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Tools for everyday care

Resources & downloads

Read a guide, print a care plan or take a seizure diary to your next appointment.

PDF · 3 pages

Epilepsy management plan

A structured plan to complete and review with the treating clinician.

Open or download PDF →
PDF · 1 pages

Seizure action plan

A concise first-response plan for review with the treating team.

Open or download PDF →
PDF · 2 pages

Emergency medication management plan

A template for clinician-prescribed rescue treatment and trained carers.

Open or download PDF →
PDF · 2 pages

Seizure diary

Record dates, observations and recovery for discussion at a consultation.

Open or download PDF →
PDF · 2 pages

Questions for your epilepsy doctor

Organise questions before a specialist appointment.

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PDF · 3 pages

Anti-seizure medication ready reckoner

A medicine reference and discussion worksheet to use with the treating team.

Open or download PDF →
PDF · 3 pages

Epilepsy and driving in Australasia

A discussion guide to read alongside current licensing requirements.

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PDF · 2 pages

Medication reminder schedule

A printable schedule to complete from the prescribed treatment plan; it does not send reminders.

Open or download PDF →
PDF · 2 pages

Seizure first aid — what to do, step by step - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 2 pages

Learn about epilepsy — understand the diagnosis - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 3 pages

PregnancyWise — planning, pregnancy and parenthood - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 1 pages

Driving guidance: epilepsy and seizures - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 2 pages

Service Finder: build the right care team - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 2 pages

NDIS & Centrelink: a practical application guide - preparation worksheets

Printable worksheets

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PDF · 2 pages

MedicineWise — use treatment confidently - preparation worksheets

Printable worksheets

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PDF · 2 pages

Seizure safety and SUDEP — practical risk reduction - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 2 pages

Children, school and growing independence - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 2 pages

Mental wellbeing — care for more than seizures - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 1 pages

Work & study: plan participation around your needs - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 5 pages

Travel with epilepsy: jet lag, medicine timing and trip planning - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 2 pages

CareCircle: supporting someone without taking over - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 1 pages

MyWise: organising your care information - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 1 pages

EpiSOS: prepare a real emergency plan - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 1 pages

EpiWatch: choosing seizure-alert technology - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 1 pages

EpiConnect: relationships and peer support - preparation worksheets

Printable worksheets

Open or download PDF →
PDF · 1 pages

EpiResearch: understand research before joining - preparation worksheets

Printable worksheets

Open or download PDF →
Read here

Seizure first aid — what to do, step by step

Stay 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.

Open resource →
Read here

Learn about epilepsy — understand the diagnosis

Epilepsy 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.

Open resource →
Read here

PregnancyWise — planning, pregnancy and parenthood

Most people with epilepsy can have a healthy pregnancy. A written plan before conception, shared by your epilepsy and maternity teams, helps balance seizure control, medicine effects and your own priorities. If you are already pregnant, keep taking your prescribed medicine and arrange a prompt review.

Open resource →
Read here

Driving guidance: epilepsy and seizures

A practical guide to stopping, reporting, preparing for assessment and returning to driving. A date on a calendar alone does not authorise driving.

Open resource →
Read here

Service Finder: build the right care team

Know which service to ask for, what to prepare and how to compare options. This guide helps you make a practical care plan before opening an official directory or contacting a clinic.

Open resource →
Read here

NDIS & Centrelink: a practical application guide

Separate disability support from income support, organise useful evidence and choose the correct application or review pathway. Having epilepsy does not automatically qualify someone for a payment or an NDIS plan.

Open resource →
Read here

MedicineWise — use treatment confidently

The best antiseizure medicine is the one that suits the person’s epilepsy and circumstances, controls seizures and has acceptable adverse effects. Levetiracetam is a useful option for many people; the important question is whether any medicine is appropriate for the individual rather than routinely favoured or routinely avoided.

Open resource →
Read here

Seizure safety and SUDEP — practical risk reduction

A 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.

Open resource →
Read here

Children, school and growing independence

Children 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.

