Living with Epilepsy – David Symes

With a plethora of causes for the development of epilepsy many of which are unknown, heredity is yet another to throw into the melting pot.  Ironically, a number of my own family members suffer with it but my condition isn’t related to heredity.  I come under the ‘one in seven’ category whose epilepsy is of unknown origin.

Both my uncle and his two children suffered, although I believe one of my cousins grew out of it.  However, my uncle and remaining cousin have their seizures controlled through medication and currently lead lives that are not marred by the consequences of seizures.

With this in mind, when asked, my uncle was good enough to write his experience with epilepsy throughout his life so he will be the feature this week.


So then, to borrow the words of the song in the old Michael Caine film, What’s it all about, Alfie?  Or rather, what’s it about, being an epilepsy sufferer?

It was half a lifetime ago (I’m 70 now so I’ll leave the math to you) that I had my first fit or, as the medics prefer to call it, a grand mal seizure. But you’ll know that there’s nothing grand about blacking out with no prior warning whatsoever and coming to an hour or so later, most times in a hospital ward, with a splitting headache, a half-chewed tongue that’s swollen to twice its size and a string of questions such as “What happened?” and “Where am I?”. Grand mal is French for great sickness – you can see where the term mal de mer, meaning sea sickness, has its origins – and it’s the granddaddy of all kinds of seizures.

It’s very nasty, not to mention frightening, to watch someone in the throes of a convulsion. My seizures occurred, thankfully, no more than a couple of times a year when I was having them. You hear of people having half-a-dozen seizures a day and you begin to realize how fortunate you’ve been. Hang on to that word, fortunate, because it becomes part of your way of thinking in the end.

Nowadays, I jokingly class myself as an occasional epileptic. It’s been more than 10 years since my last episode, and it was 12 years before then that I’d had what is quaintly called ‘a turn’, a term which conjures up pictures of elderly ladies taking a whiff from a bottle of smelling salts.

I feel that my epilepsy is well under control these days although it took a considerable time to get the balance of my medication right. Friends still express disbelief when I tell them how many tablets I ingest each day and the amount of medication they represent.

I should be able to reel off my medication, just as old soldiers can instantly recall their service numbers, but I’ve become so familiar with the twice daily dose – two orange ones, one pink one and two brown ones – that I need to look at the labels on the bottles to accurately tell you my prescription. In all, I’m on 500mg of phenytoin sodium (or epanutin) and 800mg of tegretol – ten tablets in all each day – to keep me on the straight and narrow.

The large percentage of my seizures happened in my 30s and 40s. They weren’t choosy where and when they struck – on a crowded bus, in the office at work, outdoors during a game of softball or some game involving hitting a ball with a stick, in a neighbour’s house while decorating the stairway, in a London hotel, in a car (twice), and even in a crowded pub where I was laid on the floor while thirsty customers walked around me to get to the bar. The latter isn’t to be recommended as I later discovered I’d been lying in a puddle of beer slopped on the floor by a careless customer.

I learned to live with the condition. My initial bitterness at learning that I was epileptic was gradually over taken by resignation and then acceptance of the fact.

One of the questions I found myself asking in the early days was “Why me?”. It’s a question without an answer that worries a lot of epileptics.

A friend of mine, now in his 40s, has just been diagnosed and his world has come apart at the seams. I know from my own experience that it takes time to adjust, but once you can acknowledge that you have epilepsy, you realize that you have to pick yourself up, dust yourself off and start all over again (my apologies to whichever lyricist penned those words).

You haven’t come back from Afghanistan or Iraq maimed for the remainder of your life; you’re not suffering from terminal cancer; you’re not a victim of some sexually transmitted disease; you’re not addicted to drugs or alcohol; you don’t need a heart or liver transplant; you’re not mentally impaired.

Most epileptics respond to a course of treatment. Your life may have taken an unexpected turn, but you can still lead a normal life. You can cope.

I did.


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