A postcard from my migraine

I’m describing this as a postcard because having a bad migraine is like going to another place. Those who don’t know much about migraine think it’s just a bad headache; and indeed you often hear people using “migraine” as a synonym for “headache”.

Everyone’s migraine is different. The basic definition of migraine is a severe headache, usually on one side of the head, sometimes accompanied by nausea and/or neurological problems such as photophobia, aura, disturbed vision, hypersensitivity to smell or sound.

I don’t know what it’s like for other people. I can only tell you what it’s like for me.

I’ve had a lot of not-very-bad headaches over the past couple of weeks, the result I suspect of the disruption of Christmas and new year. Migraine happens, according to a doctor I spoke to at the City of London Migraine Clinic, when the accumulation of triggers tips the migraineur over the edge. Triggers can be pretty much anything, but it’s generally agreed that stress, disruption, tiredness, overdoing it, alcohol, coffee, rich food – all hallmarks of the Christmas period – are among them.

I get runs of the not-very-bad headaches. They would probably turn into full-blown attacks if I didn’t hit them with the meds; one of my particular issues though is rebound – you can actually spark more headaches by taking medication to stop them. I talked about this issue with a specialist a while back and he agreed that for me, it’s probably less bad to take meds to stop them before they take hold and thus risk a rebound rather than succumb to a bad one that would take me out for a day as my preference is not to lose time to them.

A run of low-level headaches often precedes a bad one, though not inevitably. I’ve had a bad one today. As is often the case, I was woken by head pain at about 5.30am. I took the meds and went back to sleep, waking when the alarm went off a couple of hours later.

Usually, that’s it for an early-morning one. I often feel a bit groggy and might still have some pain when I get up, but in general, getting up, having a shower and washing my hair (there’s something particularly helpful about hot water on my head) and drinking a coffee (oh yeah, caffeine can be both a trigger and a panacea) will see it off.

I still felt pretty awful when I woke up – still with head pain and with an unshakeable sense that it was going to get worse before it got better. I should have stayed in bed as sleep can help a lot, but I hate losing time to a headache and I also worry that I might be suspected of malingering if I email the office and say “got a headache, not coming in”. In fact I’ve never done that – I’ve always gone in, mostly because it does usually lift sufficiently for me to go to work.

By the time I got to work, I knew it wasn’t going to go away. The head pain had gone – head pain is really only part of the package anyway – but I felt increasingly sluggish, as though I was trying to function from behind a thick pane of glass while at the same time swimming through thick, viscous treacle. Everything I did felt as though it was in slow motion. It was hard to talk – forming words and sentences becomes almost impossibly complicated and really too exhausting to contemplate.

The absolute hallmark for me, though, is visual stuff. The general malaise and bleh comes first, then the visual stuff kicks in. I get photophobic – I start finding the light very sharp and jangling. It becomes difficult, if not impossible, to look at anything that forms strong patterns of parallel lines – so escalators are difficult; steps are not easy; ranks of buildings are tough, books on shelves, the patterns on paving stones, Venetian blinds – the world is full of strong parallel lines.

I find fluorescent light almost impossible to keep my eyes open to by this stage (and that’s why I’m stockpiling tungsten bulbs – low-energy lighting is basically fluorescent light and I’m not the only person who has photosensitivity issues with low-energy bulbs), and that’s the point at which I cave in and head for home. I say “I can’t see” to my colleagues – that’s not quite what’s happening, but I’m really quite inarticulate by this point and it’s a shorthand for “I can’t keep my eyes open because the light in here is so sharp and bright and I definitely can’t look at a computer screen any more because letters on a page become those strong, contrasty parallel lines I have trouble looking at”.

It’s a horrible place to be and it feels like a place that’s separate from the world that everyone else is inhabiting. I find the inarticulacy particularly distressing, because I’m usually very articulate – I feel handicapped by my absence of ability to express myself, and I get weepy and desperate. Desperate in an inchoate way – it’s an overwhelming sense of distress and a powerful desire to be home where it’s safe, where I’m in control of the environment and where it’s quiet and dark.

The whole world becomes a hostile place, but one I’m disconnected from. Noise – voices, iPod earbuds hissing, Tube announcements, people chatting, the squeal of Tube brakes – becomes oppressive, yet distant. It’s like stumbling through a film set that I’m not part of. Smells become intense and everything is hard to look at.

This really distressing stage gathers pace quickly – I can be ok and coping one minute, then falling off a cliff into the migraine place the next. It usually peaks at about lunchtime. It takes me about an hour to get home; by the time I get home, the drugs are starting to work and being away from the difficult environment of the office and having walked to and from the tube stations in fresh air has helped a bit, even though the outside world is a pretty difficult place to be.

I go to bed when I get home and I sleep. It’s a heavy sleep that’s hard to wake up from, but it’s only for two or three hours and I usually feel better when I do finally wake up. That’s when I start to return to the world I usually inhabit. I can feel pretty coshed after a migraine; counterintuitively, there’s also sometime a huge sense of relief, almost euphoria, that it’s over which goes hand in hand with feeling as though I’ve been hit by a steamroller. This is technically known as the postdromal phase of migraine – it’s a very distinct phase and for me can last a day or more.

Right now, 12 hours after I got up feeling pretty rubbish, I just feel shattered. I think it’s over; it probably is. Time to come back from my sojourn in the land of the migraine.