- Date published:
- Reading time: 13 minute read
It was a week after I had collapsed in central London, on a wet and gloomy morning, and I was wandering around Northampton General Hospital trying to figure out where I was supposed to be for an EEG recording. The neurologist I had consulted was now confident I was having fits, and this was the latest in a series of tests intended to prove his theory. But why had I suddenly started to fit, aged 27? And was there anything I could do to manage it?
Note: this is the fifth article in a series that begins with Passing Out.
The night before, as my knowledge of these things was nothing more than anecdotal, I’d bothered to look up the science of electroencephalography to give myself an idea of what was in store for me. The problem with straying into a field in which you have no grounding is its description includes many, many more terms with which you’re just as unfamiliar. But, from what I could determine, it was a process of measuring electrical activity in the brain. It seemed reasonably unintrusive—I was more comfortable with things being attached to me than put in me, so the thought of a few sensors glued round my head wasn’t too bad in itself. Certainly it was much better than injections, which were becoming more usual whenever I had to visit a hospital.
Even so, I still wasn’t enthusiastic about the appointment. I had gathered the impression that the sheer quantity of unknowns about the workings of the human brain made the process rather imprecise. It seemed highly probably this examination would raise more questions than answers—hindsight affords me the clarity to realise most investigative medicine is this way but, at the time, the element of mystery was rapidly wearing thin. Besides, what was all this testing supposed to achieve anyway? Say it turns up something useful… what then? It’s official, Mr Morgan, you have a faulty brain! But there’s no chance of a transplant because, well, brain transplants are still the stuff of science fiction. Oh, plus your parents didn’t opt for the extended warranty, so you’re stuck with it.
Although it was before noon, the heavy rain had made it a dark day, almost monochrome, and there was not a soul to be seen. The weather matched my mood as I trudged between car parks, with a basic and now sodden photocopied map of the site disintegrating in my hands. It seemed my destination was nowhere near where I had imagined, and I’d started at the complete opposite end of the site. As if to summarise all of my concerns, the Department of Neurophysiology shared a building with Research and Development—even if I had seen someone, I would have resisted asked for directions for fear that the answer I’d get would be “Oh yes, that’s down at the far end of the Guesswork Wing, just opposite the Department of Approximation”.
The deep black tarmac was criss-crossed by the white lines of empty parking spaces, and all was covered in oily rainwater to the point where the puddles conjoined. This was proving to be a classic example of something that would have been considerably less arduous 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 thoroughly soaked from circling the site on foot. I was almost certainly grumbling to myself. All this unspecific ill-health had now well-and-truly lost what little novelty it may have initially held. I didn’t like hospitals; I didn’t like the time it takes for everything to happen in a hospital; I didn’t like the fact I had to keep returning to hospital, wittingly or otherwise; I didn’t like the fact hospitals are so bloody hard to find your way around… essentially, I’d had enough of all the buggering about and was feeling particularly intractable about the whole thing.
With the rain running out of my hair and down the back of my neck, I wondered if I could somehow construct the pretence that whatever it was that was wrong with me had mysteriously gone and everything was now fine thank you kindly and could you all just leave me be. But it was no use—I was already in too deep for any amount of bullshittery to lift me back out.
By trial and error I eventually found the right building, the Sneaking Suspicion Unit or whatever it was, and then the right entrance. Straight away it was obvious this particular block was in no way over-funded. In any established public facility—schools; hospitals; museums; whatever—there tends to be an area that’s new, or recently renewed, and everyone’s pleased with it. Those within will reflect its air of ultra-modernity and professionalism. But not every area can be that area all the time: there’ll always be others somewhere in the background that haven’t received the big recent investment and will look all the worse by comparison. This area of the hospital was one of those areas. Nothing specifically wrong with it, mind, but it didn’t strike me as a particularly happy place to work. The peeling paint and bowing, water-stained ceiling tiles put me firmly back into my place—after all, what was I complaining about? The inconvenience of receiving treatment? What an ungrateful pillock! If it’s a bit approximate, so what? So was space exploration once upon a time, probably still today. I resolved with myself to stop looking for faults and be more open-minded. After all, my mind was about to be opened, whether I liked it or not.
Besides the two or three staff and myself, there wasn’t anyone around. The nurse led me in and escorted me to the examination room, before wheeling in all manner of intimidating machinery. She was around my age, and pretty in a sort of straightforward way, but at the same time looked tired—not exactly lacking rest, but perhaps under-stimulated. Her demeanour gave the impression that this process was routine, and this was somehow reassuring. It’s the kind of impression you might hope to receive from a dentist, or a midwife, even airline staff: no alarms and no surprises.
