Epilepsy

What it's like

From the inside and from the outside — and why some seizures go unrecognised for years.

From the inside: when a temporal lobe seizure begins

• Déjà vu: A sudden, overwhelming sense of having lived this moment before.
• Fear: A rush of terror out of nowhere — sometimes mistaken for panic attacks for years.
• Memories: Experiences with the feel of perceptions, memories and emotions, often drawn from the person's own past.
• A smell: Less often, a smell that isn't there — almost always unpleasant — sometimes with a rising feeling in the stomach.

Seen from outside, seizures look very different from one another. Some make a person act confused or stare into space; others make them lose awareness, fall and shake.

One seizure isn't epilepsy

Up to 10% of people have a single seizure at some point in their lives. Epilepsy means two or more seizures that weren't provoked by something else.

• Myth: Put something in their mouth so they don't swallow their tongue. In fact: Never put anything in someone's mouth during a seizure.
• Myth: Hold them still so they don't hurt themselves. In fact: Don't hold someone down or try to stop their movements; move things away from them instead.
• Myth: A seizure always means shaking on the floor. In fact: Some seizures are just confusion or staring; some begin as déjà vu or fear.
• Myth: Epilepsy can't really be treated. In fact: Up to 70% of people with epilepsy could be seizure-free with the right diagnosis and treatment.

What's happening in the brain

Where the commonest kind of epilepsy starts, and why it feels the way it does. The model lights each one as you read.

Where it starts

The most common form of epilepsy begins in the inner temporal lobe, usually from a hippocampus that has lost neurons and become scarred — hippocampal sclerosis.

Déjà vu

Stimulating the entorhinal cortex in people with epilepsy brought on déjà vu more often than stimulating the hippocampus or amygdala. The feeling of familiarity has its own machinery — and a seizure can set it off with nothing familiar there.

Fear

When seizures involve the temporal limbic areas, fear can be the main symptom, recorded from temporal limbic and prefrontal regions.

Memories and feelings

Seizures in the temporal lobe — and stimulating it — can evoke experiences with the feel of perception, memory and emotion, often from the person's own past.

A smell that isn't there

In 5.5% of people with hard-to-treat temporal lobe epilepsy, seizures brought smell auras, almost always unpleasant; the amygdala may play a key role.

Causes and triggers

Why epilepsy happens, and what sets seizures off.

Causes include brain damage before or around birth, severe head injuries, strokes, brain infections, some genetic conditions and brain tumours — but in about half of cases, no cause is found.

Most people with epilepsy can name something that sets their seizures off. In one clinic, 97% could, and the commonest were stress, lack of sleep and tiredness.

What helps

Medicines first — and, for some, surgery.

• Antiseizure medicines (Taken daily to stop seizures happening.): In newly diagnosed epilepsy, 47% became seizure-free on their first medicine and 14% more on a second or third. After two years without seizures, stopping can be considered.
• Surgery (For temporal lobe epilepsy that medicines haven't controlled.): In a randomised trial, 58% were free of seizures that impair awareness a year after surgery, against 8% on medication, with better quality of life.

If the first medicine fails because it doesn't work, the odds that another will drop — only 11% then became seizure-free. That's the point to ask about a specialist epilepsy centre and whether surgery is an option.

Why seizure control matters

Sudden unexpected death in epilepsy is rare — about 1 in 1,000 adults with epilepsy a year, 1 in 4,500 children — and its main risk factor is frequent convulsive seizures. Freedom from them is strongly linked to lower risk.

If someone has a seizure

What to do, what not to do, and when to call for help.

During the seizure

1. Stay calm, stay with them: And keep others calm.
2. Ease them down: If they're falling, ease them to the ground and clear the space around them.
3. On their side: Turn them gently onto one side, mouth toward the ground.
4. Cushion and loosen: Something soft under the head; glasses off; loosen anything around the neck.
5. Time it: So you know if it goes past 5 minutes.
6. Afterwards: Help them sit somewhere safe, explain what happened once they're alert, and offer to call someone.

Don't

• Hold them down or try to stop their movements.
• Put anything in their mouth.
• Offer food or water until they're fully alert.

Call emergency services if…

The seizure lasts more than 5 minutes; another follows soon after; they're injured, have trouble breathing or don't wake up; it happens in water; it's their first seizure; or they're pregnant or have diabetes.

Supporting someone

Living with epilepsy, and being around someone who does.

The WHO notes that the stigma and discrimination around epilepsy are often harder to overcome than the seizures themselves.

Day to day

• Protect sleep and manage stress — they're the commonest triggers.
• Take medicine every day as prescribed, and talk to the doctor before changing it.
• Make sure the people around you know the first-aid steps.
• Ask about local rules on driving — they vary by country.

Put it into practice

Four real situations.

• On the bus, a man suddenly stiffens, falls to the floor and starts shaking. What do you do? Clear the space, cushion his head, turn him on his side and time it. That's the CDC's first aid — and if it passes 5 minutes, call an ambulance.
• For a year, your friend has had sudden waves of intense déjà vu, sometimes with a rising feeling in her stomach and a strange smell. She thinks she's just stressed. What should she do? See a doctor and describe exactly that — it could be temporal lobe seizures. Temporal lobe seizures can begin as déjà vu, and smell auras often come with a rising stomach feeling.
• Your housemate has epilepsy and has been up all night revising for a week before exams. What's worth knowing? Lack of sleep and stress are the commonest seizure triggers. Stress, sleep deprivation and tiredness were the most reported triggers.
• Your dad's temporal lobe epilepsy hasn't been controlled by two medicines. What's worth asking his neurologist? Whether surgery is an option. In a randomised trial, 58% of people with temporal lobe epilepsy were free of seizures impairing awareness a year after surgery, against 8% on medication.