Living with seizures

SHE is well known in Britain as an author, both of fiction and nonfiction, a broadcaster and a journalist, but Polly Toynbee has recently extended her range by writing two plays with campaigning medical themes.Two years ago she wrote one about the impact of breast cancer; now she has written Brain Storm, which illustrates the difficulties people experience in coming to terms with a diagnosis of epilepsy, and with discussing their worries with the medical professions. Apparently they find it hard to get across the effects that some drugs can have on everyday life. Although sufferers understand that the primary aim must be to control, or even to stop, the seizures, this goal is sometimes attainable only at a cost of blunted memory, reduced attention span and slower thought processes.

Even comparatively minor changes in quality of life may have dramatic consequences on professional and domestic life. Patients are the first to agree that having to tolerate uncontrolled seizures would be even more disruptive to their office and household; however, they would be grateful for some time to discuss with their consultant the possibility of changing treatment, or dosage, so as to discover the best regimen suited to physique, psyche and lifestyle.

As in much of medicine, a plethora of treatments is available and changing to a different drug of the same group without changing the type of drug can make a difference to side effects and to the patient's quality of life. Personal tailoring of drugs is increasingly common, and in time it may be possible to select the ideal fit of a drug by studying a patient's genotype.

Brain Storm, which had its premiere in Sydney earlier this month to coincide with the opening of the 18th World Congress of Neurology, examines sufferers' hopes of being given a clearly defined diagnosis and an effective treatment that frees them of seizures without giving rise to detrimental side effects. The quandaries, problems and messages of the play are explored through the thoughts of a professor of neurology, who does not come face to face with the patients but nevertheless hears them recount their case histories on stage.

Too often, it seems, patients' expectations are not entirely met by the reality of the treatment; in many cases, the drugs should have changed years earlier and new, more beneficial treatments could perhaps have been offered but were never considered. These stories prompt the professor to analyse his own cases, assessing the treatment that he hands out _ in some cases he had to admit to himself that the regimens had been determined by his own inertia rather than the patients' needs. He was also made more aware of the difficulties that many patients have in communicating with healthcare professionals. On occasions, there are also problems in establishing good lines of communication between people working with different medical disciplines.

Epilepsy is the most common brain disorder in every country; 40 million people worldwide suffer from the condition at any one time, and more than 100 million have displayed epileptic symptoms at some time in their lives. In Britain there are 400,000 sufferers, while 1 million have had it at some point in their lives and 1.5 million will have experienced a seizure on at least one occasion _ epilepsy is not diagnosed on the basis of one incident.

In Australia there are about 90,900 people who had conditions associated with epilepsy in 1998, or about 0.5 per cent of the population. As those watching the television series Rome will have noticed, Julius Caesar had seizures; he took them in his stride and did not let them spoil his parties. Most people are not so laid-back, or so powerful that they can ignore not only the convulsions but the effect that it has on those around them.

Brutus et al denied historians the opportunity of finding out what effect the disease might have had on Caesar _ and the Empire _ in the long term; in 21st century Britain, however, the condition increases the unemployment rate by a factor of three when comparing people with similar qualifications and education. The objective of those treating epilepsy is not only to rid their patients of convulsions, but also to rid society of the stigma attached to the condition. Perhaps the latter would be easier if more people realised that a seizure occurs when the brain spontaneously undergoes aberrant changes in electrochemical activity. Seventy to 80 per cent of attacks can now be controlled with drugs.

The play in Sydney was funded and organised by the International Bureau of Epilepsy and by UCB, one of the new international biopharmaceutical manufacturers that produced, among other products, Keppra (levetiracetam). It was not mentioned throughout the evening, but it is perhaps no coincidence that its use so far has shown it to be a very clean drug, with a good side effect profile that can now be used to treat partial seizures.