Open resource →
Read here

Mental wellbeing — care for more than seizures

Emotional 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.

Open resource →
Read here

Work & study: plan participation around your needs

Turn the effect of epilepsy into clear requests for practical support. The aim is to protect participation, learning and employment while addressing individual safety concerns.

Open resource →
Read here

Travel with epilepsy: jet lag, medicine timing and trip planning

Plan 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.

Open resource →
Read here

Transport when you cannot drive

Protect access to work, study, appointments and community life with a realistic weekly travel plan and an emergency backup.

Open resource →
Read here

CareCircle: supporting someone without taking over

Agree 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.

Open resource →
Read here

Appointment Toolkit

Prepare a concise, useful account of what is happening and leave with a plan you understand.

Open resource →
Read here

MyWise: organising your care information

Use a consistent record to improve handover between you, your family and your treating team. The current dashboard is a demonstration.

Open resource →
Read here

EpiSOS: prepare a real emergency plan

A useful alert plan starts with people who know what to do. The Big Red Button on this website currently demonstrates the idea only.

Open resource →
Read here

EpiWatch: choosing seizure-alert technology

Compare a device against the seizures you actually have, the help you need and the evidence behind its claims.

Open resource →
Read here

EpiConnect: relationships and peer support

Epilepsy can be part of a relationship without defining your identity or worth. Use this guide to plan safe, respectful conversations.

Open resource →
Read here

EpiResearch: understand research before joining

Learn how to judge a study invitation and prepare questions for your treating clinician.

Open resource →
Read here

EpiGame: learn from observations

Use the existing interactive activity to build language for describing seizures, then bring observations to a clinician.

Open resource →

Blank medical plans need to be completed and reviewed with the treating team. Keep any completed copies secure on your own device.

Understand more, at your own paceRead 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.

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.

Questions you may have

What should a bystander do first?

Stay nearby, time the event and protect the person from injury. Do not restrain them or put anything in their mouth. After shaking stops, help them onto their side when safe and watch their breathing.

Epilepsy Action Australia · seizure first aid ↗

When should someone call 000?

Seek emergency help for a convulsive seizure reaching five minutes, repeated seizures without recovery, breathing difficulties, serious injury or a seizure in water. A personal plan may call for help earlier. If uncertain, seek help.

Epilepsy Action Australia · seizure first aid ↗

What should we record afterwards?

Write down the start and finish time, what the person did, whether they could respond, any injury and how recovery unfolded. Record what you actually saw rather than guessing a seizure name.

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
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.

Questions you may have

Does one event always mean epilepsy?

No. Different conditions can cause blackouts or unusual movements. Your clinician combines the story, examination and relevant tests; sometimes more observation or specialist testing is needed.

NICE NG217 · diagnosis and assessment ↗

Can symptoms that resemble seizures have another cause?

Yes. Fainting, some sleep events and functional seizures can look similar. These symptoms are real and deserve assessment. Their treatment may differ from epilepsy treatment.

ILAE EpilepsyDiagnosis · epilepsy imitators ↗

Why does a witness description matter?

A witness may notice a sequence you cannot remember. Bring their account or a safely recorded video if available. No one should delay first aid or place themselves at risk to record an event.

NICE NG217 · diagnosis and assessment ↗

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
MedicineWise — use treatment confidentlyThe best antiseizure medicine is the one that suits the person’s epilepsy and circumstances, controls seizures and has acceptable adverse effects. Levetiracetam is a useful option for many people; the important question is whether any medicine is appropriate for the individual rather than routinely favoured or routinely avoided.

Questions you may have

Are Keppra and levetiracetam the same medicine name?

Levetiracetam is the ingredient; Keppra is a brand example. Match the brand, formulation and strength on the pack to its official Australian PI or CMI. Do not change or stop treatment independently.

What should I do about a missed dose?

Ask your pharmacist or prescriber for instructions for your exact medicine, formulation and schedule. Keep that advice with your medicine list. Avoid improvising a catch-up dose or changing subsequent doses yourself.

Epilepsy Action Australia · medication management (2026) ↗

What if vomiting or illness disrupts my medicine?

