Epilepsy: The Complete Guide to Seizures, Treatment, Safety and Living Well

Around 50 million people worldwide live with epilepsy, making it one of the most common neurological conditions. With the right diagnosis and treatment, up to 70 percent of them could live free of seizures. Yet in many low- and middle-income countries, most people with epilepsy receive no treatment at all, and stigma remains one of the biggest barriers to care.

This guide explains what epilepsy is, the different types of seizures, how to help someone having a seizure, how epilepsy is diagnosed and treated, and how people with epilepsy can live full, safe and independent lives.

What is epilepsy?

Epilepsy is a condition of the brain in which a person has a tendency to have repeated, unprovoked seizures. A seizure is a sudden burst of abnormal electrical activity in the brain that temporarily disrupts how it works. This can cause changes in movement, sensation, awareness, behaviour or emotions.

Epilepsy is usually diagnosed when someone has had at least two unprovoked seizures more than 24 hours apart, or one seizure with a high risk of further seizures, or a recognised epilepsy syndrome. Having a single seizure does not necessarily mean you have epilepsy. Seizures caused by a clear trigger such as very low blood sugar, alcohol withdrawal or a high fever in a young child (febrile seizures) are not epilepsy.

Who gets epilepsy?

Epilepsy can start at any age, but it is most commonly diagnosed in young children and in people over 60. According to the World Health Organization, nearly 80 percent of people with epilepsy live in low- and middle-income countries, where the risk of premature death is up to three times higher than in the general population.

What causes epilepsy?

In about half of people, no cause is found. Known causes include:

• Brain injury before, during or after birth, including lack of oxygen at birth
• Head injury, for example from road accidents or falls
• Stroke, the most common cause in older adults
• Brain infections such as meningitis, encephalitis, cerebral malaria and neurocysticercosis (a tapeworm infection that is a leading cause of epilepsy in parts of Africa, Asia and Latin America)
• Genetic factors; some epilepsy syndromes run in families
• Brain tumours
• Developmental brain abnormalities
• Dementia, including Alzheimer’s disease

WHO estimates that around a quarter of epilepsy cases are preventable, through safer births, preventing head injuries, controlling infections and reducing stroke risk.

Types of seizures

The International League Against Epilepsy (ILAE) classifies seizures by where they start in the brain.

Focal seizures

Focal seizures start in one area of the brain. Symptoms depend on which area is affected.

• Focal aware seizures: the person stays aware. They may feel a rising sensation in the stomach, déjà vu, strange smells or tastes, tingling, or jerking of one limb. These were once called “simple partial seizures” or “auras”.
• Focal seizures with impaired awareness: the person is not fully aware and may stare, chew, smack their lips, fiddle with clothes or wander. They usually do not remember it afterwards.
• Focal to bilateral tonic-clonic seizures: a focal seizure spreads to both sides of the brain and becomes a convulsive seizure.

Generalised seizures

These involve both sides of the brain from the start.

• Tonic-clonic seizures (once called “grand mal”): the person loses consciousness, the body stiffens (tonic phase), then jerks rhythmically (clonic phase). They may cry out, bite their tongue, go blue around the lips or lose bladder control. Afterwards they are often confused, sleepy and have a headache.
• Absence seizures (once called “petit mal”): brief blank spells, usually lasting a few seconds, most common in children. They can happen many times a day and may be mistaken for daydreaming.
• Myoclonic seizures: sudden, brief jerks of the arms or legs, often in the morning.
• Atonic seizures: sudden loss of muscle tone causing the person to drop to the ground (“drop attacks”).
• Tonic seizures: sudden stiffening of muscles.

Seizure first aid: what to do

For a tonic-clonic (convulsive) seizure

• Stay calm and stay with the person.
• Time the seizure.
• Protect them from injury: move hard or sharp objects away, cushion their head with something soft.
• Loosen tight clothing around the neck and remove glasses.
• Do not restrain them or try to stop the movements.
• Do not put anything in their mouth. They cannot swallow their tongue, and objects can break teeth or cause choking.
• When the jerking stops, roll them onto their side into the recovery position and check their breathing.
• Stay with them, reassure them and allow them to rest as they recover. Speak calmly; they may be confused.
• Do not give food or drink until they are fully alert.

