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Epilepsy information card
⚡ Neurological

Epilepsy

A neurological condition causing recurrent seizures. Seizures vary enormously — most are not convulsions.

🧸 Early Years 🏫 School Age 🧑 Teens & Adults ♾️ Lifelong

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📖 Overview

Epilepsy is a neurological condition characterised by recurrent, unprovoked seizures caused by abnormal electrical activity in the brain. It is one of the most common neurological conditions in the world, affecting around 1 in 100 people in the UK.

Seizures vary enormously in type and presentation. Understanding the type of seizure matters — it affects diagnosis, treatment, safety planning, and how people around the person should respond.

TYPES OF SEIZURES

Tonic-Clonic Seizures (formerly Grand Mal)
The most recognised seizure type. Involves two phases: the tonic phase (muscles stiffen, the person falls, may cry out) and the clonic phase (rhythmic jerking of limbs). The person is unconscious during the seizure. Afterwards there is a postictal phase — confusion, exhaustion, headache, and sometimes temporary weakness (Todd's paresis) that can last hours. Most tonic-clonic seizures end within 1-3 minutes. One lasting more than 5 minutes is a medical emergency.

Absence Seizures (formerly Petit Mal)
Brief episodes — usually 5-30 seconds — where the person appears to stare blankly and switch off. There is no falling, no jerking, and often no awareness that anything happened. The person may flutter their eyelids or make small movements. Absence seizures can happen dozens or hundreds of times a day. They are frequently mistaken for daydreaming or inattention and may go undiagnosed for years.

Focal Seizures (formerly Partial Seizures)
Focal seizures begin in one specific area of the brain and may stay localised or spread to become generalised. They are divided into:
Focal aware seizures (formerly simple partial) — the person remains conscious and may experience unusual sensations, emotions, movements, or automatic behaviours. They may describe a strange smell, a rising feeling in the stomach, déjà vu, or involuntary movement of one limb.
Focal impaired awareness seizures (formerly complex partial) — consciousness is affected. The person may appear confused, make repetitive automatic movements (automatisms) like lip-smacking, chewing, or fidgeting, and have no memory of the episode afterwards.

Myoclonic Seizures
Sudden, brief muscle jerks — often in the arms, legs, or whole body. May occur in clusters, often shortly after waking. Common in juvenile myoclonic epilepsy. The person usually remains conscious.

Atonic Seizures (Drop Attacks)
Sudden loss of muscle tone causing the person to drop to the ground without warning. Significant injury risk. Helmets are sometimes used for people with frequent atonic seizures.

Infantile Spasms (West Syndrome)
A severe epilepsy syndrome beginning in infancy, involving clusters of brief body spasms. Associated with significant developmental impact. Requires urgent diagnosis and treatment.

Dravet Syndrome
A severe, treatment-resistant epilepsy beginning in the first year of life, caused in most cases by mutations in the SCN1A gene. Characterised by prolonged febrile seizures initially, then multiple seizure types. Significant developmental and cognitive impact. Sodium channel blockers (carbamazepine, lamotrigine) are contraindicated and can worsen seizures.

Lennox-Gastaut Syndrome
A severe epilepsy syndrome characterised by multiple seizure types, intellectual disability, and a characteristic EEG pattern. Treatment-resistant in most cases.

STATUS EPILEPTICUS
A seizure lasting more than 5 minutes, or two or more seizures without recovery between them. This is a medical emergency. Call 999. Rescue medication (midazolam buccal or diazepam rectal) should be administered if prescribed and available.

SUDEP
Sudden Unexpected Death in Epilepsy (SUDEP) is real and should be discussed openly with people who have epilepsy. The risk is highest with uncontrolled tonic-clonic seizures, particularly nocturnal seizures. Seizure monitoring devices and sharing a room during sleep reduces risk for high-risk individuals.

EPILEPSY AND NEURODIVERGENCE
Epilepsy co-occurs at significantly higher rates in autism, ADHD, Angelman Syndrome, Rett Syndrome, and other neurodevelopmental conditions. Managing epilepsy in someone who is also autistic or has a learning disability requires particular attention to communication, behavioural signs of seizure activity, and medication side effects that the person may not be able to report.

🔍 Key Characteristics

Recurrent seizures varied types presentations
May lose consciousness or awareness
Convulsions staring confusion unusual sensations
Post-seizure fatigue confusion postictal
Triggers missed meds lack sleep stress
Some types involve automatisms repetitive movements
Risk of injury during seizures
Medication controls in 70 percent cases

🌅 What Day to Day Life Can Look Like

Medication must be taken consistently — timing and adherence are critical for seizure control
Triggers — tiredness, stress, alcohol, flashing lights, missed medication, illness — need to be managed
Independence is affected — driving is not possible until seizure-free for a year, swimming needs supervision
The unpredictability of seizures creates constant background anxiety
Fatigue is common — both from the condition and from medication side effects
Post-seizure (postictal) state can involve confusion, exhaustion, headache, or temporary weakness lasting hours
Cognitive effects — memory, concentration, processing speed — are common in epilepsy itself and from medication
Watching for safety constantly — avoiding baths, cooking alone, heights without precautions
People around the person need to know what to do in a seizure — many do not
Epilepsy affects mood — depression and anxiety are very common alongside epilepsy

What People Often Get Wrong

Not all seizures are convulsions — staring, confusion, and unusual sensations are all seizures
Epilepsy does not mean intellectual disability
You should not put anything in someone's mouth during a seizure — this is dangerous and outdated advice
You do not need to call 999 for every seizure — most end on their own within a few minutes
Epilepsy is not caused by stress alone — it is a neurological condition
Flashing lights trigger seizures in only around 3% of people with epilepsy — photosensitivity is not universal
Epilepsy is not a mental health condition — though mental health difficulties commonly co-occur
Most people with epilepsy live full, active lives with appropriate support
Epilepsy and learning disability are separate things — epilepsy does not cause learning disability
SUDEP is real and should be discussed openly — awareness saves lives

What Helps

Medication adherence essential for control
Seizure action plan known by all
First aid training for those around
Trigger management sleep hygiene stress reduction
Medical alert bracelet or card
Risk assessment for activities swimming heights
Rescue medication buccal midazolam when prescribed
Do not restrain protect from injury
Time seizures call 999 if over 5 minutes
Regular neurology follow-ups specialist nurses
Informational only. Consult professionals for individualised support.

🏫 School & Education Support

Individual healthcare plan with clear seizure management protocol known by all staff
All staff trained in seizure first aid — including when to call 999 and when not to
Medication administration if needed during the school day
Fatigue management — rest after seizures, flexible timetable adjustments
No swimming without appropriate supervision and a clear safety plan
Cognitive and learning support if medication affects concentration and memory
Exam concessions — extra time, rest breaks, separate room if needed
Communication with parents about seizure activity and any changes
No punishing absence or catch-up pressure after seizures or prolonged postictal states
Consideration of placement for students with frequent or unpredictable seizures affecting safety

⚠️ Safety & Red Flags

Prolonged seizure over 5 minutes — call 999, this is a medical emergency
Seizures occurring in clusters without recovery in between
Seizure activity increasing or type changing — needs urgent neurology review
Water safety — unsupervised baths or swimming are serious risks
SUDEP risk — nocturnal seizures particularly increase risk
Medication non-adherence — critical to address the reason
Signs of depression or suicidal ideation — very common alongside epilepsy
Significant cognitive decline — may indicate seizure activity or medication effect
Safeguarding concerns in people with epilepsy who also have communication difficulties
Any new seizure type or loss of seizure control after a period of stability needs medical review

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