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Clinical knowledge

Know about epilepsy

Seizure classification, epilepsy types, syndromes and investigations.

Classify the seizure, then the epilepsy

Keep event diagnosis, seizure class, epilepsy type and syndrome distinct. The 2025 ILAE seizure framework uses focal, generalised, unknown whether focal or generalised, and unclassified classes. Describe the chronological semiology; for focal and unknown classes, characterise consciousness using both awareness and responsiveness when ascertainable.

Epilepsy types

The epilepsy-type framework includes focal, generalised, combined generalised and focal, and unknown. Integrate semiology with EEG, imaging and clinical context. Do not equate a bilateral convulsion with generalised epilepsy: a focal seizure may evolve to bilateral tonic–clonic activity.

Syndrome and aetiology

Syndrome identification integrates age at onset, seizure repertoire, EEG features and developmental course. Consider structural, genetic, infectious, metabolic, immune and unknown aetiologies, with more than one potentially relevant. A syndrome is not established by an isolated waveform or a single symptom.

History before a label

Reconstruct the sequence, duration, triggers and recovery using witness accounts and available video. Examine competing explanations including syncope, functional seizures, parasomnias and movement disorders. An acute symptomatic seizure requires a different diagnostic and treatment discussion from an enduring predisposition to unprovoked seizures.

Investigations should answer a question

EEG supports classification and diagnosis in the appropriate clinical setting. MRI evaluates structural aetiology when indicated. A normal routine EEG cannot exclude epilepsy. If uncertainty remains, consider sleep recording, ambulatory EEG or video-EEG according to the diagnostic question and local pathway.

Link the diagnosis to a treatment plan

Review every seizure type before choosing an antiseizure medicine. Consider comorbidity, interactions, reproductive circumstances, organ function, adherence and the person’s goals. An apparent lack of response should prompt reassessment of diagnosis, classification and treatment suitability before escalation.

Explore the wider collection

Clinical approach

Event diagnosis, investigation and deliberate treatment selection.

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Drug-resistant epilepsy

Reassess the diagnosis and consider specialist escalation.

Read here →

Scientific evidence

References, study findings and their limitations.

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Learning lab

Explore clinical pathways and teaching cases.

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Clinical & practical readingRead in more depthOpen the topics you need for explanations, practical questions and source references.

New practical questions checked 5 November 2026. Reading guides retain their own source dates. This online expansion is additional to the existing downloadable editions.

Learn about epilepsy — understand the diagnosisEpilepsy is a group of brain conditions with a tendency to repeated epileptic seizures. It is not contagious and it does not define a person’s intelligence, character or potential. Understanding your own seizure type is more useful than comparing yourself with a dramatic seizure seen on screen.

Clinical and practical questions

How do seizure class, epilepsy type and syndrome differ?

Classify the event first, then the epilepsy type and any recognisable syndrome. These describe different levels of the diagnosis and should not be treated as interchangeable labels.

ILAE · clinical definition of epilepsy ↗ · ILAE · seizure classification (2025) ↗

What changed in the 2025 classification?

The main classes remain focal, generalised, unknown whether focal or generalised, and unclassified. For relevant classes, consciousness is assessed through both awareness and responsiveness. Describe symptoms in their chronological sequence.

ILAE · seizure classification (2025) ↗

Why distinguish acute symptomatic seizures?

A seizure close to an acute brain or systemic insult has a different diagnostic context from an unprovoked seizure. Establish the precipitating condition and reassess the continuing treatment rationale rather than automatically assuming lifelong epilepsy therapy.

ILAE · acute symptomatic seizures ↗

Read the guide in depth

A seizure and epilepsy are different ideas

A seizure is an episode caused by abnormal brain electrical activity. Epilepsy describes an ongoing tendency to epileptic seizures. One event does not always establish epilepsy: clinicians consider whether it was provoked by an acute illness or another cause and whether further seizures are likely.

  • Ask: was this event definitely epileptic, and what supports that conclusion?
  • Ask what remains uncertain and which follow-up is planned.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Seizures can affect movement, senses or consciousness

Some seizures start in a network on one side of the brain; others involve networks on both sides. They may cause an unusual sensation, speech difficulty, staring, sudden jerks, loss of tone, stiffening or convulsions. More than one seizure type can occur in the same person.

  • Describe what happened before using a label.
  • A familiar “aura” can itself be a focal seizure.
  • A focal seizure may spread into a bilateral tonic-clonic seizure.

Supporting source ↗ · Supporting source ↗

Why names may change

Seizure terminology has been updated over time, including an ILAE update in 2025. Older letters may say “partial”, “complex partial” or “secondary generalisation”; newer reports may describe focal seizures and whether consciousness is preserved or impaired. A changed name does not by itself mean the illness has worsened.

  • Ask your clinician to write the current name and its plain-language meaning.
  • Keep older terms alongside newer ones in your history to avoid confusion.

Supporting source ↗ · Supporting source ↗

Diagnosis begins with the story

The sequence before, during and after an event is central. Witness accounts, safe recordings, medical history and examination help distinguish epilepsy from other causes. Fainting, cardiac problems and functional seizures can resemble epilepsy. Functional seizures are real events and require an appropriate explanation and treatment pathway.

  • Bring an observer or a written account where possible.
  • Include posture, warning symptoms, triggers, duration and recovery.
  • Do not assume every future symptom has the same cause.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

What EEG, MRI and other tests can tell you

An EEG samples electrical brain activity; it can support classification, but a normal routine EEG does not rule out epilepsy. MRI looks for structural changes and answers a different question. An ECG and blood tests may help find alternative explanations or acute contributors. Not every person needs the same set of tests.

  • Ask what question each test is intended to answer.
  • Ask how the result fits your history rather than reading it in isolation.

Supporting source ↗

Causes and triggers are not the same

An underlying cause may be genetic, structural, infectious or another brain condition; sometimes no cause is identified. A trigger is a circumstance that increases seizure likelihood in someone susceptible. Missing medicine or poor sleep can matter without being the original cause of the epilepsy.

  • Keep brief, factual notes about possible patterns.
  • Avoid blaming yourself or someone else for an event.
  • Not all seizures have an identifiable trigger.

Supporting source ↗ · Supporting source ↗

Treatment aims for your best possible life

Antiseizure medicines are the main treatment for many people. Other options can include specialist dietary treatment, devices or surgery after assessment. Treatment success includes seizure control, manageable adverse effects and participation in daily life. Do not start a restrictive therapeutic diet without a trained clinical team.

  • Ask for a clear plan if seizures continue.
  • Bring side effects and quality-of-life concerns to reviews.
  • A specialist opinion can be useful when diagnosis or treatment remains uncertain.

Supporting source ↗ · Supporting source ↗

Start with a manageable first-month plan

You do not have to learn everything at once. Put the essentials in one folder: diagnosis explanation, medicine list, seizure diary, first aid instructions and follow-up contacts. Choose one person to learn first aid with you and bring your highest-priority questions to the next appointment.

  • Understand the medicine schedule and what to do after a missed dose.
  • Discuss driving, water safety and work risks with your team.
  • Agree when the diagnosis and treatment will be reviewed.

NICE NG217 · information and support ↗

When seizures continue despite treatment

Ask for a comprehensive epilepsy-service review after two appropriate, tolerated and adequately tried medicine schedules have not achieved lasting seizure freedom. The review checks diagnosis and treatment use and considers further medicines, surgery, dietary therapy or devices. A surgical assessment is a discussion of options, not a commitment to an operation.

