It was great to get out of the house with someone who was not going to annoy me, not keep asking if I was OK. When I went for my next check up, my medication was increased again. My sister's hen party went ahead as planned. We were going on a boat trip and then out for a meal, followed by drinks. It was a great night! John called me before I went out and when I was back in the hotel, I sent him a message letting him know that I was OK and heading to bed. He called me almost straight away, making sure that I was okay. The next few months went well. I was healthy and Anne Marie's wedding went off without a hitch. She was delighted and we all had a great night. I didn't drink - I didn't want to tempt fate. I was looking after myself and taking my medication on time, making sure not to miss a dose.

I went to the consultant for my check-up recently and I met a lovely doctor. She went through everything with me and she really opened my eyes about children. I am only 22 and having children is the last thing on my mind but she asked if I was taking my medication and if I was taking folic acid. I was put on folic acid at the same time I was put on the Epilim but I had not taken it in months. I am not planning on getting pregnant any time soon so I didn't see the point in taking it. She told me the risks of not taking it, and what would happen if I did get pregnant.

My message to all young people with epilepsy is learn from my experience. I wrongly presumed I was cured. I was gradually increasing my drinking and I was asking for trouble. I hope that my story can help young people and anyone who has epilepsy. I would have loved to have someone at the end of the phone who was not a doctor, someone who was just a person like me with epilepsy.

At the end of the day, only we know what we are going through, so if anyone would like to talk to me, they can get in touch via Brainwave. I would like to thank John, for all his support in the last few months, for bringing me to the doctor and waiting patiently for me, for taking care of me and making sure I am not drinking.

A big thanks also to my family and all my friends. A special thank you to Dr Evelyn McGrath and all the staff at her surgery and also thank you to the staff of Kelly's pharmacy who have given me information and been so kind to me over the last few months.

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