Ask for advice if you cannot take or keep down your usual treatment. The response depends on the medicine and circumstances. A written illness plan is useful when this has happened before.

Epilepsy Action Australia · medication management (2026) ↗

What should I include in my medicine list?

Include the ingredient, brand, strength, prescribed schedule and reason for each medicine. Add non-prescription products, supplements, allergies and previous reactions. Take the list to medical and pharmacy appointments.

Epilepsy Action Australia · medication management (2026) ↗

Where can I read the full official leaflet?

The CMI is written for consumers; the PI contains prescribing information. Use the exact product name on your box in the official lookup. These website summaries do not reproduce every warning or interaction.

TGA · official PI and CMI lookup ↗

What should I ask if a brand or tablet appearance changes?

Check the ingredient, strength, formulation and directions with your pharmacist. Ask whether any change matters for your treatment plan before assuming two differently labelled products are interchangeable.

TGA · official PI and CMI lookup ↗

Is levetiracetam a bad medicine?

No. It is a useful treatment for appropriate seizure types. Ask why it was chosen for you and report troublesome effects. Thoughtful prescribing means an individual reason and review plan, not avoiding one medicine for everyone.

Australian Government Medicine Finder · levetiracetam ↗

Read the guide in depth

Know why this medicine was selected

Ask which seizure type or epilepsy syndrome the medicine is intended to treat. Other considerations include age, reproductive plans, other conditions, interactions and previous response. A medicine comparison helps structure the conversation, but a list of advantages cannot predict how you personally will respond.

  • Write the reason for choosing it and the agreed treatment goal.
  • Ask when benefits and tolerability will be reviewed.

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

Build a reliable medicine record

Record the active ingredient, brand if relevant, strength, formulation, prescribed times and prescriber. Include non-epilepsy medicines, supplements and allergies. A photograph can help identify packaging, but a photograph alone is not a verified current prescription. Check changes with the pharmacist before updating your list.

  • Use the pharmacy label and your current prescription as the starting point.
  • Bring one up-to-date list to every clinician and pharmacy.
  • Record who confirmed a change and the date.

Supporting source ↗ · Supporting source ↗

Missed doses, vomiting and supply gaps

Ask in advance for instructions specific to each medicine. What to do depends on the formulation, timing and clinical situation; do not use one generic rule for all drugs. Do not double a dose unless your clinician’s medicine-specific plan expressly directs that action. If you cannot retain medicines or are running out, contact your pharmacist or treating team promptly.

  • Agree a refill reminder before the supply becomes urgent.
  • Use a checked organiser or routine if helpful.
  • Ask whether storage, crushing or swallowing changes are safe for that formulation.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Track benefit and side effects together

A useful review looks at both seizures and everyday function. Keep a short record of sleepiness, balance, concentration, mood or other problems and when they started. Do not assume that every new symptom is caused by medicine, or dismiss a symptom simply because it is not common.

  • Record start dates and prescribed changes beside symptoms.
  • Describe the effect on work, study, relationships or sleep.
  • Contact the prescriber for persistent or troublesome adverse effects.

Supporting source ↗ · Supporting source ↗

Know the urgent warning instructions

Read the serious adverse-effect section of your exact medicine leaflet and ask the pharmacist to explain it. Severe allergy symptoms, collapse, major breathing difficulty or rapidly worsening illness need emergency assessment. A new rash, particularly with fever, blisters or mouth/eye involvement, needs urgent medical advice.

  • For a medical emergency in Australia call 000.
  • Take the medicine list or packaging with you.
  • Obtain urgent clinician instructions about further doses when a serious reaction is suspected.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Interactions, contraception and pregnancy

Check with a pharmacist before adding or stopping any prescription, over-the-counter or complementary product. Some antiseizure medicines affect contraception, and hormonal treatment can affect some antiseizure medicine levels. Pregnancy planning needs a specific medicine review; stopping treatment abruptly after a positive pregnancy test can create serious risk.