Supporting source ↗ · Supporting source ↗

Functional seizures need their own care

Functional seizures are real, involuntary events that differ from epileptic seizures. The conditions can coexist. A specialist may use the history, witness video and video-EEG of typical episodes to clarify what is happening. Treatment can include a clear explanation and psychological therapies. Do not change antiseizure treatment yourself when the diagnosis is uncertain.

Supporting source ↗

Genetics is more than a family history

A genetic cause may arise for the first time in a family. Testing can sometimes explain epilepsy or guide treatment, but may return an uncertain result or no diagnosis. Ask whether testing would answer a useful question for you, and about counselling, consent and possible implications for relatives.

Supporting source ↗

Epilepsy can begin in later life

New spells in an older adult need careful assessment for epilepsy and other causes, including fainting and cardiac events. Review other illnesses, memory, falls, kidney function and the full medicine list. Practical support and tolerability are as important as a medicine choice on paper.

Supporting source ↗

Worldwide evidence and local access

The 2025 Global Burden of Disease publication estimated 51.7 million people living with epilepsy in 2021, with an uncertainty interval of 44.9–58.9 million. This is a historical modelled estimate. Access to diagnosis and reliable medicine supply remains unequal; ask about locally available care and referral rather than assuming that every treatment is accessible everywhere.

Supporting source ↗ · Supporting source ↗

Sources and further reading
Seizure first aid — what to do, step by stepStay with the person, protect them from injury and time what happens. Many seizures stop by themselves, but prolonged seizures, breathing problems and particular circumstances need an ambulance. In Australia call 000; use the local emergency number overseas.

Clinical and practical questions

What belongs in an individual emergency plan?

Specify the person’s usual events, first response, thresholds for emergency services, any prescribed rescue treatment, who is trained to give it and recovery supervision. Review the plan after clinically important changes.

Epilepsy Foundation · management plans ↗

Read the guide in depth

Notice the seizure and start timing

Seizures can include staring, confusion, unusual movements or a fall with stiffening and jerking. Note the start time as soon as possible; if you arrived later, record that the start time is unknown. Ask another person to manage the phone while you stay nearby.

  • Check for immediate danger to yourself and the person.
  • Look for a medical ID or action plan if readily available.
  • Do not delay emergency help to open an app, film or find paperwork.

Supporting source ↗

Protect someone having a convulsive seizure

Clear nearby hazards and cushion the head with something soft and flat. Do not pin down the person or force their limbs. Do not force the jaw open or put fingers, a spoon or any other object into the mouth. Move the person only if needed to escape immediate danger.

  • Keep onlookers back and preserve privacy.
  • Do not give food, drink or ordinary tablets during impaired awareness.
  • Do not attempt to stop the jerking.

Epilepsy Action Australia · seizure first aid ↗ · Supporting source ↗

Help someone who is confused or wandering

A seizure does not have to involve shaking. Stay nearby, speak simply and guide the person away from roads, stairs, heat or water without grabbing them unless immediate danger requires it. Do not argue, shout questions or assume that unusual behaviour is deliberate.

  • Time the period of altered awareness and the recovery separately.
  • Follow their action plan if available.
  • Seek emergency help if the episode is prolonged, unusual or safety cannot be maintained.

Supporting source ↗

When to call an ambulance

Call 000 when a convulsive seizure reaches 5 minutes, another begins without recovery, breathing is abnormal afterwards, there is serious injury, or the event occurs in water. Call for a first or unknown seizure, a seizure during possible pregnancy, an event outside the usual plan, or if you are unsure.

  • Call earlier if the person’s plan directs it.
  • Call 000 for a seizure in a person with diabetes, especially if awareness is impaired; do not give anything by mouth while they are not fully alert.
  • Seek help if consciousness is not returning within 5 minutes after the seizure, or recovery is unusual.
  • Tell the dispatcher the location, timing, breathing and known epilepsy history.
  • Call an ambulance if the person may be pregnant or the event is inconsistent with their prescribed management plan (ANZCOR).

Supporting source ↗ · Supporting source ↗

Check breathing and recovery

Once jerking stops, assess responsiveness and breathing. If unresponsive but breathing normally, gently place the person on their side and keep checking. If unresponsive and not breathing normally, call 000, begin CPR and use an AED if available, following dispatcher instructions. Gasping is not normal breathing.

If the person is unresponsive and not breathing normally, call 000 in Australia and follow the emergency dispatcher and ANZCOR basic life support instructions. Once the seizure stops, an unresponsive person who is breathing normally should be placed in the recovery position.

  • Stay until the person is safely recovering or care is handed over.
  • Explain quietly what happened when they can understand.
  • Do not leave a drowsy person alone to sleep without checking their breathing and recovery.

Supporting source ↗ · Supporting source ↗

Rescue medicine is a separate, prescribed plan

Some people have emergency medicine for a prolonged seizure or a cluster. Only someone authorised and trained for that person should administer it according to the written plan. The exact medicine, route, timing, repeat limits and ambulance instructions must be prescribed; there is no universal internet dose.

  • Check the person, medicine, expiry and written instructions.
  • Record exactly what was given and when.
  • Continue first aid and breathing observation; follow the plan’s ambulance instructions.

Epilepsy Action Australia · seizure first aid ↗ · Supporting source ↗

Water and other difficult settings

A seizure in water is an emergency even if it stops quickly because water may have entered the lungs. Keep your own safety first, support the face above water if safe, and remove the person only when safe to do so. Call an ambulance and assess breathing.

  • Do not enter dangerous water or place yourself at risk.
  • If a child has a fever, never place them in a bath during the seizure.
  • Tell responders about any possible submersion.

Supporting source ↗ · Supporting source ↗

Record what matters after the event

Once safety is established, write a short witness account rather than trying to name the seizure. Describe the first change, responsiveness, movements, duration, colour and recovery. A video can help clinicians if safe, appropriate and respectful, but first aid always comes first.

  • Check for injury and arrange a safe way home when appropriate.
  • Record emergency calls and rescue medicines.
  • A new pattern, unexpectedly slow recovery or repeated events warrants urgent clinical advice.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Sources and further reading
Seizure safety and SUDEP — practical risk reductionA safety plan should protect health while supporting independence. Risks vary greatly between people and can change over time. Discuss your own seizures, home, sleep and activities with the treating team, then agree the measures that address the risks that matter to you.

Clinical and practical questions

What makes risk counselling useful?

Make the discussion individual, proportionate and actionable. Document the person’s priorities, seizure-related risk factors, agreed measures and follow-up. Avoid presenting a monitor as proven prevention for an individual patient.

Sydney Children’s Hospitals Network · SUDEP ↗

Read the guide in depth

What SUDEP means

SUDEP is a sudden unexpected death in someone with epilepsy without another identified cause such as drowning, injury or prolonged status epilepticus. It is uncommon overall, but risk is not equal for everyone. Ongoing tonic-clonic seizures, especially frequent or night-time events, are important reasons for a personalised conversation.

  • Ask directly: what affects my risk and what can we change?
  • Discuss the topic in a way that suits your readiness and understanding.

Supporting source ↗ · Supporting source ↗

Focus first on seizure control

Taking prescribed treatment consistently and getting help for continuing seizures are practical priorities. Tell the team about tonic-clonic seizures, night-time events and any barriers to taking medicines. An effective plan addresses supply, side effects and routines rather than assuming missed treatment is simply forgetfulness.

  • Bring an honest seizure record.
  • Ask when uncontrolled seizures need specialist reassessment.
  • Agree who to contact if the pattern changes.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Make a night-time plan

Seizures during sleep may be overlooked. Tell your clinician about unexplained night-time injuries, witnessed episodes or repeated suspicious events. Discuss whether observation, a monitor or another arrangement is worthwhile for your situation, balancing safety with privacy, sleep and what a supporter can realistically do.

