Non-epileptic seizures

Also called Functional seizures, Dissociative seizures, FND, Functional neurological disorder

Seizures with no abnormal electrical activity. Entirely real, not put on, and consistently treated badly.

What it is

The word most often used about these patients, behind their backs, is "genuine", as in "is it genuine". That question is both wrong and revealing.

Non-epileptic seizures look like epilepsy but do not involve abnormal electrical activity in the brain. They are a functional neurological disorder: the hardware is intact and the software has a fault. The person is not producing them deliberately and cannot stop them by deciding to.

They account for a substantial minority of people attending epilepsy clinics, and many are treated with anti-epileptic drugs for years without benefit before anybody reconsiders.

Signs you might notice

Features that point away from epilepsy: eyes closed during the event, side-to-side head movement, pelvic thrusting, a fluctuating course, crying, and events lasting several minutes or longer.

Recall of some of what happened during the event.

No response to anti-epileptic medication.

But no single feature is diagnostic. This needs video EEG, not an opinion at a bedside.

How it can affect day-to-day life

The diagnosis is frequently delivered in a way that destroys the therapeutic relationship: told there is nothing wrong, that it is stress, or that it is all in the mind. People leave feeling accused, and many never engage with treatment.

Many people have both epilepsy and non-epileptic seizures, which makes everything harder and means neither should be assumed.

Emergency services get called repeatedly, and people receive emergency medication they do not need, with real risks attached.

Supporting someone well

Take the diagnosis seriously and say so out loud. Functional does not mean fake, and hearing that from somebody who supports them changes how people engage with treatment.

Stay calm during an event. Keep the person safe, do not restrain, do not put anything in the mouth, and do not call an ambulance unless there is injury or the pattern is different from usual.

Do not give rescue medication for known functional seizures.

Ask for psychological therapy, which is the treatment with the evidence, and for a clinician who explains the diagnosis properly rather than by exclusion.

Write a plan that ambulance crews and workplaces can follow, so a known event does not become an emergency every time.

Where to get help

Ask for a neurologist with an interest in functional disorders, and for video EEG if the diagnosis is uncertain.

FND Hope UK and the neurosymptoms.org site, written by a neurologist, are the two resources patients consistently find most useful.

If seizures change in character, get them reassessed. A new pattern deserves fresh eyes.