HEALTH / The agony without the ecstasy: Migraine has been described as 'An extraordinary landscape . . . a wonderland of nature' but for sufferers it is a nightmare. Annabel Ferriman on treatments that offer hope

Annabel Ferriman
Saturday 13 March 1993 19:02 EST
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When pathologist Merton Sandler was hitchhiking through France as an impecunious medical student after the war, he scraped together enough money to visit the Folies Bergere. 'I was looking forward to it so much, but no sooner had I walked into the place than a migraine started; when I began to walk along the red carpet, I covered it with vomit. I curled up in a corner at the back and stayed for the evening - but I did not appreciate it much.'

Sandler, who went on to become professor of chemical pathology at London University and a world expert on the brain, suffered migraine from childhood, having inherited the disorder from his father. 'But we did not call it migraine in those days,' he says. 'We called it sick headaches. Migraine was something neurotic that a rather hysterical cousin called Dorothy had.'

Sandler's story illustrates several truths about migraine - it can be hereditary, attacks come at the most inconvenient times, and it is often viewed as a sign of neurosis. Victims suffer not only from a painful and frightening disorder but from the popular misconception that their complaint is just a 'bad headache', and that they are anxiety-ridden hypochondriacs. Such an idea does not do justice either to the complexity of migraine or to the chaos and misery it brings to sufferers' lives.

Neurologist Oliver Sacks describes it as 'an extraordinary landscape', which one can 'endlessly explore and discover - a sort of wonderland of nature . . . It is infinitely more than a headache - it is a whole realm or region of strange phenomena.'

But a neurologist's dream is a victim's nightmare. The phenomena to which Sacks refers include not just the nausea and vomiting which usually accompany the painful, throbbing headache, but also the incomprehensible and unexplained 'aura' that frequently precedes it. This lasts between 20 minutes and an hour and usually starts with blurring of vision, and then develops into blind spots which block out large parts of the patient's visual field. It is not uncommon for people to believe they are going blind when it first occurs. Some sufferers also see jagged patterns, flashing lights or spinning Catherine wheels.

When the headache eventually starts, victims - who number about four million in Britain - have to retreat to a quiet, dark room because they become acutely sensitive to sound and light. They have to lie completely still because movement makes the headache worse, while a heightened sense of smell often means that even a whiff of perfume can trigger vomiting. Other symptoms include mood changes, fatigue, difficulty in finding words, depression, elation, hunger, thirst and altered libido.

Desperate diseases require desperate remedies, and sufferers have resorted to a range of solutions from avoiding certain kinds of food to taking a daily pill. Some inject themselves with the most up-to-date and expensive drugs while others turn to ancient treatments, such as the herbal remedy feverfew and acupuncture.

Women who suffer badly with migraines which occur at the time of their monthly period, have been known to resort to hysterectomy to cure them, only to discover after the operation that it has had no effect on the headaches. A trial of simple homoeopathic medicine whose results are to be announced later this month, however, showed that its healing substances could help some sufferers.

But neither conventional nor alternative medicine has yet discovered the underlying causes of this complex disorder. What physiological mechanism can spark off and account for such a diverse ragbag of symptoms? Why does it affect three times as many women as men? How do we know that when some victims experience the 'aura' without the headache, as sometimes happens, they are actually experiencing migraine and not epilepsy or some other complaint?

The mysteries of migraine have preoccupied scientists since the time of Hippocrates. In the second century AD, the Greek physician Aretaeus described the complaint vividly, in a way that would be easily recognised by sufferers today. 'It occasions unseemly and dreadful symptoms . . . nausea; vomiting of bilious matters; collapse of the patient . . . there is much torpor, heaviness of the head, anxiety; and life becomes a burden . . . The patients are weary of life and wish to die.'

Even before Aretaeus recorded its symptoms, Julius Caesar suffered from it, while subsequently Kant, Freud and George Eliot were victims. The cause has variously been attributed to an excess of black and yellow bile; a disturbance starting in an internal organ, such as the stomach or uterus, which radiates round the body; hereditary taint; masturbation; and nerve storms.

Migraine is still the subject of intense research and debate. One 20th-century theory, which lasted more than 40 years, was that the blood vessels in the brain first constrict, causing the lights or aura, then dilate, causing the headache. But that theory has now been abandoned as too simplistic. The latest research revolves around one of the naturally occurring chemical messengers in the brain, serotonin, which transmits messages from one nerve cell to another and also conveys messages to the blood vessels. At the beginning of an attack, serotonin is released from many of its storage sites both within the brain and in the platelets, the clotting cells in the blood.

When this happens, blood vessels in the outer lining of the brain swell up and this is what appears to cause the headache. But although serotonin has been at the centre of research for 30 years, its exact role is still not fully understood. Leading migraine neurologist Joseph Blau pointed out recently in the medical journal The Lancet that serotonin was also said to be 'the mechanism for hunger, sleep, anorexia nervosa, depression and obsessive-compulsive disorders - surely too many conditions to be explained by one chemical'.