  • Write down how a helper will respond if alerted.
  • Review the plan after a change in seizures or living arrangements.
  • Do not change sleeping arrangements solely on the basis of a general risk estimate.

Supporting source ↗ · Supporting source ↗

Understand what an alert device can and cannot do

Devices may detect certain seizure patterns and alert someone, but can miss seizures or produce false alarms. No alarm or special pillow guarantees protection against SUDEP. A useful device plan includes an available responder, working communication, power and a response procedure, rather than the device alone.

  • Ask which seizure types it detects and what evidence supports it.
  • Check alert delivery, false alarms, battery and network failure.
  • Choose only with informed expectations and clinician input.

Supporting source ↗ · Supporting source ↗

Reduce fall, burn and bathroom hazards

Choose changes suited to your seizure pattern. Clear dangerous clutter, consider sharp corners and glass, and plan access if help is needed. Bathroom safety deserves special attention when awareness or balance can be lost. An occupational therapist can help identify practical changes without unnecessarily restricting daily life.

  • Discuss a shower rather than an unsupervised bath.
  • Arrange a way for a trusted helper to enter if needed.
  • Consider lower-risk ways to handle hot liquids and cooking.

Supporting source ↗

Water, heights and sport need individual decisions

Exercise and participation are valuable. Risks depend on what might happen if a seizure occurs during that particular activity. Swimming and open water require a specific supervision plan; a lifeguard does not replace a companion who understands your seizures. Activities at height, near moving machinery or underwater warrant specialist discussion.

  • Tell the chosen companion the action plan.
  • Check local water and activity conditions before starting.
  • Stop and seek reassessment if seizure control or recovery changes.

Supporting source ↗ · Supporting source ↗

Make response arrangements usable

A first aid plan works best when the people likely to be present have seen it and know their roles. Decide who calls 000, who stays with you and where any prescribed rescue medicine is kept. A voluntary contact alert or demonstration feature is not confirmation that an ambulance has been called.

  • Practise finding the plan and making the call.
  • Update contacts when home, school or work arrangements change.
  • Review whether helpers need formal first aid or rescue medicine training.

Supporting source ↗

Revisit risk without letting it dominate life

A useful review ends with a small number of realistic actions. Discuss changes after a seizure recurrence, a new medicine, moving home, pregnancy or loss of a regular supporter. Ask for psychological support if worry about risk is disrupting sleep or stopping activities beyond what the clinical plan requires.

  • Choose the next two actions and a review date.
  • Share information only with the people you choose or need for safety.
  • Ask for bereavement support after an epilepsy-related death.

Supporting source ↗ · Supporting source ↗

Putting SUDEP numbers into context

The AAN/AES guideline communicates an average adult risk of about 1 in 1,000 people with epilepsy each year; about 999 in 1,000 would not experience SUDEP that year. This average is not an individual prediction. Risk differs substantially with seizure pattern and control, so ask what matters in your own circumstances.

Supporting source ↗

Sources and further reading
Children, school and growing independenceChildren need safe care, learning support and opportunities to participate. Epilepsy affects each child differently; a diagnosis alone does not tell a teacher how a child learns or what they can do. Build the plan around the child’s actual seizures, development and goals.

Clinical and practical questions

What should be shared with education staff?

Share an agreed functional plan with the child and family’s involvement: event recognition, recovery needs, training, adjustments and review triggers. Keep educational advice individual rather than inferring limitations from the diagnosis alone.

Epilepsy Action Australia · school resources ↗ · Victorian education guidance · individual adjustments ↗

Read the guide in depth

Get a clear explanation of the child’s epilepsy

Ask the paediatrician or paediatric neurologist to explain seizure types, the reason for the diagnosis and what remains uncertain. Describe development, learning and behaviour alongside the events. A safe video may help if episodes are frequent; adults should still prioritise first aid and the child’s privacy.

  • Keep a list of confirmed seizure types.
  • Ask what changes need earlier reassessment.
  • Do not interpret a single test result without the child’s clinical history.

Supporting source ↗ · Supporting source ↗

Put the action plan where it is needed

The plan should describe the child’s usual seizures, first aid, recovery, emergency thresholds, contacts and any prescribed rescue treatment. School, childcare and other carers need the current version and the training relevant to their role. Make a specific handover when staff change.

  • Check how the plan reaches relief teachers and excursion staff.
  • Record the review date and responsible coordinator.
  • Check rescue medicine availability and expiry under local policy.

Supporting source ↗

Make learning difficulties visible and specific

Changes in attention, memory, language or consistency may relate to seizures, sleep, treatment or a separate learning condition. A child who loses track after a brief seizure may need the missed instruction repeated, rather than punishment. Report a new decline rather than assuming it is inevitable.

  • Keep examples of the task and difficulty.
  • Ask about learning or neuropsychological assessment when appropriate.
  • Discuss short instructions, written prompts and time to recover.

Supporting source ↗

Plan school recovery and participation

Agree what happens after a typical seizure: where the child rests, who observes them, when family is contacted and when they can return to class. Avoid blanket exclusions from learning or activities. Recovery needs can vary, so use the plan and the child’s condition on the day.

  • Identify a quiet, supervised recovery place.
  • Arrange access to missed teaching or assessment adjustments.
  • Ask the child how support can preserve dignity.

Supporting source ↗ · Supporting source ↗

Medicines need careful handovers

Give carers the verified prescription and local authorisations, not verbal instructions remembered from an earlier visit. Check liquid concentrations and measuring devices with the pharmacist. Report troublesome sleepiness, behavioural change, rash or other new symptoms to the treating team. Never abruptly stop treatment without medical direction.

  • Name who gives each dose during shared care or school hours.
  • Ask for medicine-specific advice after a missed dose or vomiting.
  • Keep medicines secured according to school and home policy.

Supporting source ↗

Sport, camps and water activities

Plan the supervision and response for each activity, including transport and overnight stays. Water deserves particular caution; a responsible adult should understand the child’s seizures and know when to get emergency help. Participation decisions should be individual rather than based on the epilepsy label alone.

  • Review the activity with the clinical team if seizures are uncontrolled or changing.
  • Check rescue medicine, trained staff and access to an ambulance.
  • Include sleep and medicine routines in camp planning.

Supporting source ↗

Listen to the child and the siblings

Give explanations suited to the child’s age and understanding. Ask about teasing, embarrassment, fear and friendships as well as seizures. Siblings may need simple first aid knowledge and reassurance that they are not responsible for preventing every event. Adults should remain responsible for safety arrangements.

  • Agree what classmates are told and involve the child where appropriate.
  • Give a trusted adult clear responsibility for bullying concerns.
  • Protect ordinary family activities and the child’s interests.

Supporting source ↗ · Supporting source ↗

Build independence and transition early

Gradually involve the young person in naming their medicine, describing a seizure and asking questions at appointments. Discuss confidentiality, consent, relationships, alcohol, study and future driving as age appropriate. Transition should include a named adult service and a clear handover, rather than an abrupt end to paediatric care.

  • Practise parts of the appointment independently when appropriate.
  • Check who manages prescriptions and appointments during transition.
  • Transfer the current action plan, medicine history and clinical summary.

Supporting source ↗

A child needs a syndrome-specific treatment plan

Staring alone does not diagnose absence epilepsy. A comparative childhood absence trial supported ethosuximide and valproate over lamotrigine for its initial treatment outcome, with different adverse-effect profiles. This does not make those results applicable to every generalised seizure type. Ask the paediatric team to explain the diagnosis, learning needs and why a particular treatment fits.

