Sunday, 13 September 2009

Old Friend

In the very first post I ever put up, I mentioned my cluster headaches. That was over two years ago, and I have not been troubled by them again since. Till now.

I wanted to try (for no-one's benefit other than my own) and get across some of the experience.

There are some practical things which intrigue me. For example, why do the damned things go away for such long periods before returning? I understand (though there is still some science to be done, I believe) that there may be a link to the hypothalamus, which explains their clockwork nature, but how can it be that they attack in such a pronounced curve - from minor every few days, to extreme every few hours and then back down again - over a period of two or three weeks?

But most of all, the headaches force me to examine my relationship with pain. The pain they cause is a very specific one, a pulsing throb at the back of my left eye, accompanied by a watering eye and a streaming nose. It is extremely intense, and causes me great distress. There is no escape, and lying down (that classic tactic for ills) is the worst thing I could possibly do. All I can do is to pace back and forth in a darkened room and wait for the storm to subside, all the while clutching a tissue to mop up the tears and snot, simpering or moaning occasionally. After a while, the pain can migrate (migrainate?) to the top of my head, where it feels spiky, as if it is running along the scalp. This can mean that the attack is about to stop, or - in a cruel twist of fate - it can simply bounce back down to the eye again, spending its time travelling between the two areas. I can also feel a slight weakness in my legs and a tension across my shoulders. When the pain finally does subside, there is a different result, depending on where I am in relation to the cluster. At the beginning or the end, I return to whatever passes for normal in my mind; but at the top of the curve, I am left feeling washed out and tired, as if I have been through the wringer. I often drift to sleep for a short while. I feel thirsty and - occasionally - hungry.

The latest cluster has displayed slightly different characteristics to the others (as far as I can remember them) About two weeks ago, I was awoken at around 4am by a pain. It was reminiscent of cluster headache pain when I later thought about it, but at the time it didn't register as such. I got out of bed and popped a couple of paracetomol, but the pain had subsided by the time I crawled back into bed. Then again, a few days later, the same thing happened once more, and the first flicker of fear began to cross my mind. I had recognised my old adversary, and was dreading his latest onslaught. Then, the first bona fide attack occurred on Wednesday evening as I was watching England thrash Croatia at a friend's house. Since then, they have occurred nightly, with Friday so far being the worst. I felt a twinge at around 7pm, then a full-blown monster hit me at just after 9.00, forcing me to leave the pub and laying me low till around 11.00. Twice more, during the night, I was hit, the last time around 5am.

Though, and this is a characteristic also, the next day when I awoke, I felt fine. It could have been that the headaches had never been there. Towards the end of my last cluster, I was referred to a neurology specialist who is a particular expert in cluster headaches. He gave me a load of packs of injectable sumatriptan, which fell out of date, and which I no longer have. I never tried them, and am of course scared to death of sticking a needle in myself. I will play it by ear (or by eye, if you like) and take whatever action I feel is necessary as this one plays itself out.

I suppose I should try and explain what I mean about my relationship with pain, and the title of this post as 'Old Friend', but it's not easy to put into words. I definitely do not like the experience. I cannot abide people seeing me during an attack (for fear of distressing those close to me, and of embarrassment if anyone else watches me) and there is such a feeling of elation when I can finally be sure that I am on the downward curve towards normality, but there is something almost reassuring about the headaches being there, about the pain being so familiar to me. I have tried to turn this odd feeling into a weapon, reasoning that the pain will not be so bad if I can change the way we look at each other. Pain is, however, difficult to reason with, I have found.

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