A week after collapsing in central London, on an extremely wet and gloomy day, I was wandering around Northampton General Hospital trying to figure out where on earth you go for an EEG appointment. This was a classic example of something that would have been considerably easier had I brought the car – at least I’d have somewhere dry to sit. But, having now surrendered my licence, I’d arrived in the general area of the hospital by taxi and was now getting soaked through while circling the site on foot.
Having finally found the right building and the right door, the nursing staff led me in and escorted me to the examination room, before wheeling in all manner of intimidating machinery. Lying on the bed with electrodes attached all over my head and face, they explained that they were going to carry out a number of tests, concluding with a whole load of strobe lighting to see if they could bring on an epileptic fit. Great, I thought, but then if I’m going to have one it may as well be here. As the lights were dimmed, part of me began to hope that they could set me off – at least then we’d have some idea of what could be the cause.
It’s reasonably common knowledge that some forms of epilepsy can be triggered by flashing lights – anyone who’s ever been to something like a pantomime may have seen the signs warning of strobe lighting. So as I lay there with the lights flashing wildly in my eyes, I wondered why all this should happen now. I’ve been exposed to strobes on many occasions, working on theatrical productions, as a DJ, and in various clubs and so forth. So why should it all kick off in my late twenties?
“Anything?” asked the nurse, kindly and patiently as ever. “Nope, still nothing.” I replied, half-disappointed. “What about now?” she said as she ramped up the strobes to a truly irritating intensity. “Erm… if I pretend I’m unconscious,” I pleaded, ” will you turn these things off?”. She laughed, thinking I was joking.
The various scans may not have been turning up anything conclusive, but I was making discoveries of my own. It had become obvious that the “funny turns” were the clearest indication of the onset of a fit and, now I understood this connection, I wanted to understand them better. Not all of these episodes developed into a fit but, as there was no way to know which would and which wouldn’t, I decided to start taking them all very seriously. The big problem with them was that, by the time they were happening, I’d lost the ability to think straight or do anything about it. So, I wanted to understand them to the point where I could tell one was about to happen – preferably in the moments when I could still react.
I already knew that, during these episodes, I could neither comprehend what others were saying nor say anything myself, but this was of limited use if I wasn’t engaged in conversation at the time. I’d also lose the ability to read, but usually later still. So, what else couldn’t I do? I could still move about – I didn’t appear to lose any muscle function at all until it was too late – but I realised that there was more to it than processing language: I couldn’t handle numbers. What’s more, my ability to do basic arithmetic appeared to evaporate before my language skills. In fact, times tables would go very early on – early enough for me to realise in my conscious mind that something was up and react appropriately. The next question was what an appropriate reaction might be.
The day after the EEG, I was back at work as usual. At the time, I was sharing a small office aside from the main open-plan area with a great guy called Tommy. By this point he’d become very familiar with my fits – he’d come and sat in A&E with me after two of them, and a couple of times he’d even asked if I could pull one out of the bag so that we could dodge particularly boring meetings. I had to disappoint him in that regard, but nevertheless he had volunteered to ferry me to and from work which in itself had solved a massive problem.
I can’t even begin to recall what prompted it, but I began to suspect that a “funny turn” may be approaching. Straight away I began to do the seven times table in my head. Once seven is seven, two sevens are fourteen, three sevens are… wait, three sevens… That was it – here it came, and I decided to tell Tommy. Something like “I think I’m gonna fit” would do it. But it was too late. Apparently, I began to yell. Low and quiet at first, but getting louder and higher in pitch until I went out and tumbled downwards.
I came around to the sound of paramedics talking to me the way they do. Tommy and I had been working on a theory that regaining consciousness would revert me to my natural, normal, default state – irritable, short-tempered and deeply sarcastic. “Can you hear me?” asked the paramedic, too loudly. “Yes of course I can hear you” I replied petulantly, “you’re right here”. The paramedic persisted: “do you know where you are?”. Bugger, I thought; it’s happened again. Calling for help doesn’t work. With a wry smile, “can I phone a friend?”. My colleagues began to relax and turn away. “He’s fine.”