Supporting source ↗

Suspected infantile spasms need urgent assessment

Repeated brief clusters of sudden flexing, stiffening or head drops in an infant, especially with loss of developmental skills, need urgent paediatric assessment. If safe, record an episode, but do not delay care to make a video. Infantile spasms require specialist diagnosis, EEG and prompt syndrome-specific treatment; the ICISS trial concerns supervised treatment rather than home dosing.

Supporting source ↗ · Supporting source ↗

Ask whether genetics could change care

Testing is particularly relevant to some early-onset, developmental or severe epilepsies, and can sometimes guide treatment or family counselling. Discuss possible results, including an uncertain variant or no answer, before testing. Results need specialist interpretation alongside the child’s clinical picture.

Supporting source ↗

Sources and further reading
Mental wellbeing — care for more than seizuresEmotional health belongs in epilepsy care. Fear, low mood, fatigue, isolation or behaviour changes deserve attention even when seizures are controlled. Support can include psychological treatment, practical changes and a review of medical contributors. You do not need to wait until you are in crisis to ask.

Clinical and practical questions

How can adverse effects be distinguished from other causes?

Establish the baseline, time course and functional impact. Consider epilepsy, sleep, psychosocial circumstances, comorbidity and medication exposure together; a temporal association is informative but does not alone prove causation.

Australian Government Medicine Finder · levetiracetam ↗

Read the guide in depth

Notice what has changed

Look for persistent sadness, loss of enjoyment, excessive worry, social withdrawal or changes in sleep, appetite and functioning. Symptoms can overlap with epilepsy, medicines and other health conditions; noticing a pattern is a reason for assessment, not a diagnosis.

  • Write one or two examples of the effect on daily life.
  • Mention concerns even if a questionnaire score seems low.

Supporting source ↗ · Supporting source ↗

Tell the team about timing

Mood and behaviour can be influenced by the condition, life circumstances or treatment. If a change followed a medicine start or prescribed dose adjustment, tell the prescriber promptly and include the date. Do not stop the medicine yourself while trying to test the connection.

  • Include sleep, seizures and other medicine changes.
  • Ask a trusted person what they have noticed, with your consent.

Epilepsy Foundation · mental health ↗ · Supporting source ↗

Fear after a seizure can become limiting

It is understandable to feel unsettled after an unpredictable event. Seek help if worry is persistently disrupting sleep, work, relationships or activities beyond the safety precautions agreed with your clinician. A practical seizure plan and treatment for anxiety can address different parts of the problem.

  • Separate the actual agreed precaution from a feared scenario.
  • Choose one activity to discuss resuming with appropriate support.

Supporting source ↗ · Supporting source ↗

Psychological treatment can be part of epilepsy care

A GP, psychologist or psychiatrist can help assess and treat depression or anxiety. Let them know about epilepsy and the full medicine list so treatment can be coordinated. Epilepsy does not mean every psychological symptom must wait for a neurologist appointment before receiving care.

  • Ask who will coordinate the mental health and epilepsy plans.
  • Request an interpreter or accessible format if needed.

Epilepsy Foundation · mental health ↗ · Supporting source ↗

Support concentration and fatigue without blame

Describe when tasks become difficult, what helps and whether the problem follows seizures or poor sleep. Use manageable routines, written reminders and planned breaks while seeking assessment for new or worsening problems. Difficulty keeping up is information for the team, not a measure of effort or character.

  • Bring concrete examples rather than only “my memory is bad”.
  • Ask whether cognitive assessment or practical support would help.

Supporting source ↗

Protect connection and choice

Decide what you want friends, colleagues or a partner to know. A short explanation and a clear first aid instruction can make support easier. Peer support can reduce isolation, but another person’s experience should not determine your medicine changes or individual safety decisions.

  • Choose one person you can contact on a difficult day.
  • Discuss how supporters can help without taking over.

NICE NG217 · information and support ↗ · Supporting source ↗

Know when help is urgent

Seek urgent same-day clinical help for major behavioural change, severe agitation, hallucinations, rapidly worsening depression or thoughts of self-harm. If there is immediate danger, you cannot keep yourself safe, or someone is unconscious or seriously unwell, call 000 or attend an emergency department.

  • Tell a trusted person and do not remain alone if unsafe.
  • Do not drive yourself when unsafe or medically restricted.

Supporting source ↗

Make a small follow-up plan

Choose one appointment, one person to involve and one practical change rather than trying to solve everything at once. Arrange a review to assess whether the support is helping. Include family or caregiver wellbeing if they are struggling with worry, exhaustion or responsibility.

  • Record the agreed next step and date.
  • Ask what to do if symptoms worsen before the appointment.

Supporting source ↗ · Supporting source ↗

What psychological treatment evidence supports

A Cochrane review found that skills-based psychological therapies can improve quality of life in adults and adolescents with epilepsy. This is a meaningful treatment goal even when seizures do not disappear. Depression also deserves active assessment and care; ask about psychological treatment, medicine options, interactions and follow-up.

Supporting source ↗ · Supporting source ↗

Sources and further reading
Work & study: plan participation around your needsTurn the effect of epilepsy into clear requests for practical support. The aim is to protect participation, learning and employment while addressing individual safety concerns.

Clinical and practical questions

What should a functional report describe?

Describe the person’s events, recovery, treatment effects and relevant task demands. Distinguish observed limitations from assumptions. Occupational and licensing decisions require the applicable standards and individual assessment.

Better Health Channel · epilepsy and employment ↗

Read the guide in depth

Describe the barrier before choosing an adjustment

Write down the task you are trying to do and the part that is difficult. “I need help” is less useful than “After an event I may miss the first class; I need a way to obtain the material and agree how catch-up work is managed.” Include barriers from treatment effects or transport where relevant.

  • Separate the essential task from how it is usually done. Could timing, location, equipment, supervision or the method of assessment change?
  • Consider predictable needs and occasional disruptions. A plan should cover both ordinary days and a seizure at work or study.
  • Choose a small number of changes to trial, with a date to review whether they help.

Supporting source ↗

At work: ask for a specific discussion

JobAccess explains reasonable adjustments and the Employment Assistance Fund (EAF). The EAF can assist eligible applicants with certain workplace modifications, equipment or services. Ask JobAccess about assessment and approval before spending money; funding is not automatic.

  • Example requests to discuss: stable start times, a plan for medical appointments, a quiet recovery space, agreed breaks or a temporary change in duties. Suitability depends on the role.
  • For machinery, heights, water, driving or lone work, arrange an individual assessment with the relevant treating and workplace professionals. A general website checklist cannot declare a job safe.
  • Agree who needs the seizure-response plan and who will coordinate first aid.
  • Record agreed adjustments, who implements them and when they will be reviewed. Ask the employer or an adviser about privacy and disclosure questions in your situation.

Supporting source ↗ · Supporting source ↗

At school, TAFE or university

Australian Disability Standards for Education address participation on the same basis as students without disability and reasonable adjustments. Contact the school or institution’s learning-support or accessibility team early. Adjustments should be discussed with the student and, where appropriate, their parent or carer.

  • Examples to discuss: access to missed material, flexible attendance during treatment, assessment arrangements or a plan for return after an event. Ask what evidence the institution needs.
  • Include excursions, practical classes, camps, placements and transport in the conversation rather than considering classroom time alone.
  • Agree staff responsibilities for seizure first aid, emergency communication and any prescribed rescue medication under local procedures.
  • Keep the student’s privacy and preferences central. Decide which staff need information and how substitute staff will receive essential instructions.

