Nothing could have been more surprising than my husband collapsing one morning as he sat at the breakfast table, the day after our youngest son’s first birthday. We didn’t know then what it was, and despite some tests with a consultant neurologist it was to be another eighteen months before we had a diagnosis. In the meantime he had a few ‘funny episodes’ where he would feel like he was having a déjà vu experience and then either seem to faint or somehow fight it but feel very odd. Finally one night we were playing a board game on the living room floor when he started talking nonsense and then keeled over, lying still but making a slight moaning noise. I thought he was dying.
After this he saw the GP and apparently it was the déjà vu part that was the biggest clue to the diagnosis. He was referred to a consultant again and this time he underwent more detailed tests. We were astonished and quite disappointed to discover that he now has epilepsy and will have to live with it forever.
The tests involved a brain scan and again the first one came back normal. He was then told to stay awake all night and have a second one done as tiredness is one of the things that can trigger and episode and the ‘fault’ in the brain’s circuitry is more likely to be detected when the patient is tired. This second scan confirmed that he has epilepsy, although a mild form.
The causes for sudden onset adult epilepsy seem largely unknown, it seems that it can just happen. My husband was knocked off his bike just before the very first episode and although he was fine afterwards, he was not wearing a cycle helmet and took a slight knock to the head. The Consultant thought this may have been the trigger, although we will never really know.
The next step was to find out the long term implications and steps we needed to take. My husband was started on medication, which he was very reluctant to take, and he will have to stay on it for the rest of his life. He started on a tiny dose and is still on a relatively low dose, but so far, 9 months down the line it seems to have completely stopped all symptoms of epilepsy.
The medication makes him a little more tired than previously but otherwise he has had no side effects at all. The biggest impact the epilepsy has had is that he has had to stop driving for 12 months. This has had an enormous effect on us all, as it is simply so inconvenient. He has had to take public transport everywhere and that is not always easy. It also means that I have had to do all of the driving. The real problem though is that it means he feels he has lost some independence, he has to ask for a lift to the station or his destination and this has been a big change in the family dynamic. It has also meant that he has had great difficulty in finding work as all of the jobs in his field are a couple of hours away by public transport. This is temporary though as he should be fit to drive again in a few months time and that will make a great leap back to normality for us all.
Other than that though, the illness has so far had much less impact than we imagined. He was depressed for a few months as the driving ban, medication and diagnosis all kicked in but that has passed now. It has not affected our love life at all. He does get more tired and has to watch his alcohol intake a little more but really that is it. We are just so glad it was diagnosed before he had an episode at the wheel or somewhere else dangerous and glad that it seems to be controlled so well with medication, soon he will be driving again and hopefully life will be as normal as it ever was before.