The living hell of my migraine

I saw the skeleton as soon as I woke up. The French seaside hotel room was unchanged, otherwise. My eight-year-old sister was still in her bed by the window. In the gloom I could make out my father next to the skeleton. In fact, he was holding its hand. The pair walked towards the door, which was next to me. The skeleton's anatomically perfect hand was on the doorknob, inches from my pillow. The fingers turned the knob as I watched. The door opened. My father nodded at me and left with the skeleton, still holding hands.

The cooler air in the corridor brushed against my face, bringing countless tiny smells. After a few minutes I got out of bed and followed them. I descended the broad stairs and found the hotel bar, where my parents were having an evening drink. There was a look of shock on everyone's face: my pyjamas were clamped to my skin, soaked in sweat.

Thus began my first migraine attack. I earn my living by writing novels, poetry and radio plays, so that attack's seamless passage between hallucination and waking reality (Lewis Carroll was a migraine sufferer, as was Van Gogh) might seem almost vocational.

I had a peripatetic childhood, as my father worked for Pan Am; the Congo, Cameroon and Calcutta featured in our itinerary. Now I live in France, where I was born 47 years ago, with my wife and three children (the unexpected success of my first novel, Ulverton, allowed me to take up my precarious existence as a full-time writer).

Migraine has faithfully followed me through all climes and places, if in varying intensities. It's even found its way into my latest novel, No Telling: the adolescent hero has a vicious attack after uncovering a family scandal.

At one point in my life I thought I'd shaken it off, not having had an attack for several years. I was about 40 - the age when you're supposed to outgrow it. That proved to be yet another migraine myth. There are a lot of
those. I used to have an early warning system in the form of visual disturbances (black spots and miniature comets): these days the attacks slip into my life like insidious aliens, taking over within minutes and reducing me to uselessness.

My neck is gripped suddenly by a vice, which turns into a set of spidery, metallic fingers that crawl up and seize my skull, squeezing it until the plates seem to be grinding against each other. A yellowish, toxic fluid slops about in my brain, bringing on the nausea and altering my character for the worse.

Only then do the black spots float in front of my eyes. The faintest smell becomes overpowering, the tiniest sound grating, the smallest chink of light becomes a Gestapo lamp. All I want to do is to lie in utter darkness, deprived of all sensory impressions except a comforting touch: the only interruption is the vomiting, which brings a few minutes' relief. As I lie there, head cracking, I am very deep down a lightless rabbit-hole of depression. Both inner and outer worlds seem polluted, noxious, poisoned.

Almost everyone, it appears, gets "migraine". The term is used freely by the unaware to describe a fatigue headache, or as a less flippant excuse to be off work. Thus the real migraine sufferer, who has inherited this neurological disease or disorder from a parent (it often skips a generation), is left looking like someone who cannot cope.

To retire abruptly from ordinary life, to be hermetically sealed in one's own pain, to become as irritable and self-obsessed as migraineurs always are during an attack - just getting through each minute is all they can think about - do not invite sympathy. Instead, they look like psychological weakness: a copping-out from life's assault course.

It is possible, of course, to stagger along with a severe migraine, as it is to cut off one's own trapped arm with a penknife.

My last attack occurred an hour before I was to give a BBC radio interview. I have no memory of the second half of the interview, and it didn't appear in the final edit: I may well have talked gibberish.

I took off the headphones at the end and made it to the toilet bowl with seconds to spare before vomiting. Mind over matter, but the result was that the attack lasted another five days.

I feel the name of the disorder should be changed. In Montpellier, recently, I was physically hauled from the art museum's toilets after I'd staggered into them off the street. I gasped that I was having a migraine.

The member of staff snorted - I might as well have said I had a cold - and ordered me out of the building. If I had given some frightening Latin name she might have left me alone. A friend's worst migraine attack came during a severe family crisis; her sister suggested, in anger at her retiring from the scene, that she should go and see a psychotherapist and get herself "finally sorted out".

So, you're not only crippled, but screwed up. The association between migraine and, say, being over-emotional or oversensitive is a traditional one, but it's rubbish. Migraine is an inherited neurological disease, like epilepsy. It will soon be identifiable through a DNA blood test, the authentic sufferers sorted from the countless fakes. I can't wait.

What the disease requires is tender loving care, of course, but how easy is it to feel sympathy for someone whose condition takes her or him so entirely out of life for several days or more, and always at inconvenient moments? Especially when, as is often the case with me, the attack is triggered by relief from stress, not the stress itself.

A friend's mother, for instance, used to get it every Friday evening for two days and at the start of every holiday.

According to my village doctor, one migraine researcher, Professor Cambier, pictured this as a conflict between the ancient insect part of the brain and the newer (mammalian) neocerebellum. Feeling dangerous relief and pleasure from above, the grim old paleocerebellum sends out a powerful bloodvessel constrictor (probably serotonin). The neocerebellum fights back by expanding the vessels, which is way overdone and causes the intense pain. (In a nonmigrainous headache, the vessels merely constrict.) No one has yet identified the precise malfunction that lets this happen, but it's something all migraine sufferers have. And it can, in some cases, kill - with a migraine stroke.

After that first attack at the age of 11, I was advised to avoid red wine, chocolate, coffee, cheese and oranges.

Looking on various websites, I see the list of "triggers" is a lot longer these days - as are the named types of migraine (not everyone suffers in the way I do).

The list even includes bananas, which a fellow-sufferer reckoned were (for him) a preventive. Aspirin seems to worsen my migraines, but paracetamol eases them. Nothing stops them.

An anti-inflammatory drug has been suggested, to relax that neckvice the moment it appears by chemically massaging the muscle fibres; a proper regular therapeutic massage might be a better preventive, but no one's quite sure whether migraine is caused by, or itself causes, muscle tension.

Feverfew works for some, merely avoiding exhaustion for others. The only smell I can bear during an attack is natural lavender, which is said to be a calmant.

Certain weather patterns dramatically increase the incidence, but you can't do much about them - while for many of the 75 per cent of migraine sufferers who are women, the menstrual cycle is the trigger.

Swimming is supposed to be good, but not if you stick to conventional amateur breaststroke, head jacked back from the vertical; the Alexander method of swimming is useful here.

Even if, like me, you only suffer attacks roughly twice a year, it's worth tracking down every which way to stop them recurring. You soon forget just how awful it was for you and your loved ones, get lazy, drop your guard - and the skeleton jumps back, grinning.

No Telling by Adam Thorpe is published by Jonathan Cape (£16.99). The Migraine Action Association: 01536 461333, www.migraine.org.uk