Supporting source ↗ · Supporting source ↗

Manage a period when driving is restricted

A transport problem can threaten employment or study even when the work itself remains manageable. Make a separate travel plan and discuss temporary adjustments before assuming you must stop participating.

  • List fixed attendance days, start and finish times and routes. Compare public transport, a trusted lift, community transport and commercial options.
  • Ask whether temporary remote attendance, a different shift or a different site is possible.
  • Calculate weekly costs and identify a backup for delays or cancelled lifts.
  • Use the on-site Transport guide to prepare questions about subsidies; do not assume a driving restriction alone establishes eligibility.
Review what actually works

Keep a short record of whether the adjustment reduced the barrier. If the plan failed, identify why: unclear responsibility, unsuitable timing, insufficient support or a change in seizures. Bring the evidence to a review meeting.

  • What became easier and what remains difficult?
  • Has the student or employee been consulted about changes?
  • Do first-aid instructions and emergency contacts remain current?
  • Is a clinician’s review needed before changing restrictions or duties?
Sources and further reading
Driving guidance: epilepsy and seizuresA practical guide to stopping, reporting, preparing for assessment and returning to driving. A date on a calendar alone does not authorise driving.

Clinical and practical questions

Can a website clear me to drive?

No. Use the current licensing standards and your treating clinician’s advice. Record your last event accurately and ask about the rules that apply to your licence and jurisdiction.

What should I prepare for a driving review?

Bring event dates, any change in treatment, witness descriptions, relevant reports and the licensing forms requested by your clinician.

Read the guide in depth

Start here after a seizure

Stop driving and arrange clinical assessment. Record the event and tell your clinician about any change in awareness, control, treatment or recovery. Do not drive yourself to the appointment. If the event is an emergency, call 000 in Australia.

Use this guide to prepare a complete history. Your clinician needs to classify the event before applying a driving category; a faint, functional seizure and epileptic seizure may require different assessments.

Supporting source ↗

Australian standards in brief

Private epilepsy licensing commonly starts from 12 months seizure freedom, with defined exceptions. Commercial standards are substantially stricter. First-seizure, newly treated, sleep-only, breakthrough and acute symptomatic categories each have additional criteria.

Medicine withdrawal usually restricts private driving through tapering and for three months after the last dose. Some dose reductions have specific exceptions. A seizure causing a crash or loss of control prevents use of shorter seizure-free periods. Sleep deprivation does not qualify as a reliably avoidable trigger for the shortened breakthrough category.

These are orientation points, not a complete reproduction of the standards. Ask your clinician to identify the precise table row, all conditions, overlapping rules and required review interval.

Prepare the event history

Write a chronology rather than only the most recent convulsion. Brief staring, loss of time, waking with injuries, jerks and altered awareness can change the assessment. Identify which events were witnessed and where dates are uncertain.

  • List all events in the previous year, plus older events relevant to sleep-only or long-term remission patterns.
  • Include medication changes with actual start, taper and final-dose dates.
  • Bring discharge letters, EEG/MRI reports if available, and a witness account.
  • Mention whether an event happened while driving, caused a crash or affected vehicle control.
Licence class and type of work

Bring your actual licence and describe what you drive, how often, whether passengers are carried and whether your work involves heavy vehicles or regulated driving. A private licence assessment must not be reused as commercial clearance.

Ask what happens if you change jobs or licence class. Fitness for a particular work task may require a separate workplace assessment even when private driving is permitted.

Notification, forms and the decision

In NSW, notify Transport for NSW as soon as a condition affecting safe driving occurs; do not wait for renewal. A doctor or specialist may complete the requested fitness assessment. The authority may set conditions, require review, suspend or vary the licence.

Keep a copy of the authority letter, medical advice, due dates and submissions. Ask the clinic who sends the report and how you will know it has been received. If a form is incomplete, contact the clinic before the deadline.

  • Ask: am I currently authorised to drive, or still awaiting a decision?
  • Ask: what written confirmation is needed before I resume?
  • Ask: when is the next medical report due, and who arranges it?
EEG, medication and review

A normal EEG does not by itself establish driving safety. Do not reduce, skip or stop medication to try to reach an off-treatment licensing milestone. Discuss proposed changes before making them.

Use a written medication and driving plan: what changes, when driving stops, how an unexpected seizure affects the plan, and when the clinician will review you. Ask about drowsiness, double vision or dizziness that may also affect driving.

Working and living while driving is restricted

Map essential journeys for work, study, childcare, groceries and appointments. Separate journeys that can move online from those that need a driver. Make a backup plan for a cancelled lift.

Ask an employer about temporary roster changes, remote tasks or accessible travel. Compare the total weekly cost and reliability of public transport, community transport and commercial rides. EpiRide is planned and cannot accept bookings or payments.

Return-to-driving checklist

Before the first journey, confirm the current licence status and all conditions with the relevant authority. Check insurer requirements, arrange overdue review appointments and discuss any remaining medication effects with your clinician.

  • Keep taking treatment as prescribed and avoid driving when sleep deprived or impaired.
  • Make a new plan promptly after any further seizure or relevant treatment change.
  • Do not assume a friend with the same diagnosis has the same restriction period.
New Zealand and other countries

New Zealand uses NZTA guidance, not the Australian timelines above. Licence class, seizure history and treatment status matter. Overseas visitors also need to confirm local licensing and insurance rules.

For any country, gather the authority name, required forms, specialist evidence, review date and written outcome. This page does not establish eligibility outside Australia.

Official publications: full document and epilepsy chapter

The full Austroads Assessing Fitness to Drive PDF is free to read from its official host. Its seizures and epilepsy chapter is section 6.2 and should be read with Part A and any relevant blackout or other-condition sections.

Austroads reserves reproduction rights and requires written permission. We have therefore provided an original EpilepsyWise guide for local download and direct official links below. A self-hosted full PDF and an extracted epilepsy-pages PDF are not yet available. They will require permission and version checking before hosting.

Sources and further reading
Travel with epilepsy: jet lag, medicine timing and trip planningPlan around your body clock, sleep and prescribed medicine routine when crossing time zones. Learn how waking-time dosing may fit an individual plan, protect the interval between doses and prepare for both the outward and return journey.

Clinical and practical questions

What should a travel dosing plan resolve?

Review the formulation, prescribed interval, itinerary, time-zone changes and ability to take treatment during transit. Document the schedule and contingencies for delays or illness. Avoid a single timing rule for all regimens.

Epilepsy Foundation · travel planning ↗

Read the guide in depth

Before you book

Tell your clinician where you plan to go, how long you will be away and what activities you expect to do. Ask whether a review is needed before travel. Airline policies, medicine import rules and insurance terms are separate matters: clinical fitness to travel does not automatically settle them.

  • Check the destination and every transit country for medicine restrictions. A medicine legal in Australia may be restricted elsewhere.
  • Ask the relevant embassy or consulate about permits, quantity limits and documentation for each medicine, including rescue medication if prescribed.
  • Read the insurer’s pre-existing-condition questions and policy wording. Obtain written clarification about epilepsy, seizures, cancellation and medical evacuation where relevant.
  • Check what happens if you cannot travel, run out of medicine or need to extend your stay.

Supporting source ↗

Build a medicine and document pack

Arrange the permitted medicine supply through your prescriber and pharmacist in time for departure. Carry clearly labelled medicines in their original packaging, copies of prescriptions and a doctor’s letter explaining the medicines and quantities. Keep essential medicines in hand luggage, subject to carrier and security requirements. Check storage needs.