Call emergency services if:

• The seizure lasts longer than five minutes, or longer than is usual for that person
• Another seizure follows without the person regaining consciousness
• It is their first seizure
• They are injured, pregnant, or have diabetes
• The seizure happened in water
• They have difficulty breathing or do not wake up after the seizure

A seizure lasting more than five minutes, or repeated seizures without recovery in between, is called status epilepticus and is a medical emergency. Some people with epilepsy have emergency medicine, such as buccal (inside the cheek) midazolam or rectal diazepam, prescribed for this situation, with a care plan explaining when to give it.

For a focal seizure with impaired awareness

Guide the person gently away from danger such as roads or stairs, do not restrain them, stay with them and speak calmly until they are fully aware again.

How epilepsy is diagnosed

Diagnosis is based mainly on a careful description of what happened, from the person and from anyone who saw it. A video of an episode on a mobile phone can be extremely helpful for specialists. Many conditions can look like seizures, including fainting (syncope), heart rhythm problems, panic attacks, low blood sugar and functional (non-epileptic) seizures, so specialist assessment is important.

• EEG (electroencephalogram): records electrical activity of the brain through small sensors on the scalp. A normal EEG does not rule out epilepsy, and sometimes a sleep-deprived or prolonged EEG is used.
• MRI brain scan: looks for structural causes such as scarring, tumours or developmental abnormalities.
• ECG: recommended to rule out heart rhythm problems that can cause blackouts.
• Blood tests: to check for causes such as low sodium or blood sugar, and sometimes genetic testing.

Guidelines recommend that anyone with a suspected first seizure is seen by a specialist promptly, ideally within two weeks.

Treatment with anti-seizure medicines

Most people with epilepsy are treated with anti-seizure medicines (sometimes called anti-epileptic drugs). These do not cure epilepsy but prevent seizures in around two thirds of people. The choice depends on the type of epilepsy, age, sex, other conditions and potential side effects.

Common medicines include levetiracetam, lamotrigine, carbamazepine, oxcarbazepine, sodium valproate, zonisamide, lacosamide and topiramate. Ethosuximide is used for childhood absence epilepsy. Older medicines such as phenobarbital and phenytoin remain important and affordable in many countries; WHO includes phenobarbital on its essential medicines list as an effective first option where other drugs are not available.

Taking medicines safely

• Take medicines every day at the same times; missed doses are the most common reason for breakthrough seizures
• Do not stop suddenly, as this can trigger severe seizures
• Stick to the same brand where advised, as switching between versions of some medicines can affect seizure control
• Tell any healthcare provider or pharmacist that you take anti-seizure medicine, as many medicines interact
• Report side effects such as rashes, mood changes, dizziness or tiredness
• Some medicines reduce the effectiveness of hormonal contraception

Valproate: an important warning

Sodium valproate is very effective for some types of epilepsy but carries a high risk of serious birth defects and developmental problems if taken in pregnancy. Regulators in many countries require that it is not used in women and girls who could become pregnant unless other treatments are unsuitable, and only with a pregnancy prevention programme. Never stop valproate without speaking to your specialist first. Regulators have also reviewed possible risks for children of fathers taking valproate around conception, and advice may continue to change.

When medicines do not work

If seizures continue after trying two appropriate medicines at proper doses, epilepsy is called drug-resistant. About a third of people fall into this group. They should be referred to a specialist epilepsy centre, as other treatments may help.

• Epilepsy surgery: if seizures start from one area of the brain that can be safely removed, surgery can stop seizures completely in many people.
• Vagus nerve stimulation (VNS): a device implanted in the chest sends regular pulses to the vagus nerve in the neck, reducing seizure frequency.
• Deep brain stimulation and responsive neurostimulation are used in some centres.
• Ketogenic diet: a high-fat, very low-carbohydrate diet supervised by a dietitian; especially helpful for some children.
• Newer medicines: such as cenobamate, and cannabidiol for certain severe childhood epilepsy syndromes (Dravet and Lennox-Gastaut).