Within twenty minutes, I was lying on the table with electrodes attached all over my head and face. The nurse explained that she was going to carry out a number of tests, concluding with a whole load of strobe lighting to see if she could bring on an epileptic fit. Great, I thought, unenthusiastically. But then if I’m going to have one, it may as well be here. As the lights in the room were dimmed, part of me began to hope she 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 some kind of live show may have seen the signs warning of strobe lighting put up by the health-and-safety brigade (or perhaps the we-can’t-afford-to-be-sued brigade). One of the key tests would be to see if I too showed any signs of photosensitivity—basically, cover my head with electrodes, then let off strobing lights at different speeds and watch how my brain would react. The lights were more elegant than I expected: a movable arm on a stand, the headpiece of which was elliptical and only four or five inches in length and covered in a matrix of small white lights. 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 kick off in my late twenties?
“Anything?” asked the nurse.
“Nope.” I replied, half-disappointed. There was a pause, as she scribbled notes and tapped at the computer. The strobing quickened.
“How about now?” she asked again, patiently.
“No, still nothing.” I replied again. But, while this wasn’t making me fit, the sensation of having flashing lights merely inches from my eyes was not particularly pleasant.
“Okay, what about now?” she said as she ramped up the strobes to a truly irritating intensity.
“If I pretend I’m unconscious,” I pleaded, “will you turn these bloody things off?”. She laughed, thinking I was joking.
Eventually the testing was over and the readings were taken, and throughout I’d remained conscious. In all, the process had been uneventful. As the nurse set about removing the many sensors and wires from me, I came to understand her demeanour a little better: this was exactly the result she was expecting. After all, I have been referred here to rule things out, not rule them in. My diagnosis was already made, and this was merely a process of double-checking, possibly triple-checking this judgement. The neurologist’s hypothesis, rather than the patient, was being tested. Yet, you would not expect someone in his position to be proved wrong. The nurse knew this, and now I did too.
The various scans may not have been turning up anything conclusive, but I was making discoveries of my own. It had become obvious the “funny turns” were the clearest indication of the onset of a fit and, now I had grasped this connection, I wanted to understand it 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 seriously. The big problem with them was, by the time they were happening, I’d lost the ability to do anything about it, or even think straight. So, I wanted to understand them to the point where I could tell one was about to happen—preferably in the moments while I could still react.
I already knew I could neither comprehend what others were saying nor say anything myself during these episodes, 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 around—I didn’t appear to lose any muscle function until the last—but I realised 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 early on—early enough for me to realise something was up in my conscious mind 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 colleague. By this point he’d become 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 asked, in jest, if I could pull one out of the bag so 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 my colleague. Something like “I think I’m gonna fit” would do it. But it was too late. Apparently, I began to yell. A low, quiet howl 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 to the very old, the very young, and the unconscious. My colleagues had developed the theory that losing and regaining consciousness reverted me to my natural, normal, default state—the factory preset, if you will: short-tempered, irascible 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, almost disappointed, muttering “He’s fine”.
Another afternoon was wasted in A&E—I couldn’t help wishing 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 action is required solved 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 tired of falling and smacking my head, so perhaps this might cue the next best option: I resolved to myself if I had even the slightest inkling of an aura, 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 practised 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 thought I was doing. But would I be able to do it when it mattered?
At the beginning of the following week, the colleague with whom I shared an office drove me back to the hospital to have a 24-hour ambulatory monitor thing rigged up. I’d grown 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 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 essentially a one-strike rule. If you’ve lost consciousness while awake, that’s your licence gone for year at least. My colleague picking me up for 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 next day was a normal one. As they so often do, someone had broken a fax machine again. There had previously been some suggestion it was broken fax machines that triggered my seizures, but the frequency at which people seem to be able to break them was far greater than the fits I had suffered. Had there been any link, I doubt I’d ever be conscious. Nevertheless, I wandered out into the main office to tend to the wretched thing. My office-mate 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 my colleague who was still in conversation but, in the way people do, seemed to sense 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 between the banks of desks before I hit the ground. I think I made some effort to move from the chair to the floor, but I probably got only 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 ambulance crew that had been called out once 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 the various test results: he’d seen my brain and the electrical activity within, he’d seen my blood-flow 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 my office-mate 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.