  • List generic names, brand names, strength, dose and timing. Similar packaging or names overseas can be misleading.
  • Ask for a signed letter and required permits before travel; carry accessible copies and a secure backup.
  • Confirm any rules for liquids, syringes, refrigerated medicines or devices with the airline and border authorities.
  • If a supply problem occurs overseas, obtain appropriate local medical advice. Do not buy an unfamiliar substitute or change a dose yourself.

Supporting source ↗ · Supporting source ↗

Jet lag and epilepsy: two plans, one journey

Jet lag occurs when your body clock and the local day-night cycle no longer match. It differs from ordinary travel fatigue, although both can occur together. Sleep disruption can matter for people with epilepsy, and travelling can also interrupt treatment routines.

Make two linked plans: one protects sleep and recovery; the other specifies when each medicine is due. Moving bedtime towards local time does not automatically mean that your next medicine dose should move by the same number of hours.

  • Tell your team if seizures occur around sleep or waking, if tiredness is a personal trigger, or if you previously had seizures during or after travel.
  • Allow recovery time before demanding activities. Do not drive or undertake high-risk activities when sleep deprived or impaired.

Supporting source ↗ · Supporting source ↗

Your body clock, waking time and morning medicines

Your watch can change time zones immediately; your body clock takes time to adjust. During jet lag you may feel sleepy or wake nearer your home-time pattern. Adjustment varies with the journey and the person, so there is no fixed one-week rule. Tell your treating team about your actual sleep and waking pattern, especially if seizures tend to occur on waking.

Ask whether your morning medicine can remain linked to your main waking time as you settle in, rather than automatically copying the same clock time at your destination. If your prescriber has specifically agreed an on-waking routine, follow that routine within the timing limits in your travel plan. Listening to your body can help protect sleep, but waking time alone does not determine when a dose is safe.

For example, if you take lamotrigine once daily on waking under your existing prescription, ask how to keep that routine while travelling. Lamotrigine can also be prescribed twice daily; an on-waking example does not replace those instructions. Confirm the transition and permitted dose spacing for your own regimen before departure.

  • Plan the first destination dose from the last dose actually taken, alongside your expected sleep and waking times.
  • Keep a record and use reminders: an early awakening, a nap or sleeping in should not lead to an extra dose or a long unplanned gap.
  • Agree how to respond if waking time falls outside the planned dosing window, and how to resume your routine at home.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗ · Supporting source ↗

What scientific evidence supports a timing pattern?

This focused review, checked again on 22 October 2026, did not identify a randomised traveller trial establishing one best antiseizure medicine schedule for all time zones. This is a focused resource review, not a systematic review. Practical travel recommendations therefore combine adherence principles, drug-specific pharmacology and individual clinical judgement.

A 2023 pharmacokinetic simulation study examined delayed or missed doses of 11 antiseizure medicines. The modelled best response varied with delay, dose interval, drug half-life and patient factors. It did not test a jet-lag travel schedule or prove a clinical benefit from patients changing doses themselves.

Chronotherapy means tailoring treatment to seizure rhythms. A 2011 retrospective series of 17 children with night-time or early-morning seizures reported benefit from proportionally higher evening dosing. It involved selected children, not people crossing time zones. A January 2026 computational study also suggested timing could matter, especially for shorter-half-life medicines, but requires clinical validation.

A small 2006 observational study of 37 travellers found increased seizures after flying in some participants, particularly those with higher baseline seizure frequency or previous flight-related increases. It cannot isolate jet lag from sleep loss, stress or other travel factors, or tell us which dose-transition schedule works best.

  • Practical conclusion: preserve reliable dosing and sleep while arranging a personalised transition.
  • A universal rule such as “shift every medicine by 30 minutes each day”, “take an extra half dose”, or “make the evening dose larger” is not established by these studies.
  • Do not use a chronotherapy paper or a missed-dose model as a self-prescribing travel calculator.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Elapsed time matters more than the clock label

Crossing a time zone changes the displayed clock time immediately; it does not make the same amount of time pass in your body. An abrupt switch to the same local clock label can unintentionally shorten or lengthen the interval between doses.

The Australian travel factsheet advises spacing doses evenly, giving every 12 hours as an example. That example applies only when it matches your actual prescription. It is not a rule to convert once-daily, three-times-daily, unequal morning/evening or specifically bedtime-based regimens into twice-daily treatment.

  • Record the date, local time and time zone for the last dose actually taken.
  • Write subsequent planned doses using one agreed reference, with destination-time equivalents.
  • Check the elapsed hours between entries, including stopovers and the return flight.
  • Keep the prescribed amount and formulation unless your prescriber explicitly changes them.

Supporting source ↗ · Supporting source ↗

Two approaches to discuss with your treating team

Keeping the home-time equivalent during transit can make intervals easier to follow, but may leave doses due at inconvenient destination times. A gradual move towards a manageable local schedule is another option described in epilepsy travel guidance. Neither approach is automatically right for every medicine or trip.

Ask your pharmacist or prescriber to choose the approach, specify any permitted timing flexibility, and write down exactly how and when the destination routine starts. Ask for a separate plan for each medicine and for the journey home.

  • Review active ingredient, formulation, dosing frequency, unequal doses, interactions, kidney or liver problems, seizure pattern and sensitivity to late doses.
  • For a very short visit, ask whether changing the routine would create more disruption than keeping the existing time reference.
  • If a dose is tied to sleep or meals, include those requirements in the plan.
  • Do not infer that a long half-life makes a missed dose safe, or exchange immediate- and modified-release products.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

A clock-conversion example, not a dose recommendation

On 18 January 2027, Sydney uses AEDT (UTC+11) and Pune uses IST (UTC+5:30). The instant shown as 08:00 in Sydney is 02:30 in Pune on that date. The instant shown as 20:00 in Sydney is 14:30 in Pune. These are clock conversions, not instructions to take a medicine at those times.

If a clinician-approved plan specifies 12-hour intervals, those two converted instants remain 12 hours apart. Waiting instead from 08:00 Sydney time until 20:00 Pune time would make that interval 17.5 hours. This illustrates why simply copying the clock label can be misleading.

Check offsets for the actual travel date. Daylight saving, half-hour or quarter-hour zones, overnight flights and crossing the International Date Line can change the calendar date as well as the clock. Do not reuse this January example for another season or route.

  • Use named zones, such as Australia/Sydney and Asia/Kolkata, with a full date. Avoid ambiguous labels such as “local time” without naming the place.
  • For each change, ask the professional preparing the plan to verify both the clock conversion and the intended interval.
Protect sleep before departure, in flight and after arrival

General jet-lag guidance supports planned sleep, appropriately timed light and avoiding sleep debt. Small pre-trip changes towards destination sleep times may help, but should not reduce total sleep. Eastward travel commonly requires an earlier body-clock phase; westward travel commonly requires a later phase.

Light timing depends on the route and your body-clock time. “Get morning light” is not an accurate universal rule for a large shift. Ask for route-specific advice when needed. Short naps can help alertness; long late naps can disrupt the next night. Do not force yourself to stay awake through severe sleep deprivation to fit the destination clock.

  • Use an eye mask, earplugs and a realistic opportunity to sleep during travel.
  • Keep the first day manageable, with rest and help for essential tasks.
  • Avoid using alcohol to sleep, and avoid late caffeine or energy drinks that undermine the planned night.
  • For seizures linked to waking, tell your team about time-zone changes and disrupted or repeated awakenings.

