Personal Stories

My Journey With Epilepsy

24 February 2011
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My name is Aileen Doyle and I have Epilepsy. The type of epilepsy I have is Frontal Lobe Epilepsy. I first showed symptoms when I was 4 and half years old. My mum says I was eating breakfast with my family when my older brother shouted "What's the matter with Aileen?" My mouth was twitching to the side. At first my mother wasn't sure anything was wrong, but a couple of weeks later I had a full tonic-clonic seizure upstairs.

My mother immediately took me to the doctor who referred me to a doctor at Waterford Regional Hospital. There I was put on the drug Tegretol liquid. Then my mother asked for a referral to see a specialist in Crumlin Children's Hospital. The name of the specialist that I was referred to there was Dr. McMenamin. During the next few years while I was in National School I was well controlled on the Tegretol and I saw Dr. McMenamin once a year.

When I was about 10, I was admitted to Crumlin for monitoring as my seizures were becoming more frequent. The seizures became hard to control and I was put on more medication. This continued when I started Secondary School. Over the next couple of years, I tried different medications to try and control my seizures but they didn't work very well and the side effects were terrible. I was put on more than one medication as well.

When I was in my mid teens, Dr McMenamin suggested that an operation might help. I had to undergo tests and scans to see if I was a candidate for surgery. I was admitted for telemetry, assessments, and various other tests in Beaumont hospital. It was decided that I was indeed a candidate for epilepsy surgery.

I thought I would be called for the operation when I was in Transition Year but unfortunately I was not called until March of my Leaving Cert Year. This did not however prevent me from doing my Leaving Cert and even though I did not pass in all seven subjects, I did pass my Leaving Cert. I was able to achieve this thanks to the kind help I had throughout all my years in the school from my teachers and my classmates.

After the operation I was seizure free for nearly two years and my medication had been reduced a little bit, but then my seizures started to come back gradually. I was referred to Dr Delanty. My condition continued to worsen over the next couple of years and Dr. Delanty tried me on a different number of medications but none of them worked. In 2004 I had the Vagus Nerve Stimulator inserted in the hope that it would help, but unfortunately it did not.

In August of 2004 I started the Training for Success Programme in the Institute of Technology, Sligo and finished it in August 2005. My graduation was in November that year but unfortunately I was called into hospital for some tests the day before my graduation so I could not go to it. I was really disappointed but it couldn't be helped.

In 2007 my neurologist, Dr. Delanty, asked me if I would consider having the frontal lobe operation done again. Before the operation last year I was on 5 anti-epileptic medications but now I am on 4 and have started to decrease another one. As well as the anti-epileptic medications, I am also on a sleeping tablet called nortem, a tablet for the side effects of nausea, vivioptal, and of course folic acid.

Every two months I have to have blood tests done due to the felbamate which is the medication he has started to reduce. I don't mind having this done and it is only every two months. When I first started on the felbamate, I needed to have tests done every week. After a while it was every month and now it is only every two months.

I recently had the generator of the VNS removed at Beaumont hospital. It had never really helped me much anyway.

I am so glad that I decided to have the operation a second time, even if it meant having to go through a good bit of pain for a while. I have been to visit my Neurologist and he is generally pleased with my progress. I think it is very important to stay positive and never give up the fight to gain control.
 

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