A brief look at Epilepsy by Rose Jones

Brain Storm!

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The ceiling above my head was a narrow rectangle lit by florescent tube. There was a terrible racket. A man in a yellow jacket sat next to where I was strapped onto a shelf said, “Alright? What’s your name, love? What’s your name?”
Good question. I realised I didn’t know, with a horrible sense of disorientation, emptiness, fear. Psychic queasiness became physical. I said, “sick”, was presented with a cardboard kidney bowl, and made my emptiness literal.

I already knew about brain-storming: I worked in marketing: spinning ideas was part of the job. But then I got carried away: I worked long hours (tight deadlines, lots of pressure), studied long hours (two diplomas, more pressure), did sport twice a week (fencing) plus weekend competitions, and saw my boyfriend in my ‘spare time’. There wasn’t any (time, that is), so I gave up sleeping. It was after finishing a diploma assignment at 2am, working a full day, and then doing the double bus journey to Stockport for fencing that I found myself in the ambulance, wondering who I was, as described above. I had started brainstorming solo.

What am I talking about? I had been struck by lightening. In the 12 years since I have been struck by lightening more than 35 times. No blue light and charred flesh though, but inside the skull: a seizure. If you have never had one, don’t presume you never will. Your chance of being struck by lightening in an 80-year life is tiny: 1 in 3000. Your chance of having a seizure is just 1 in 30.

What is a seizure? It’s a short–circuit in your brain. They come in all shapes and sizes. ‘Simple’ seizures just involve numbness and shaking in a limb; “absences” mean the brain temporarily switching off – the person looks blank, unaware of the world for a few moments. But the seizures everyone recognises are the big bad ‘grand mals’: that’s falling unconscious to the floor followed by convulsions. In other words, an epileptic fit.

Why do seizures happen? It varies. Triggers include drugs or medications; scar tissue in the brain; brain tumours (benign or otherwise); violent temperature change; stress or fatigue. Alcohol is actually a seizure suppressant but can prompt ‘withdrawal’ seizures as you sober up: a lot of alcoholics become epileptics. And there are also lots of seizures with no known cause.

When is a seizure, epilepsy? When there’s more than one: epilepsy is recurrent fits, or a tendency to them. Tons of people have a one-off fit. Lots of babies have them during an illness with fever. A fair number of teenagers get a seizure and the scare of their life after a long binge, and perhaps popping a pill or two. As mentioned, alcoholics are prone to fits. But what turns that one-off into a permanent risk, which is much rarer, isn’t known.

My seizures are triggered by excessive fatigue. I can party all night but must have reliable recovery time: since waking up in that ambulance, I’ve found a week of overstretching myself brings disaster. Winter months are worst: party season, and possibly short days and dark skies, don’t help. Most people are surprised at this; they wonder about flashing lights (not a problem), presume I can’t drink (also not a problem) and that I can’t drive (license back after 10 years without a daytime seizure). But what really amazes everyone is that I became epileptic at 28.

Is there a cure? A one-off seizure just needs first aid and a hospital check out. Epilepsy, though, is treated via seizure suppressants, adjusted for the individual case. Good control can be achieved: my best to date has been two-years fit-free. There’s support and information too (try http://www.epilepsy.org.uk/ or http://www.jointepilepsycounsil.org.uk/ if you’re interested.) But ‘cures’ depend on causes: surgery removing a tumour might stop seizures, for example, but that’s rare. In my case a cure is unlikely because you just can’t always avoid fatigue. 

What about prejudice? Support groups predict prejudice against epileptics. The condition has been associated, historically (and hysterically) with possession, witchcraft, madness and spirituality, saintliness and psychic powers. Within living memory priests in Europe were performing exorcisms on sufferers. News agencies receive complaints if they use the word ‘fit’ for seizure. And a neurologist told me sternly, “Remember, you are not an ‘epileptic’: you are subject to recurrent seizures, and that’s all!”

But that’s silly. A fit means something that takes you over uncontrollably: it isn’t pejorative, it’s accurate. Unless we start with the ‘vertically challenged’ and ‘differently-abled’ nonsense, an epileptic is a person who has recurrent fits: it’s a factual description. Besides, as far as my condition goes I’ve met surprise, concern, curiosity, but never any prejudice.

How are the Spaniards about it? Exactly like the British. When first in Spain, I had two seizures after getting back late from house-hunting one night and my partner went for help. The elderly neighbour he spoke to took the sight of me lying on the floor covered in blood and foam in her stride; called the medics and got her son to come and help move me to the sofa. She remained perfectly friendly, never seeming disturbed by this rather unusual introduction. The doctors here have been no different to those in England, and the neurologist in Málaga’s Carlos Haya Hospital was the most helpful I have ever met.

What do you do if someone has a fit? A full blown seizure looks awful: the body stiffens, there’s a terrible cry; the tongue sticks out and then, as the convulsions begin and the body jerks and twists, may get bitten down on, so the person bleeds and foams at the mouth.

But the greatest immediate danger is falls or knocks. My worst have been in the street, in the bathroom, and falling out of bed, because of the associated bashing and near drowning. Otherwise, though it might look nasty but one seizure isn’t too serious.

So don’t panic. Get obstructions out of the way and let the convulsions pass. Don’t try to restrict them, and don’t put anything in the person’s mouth, but when they’ve stopped put them in the recovery position. On coming to, they’ll probably be confused: also, there may be another fit, in which case you may need to get medical help. So stay calm and stick around: I know only too well, that lightening can strike twice.

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