Seizure triggers

• Missing medicine doses
• Lack of sleep
• Stress
• Alcohol, especially heavy drinking and withdrawal
• Recreational drugs
• Illness and fever
• Hormonal changes, including around periods (catamenial epilepsy)
• Flashing or flickering lights in about 3 percent of people with epilepsy (photosensitive epilepsy)
• Some medicines, such as certain antidepressants, antibiotics and the painkiller tramadol

Keeping a seizure diary can help identify patterns and triggers.

Safety at home and outdoors

• Take showers rather than baths, and never bathe a child with epilepsy unsupervised
• Swim only with someone who knows what to do if you have a seizure, in supervised settings
• Use guards on fires and heaters, and cook using back hotplates with handles turned inwards; microwaves are safer
• Avoid heights, such as ladders, if seizures are not controlled
• Consider safety pillows and seizure alarms if you have seizures at night
• Carry or wear medical identification
• Make sure family, friends and colleagues know seizure first aid

SUDEP: a risk worth knowing

Sudden unexpected death in epilepsy (SUDEP) is rare, affecting roughly 1 in 1,000 adults with epilepsy each year, but it is the leading cause of epilepsy-related death. The biggest risk factor is having uncontrolled tonic-clonic seizures, especially at night. Taking medicines regularly, avoiding triggers, not sleeping alone if night seizures occur, and seeking review if seizures are not controlled all reduce risk. Talking about SUDEP can be frightening, but knowing about it empowers people to reduce their risk.

Epilepsy and women

Contraception

Some anti-seizure medicines, such as carbamazepine, phenytoin and topiramate, make hormonal contraception less effective. Lamotrigine levels can fall when taking combined contraceptive pills. Ask your specialist or a sexual health nurse about suitable options, such as the copper or hormonal coil.

Pregnancy

Most women with epilepsy have healthy pregnancies and babies. Planning ahead is vital. Talk to your epilepsy team before trying to conceive to review your medicine and take a higher dose of folic acid, often 5 milligrams daily, starting before conception. Do not stop your medicine when you find out you are pregnant; uncontrolled seizures can harm you and your baby. Medicine levels may change during pregnancy, so closer monitoring is common. Breastfeeding is encouraged for most women taking anti-seizure medicines.

Menopause

Some women notice changes in seizure frequency around menopause. HRT can be used, but may affect some medicine levels.

Epilepsy in children

Many children with epilepsy grow out of it, especially those with childhood absence epilepsy or self-limited epilepsy with centrotemporal spikes. Schools should have an individual healthcare plan, staff trained in seizure first aid and emergency medicine where prescribed. Children with epilepsy are more likely to have learning difficulties, ADHD and anxiety, so assessment and support are important. Most children can join in sports and school trips with sensible precautions.

Driving

Laws vary between countries, but most require people with epilepsy to be seizure-free for a set period before driving, commonly 6 to 12 months for a private car licence, and much longer for commercial vehicles. You are usually legally required to inform the licensing authority. Driving against advice risks your life and others’, and can invalidate insurance.

Work and education

People with epilepsy work in almost every field, including healthcare, teaching, law and business. Some jobs, such as commercial driving, flying or working at heights, may be restricted if seizures are not controlled. In many countries, epilepsy is recognised as a disability and employers must make reasonable adjustments, such as flexible hours to protect sleep, time off for appointments and avoiding hazardous tasks. You are usually not required to disclose epilepsy, but sharing it can help colleagues respond safely if a seizure occurs.

Epilepsy, mental health and memory

Depression and anxiety are much more common in people with epilepsy, related both to the condition and to the stress of unpredictability and stigma. Memory problems are also common, caused by seizures, medicines or the underlying cause. Talk to your epilepsy nurse or specialist; treatment and practical strategies can help. Some anti-seizure medicines affect mood, so any changes should be reported.