Supporting source ↗ · Supporting source ↗

Melatonin and sleeping tablets: check first

Melatonin has evidence for reducing jet-lag symptoms in general travellers, but that does not establish seizure prevention or a safe regimen for every person with epilepsy. Incorrect timing can move the body clock in the wrong direction.

The Australian VOQUILY melatonin leaflet specifically tells people with epilepsy to check with their doctor and lists interactions, including carbamazepine and sedative medicines. Ask your clinician or pharmacist about the exact product, timing and suitability; this guide does not give a melatonin dose.

Do not borrow sleeping tablets, add extra benzodiazepines or alter prescribed rescue medication to manage a flight. Sedation can impair alertness and balance and complicate medicine effects. A jet-lag app’s sleep or melatonin suggestion is not an antiseizure medication plan.

  • Discuss all prescription, pharmacy, online and herbal sleep products before use.
  • If a sleep treatment is prescribed, record its instructions separately from seizure treatment.
  • Keep rescue medicine for the indication and dose in the individual prescribed action plan.

Supporting source ↗ · Supporting source ↗

Alarms, delays and missed doses

Before leaving, test what your phone does when its time zone changes. Keep a written schedule showing the named zone and date; consider a home-city world clock alongside the local clock. Use a backup reminder and mark a dose only after it is actually taken.

If a flight is delayed, the calendar changes or you are unsure whether a dose was taken, check the written plan and seek pharmacist or clinical advice. Do not reset the schedule just because landing time changed. Do not double, split, omit or add a dose unless your medicine-specific instructions direct it.

  • Carry medicines, water where permitted and the plan where you can access them during transit.
  • Obtain medicine-specific instructions for a late dose or vomiting before the trip.
  • Seek prompt advice if medicines cannot be retained, supply is lost, or seizure patterns change.
  • Use local emergency services for a seizure emergency; in Australia call 000.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Your outward, destination and return checklist

For each medicine, take a verified list and an itinerary to the pharmacist or prescriber. Ask for a plan that covers the final home dose, transit doses, first destination dose, first few local days and the return journey. Recheck the plan if flights or medicines change.

Write down who prepared the plan, when it was checked and whom you can contact while away. Keep a private copy offline and share relevant instructions with a willing travel companion. The downloadable worksheets provide space for this conversation; they do not calculate or authorise dosing.

  • Include full dates, city/time-zone names and UTC offsets for the actual itinerary.
  • Keep separate entries for different formulations or different morning/evening doses.
  • Include sleep protection, missed-dose instructions, backup supply and local help.
  • After returning, document any seizures, adverse effects or medical care and arrange review when needed.
Plan help at the destination

Carry a concise seizure-response plan and emergency contact details. Ask a travel companion whether they are willing and able to help. If a rescue medicine is prescribed, the person assisting needs the individual instructions and appropriate training.

  • Identify nearby medical care and a pharmacy before arrival. Save the address and local emergency number offline.
  • Translate a short explanation of epilepsy and the emergency plan if language may be a barrier.
  • Know how to contact your insurer’s assistance service and how claims or payments are handled.
  • Choose activities and accommodation after discussing relevant risks with your clinician; do not infer safety from a tour operator accepting a booking.
Returning home

Retain records of any seizures, medical care or medicine changes during the trip. Arrange follow-up if your seizure pattern changed or a clinician advised it. A new event can affect driving eligibility; use your treating team and licensing authority rather than assuming an old clearance still applies.

  • Review supply before the next dose is due, especially after a long journey.
  • Give your regular clinician relevant discharge records and the exact names of any medicines supplied overseas.
  • Use the written return time-zone plan and clarify any uncertainty with your pharmacist.
Sources and further reading
CareCircle: supporting someone without taking overAgree practical roles, teach the person’s seizure plan and protect independence. A good support network makes help predictable while respecting the wishes and privacy of the person with epilepsy.

Read the guide in depth

Start with the person’s preferences

Ask what help is wanted and what feels intrusive. Discuss who can know about epilepsy, who may receive medical information and who should be contacted after an event. Preferences may change after a new diagnosis, a change in seizures or a move away from home.

Separate three tasks: helping with an immediate seizure, providing practical support afterwards and making ongoing decisions. Being an emergency contact does not automatically authorise someone to make every health or financial decision. Ask the relevant professional about formal authority when it is needed.

  • Use a small trusted contact list with a first contact and backup. Confirm the contacts agree to their roles.
  • Write the person’s preferred words for explaining a seizure to others.
  • Share only the information each person needs. Keep a complete plan securely and a concise response sheet where agreed.

Supporting source ↗

Train the people who may be present

Arrange a clinician-approved seizure action plan, and make sure carers can recognise the person’s usual event and the escalation instructions. Reading a sheet once is not the same as practising what to do. If rescue medication is prescribed, training must cover the specific medicine, route, prescribed dose, timing, safety and emergency escalation.

  • Ask each supporter to explain the plan back in their own words. Clarify uncertainty with the treating team.
  • Rehearse a calm scenario: who times the seizure, who protects the person, who retrieves the plan and who calls for help.
  • Check the plan is available at home, school, work or respite where needed and with consent.
  • Check storage, expiry dates and access to any prescribed rescue medication. Do not share or improvise medicines.
Create a useful handover

A handover is a short factual update for the next person helping. Include what happened, how long it lasted, what was done and what still needs follow-up. Avoid assumptions about causes or criticism of the person.

After recovery, ask what the person needs: privacy, a familiar contact, practical help or clinician advice. Use the agreed plan for supervision and escalation rather than inventing a universal recovery rule.

  • Document event time, observed features, injury, recovery and medication given under the authorised plan.
  • Record who was notified, who has taken over support and any medical advice received.
  • If an episode differs from the usual pattern, flag the difference clearly to the treating team.
  • Update the plan after clinician review; remove old copies so carers do not follow conflicting instructions.
Support the supporter

Carer Gateway offers free support services for eligible unpaid carers, including access to counselling, coaching, peer support and respite arrangements. Call 1800 422 737 to discuss available support. General contact hours are Monday to Friday 8 am–5 pm; the service states emergency respite can be requested at any time. If someone is in immediate danger, call 000.

  • Plan breaks before exhaustion becomes a crisis. Identify who could provide a safe handover if the main supporter becomes ill.
  • Keep the supporter’s own appointments, sleep, work and social connection in the plan.
  • Discuss financial pressures separately from care tasks. Carer Payment and Carer Allowance have their own assessments; a medical report alone does not make a claim.
  • Ask for help with the specific problem: overnight disruption, no backup, difficulty understanding a plan or balancing employment and care.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Check support-worker suitability

Ask providers how they train workers for an individual’s epilepsy plan and how they record events and contact the treating team. NDIS registration can be checked on the Commission’s register, but specific skills and availability still require discussion.

  • Who provides seizure first-aid training and checks competency?
  • Who is authorised and trained to give prescribed rescue medication, where relevant?
  • How are absences, worker changes and overnight support handled?
  • What are the privacy, incident-reporting and complaints processes?
  • Who can you contact if a support is unsafe or does not arrive? The NDIS Commission accepts complaints about provider or worker concerns.

Supporting source ↗ · Supporting source ↗

Sources and further reading
Prepare for care — patient and professional consultation toolsA useful consultation connects diagnosis, treatment and the person’s life. These structured prompts help patients prepare and help clinicians make important decisions explicit. They are conversation tools, not prescribing protocols or an automated decision system.

Clinical and practical questions

What does drug-resistant epilepsy actually require?

