EPILEPSY: How To Be An Epileptic

EPILEPSY: How To Be An Epileptic

Don't Say Brainstorm - An occasional chat about epilepsy...

Is it really true that everyone is allowed one fit without having epilepsy?

I don't resent my epilepsy.  Obviously I don’t enjoy it, but the condition came early enough in my life so that it didn’t impede on an existing lifestyle.  Some peoples’ condition causes them to have more than one seizure a day, whereas I only have them a few days of the year.  It doesn’t make my life feel too much different to how it would be if I didn’t have epilepsy, and for that I am grateful.

No matter how serious the condition though, being diagnosed with epilepsy obviously has a massive impact on someone’s life.  Being epileptic stops you from doing a lot of things – obviously piloting aircraft and extreme sports are right out.  But even more everyday activities have to be approached with more care than usual – having a bath for instance, or going to the pub.  Alcohol reduces the effect of the medication I take and nowadays I even try to be sensible enough to actually bear that in mind.  Driving is probably the biggest thing that I miss, or rather the opportunity of learning how to drive.  After living in a village for two years I realised it was the lack of freedom that came with a lack of transport that annoyed me the most.
How does it happen then – at what point do you go from not having epilepsy to having it?  It obviously depends on the patient’s first experience with the NHS, and how that is dealt with; and sometimes that can be surprisingly blasé.  

I was diagnosed in my early teens, but it wasn’t after my first fit.  The first seizure I had was during the summer holidays when I was 14.  One moment I had been playing a game on the computer and found myself on the sofa.  My younger sister was the only other person in the house, and she managed to get the neighbour over the road to help.  She was obviously very worried – I’ve always said that for me the fits aren’t as bad for me as they are for the people around me.  I just have to wake up a bit confused, it’s everyone else that panics.  

I was taken to see a doctor that afternoon, and heard for the first time the piece of advice: “Everyone is allowed one fit without being epileptic”.  Anyone who has had a seizure is likely to have heard something similar.  I was told to go home and rest and so I did.  Doctors know their stuff, so we follow their advice.

Although I will never drive one of these I get to ride in them often enough

Except this advice – everyone having one fit without it being a cause for alarm – is questionable.  Hearing it makes you feel better if you’ve just had a fit for the first time, because it makes you worry less that you might have epilepsy.  But when you analyse it a bit more it is a silly thing to say.  If someone had a heart attack they wouldn’t be told that ‘everyone is allowed one heart attack without needing to be checked out for a heart condition’.  So why should someone who has just had a seizure be told that they needn’t worry about epilepsy, and don’t need to have it checked out further?  In many ways, it is the medical profession’s own hand-me-down advice to match the other urban myths about putting spoons in mouths and so on.  It is rooted in imperfect studies carried out in hospitals in the 1960s-70s, but it is not advice that is taught to medical professionals at university.  It is received wisdom.  It’s not written down anywhere and it isn’t part of anyone’s training. But it’s advice that’s given often.  Why?

There is a 50/50 chance that someone who has an unprovoked seizure will have another.  So sending someone home without treating it as something that should be at least followed up at a later date is not a good thing.  It is not neglectful, because that implies that the professionals aren’t doing something they’ve been taught to do.  Rather, it comes round again to a hazy understanding of seizures and epilepsy as we discussed last time we were on this subject.  If an unprovoked seizure has a high chance of being an indicator that another one could happen it should certainly be investigated.  I strongly believe this.  To pass it off as something that doesn’t need to be worried about is something you might expect a hopeful relative to do.  But the NHS needs to come up with a better strategy than this.  It needs to have a strategy full stop for dealing with people having their first seizure, instead of well-meaningly fobbing them off with comforting words based on nothing.

The gap between my first and second fits was about 9 months, and I don’t remember much about that one apart from being in A&E for 8 hours on a Saturday night in Nottingham.  You really see some things in A&E, and especially on a Saturday night in Nottingham.  To be diagnosed with epilepsy, all you need is to have had two unprovoked seizures – it doesn’t matter how long a time it’s been between them.  After the incident that Saturday I was sorted out with an appointment with a consultant and some scans, eventually leading to being an official card-carrying epileptic.  (Literally card-carrying – got a medical exemption certificate in my wallet and everything!)  

My fits have always been irregular and relatively infrequent.  But because I had friends and family around me when I had my fits I always had witnesses to confirm I was, indeed having convulsions.  But what if there hadn’t been any witnesses?  It could have been an awful lot longer.  That’s one of the reasons a lot of people don’t get diagnosed with epilepsy for some time – if someone is on their own and has seizures they may find themselves losing consciousness but won’t immediately think that they’ve had a fit.  Why would they?  If there’s no one around to tell them otherwise, why wouldn’t they just think they’ve fainted?  Another reason that if a seizure happens to be picked up on it should be investigated straightaway; who knows when the next opportunity could be to investigate it?