Since the cause of migraine is so imperfectly understood, many doctors advocate caution in treating it. Oliver Sacks believes in 'patience, not pestering' and defines the best treatment for migraine sufferers as self-help and common sense, aided by a few simple drugs.

Self-help often starts with patients trying to identify those factors which trigger an attack - such as certain foods or windy weather - and avoiding or eliminating them. But many patients cannot track down the culprit or culprits. Chocolate was once thought to be a common trigger, because so many sufferers revealed that they had eaten some before an attack. Now, however, a craving for sweet things is seen as an early sign of a migraine, so chocolate eating is seen as a symptom rather than a cause of the disorder.

Stress is thought to be another important trigger, but some victims find that their attacks come on as they are emerging from a stressful period, such as at the end of a busy week at work. At times of intense stress, migraine attacks may disappear. Oliver Sacks cites the extraordinary case-history of a man who suffered migraines from the age of seven, until he was detained in the Auschwitz concentration camp during the war. Throughout the seven years of his imprisonment, and despite the fact that his wife, his parents and other close relatives were killed, he did not have a single attack. After the war had ended, the migraine attacks resumed.

For those (such as women with menstrual migraine) who cannot discover what triggers their attacks, or who cannot avoid the trigger factors, simple painkillers may prove effective. But they have to be taken as soon as the headache appears because often, during a migraine attack, the digestive system shuts down and nothing is absorbed.

Newer treatments include the use of combination drugs which contain two active ingredients, one for the pain and one for the sickness. Anti-depressants and heart drugs can also be used on a daily basis, as a preventive measure. The most effective drugs are the beta blockers, developed to lower blood pressure, which have also been found to be useful in migraine.

Jo Liddell, director of the British Migraine Association, found that her migraines were more or less cured when a well-informed GP put her on beta-blockers as a preventive measure. 'My life was utterly changed. My migraines just stopped. It took a while to believe it and it took even longer for my husband and family to realise that this new woman could gad about, making up for lost time,' she says in The Migraine Handbook by Jenny Lewis, published this month.

Migraine sufferers have to be wary of the side-effects of certain drugs, which can be devastating. Ergotamine, a drug derived from a mould grown on rye bread, works by constricting the blood vessels; but it can cause dependence and if taken in large doses, can induce headaches. It is also dangerous in pregnancy and, according to the Migraine Handbook, caused one sufferer who was using it to lose three babies during pregnancy.

Victims who find little relief from simple painkillers or preventive drugs have turned in large numbers to the new drug Sumatriptan, made by Glaxo, which appears to help about eight out of 10 patients. 'It was like a miracle,' according to Janet Swain, a 48-year-old housewife from Staplehurst, Kent. 'I know it sounds dramatic, but it has changed my life because I can now make arrangements and plan ahead. I do not have to keep cancelling things, such as dinner parties.'

Two drawbacks mar the picture. Since it is a new drug (first licensed in injection form in 1991), doctors will not know for some time if it has long-term side-effects. Short-term effects include tingling sensations, dizziness, drowsiness and tightness of the chest. Secondly, the drug - which seems to work by counteracting the release of the chemical serotonin from its storage sites - is extremely expensive, with each injection costing pounds 20 and each tablet pounds 8.

Family doctors who have to keep their prescribing within cash limits are not happy about the expense. Some refuse to prescribe it; others ration their patients by limiting how much they will prescribe per month.

Worries about the side-effects of these powerful new drugs have prompted some sufferers to seek gentler alternatives - such as hypnosis, osteopathy, massage and yoga. Dr Tom Whitmarsh is a medically qualified homoeopath; he is now working at the Glasgow Homoeopathic Hospital. He recently decided to demonstrate the benefits of his branch of alternative medicine by conducting a controlled trial of homoeopathic remedies. For this, he took on 60 patients at the Charing Cross Hospital migraine clinic in London last year.

Half of them were given a homoeopathic remedy and half a placebo (or dummy pill) for four months, without knowing which of the two they were taking. Dr Whitmarsh said that although his results were 'not stunning', they did show that the active ingredient had a greater effect than the placebo. 'These remedies also do not run the risk of producing dependence in patients,' he added.

Perhaps the most effective 'treatment' of all is for people with the condition to experiment until they discover which remedy suits them best. As Oliver Sacks puts it: 'If patients with migraine achieve understanding, both intellectual and emotional, they will feel infinitely less passive and put-upon by their migraine. They will see it less as an enemy, though not exactly as a friend.'

'The Migraine Handbook', by Jenny Lewis with the British Migraine Association, was published by Vermillion earlier this month at pounds 6.99. 'Migraine' by Oliver Sacks will be published by Pan Books in October. The British Migraine Association is at 178a High Road, Byfleet, West Byfleet, Surrey KT14 7ED.

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