It's just a headache, come on...

It is NOT just a headache!

What do Miguel de Cervantes, Oliver Sacks, Virginia Woolf, Friedrich Nietzche, Joan Didion and Hilary Mantel have in common? Great writers? Interesting people? Curiosity? All of these and more, but the shared experience I’m referring to is that they all operated under the shadow of migraine headaches. It is somewhat comforting to know that in headache terms, if not in writing skills, I am in rather splendid company. We are migraineurs. Apparently it’s not a french word so Joan, Hilary, Virginia and I are not migraineuses, but we are all migraineurs. (There is some academic debate about this, but suffice to say that this essay is not concerned with the semantics).

Every six weeks or so I get migraine. I developed the trend in my teens and it has been with me ever since. Relatively infrequent in my youth, steadily worsening through a menopause that felt like a perpetual head pain zone, and then reducing in frequency again as I got (even) older.

I was at school when I first experienced scotoma - a blind spot in the visual field. I remember sitting in assembly and wondering what this strange phenomenon was that was taking out a small spot of my vision and that lasted for maybe half an hour. I remember staring up at the teachers on the stage and closing one eye and then the other to see if it changed or went away. I had no pain with it or after it. It didn’t happen very often and I just ignored it. I didn’t realise it was a migraine aura.

Later on, I developed scintilla - the better known visual flashing lights - and these would sometimes be followed by pain. Then, lucky me, I also developed the scintillating scotoma - a blind spot surrounded by a jagged, half-circle of sparkling coloured lights, starting small and growing larger until it disappears out of the field of vision. Disconcerting and often accompanied by fatigue but not always by pain in my case. These visual disturbances were hard to describe and for a long time I had no idea what they were. Migraine wasn’t diagnosed until I was in my mid-twenties and by then the episodes of pain were pretty conclusive.

There’s an odd thing about migraine though, not everyone ‘gets’ how bad it is. At work when I used to recognise the signs I would ask to leave, to get home before the pain was too severe. More than once I was told I made a lot of fuss about a headache. Other times I would be encouraged to go for a brisk walk, get some fresh air - that would do the trick. If only. Once when I couldn’t leave I vomited into the waste bin in the office. After that if I said I was getting a migraine, the response was considerably more sympathetic. And speedy.

Repeated experience has taught me to recognise my prodrome phase pretty quickly. An attack is usually preceded by continuous yawning, drowsiness and fatigue, and a twitchy right eye, often for three to six hours before the pain starts. Then there is a creeping neck-stiffness, nausea, and a feeling that my head is big, light and thin-boned - like an empty egg shell. My scalp feels tight and tender and the first sickening throb around one eye is followed by the gathering weight of hot, smothering pain. My head so tense and full, it might burst. The dips of my temples carved so thin and fragile that a bolt of it might break through and flare into the room. A blinding, crushing of my world so that the pain in my head is all there is.

Sometimes if I catch it with medication at the right moment, I can head it off in two or three hours. Sometimes, I just have to wait it out. If you’ve never experienced migraine, you cannot easily imagine it. The severity, the all-encompassing nature of it, the inability to function - to think, to speak, to be in the normal world. A craving for darkness, quiet, maybe a cold flannel for distraction (unless it feels so heavy it just adds to the pressure), and being left alone to desperately seek the oblivion of sleep. It is really not ‘just a headache’ that a bit of fresh air will sort out.

Afterwards, there is an elation that comes with being pain-free. The world is sharply-drawn, hyper-focussed. Vision clearer, colours more vivid. My head feels odd, empty, with a weird, ‘scraped-out’ feeling, a bit wobbly on my neck, and a definite sense of ‘this is where the migraine was’, so go carefully, lest it finds it’s way back in.

Sadly for me, analgesia is variable in its effect. The triptans sometimes work well, sometimes less so. One specific migraine medication made the pain worse, never to be tried again. Relief also comes from combinations of codeine and paracetamol, sometimes with added caffeine, sometimes a muscle relaxant. The latter isn’t always readily available, and when it is I stalk the local chemists, only five doses in a pack and only one pack sold at a time means I end up furtively going from shop to shop, feeling like a migrainous criminal. Stockpiling.

There are no cures, only management and tolerance, and vigilance for the warning signs. It’s taken 72 hours from me this week and prevented Saturday’s post. But, searching for an upside - it also gave me the idea for this post. If you’re a fellow sufferer - solidarity, friend.

Here is the weirdness that is scintillating scotoma. Mine is just like this, but with more of a blind spot inside the curve:

May you live migraine-free. Write soon. June x.