A storm inside my head

I am lying on a couch on my side when suddenly the white wall opposite me becomes a mosaic. Alarmed, I get up and walk around. All the walls are mosaics. My world has been transformed into a cubist painting. I call my aunt in Manchester. She is a glaucoma sufferer who is constantly urging me to get my eyes checked in case I have inherited the disease. She has always warned me to be vigilant about any change in my vision in case it signaled impending blindness. I tell her what's happening. "Go to the doctor NOW!" she pleads.

That was five years ago, near midnight, in provincial France. A relief GP was summoned. This young man, straight out of medical school, took my blood pressure. It was normal. But he told me to get to the nearest hospital as a precaution. There, the medics were also baffled. They suggested an urgent trip to the eye specialist. The next morning his diagnosis was: "Ophthalmic migraine. Nothing you can do but wait." It wore off and, since this attack, I've never seen mosaics. It left me wondering why none of the medics recognised the symptoms. And so I wanted more people to know about ophthalmic migraines.

Ophthalmic migraines are not that rare, though the more classic storm-in-the-head type has been part of my life since my mid-twenties. Once the migraine starts, I yearn for a dark room and utter quiet for 12-36 hours. It begins with the sensation of a white-hot needle passing through my left eye and across the left side of my face. I can't bend my head or turn it without intense pain. I shiver and then sweat. Sometimes there are sneezing bouts and dizziness. Once, I fainted.

A migraine is never merely a bad headache. It hits the whole body like a volcanic eruption. It can strike people of any age, sex, background, ethnicity or intelligence level. Around 80 per cent of child sufferers are boys, whereas 70 per cent of adult migraineurs are women. It is often, but not always, inherited.

In my case there is a double legacy. Throughout my childhood, I remember my GP father frequently injecting himself against migraines. He often did this in the throes of the attack and sometimes missed the vein. His injections rarely worked, and my youth was shadowed by his retiring from the world to sleep in a darkened room. My mother's sister, now in her eighties, still reports having terrible migraines. Recently, she was driving when she started seeing double and had to stop. For hours she was stuck in her car, completely immobile. Migraines are supposed to disappear after menopause, but clearly there are exceptions to this.

Nobody really knows what causes them and there appears to be no single trigger. Mine can be set off by a combination of cigarette smoke, flashing lights, loud noise, red meat, hard cheese, stress, sitting in the car for too long, neck pain and fury. Fellow sufferers have been Julius Caesar, Immanuel Kant, Sigmund Freud, Bertolt Brecht, Lewis Carroll, Charles Darwin and St Paul. Edgar Allan Poe suffered so badly that he would plunge his head into snow to alleviate the pain. I know this feeling and have often fantasised about having a guillotine for a fast end to the hell that is migraine.

The Victorians called migraines "nerve storms", and, indeed, there are neurological changes provoking hallucinations such as the one I experienced. Some critics claim that Picasso's Cubist paintings were migrainous visions. The 12th-century Rhineland abbess Hildegard de Bingen had "holy visions", which some neurologists see as classical symptoms of migraine with aura. The neurologist Oliver Sacks, who, in the 1960s interviewed more than one thousand migraine patients in his Bronx surgery, notes that migraineurs are often people who seek intense stimulation to really feel "alive". In his book Migraine, he writes, "it became apparent to me that many migraine attacks were drenched in emotional significance."

Sacks's interpretation of migraines as a reflection of an inner state makes sense, but what can be done? We know that there are trigger factors that cause attacks, but they rarely work in isolation. The sufferer usually accumulates several before a migraine begins. The problem is that the migrainous body often screams out for that which damages it most. I remember being late for an audition when I was a young actor and not caring if I missed the train as I wrestled with a faulty vending machine on a station platform. I needed the immediate high of chocolate more than I wanted the job.

The migraineur also has to be vigilant about avoiding coffee. Most of my life I have drunk eight or nine mugs daily. When I went cold turkey, my legs shook in the bed for five nights. This was caffeine-withdrawal. Certainly, stopping coffee helped diminish migraines, but it wasn't enough.

I was so tired of losing days of my life to migraine attacks that I went to a nutritionist. She asked me to substitute red meat, red wine, dairy produce, bananas and coffee with fish, olive oil, soya, vegetables, brown rice and herbal teas. I lost weight and since then my migraines have been scarce. I still have cravings for chocolate and coffee, but, bizarrely, have found that sniffing, rather than swallowing them gives me the same high.

I talked to Dr Peter Goadsby who works with The Migraine Trust. He is Professor of Clinical Neurology at the Institute of Neurology at University College London. He is amazed at how little attention migraines have had, given that 15 per cent of the population suffer from them, and 29 per cent of women. Currently he is funded by the Wellcome Trust to explore what happens in the brain when a migraine is in full flow. He is working with functional neuro-imaging to explore changes in brain regions during particular types of headache.

His belief is that it is not a good idea just to blanket prescribe anti-migraine drugs as every migraineur has an individual pattern. He believes it is crucial to first educate the patient about what migraines actually are. In this way they can start to take note of what triggers an attack. He emphasises that the sufferer should be careful with lifestyle and that the doctor has to be aware of what kind of migraines the patient suffers from, and the frequency of the attacks. "Someone who has a two-hour migraine every fortnight may not wish to take a daily migraine preventative, whereas someone suffering 10 a month may well." He is clear that, "many migraineurs accept a second-rate life because they think it is normal. It's not."

Most interestingly, Goadsby tends to think that migraineurs are not suffering because of the mechanics of dilated blood vessels in the brain, but rather they have a heightened sense of perception that is fertile ground for an attack. In other words, the migraineur is highly sensitive to light, sound and smell at most times and, when a migraine starts, then this sensitivity overcharges. "It's rather like epilepsy," he says. "It's not anything the patient can control." Goadsby works within conventional medicine, but his point of view is also holistic. His feeling is that the patient should be helped to understand their (probably) inherited migraine tendencies and shown how to protect themselves.

Few GPs I have met are as sensitive to the individual's needs as Goadsby. Consequently, I have never taken migraine preventatives. Instead I use alternative therapies such as the herb feverfew. Eileen Herzberg in her book The Natural Way with Migraine writes: "Migraine is sometimes the result of a mechanical problem." She tells readers to check in with an osteopath, physiotherapist, masseur or even the dentist. Certainly dental work, "can cause migraine as well as cure it". Teeth-clenching or a faulty "bite" can exacerbate the problem.

Regular sex is great for body and mind, but sex during a migraine is a kill or cure option. Orgasm can further block a stiff neck or it can bring release. It is important to eat regularly, as plummeting blood sugar levels encourage migraines. Exercise is also important - but be wary of classes with loud music. And sunglasses are a must: even on the cloudiest day, a sudden burst of sun might trigger an attack.

As for the progress of my migraines, there certainly has been a huge improvement. But the condition is a sleeping dragon. I am always aware that one day the blank wall might become a Picasso - but next time round, I won't be scared.

Migraine Awareness Week begins this week. For details contact the Migraine Action Association (01536 461333; www.migraine.org.uk)