The ILAE definition concerns failure of two tolerated, appropriately chosen and used schedules to achieve sustained seizure freedom. Reassess diagnosis, classification and adequacy of treatment rather than simply counting prescriptions.

ILAE · drug-resistant epilepsy definition ↗

Does surgical evaluation commit someone to surgery?

No. Specialist assessment clarifies the diagnosis and options. It may include event recording, imaging review and other assessments, and can identify surgical or non-surgical approaches suited to the individual.

ILAE · specialist and surgical evaluation ↗

Read the guide in depth

Agree the purpose before the appointment

Start with the person’s main question: confirming the diagnosis, controlling events, reducing adverse effects, pregnancy planning or participation in daily life. Record what would count as a useful outcome. A first visit and a stable follow-up need different agendas.

  • Patient prompt: what is the one issue I most want addressed?
  • Clinician prompt: what must be clarified or excluded today?
  • Confirm preferred language, communication aids and consent for supporters.
Reconstruct the events before escalating treatment

Review the sequence, witness evidence and recovery rather than relying only on the word “seizure”. Distinguish new event types from established seizures. Ask about syncope, sleep-related events and functional seizures when relevant, recognising that more than one condition can coexist.

  • Patient: bring the original witness account and safe recordings.
  • Clinician: document evidence supporting the diagnosis and remaining uncertainty.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Check what the tests actually establish

An EEG should answer a clinical question and be interpreted alongside the history. A normal EEG does not exclude epilepsy, and an abnormal report should not replace clinical assessment. Review whether imaging, ECG or another investigation is relevant and whether previous results can be obtained before repeating tests.

  • Patient: ask for the result and its plain-language meaning.
  • Clinician: record how the finding changes the working diagnosis or plan.

Supporting source ↗ · Supporting source ↗

Review treatment as an individual trial

Document what each medicine was intended to treat, how benefit was assessed, adverse effects and why it was changed. Confirm the actual regimen and barriers to taking it. A medicine is not a treatment failure merely because its name appears in an old letter; adequacy and tolerability matter.

  • Patient: bring packaging or the verified pharmacy list.
  • Clinician: separate inefficacy, intolerance and incomplete trials.
  • Agree the next outcome measure and follow-up point.

Supporting source ↗ · Supporting source ↗

Recognise when specialist reassessment can help

Diagnostic uncertainty, continuing seizures, intolerable adverse effects or a need for specialised testing or treatment justify considering an epilepsy service. Referral is an opportunity to review the entire picture, not a commitment to surgery. The patient should understand the referral question and what happens while waiting.

  • Patient: ask what the specialist assessment might change.
  • Clinician: include event descriptions, treatment trials, test reports and the current safety plan.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Include life stage and wider health

A review can be incomplete if it only counts seizures. Consider mood, cognition, sleep, reproductive plans, other conditions and day-to-day function. Invite the person to prioritise the matters that affect quality of life, and ask which other professionals should contribute.

  • Patient: note effects on work, study, relationships and independence.
  • Clinician: state who will follow up each non-seizure concern.

NICE NG217 · information and support ↗ · Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Leave with an emergency and safety plan

Check that the person knows the usual first aid response, when to seek urgent help, and any specific rescue medicine instructions. Driving and high-risk activity advice should be individual and documented. Explain how to report a breakthrough event or side effect without waiting until the next routine appointment.

  • Patient: repeat the key instructions back in your own words.
  • Clinician: confirm written advice and who receives it with consent.

Epilepsy Action Australia · seizure first aid ↗ · Supporting source ↗ · Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Close the loop on decisions

Write down the agreed diagnosis or uncertainty, current medicines, requested tests, who reviews results and the next appointment. A good plan also states what should trigger an earlier review. Give the person a chance to identify an instruction that is unclear or impractical before the consultation ends.

  • Patient: ask for an accessible copy of the final plan.
  • Clinician: name the owner and deadline for outstanding actions.
  • Do not treat a pending test as reviewed until someone has communicated the result.
Use the trial population, not a universal medicine ranking

Separate focal, generalised and absence-epilepsy evidence. SANAD II was an open-label pragmatic comparison, and the childhood absence trial addressed a different syndrome and outcome. Efficacy is one part of selection alongside tolerability, interactions, comorbidity, reproductive safety and availability. Wise Choice highlights selected issues and does not replace current product information.

SANAD II · focal epilepsy trial ↗ · SANAD II · generalised / unclassified epilepsy trial ↗ · Supporting source ↗ · Supporting source ↗

Document adequacy before labelling drug resistance

Record indication, dose exposure, tolerability, duration and response for each schedule, as well as event classification and barriers to taking treatment. Consider comprehensive epilepsy-centre evaluation promptly when two appropriate schedules have failed. Explain that referral can improve diagnosis and identify several treatment options.

Supporting source ↗ · Supporting source ↗

Extend assessment across the lifespan

Consider genetic testing where it can clarify diagnosis or management, with informed consent and counselling. Recognise that older adults require individual assessment of diagnostic alternatives, comorbidity, interactions, cognition and practical support. Suspected infantile spasms need an urgent paediatric pathway.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Use a specific pathway for functional seizures

Seek positive diagnostic assessment, including typical-event video-EEG where feasible, and assess co-occurring epilepsy and psychiatric conditions. Communicate respectfully and discuss indicated psychological therapies. Antiseizure medicines are not a direct treatment for functional seizures without another indication; any withdrawal belongs in the responsible clinician’s plan.

Supporting source ↗

Sources and further reading

Tools, learning & support

Explore the Wise collection

Resources for today. Possibilities for tomorrow.

In developmentEpiRideTransport advice and the vision for supported peer travel.In developmentEpiConnectThe vision for private, opt-in friendship and social connection.In developmentEpiCommunityCommunity preview. New contributions are paused while contact and moderation arrangements are verified.In developmentEpiSOSDiscover the planned Big Red Button and trusted-contact alerts.In developmentMyWise previewRead-only layout preview. No health entries, photos, saved profiles or reminders.EpiGameExplore symptom-related learning paths and epilepsy education.PregnancyWISEPlan conversations, monitoring and care before and during pregnancy.Wise ChoiceCompare up to four antiseizure medicines with your care team.Know about epilepsyUnderstand seizures, epilepsy types, diagnosis and investigations.Know about medicinesSearch ingredients and brands, with product-specific PI and CMI links.Downloads & resourcesPrintable guides, seizure diaries, care plans and worksheets.Seizure first aidRead practical first aid and emergency-planning information.Service FinderNSW starter directory, with official national lookups for wider or missing coverage.Driving guidanceUnderstand epilepsy driving guidance and assessment resources.Appointment ToolkitOrganise questions and prepare for your next consultation.CareCircleResources for family, caregivers, schools and shared care planning.EpiLifeEveryday information about work, study, wellbeing and relationships.NDIS & CentrelinkExplore support information, official forms and service directories.In developmentShare my storyStory preview. Submissions are paused pending verified privacy and safety reporting.In developmentEpiResearchLearn about research and the vision for optional future participation.In developmentEpiWatchExplore wearable information and the vision for future integrations.EEG learningProfessional explanations, interpretation principles and teaching examples.Reflex prescribingExplore LevWise’s purpose: every prescription deserves a reason and review.Iatrogenic refractory epilepsyWhy apparent treatment resistance can call for careful reassessment.Frequently asked questionsSearch clear answers about epilepsy, medicines, tests and daily life.Evidence & referencesRead the research behind the educational resources and its limitations.Travel & jet lagPrepare for travel, medicine discussions and changes in routine.Clinical resourcesExplore professional epilepsy learning, evidence and practical tools.

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