About epilepsy
A condition most people have heard of, and few people recognise.
Epilepsy is a neurological condition in which a person has a lasting tendency to have seizures - brief bursts of unusual electrical activity in the brain. It is usually diagnosed after two or more seizures that had no obvious immediate cause.
It is common, and it is not one thing
Around 50 million people worldwide have epilepsy. It can begin at any age, and in around half of cases no cause is ever identified. In others it follows a head injury, a stroke, an infection, a tumour, or a genetic difference in how the brain develops.
There are more than forty recognised seizure types. Two people with the same diagnosis can have entirely different experiences, which is why general advice only goes so far - and why a person's own account of their seizures is worth more than any leaflet.
What seizures can look like
Seizures are broadly grouped by where in the brain they start.
Focal seizures
Start in one area of the brain. The person may stay fully aware, or may lose awareness while still appearing awake. Signs include staring, lip-smacking, fumbling with clothing, repeating a phrase, sudden fear or deja vu, an unusual smell or taste, or a rising sensation in the stomach.
Absence seizures
A pause of a few seconds. The person stops, stares, and does not respond, then carries on with no memory of the gap. In children these are frequently mistaken for daydreaming or inattention for years before anyone recognises them.
Tonic-clonic seizures
The kind most people picture. The body stiffens, the person falls, and the limbs jerk rhythmically. Breathing may become laboured and the lips may look blue. It usually stops on its own within a couple of minutes.
Myoclonic, tonic and atonic
Sudden jerks, sudden stiffening, or a sudden loss of muscle tone that causes a fall without warning. Atonic seizures in particular carry a high risk of head injury.
Photosensitivity
Between three and five in every hundred people with epilepsy are photosensitive: flashing lights, strobing, and some high-contrast moving patterns can trigger a seizure. It is more common in children and young people, and it is far rarer than the public assumes - most people with epilepsy are not affected by light at all.
Treatment
Around seven in ten people with epilepsy could become seizure-free with appropriate anti-seizure medication. That figure hides a serious gap: roughly three quarters of people with epilepsy in low-income countries never receive the treatment they need. For those whose seizures do not respond to medication, options can include surgery, nerve stimulation devices, or dietary therapy.
What people with epilepsy tend to ask for
- Learn what to do, so nobody has to improvise around you.
- Do not call an ambulance reflexively - for many people a seizure is routine, and an unnecessary hospital trip is expensive and exhausting.
- Do not treat a seizure as a spectacle. Clearing onlookers is a kindness.
- Understand that confusion and exhaustion afterwards can last hours.
- Ask what helps. Most people know exactly what they need.