The third in our series on diseases that have impacted on social history and culture – and how medicines have enabled us to fight them.
People known to have suffered from epilepsy include ‘nonsense’ poet Edward Lear, novelist Fyodor Dostoyevsky, comic actor Bud Abbott (who masked the symptoms with the more socially acceptable state of drunkenness) and singer Ian Curtis of Joy Division. Living musicians who have (or have had) epilepsy include Prince, Neil Young, Mike Skinner, Lil Wayne and Richard Jobson. Politician Tony Coelho, who developed epilepsy following a head injury in his teens, was a Democrat congressman for many years. During Coelho’s first election campaign, his opponent asked the press how people would feel if Coelho had a seizure at the White House. Coelho commented: “Well, in the 13 years I have served in Washington I knew a lot of people who went to the White House and had fits. At least I’d have an excuse.”
Epilepsy is a neurological disorder characterised by recurrent seizures. There are more than a dozen common types of epilepsy with different patterns of symptoms. A traditional distinction is made between petit mal or ‘absence seizures’ (which are brief and passive) and grand mal or tonic-clonic seizures (which are violent and protracted). Epilepsy affects up to 5% of the population at some time in their lives, with 3% of people in the UK being diagnosed with the condition. It is usually caused by brain injury or other trauma, but can have genetic causes. In some patients, seizures can be triggered by ashing lights or other forms of ‘sensory overload’. People usually recover from epilepsy after some years, but it can cause death through injury or lead to suicide. A persistent seizure or status epilepticus can be fatal, but is rare.
Epileptic seizures were considered ‘divine’ by the Greeks, and have been speculatively linked to ‘visionary’ experiences. However, they were also considered evidence of ‘demonic possession’ by the Catholic Church and treated with ‘exorcism’ rituals, a form of torture that was usually fatal. Jean-Martin Charcot, considered the founder of modern neurology, saw people with epilepsy con ned among the ‘incurably insane’ inmates of the Saltpêtrière institution in Paris in the late 19th century. The word ‘lunatic’ derives from the Greek word for people with epilepsy, as their seizures were believed to be affected by the moon – a belief possibly inspired by the incidence in some women of seizures linked to the menstrual cycle.
The association of fits with visionary states is a recurrent theme in mystical and Gothic literature. Regrettably, the ‘possession’ myth has been exploited by commercial horror films, often made from a religious perspective and featuring stereotypes such as the foulmouthed adolescent girl in The Exorcist. The Joy Division song ‘She’s Lost Control’ described a grand mal seizure in bleakly sympathetic terms, contrasting the helplessness of a seizure with the myths and the lies of normal life.
According to a NICE audit, epilepsy causes about 1,000 deaths each year in the UK, and 42% of these are avoidable. Revised NICE guidance issued in January 2012 aimed to give doctors a wider range of choices, outlining how and when treatment for different types of epilepsy should be provided. Reduction in medication side-effects continues to be a high priority, as does developing an effective medication for the 30% of patients who do not respond to current therapies. Medical education to overcome the stigmatisation of people with epilepsy remains vital.
Epilepsy is normally treated with anticonvulsant drugs, taken daily. Over 20 such drugs are in use in the UK, including Tegretol (carbepamazine), Rivotril (clonazepam), Lamictal (lamotrogine) and Epilim (sodium valproate). These tend to have sedative or tranquillising properties. Side-effects commonly include persistent tiredness, weakness, nausea, dizziness and energy loss. Drug adherence is a major issue in the treatment of epilepsy, as patients may prefer the risk of seizures to constant side-effects. Other forms of treatment include brain surgery, electrical stimulation (e.g. of the vagus nerve), avoidance of sensory triggers and psychological therapies.