Stigma and human rights

In many communities, epilepsy is still wrongly believed to be contagious, a curse or caused by evil spirits. People with epilepsy have been excluded from school, denied work, prevented from marrying and even restrained or harmed. Epilepsy is a brain condition. It cannot be caught from saliva or contact. WHO’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022–2031 calls on countries to close the treatment gap and end discrimination. Purple Day on 26 March and International Epilepsy Day on the second Monday of February raise awareness worldwide.

The role of the epilepsy nurse

Epilepsy specialist nurses support people from diagnosis onwards: explaining the condition, adjusting medicines with the specialist team, writing care plans, training families and schools in emergency medicine, supporting women before and during pregnancy, and offering a direct line when problems arise. Ask whether your service has an epilepsy nurse.

Living well: practical tips

• Use a weekly pill organiser and phone alarms to avoid missed doses
• Keep a spare supply of medicine at work or in your bag
• Plan for travel across time zones by adjusting dose times gradually, with advice from your epilepsy team
• Protect your sleep, especially around exams, night shifts and celebrations
• Keep a seizure diary or app to track seizures, possible triggers and side effects
• Share your care plan with family, school, college or workplace
• Consider a seizure alert device or app if you live alone or have night-time seizures
• Connect with an epilepsy support organisation or peer group

Functional (non-epileptic) seizures

Some people have episodes that look like epileptic seizures but are not caused by abnormal electrical activity in the brain. These are called functional or dissociative seizures. They are real and involuntary, not “put on”, and can be just as disabling. They are often linked to how the brain responds to stress or past trauma, though not always. Diagnosis usually involves video-EEG recording. Anti-seizure medicines do not help, but specialist psychological therapy and education can reduce or stop episodes. Some people have both epileptic and functional seizures.

Older adults and epilepsy

New-onset epilepsy is common after the age of 60, most often caused by stroke, small vessel disease in the brain or dementia. Seizures in older people can be subtle, such as brief confusion, staring or unexplained falls, and are easily mistaken for transient ischaemic attacks, fainting or worsening memory. Treatment usually starts with low doses of medicines that have fewer interactions and side effects, such as lamotrigine or levetiracetam, and careful attention to falls risk, bone health and other medicines.

Epilepsy and sport

Most sports are safe and beneficial for people with epilepsy, and regular exercise may even reduce seizures in some people. Team sports, running, cycling on quiet paths with a helmet, gym work and racquet sports are generally fine. Water sports, climbing, diving and motor sports carry higher risks if seizures are not controlled and need careful planning, supervision or avoidance. Make sure a coach or training partner knows seizure first aid.

Frequently asked questions

Can epilepsy be cured?

Some people, particularly children, outgrow epilepsy. Surgery can cure some forms. For many, medicines control seizures completely, and some may eventually be able to stop medicines under specialist supervision after a long seizure-free period.

Is epilepsy contagious?

No. You cannot catch epilepsy from another person.

Can I drink alcohol?

Small amounts may be fine for some people, but heavy drinking and hangovers can trigger seizures. Discuss with your epilepsy team.

Will I have to take medicine for life?

Not always. Some people can gradually stop after two or more years without seizures, but this should only be done with specialist advice.

Can flashing lights cause seizures in everyone with epilepsy?

No, only in a small proportion with photosensitive epilepsy.

But what if people treat me differently?

Stigma is real, and fear of it stops many people from seeking help. But the more people understand epilepsy, the less power stigma has. Sharing accurate information, teaching seizure first aid to people around you and knowing your rights at school and work can change attitudes. Many people with epilepsy find that being open, when they feel ready, brings more support than they expected.

Related: Living with seizures: triggers · Seizure first aid and status epilepticus · EEG test: what to expect

Sources: World Health Organization (epilepsy fact sheet; Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022–2031), International League Against Epilepsy, National Institute for Health and Care Excellence (NG217), Medicines and Healthcare products Regulatory Agency and European Medicines Agency valproate safety advice, Epilepsy Foundation.