It’s nothing if not a roller-coaster my condition. Or, as you’ll learn why in a moment, what I am now calling my conditions: plural.
Not long after writing my last relatively positive and upbeat blog on Thursday evening, I went to bed and then proceeded to have six< non-exercise induced seizures throughout that night – one about every hour-and-a-half. This, of course, should be cause for concern. I've gone from very rarely having seizures at all, only when really pushing it on the bike, to regularly having them while cycling. Then to having them without doing any exercise at all. Then to having six in one evening. An indication of rapid tumour growth? This time, at least, I don't think so. Even before Thursday night's episodes, I'd talked to my neurology nurse about the seizures I'd had on new year's eve. She'd advised me to up my medication dose, but reassured me that my epilepsy and tumour were only generally, not intimately related. As I understand it, I have epilepsy because I have a brain tumour. But having seizures doesn't make the tumour any worse, and the severity, regularity or propensity of the seizures isn't related to the size of the tumour. In other words, as I decided yesterday would be my strategy for not going nuts thinking that six seizures in a night means curtains for me, I'm suffering from two different conditions. I have a brain tumour that will one way or another be pretty bad news for me. But that's not happening yet, and I get to monitor it every six months with an MRI scan. And I also have epilepsy. This I have to consider and deal with quite independently of the brain tumour. Splitting the difference may be subtle, but it's sensible. As my mental health understands it, splitting the difference is essential. Separating out my conditions – however superficial – has released me to stop fretting about dying, and to concentrate efforts on understanding and tackling my epileptic episodes. This is exactly what I did as I lay there on Thursday, experiencing seizure after seizure throughout the night. I'm conscious while they happen, so I decided to really feel and experience them as they came. Instead of hoping they'd be over as soon as possible, I decided to immerse myself in them. To observe what was happening, in what order, to what intensity, and how long the different elements lasted. To understand. And I discovered something really quite strange. I found out that my consciously thinking about the seizures seemed to have an influence on them. If I let myself go, they were slightly more intense and lasted longer. If I made a conscious effort to cut them short, they would go much quicker. Mind over grey matter, if you will. The next day, I had another couple of strange experiences which only confirmed my thought experiment. I took my medication in the morning and had no further seizures during the day. But in the afternoon, I was reading a brain tumour charity website page about seizures, and what do you know..? I felt like I was about to have one. I stopped reading. Closed my computer and went off to make a cup of tea. No seizure. Later in the evening, while lying in bed thinking about everything that had happened that day, I started to have one again. But this time I consciously experienced it, allowed it a little, then mentally shooed it away; then pulled it back, then forced it away again. Like Archimedes watching the water level rise and fall as he lifted himself in and out of the bath (beautifully parodied in the film Rosencrantz & Guildenstern are Dead), I felt I could control the onset and intensity of the seizure by concentrating on it, then allowing, then disallowing it to happen. Mind control.
Now, those who know me well will already be clear I don’t go in for all that your mind can heal your cancer claptrap. But what I was experiencing seems entirely reasonable.
If thinking is electronic signals in the brain doing their job properly, and epilepsy is electric signals in the brain going awry, then surely there’s some connection between thinking about epileptic seizures and them happening, and then using your thinking to intervene when one happens.
This is where Google comes in.
I always knew epileptic seizures could be prompted by flashing lights, and perhaps suspected they could be induced by other physical stimuli like surprise or temperature change. It turns out, as has been well documented since the 80s, brain function itself – including thinking – can bring on epileptic episodes.
Everything from remembering events or doing mental arithmetic, to playing mahjong (a solo mathematical game) or hearing particular music, can cause an epileptic episode.
It’s obvious when you, er, think about it. When you read something about someone yawning, you start to feel the urge to yawn yourself. You might even be feeling that urge now. I guess it’s the same kind of reaction at play. (And now I think about it, I have a shadow of a memory of news stories in the 80s about playing Tetris causing epileptic seizures).
So today, I’ve been putting my new found discovery to the test.
I went cycling for an hour this morning, and the two times I felt a seizure rising, I made a conscious effort to suppress them. And they went away.
This evening when lying in bed about to take a nap (I have one most days, thanks to the drugs) I made a conscious effort to have a seizure. I imagined one happening, tried to call one up from my consciousness. And guess what?
Go figure. So much for thought experiments.
But here’s the weirdest thing.
From the moment I started writing this blog, explaining all about how thinking about seizures can induce seizures, and how thinking about controlling seizures might be able to actually control them, I’ve been experiencing exactly what I’m writing about.
I’ve felt a creeping epileptic feeling down my right hand side – I’m having it right now – and I’ve broken off momentarily to concentrate on making it go away again, so I can finish what I’m writing.
Now that really is strange.
I’m not convinced I really am on to something. Or that it has any application to my situation anyway.
And don’t worry, I definitely haven’t succumbed to the kind of new age alternative-medicine nonsense that a few blog readers send me every now and again. We all already know the mind can work in all kinds of weird and wonderful ways, you don’t have to light a scented candle to understand that.
But still, interesting isn’t it? I won’t say experimenting over the last day or two has been fun exactly. But it’s certainly taken my mind off my other condition. And that can only be a good thing.
By the way, I wasn’t quite sure whether the six seizures in one night were the result of my accidentally having taken either too much, or too little, of my medication. I’ve got boxes of the stuff stacked up, with half open packets of different sized pills all out of sync.
I think I did get the dose right, but to be sure I don’t mess up in the future I’m now the proud owner of one of those plastic boxes with Morning, Noon, Night, Bed written on it, with a line for every day of the week. It’s supposed to help me ensure I take the right amount, at the right time.
If anything is going to make me feel like I’m seriously ill, it’s one of those boxes with all my dozens of pills ratting around inside it like some Pfizer sponsored maraca.