Another afternoon was wasted in A&E – I couldn’t help wishing that people would stop calling for ambulances. But despite the fuss and the inconvenience, this had been a positive learning experience. More than that: this was a breakthrough. Although I couldn’t control the fits themselves, at least I had something of an early-warning sign. If I couldn’t do my seven times table, I knew I needed to act, and fast. But knowing that action is required solves only half the problem: the next question was what on earth to do. Calling out had failed, so that wasn’t it. But I had grown very tired of falling and smacking my head, so that could be the next option: I resolved to myself that if I had even the slightest inkling of a “funny turn” that I’d get on the ground of my own free will and assume the recovery position myself. With time being very much of the essence, I had even practiced the art of throwing myself onto the ground so that I would land in the recovery position and without hurting myself. I dread to think what my downstairs neighbours think I’m doing. But would I be able to do it when it mattered?
At the beginning of the following week, Tommy drove me back to the hospital to have a 24-hour ambulatory monitor thing rigged up. I’d grown very sceptical of all this testing. No test done so far had come back with anything useful, so I wasn’t holding out much hope for this one – particularly as it would examine my heart, not my head. More irritating still, the nurse fitting it agreed that it was probably a complete waste of effort unless I were to have a fit within the 24 hours I’d be wearing it. Nevertheless we proceeded, I spent an uncomfortable night in a nest of wires and electrodes, and we returned the following day to hand it back. Apart from the wires it had been a very normal 24 hours – I didn’t know whether I was pleased or not. The nurse undertook to return the results to the neurologist – this would be the last set of results he had requested, so hopefully from here on we were in treatment territory. About bloody time too.
Meanwhile, the DVLA had written to acknowledge receipt of my driving licence, and to say their medical people would be in touch at a later point. I had investigated the position on driving myself and, sure enough, it’s very much a one-strike rule. If you’ve lost consciousness while awake, that’s your licence gone for year at least. Tommy running me into work had certainly softened this blow, but a year without a fit was beginning to seem insurmountable – at this time, I could hardly make a week. The countdown starts from the most recent fit, so the clock had just been reset again the previous week.
The next day was a normal one. As they so often do, someone had broken a fax machine again. There had previously been some suggestion that it was broken fax machines that triggered my seizures, but the frequency with which people seem to be able to break them far outweighed the fits I had suffered. Had there been any link, I doubt I’d ever be conscious at all. Nevertheless, I wandered out into the open-plan office to tend to the wretched thing. Tommy was also out of our room, sitting at the opposite corner of the open-plan area engaged in conversation. As I stood there thumping buttons at random, I had that gut feeling again. Once seven is seven, two sevens are fourteen… what comes after two?
This time, I reacted in a reasonably sensible way – there was a chair beside me, so I sat down for a moment. The situation didn’t improve. I looked across the office at Tommy, who was still in conversation but, in the way people do, seemed to sense that I was looking and turned his head. He must have read on my face that I was losing consciousness again, because he was already on his feet and weaving his way over before I hit the ground. I think I made some effort to move from the chair to the floor, but I probably only got half-way. And that was it: I was out again.
I opened my eyes to a familiar face. It was a paramedic called Aidan – part of the crew that had been out before to scrape me off the car park. “Ah!” I cried, pleasantly surprised, “Hello again!”. In the back of the ambulance I was fully with-it, and we had quite an interesting conversation. Aidan listened to the bits of the story he’d missed, and said he thought it sounded like epilepsy. “Isn’t that something to do with flashing lights?” I contested. He explained that photosensitive epilepsy is widely known, but epilepsy can take many forms and be caused by many factors. I asked what could be done to know for sure if this was what was affecting me. His answer was simple: “rule out everything else”.
Two days later, I was back in front of the neurologist. He had received all the various test results – he’d seen my brain and the electrical activity within, he’d seen my bloodflow and its contents, then blood pressure, heart rate, urine and stool samples… by this point he’d seen just about everything it was possible for me to show him without an autopsy. Irritatingly, everything was “normal”. Besides being four kilos under the recommended weight for my height, oh – and the fact I kept losing consciousness, everything was tickety-boo. As Tommy had once again ferried me down to the hospital for this meeting, and as he’d witnessed a fair few of my seizures, I dragged him in too for another eyewitness’s account. The neurologist asked him only a couple of questions, and greeted his answers with that familiar assured nod showing a lack of surprise. “Right,” he proclaimed, placing my now copious medical notes back in a file, “I’ve made my decision”.
More on that… in a bit.