  • Tell every prescriber you take antiseizure medicine.
  • Ask about reproductive plans even if pregnancy is not imminent.
  • Keep pregnancy advice medicine-specific rather than relying on a category letter alone.

TGA · pregnancy precautions ↗ · Supporting source ↗ · Supporting source ↗ · Supporting source ↗

When control is incomplete

A breakthrough event should prompt review of what happened, whether it was epileptic, the medicine taken, interactions, adherence barriers and the treatment plan. Persisting seizures are not a personal failure. Ask whether an epilepsy specialist review or additional assessment could clarify the next options.

  • Report new seizure types and injuries.
  • Discuss affordability, supply or side-effect barriers openly.
  • Do not add leftover medicines or borrow another person’s treatment.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Changing or stopping treatment needs a plan

Being seizure-free does not mean medicine can automatically stop. Discuss recurrence risk, the epilepsy syndrome, driving implications and personal priorities with the prescriber. If a change is agreed, obtain a written schedule, instructions for recurrence, and a follow-up date. Do not improvise a taper or restart an old schedule.

  • Ask what should happen if symptoms recur.
  • Check whether work, travel or conception plans affect timing.
  • Make sure all clinicians and the pharmacist have the final regimen.

Supporting source ↗ · Supporting source ↗

What comparative medicine trials actually tell us

SANAD II supports lamotrigine as an important first-line option for newly diagnosed focal epilepsy, but it does not show that another drug cannot be the right choice for an individual. In generalised and unclassifiable epilepsy, valproate performed better than levetiracetam on important trial outcomes; its reproductive risks can change the choice substantially. Childhood absence epilepsy has a different evidence base. There is no single best medicine for everyone.

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

After two unsuccessful appropriate medicine schedules

Ask whether the working definition of drug-resistant epilepsy applies and whether a specialist centre should reassess your options. Check whether previous medicines were appropriate, tolerated and adequately tried, and whether all current events are epileptic. Access barriers and difficulty taking treatment deserve help rather than blame.

Supporting source ↗ · Supporting source ↗

Diet and prescription cannabidiol are specialist treatments

A ketogenic dietary therapy may help selected people, with stronger trial evidence in children than adults. It requires nutritional supervision and monitoring. Purified prescription cannabidiol has trial evidence in particular severe syndromes; that evidence does not establish benefit from every cannabis product or for every epilepsy. Ask about interactions, adverse effects and local approval.

Supporting source ↗ · Supporting source ↗

Reproductive planning includes all relevant partners

Check contraception interactions and discuss pregnancy plans before making treatment changes. Australian valproate advice includes established risks from exposure during pregnancy and a less certain possible paternal-exposure signal. Ask the prescriber what the current advice means for your situation. Do not stop treatment to manage these risks without an agreed alternative plan.

Supporting source ↗ · Supporting source ↗

Use the exact product information

The active ingredient, formulation, strength and other medicines all affect safe use. Use the current Australian CMI for patient instructions and PI for professional detail, checked with your pharmacist. The short Wise Choice summaries highlight selected issues and are not complete interaction, contraindication or dosing references.

Supporting source ↗

Sources and further reading
PregnancyWise — planning, pregnancy and parenthoodMost people with epilepsy can have a healthy pregnancy. A written plan before conception, shared by your epilepsy and maternity teams, helps balance seizure control, medicine effects and your own priorities. If you are already pregnant, keep taking your prescribed medicine and arrange a prompt review.

Questions you may have

When should pregnancy planning begin?

Arrange specialist review before pregnancy when possible. Discuss seizure control, medicine choices, contraception, folic acid and monitoring. If already pregnant, contact your care team promptly and do not stop treatment on your own.

TGA · pregnancy precautions ↗

What should my plan cover after birth?

Ask for written instructions about medicine monitoring, any planned dose changes, feeding, sleep and practical support. A pregnancy-related dose change needs a postnatal review plan too.

AAN / AES / SMFM · reproductive guideline (2024) ↗

Do men taking valproate need family-planning advice?

