Epilepsy and how to survive it

I have written before about the fact that I have epilepsy. I have had it since I was eight years old and will, according to my specialist, have to put up with it until the day I die.  It is one of those much misunderstood conditions that attract fear and misunderstanding.  During my youth the fact that  was 'different' did not help me and because I had no confidence I was an easy target for bullies. Although it has to be said that if I had taken the advice I was given by a friend and just ignored things, that would have all gone away. But as they say hindsight is always 20/20.

My first event happened after playing football. I went into the house of the lady I was staying with that day sat down and as far as I recall went to sleep. I woke up several hours later in the local hospital. That was the Saturday before Remembrance Sunday 1978. I spent the next week being poked and prodded and moved about the East Midlands whilst somebody tried to work out what the problem was. It happened again a couple of years later in the car park of the Emerald Isle club in Mansfield. The trigger this time was probably a video arcade game.

This time the doctors decided I had epilepsy and I was put on Epanutin tablets. I had difficulty swallowing them and so ended up on Epilim syrup. I then spent the next couple of years getting by having occasional attacks. I tend to have tonic clonic seizures. One morning I was at home and a doctor came on to Jimmy Young's Radio programme on Radio2 and began to talk about 'photosensitive epilepsy'. At last I now had a name for my condition. Research had shown that flickering lights, sunlight through the trees, tvs, computers could all trigger attacks. Since that day I have had to manage my lifestyle to accommodate these. Over time and with the improvement in technology I use many of these regularly. I still avoid strobe lighting and this has meant I have missed out on going to gigs by my favourite bands. I didn't go to discos and nightclubs.

After a couple of years I came off the medication and was OK apart from minor seizures 'petit mal'. The thing with epilepsy is that once you have it you are prone to have it again. Another of my triggers is stress and tiredness.

I was in the Lower VIth form and one Sunday night after watching, Cat Ballou (weird how you remember these things) I went to bed but I could not settle and became more and more agitated. An ambulance was called and I was taken to hospital. I had managed to stop one of my attacks but the energy that it had taken had completely exhausted me and I was off school for a week and was back on medication shortly after. I was given a combination of phenytoin and carbamazepine. It didn't stop the attacks and so the dose kept going up.

About this time two things happened which changed my life and also one article in a newspaper. The BBC had a science series called QED. One particular programme was about epilepsy. The first person was a Scottish guy who had epilepsy and was seen at a  swimming pool. He had learned to swim and had told nobody about his condition and had got away with it.  Was what he did the right thing? The answer can only be is that it worked for him. In these more litigious times, it is often safer to be honest. The DVLA once praised me for returning my driving licence following an attack.

The other thing was one of my teachers at school. He had asked my sister where I was following the incident above. When she told him he went away and wrote me a letter. He apologised to me for not spotting the signs earlier and he gave me some sound advice about how to handle the condition. He told me to be careful about who I told, but that it need not stop me achieving my ambitions. Oddly enough that is exactly what it did do, combined with a bit of 18 year old stubbornness but that is another story.

I took his advice. The drugs didn't work, in fact they made things worse and the dosage my doctors had me on nearly killed me. The article followed shortly afterwards and was by Rev Lionel Blue. He said that he treated epilepsy as an unwanted relative that comes around from time to time. All of these things together gave me a sense of perspective about my condition. When I was twenty two, I had my wisdom teeth removed and had an extra dose of my epilepsy medication and ended up flatlining, according to the patients around me in the ward.

Once you learn to embrace your condition, you can handle it. It has given me trouble, heartache and pain in my life. But it has also enhanced my phenomenal memory, taught me how to handle stress and pressure, given me immense powers of focus and concentration.

If you get good healthcare that is an advantage. During my twenty years in Huddersfield I had excellent care from the doctors and staff at the University Health Centre. In other parts of the country the care has been less good. I know that I will have to take sodium valproate for the rest of my life. I know that there is no guarantee that I won't have another fit. I have learned to take each day and each moment as it comes and it is hard work to do that.

Some tips I picked up along the way:-
1. Reduce your caffeine intake - I was always lucky enough to get an aura before my seizures. Unfortunately the buzz from caffeine is a similar sensation and I have had to leave shopping at the till to get home just in case.
2. Alcohol - I don't drink, which is irritating, but I was never a heavy drinker because of the way I had been raised. In the end it isn't worth it.
3. Drugs - what is the point. If you are going to spend your life on the type of drugs you have to take for epilepsy, just what is the bloody point of destroying your mind and body with that sort of crap.
4. Be bloody minded. - People will tell you that you won't be able to do all sorts of things because of your epilepsy. Don't believe them. Find a way to achieve your dreams. Everything that I wanted to try and achieve I have tried. I may not be a high powered lawyer but then I'm not prepared to take the stress levels required to succeed in that profession
5. Find love. Sounds simple I know. My wife learned to put up with many things. Until she met me she had never been in an ambulance. The benefit is that since we have been together my health has stabilised. It took a few months initially but I have, touch wood, not had any problems for 16 years.
6. Believe in something. - This is a personal one. I am not a religious fanatics and every religion has its problems but the fact that I have some belief, cobbled together over many years, helps me.

Lastly learn to recognise and use the benefits that your condition gives you. If you treat it like a burden it will become one. I know many epileptics and have given talks to doctors about how I cope with it. The thing is that it is different for all of us. Epilepsy is a broad 'church' and there are many types of the condition. You just need to find your route through it. You may have one episode and never have another. You may, like me, have it until you shuffle off this mortal coil. Don't ever let it dominate you. Control it and live your life. Embrace your life and make it work for you.