MY HEALTH EXPERIENCE: DECLAN KEELY
LOOKING BACK I probably had epilepsy since childhood. At school I would be daydreaming during class and the teachers were asking my brother what was causing it, had I been up late.
But it was probably “petit mal” epilepsy where I would zone out for a minute and it would look like I was just thinking about something.
I started working for the health service after I left school and the people I was working with would drop hints that something wasn’t right, but I didn’t take it that seriously.
I did eventually go to see a neurologist and I went on medication, but they said not to worry about it.
Then about 11 or 12 years ago, things took a dramatic turn. I’d be sitting there and I would suddenly say: “I have to get out of here”, and I would get up and run. Then I’d have no memory of it.
I could be at home, in the car or walking down the road and I’d take off. There was no warning of a seizure so I couldn’t tip off anyone. I’d just go, and I’d be jumping over desks or anything in my way.
I’d run out onto the road and I ended up being hit by cars on a couple of occasions, or I’d have burns on my hands and to this day I have no clue how I got them.
At one stage I was living in America and we were staying on the fourth floor of an apartment building. The seizures were getting pretty bad by now and I was getting out at night, so we put locks on the doors, but we never thought to put a lock on the balcony door.
I was coming home from work one day and I just didn’t feel right, so I went to bed. The next thing I knew I was down in the garden, but the door had been locked, so I had actually gone over the balcony and four floors down, then just got up and walked away.
There were people living below us and they had been sitting there watching the TV and drinking coffee, saying: “Did you see that?”
At the time I was in frontline administration in the local emergency room in Chicago and when the ambulance arrived they all knew me. I told them I hadn’t injured myself badly, but the guys were saying I fell 40ft and they needed to check me out. So they did MRIs and CT scans, but they couldn’t find anything.
I came home to Ireland and I started working in administration in a GP practice. I didn’t tell them I had epilepsy, but they found out the hard way when I decided to take off out the door one day.
I wasn’t driving and I’d take the train to work. One evening I was coming home and I woke up to find myself on the railway tracks some distance from the station.
There was a Dart coming down the line, so I ran back to the platform and at the same time the train I was waiting for was pulling in, so I ran over the footbridge and on to the train. I must have looked like I was on the run.
The things I used to get up to were the greatest source of entertainment, but also the greatest source of heart disease in my family. They have been absolutely brilliant to me.
But by this time I had given up on neurologists because it was always just another drug, and with the anti-epileptic drugs sometimes the cure is worse than the disease – you’d be sleeping 18 hours a day or your memory would be gone.
Then I got referred to Dr Colin Doherty at St James’s Hospital. He was extremely clever. He did an MRI scan and he said that I had a lesion on the temporal lobe of my brain. That’s what was causing my seizures and I wasn’t going to respond to any medication.
In America, they think they have the best health service in the world but I had to come back here to be diagnosed.
They removed the left side of my hippocampus in September 2007 and things seemed to go pretty well. I had three months free of seizures.
But then one day I went down to the local shop. I was halfway home and next thing I found myself back in the local shop again – the seizures returned as bad as ever.
So they took out my temporal lobe. I remember waking up in the recovery room and the thing that worried me was that I was going to lose my memory but the surgeon said to me that it was over, this was definitely going to work.
I’m 18 months seizure free now, and still smiling.
National Epilepsy Week runs until May 23rd. See epilepsy.ie
In conversation with
CLAIRE O'CONNELL
EPILEPSY: WHAT IS IT?:
About 35,000 people in Ireland live with epilepsy, a neurological condition characterised by recurring brain seizures.
Of those, about one-third have “difficult-to-control” epilepsy, and 3-5 per cent of people who have epilepsy are photosensitive, so flickering lights may trigger a seizure.
The seizures themselves can be partial or general and the person may experience convulsions, blank stares, rapid blinking or intense emotional and physical sensations.
Sometimes people have epilepsy for a short part of their lives, while it is longer lasting in others.
Diagnosis usually involves a specialist taking a medical history and analysing electrical activity in the brain with an electroencephalogram (EEG).
Treatment may include medication and, in some cases, surgery.
Ireland is playing catch-up when it comes to supporting epilepsy research and patient access to services, according to the voluntary organisation Epilepsy Research Ireland, launched in Dublin yesterday.
Less than €1 million is spent on epilepsy research annually in Ireland and the waiting time for surgical evaluation of patients is at least two years, the organisation stresses.
In addition, fewer than one-fifth of those with difficult-to-control epilepsy are seen in dedicated epilepsy clinics in Ireland, and there are only six adult and four paediatric neurologists in the country with a specific interest in the condition.