Yes. Discuss plans for a family with the prescribing specialist. Australian advice includes precautionary counselling about a possible paternal-exposure risk; uncertainty remains. Do not stop or switch treatment without an individual plan.

TGA · paternal valproate precautions (2025) ↗

Read the guide in depth

Start before trying for a baby

Book a planning appointment rather than waiting for the first positive pregnancy test. Bring your seizure history, previous medicine trials, a complete medicine list and any questions about inherited conditions. A review can confirm the epilepsy diagnosis and discuss whether a treatment adjustment is worthwhile before conception.

  • Ask who will coordinate your neurologist, GP and maternity care.
  • Write down your conception plans and the next review date.
  • If treatment changes, ask when it is appropriate to start trying.

Supporting source ↗ · Supporting source ↗

Understand medicine choices without stopping treatment

The aim is effective seizure protection with the most suitable reproductive safety profile for your epilepsy. Lamotrigine, levetiracetam or oxcarbazepine may be appropriate options for some people. Valproate carries important pregnancy and developmental risks; alternatives should be considered when clinically feasible. A medicine that works well for one epilepsy type may be unsuitable for another.

  • Never stop, reduce or swap an antiseizure medicine yourself when pregnancy is suspected.
  • Ask for a comparison using your seizure type, previous response and reproductive goals.
  • A lower published risk does not mean that a medicine has no risk.

Supporting source ↗ · Supporting source ↗

Folate and contraception deserve a specific plan

Discuss a folic acid prescription before conception. Guidance differs on the best dose, so ask which dose and duration suit your medicines and local care pathway. The AAN guideline advises at least 0.4 mg daily before and during pregnancy, while recognising uncertainty about the optimal dose. Do not combine supplements without checking the total.

  • Ask your pharmacist to check contraception interactions with every medicine.
  • Use your agreed contraception until any treatment review is complete.
  • Include vitamins, herbal products and non-prescription medicines in the review.

Supporting source ↗ · TGA · pregnancy precautions ↗ · Supporting source ↗ · Supporting source ↗

A positive test or an unexpected pregnancy

Contact your epilepsy team and maternity provider promptly and tell them the medicine names, doses and date of your last period. Continue the prescribed regimen while they arrange advice. If you cannot keep medicines down because of vomiting, seek same-day clinical advice rather than guessing whether to repeat a dose.

  • Keep a dated list of medicines and seizures for the appointment.
  • Ask whom to call out of hours and where to attend if seizures recur.
  • Do not assume that an unexpected pregnancy means the baby will be harmed.

Supporting source ↗ · Supporting source ↗

Monitoring during pregnancy

Pregnancy can change how quickly the body clears some antiseizure medicines. Your team may compare blood levels with a pre-pregnancy baseline and review seizures and adverse effects. A dose increase can sometimes be needed even when you have not had a seizure; that decision belongs to the prescriber.

  • Record blood-test dates, whether the dose was taken before the sample, and any agreed changes.
  • Report changes in seizure pattern, falls or prolonged vomiting promptly.
  • Keep routine maternity screening and epilepsy follow-up appointments.

Supporting source ↗ · Supporting source ↗

Lamotrigine: monitoring during pregnancy and after birth

Lamotrigine is among the better-studied, lower-risk antiseizure medicines for pregnancy when it is appropriate for your epilepsy. It can usually be continued throughout pregnancy under specialist care. No medicine is entirely risk-free, and maintaining seizure control is important for both you and your baby.

Pregnancy often makes the body clear lamotrigine faster, so the blood level can fall even when the dose is unchanged. Ideally, have a baseline blood level before conception while seizures are well controlled, and record the dose and sampling time. If already pregnant without a baseline, contact your neurologist early to agree an individual reference level and monitoring plan.

Blood levels are commonly checked about every four weeks. Your neurologist may agree a four-to-six-week interval according to your results and how pregnancy is affecting you, with earlier checks when needed. Compare with your own effective baseline, alongside seizure control, side effects and missed doses; a laboratory reference range alone is not your personal target.

The dose may need to increase during pregnancy to maintain your usual effective level, even if you have had no seizures. Make every change in consultation with your neurologist, based on blood results and clinical response. Do not increase, reduce or stop lamotrigine yourself.

After delivery, lamotrigine levels can rise rapidly as clearance returns towards normal. If the dose was increased, agree a written reduction plan before birth: reductions usually begin in the first few days after delivery, aiming to return towards the pre-pregnancy dose over the following weeks as your neurologist advises. Arrange an early postnatal blood level, commonly within one to two weeks, and further checks as needed. Do not abruptly return to the old dose without the agreed plan.

  • Use the downloadable Lamotrigine Monitoring During Pregnancy sheet to record the date, pregnancy week or days after birth, blood level with units, dose, and your clinician's instructions.
  • For comparable results, follow your team's sampling instructions, usually before a dose; record when the last dose and blood sample were taken. Do not skip or delay medicine without instructions.
  • Contact your treating team promptly for new marked dizziness, double vision, imbalance or vomiting after birth, or for worsening seizures at any stage. Do not wait for the next scheduled blood test.

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

Seizures, emergencies and delivery

A convulsive seizure can endanger both the pregnant person and the pregnancy. Call 000 in Australia for a seizure during pregnancy; elsewhere use the local emergency number. A first seizure during pregnancy must not automatically be attributed to epilepsy because pregnancy-related causes need urgent assessment.

  • Tell ambulance staff the gestation, seizure duration and any rescue medicine already given.
  • Prepare a birth plan covering regular medicine, vomiting, sleep and seizure response.
  • Discuss the delivery setting and pain relief with your maternity team; epilepsy alone does not determine the delivery method.

Supporting source ↗ · Supporting source ↗

The first weeks after birth

Arrange help with night feeds and practical tasks before the baby arrives. If doses were raised during pregnancy, obtain a written postnatal adjustment and blood-test plan; levels may rise after delivery. New marked dizziness, double vision or imbalance needs prompt clinical review. Breastfeeding is often possible, with medicine-specific advice.

  • Ask the baby’s clinician what feeding, alertness or weight concerns to watch for.
  • Discuss contraception again; breastfeeding is not reliable contraception.
  • Book the early postnatal epilepsy review before discharge.

Supporting source ↗ · Supporting source ↗

A safer baby-care routine

Make a practical plan that reflects your seizure pattern without assuming you cannot care for your baby. Feeding or changing at floor level can reduce the consequences of a fall. Arrange another adult for bathing and higher-risk tasks when awareness may be affected. Keep the baby’s own safe sleep space separate.

  • Place the baby somewhere safe if a familiar warning occurs and call your helper.
  • Keep essentials together so you do not need to carry the baby repeatedly on stairs.
  • Write down who covers sleep, medicine collection and urgent transport.

Supporting source ↗

What pregnancy registries can and cannot predict

EURAP prospectively followed pregnancies exposed to antiseizure medicines. Its 2024 analysis of 9,840 pregnancies involving eight common monotherapies found different observed malformation rates, with levetiracetam, oxcarbazepine and lamotrigine lowest among the medicines compared. These were not randomised comparisons and do not capture every developmental outcome. Use the findings to discuss a suitable regimen before conception, not to change treatment yourself.

Supporting source ↗ · Supporting source ↗

Questions for partners taking valproate

If a partner takes valproate and you are planning conception, arrange a prescriber discussion. Australian advice identifies a possible paternal-exposure risk signal from observational data. Its uncertainty differs from the well-established risks of exposure during pregnancy. Ask about the current product advice and any recommended precautions.

Supporting source ↗

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.

Questions you may have

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
Service Finder: build the right care teamKnow which service to ask for, what to prepare and how to compare options. This guide helps you make a practical care plan before opening an official directory or contacting a clinic.

Questions you may have

How should I choose which service to contact?

Check what the referral is for, whether the service performs the required test, referral requirements, fees, waiting time and accessibility. Confirm details directly before travelling.

What should I ask an EEG provider?

Ask about preparation, whether sleep is planned, medicines, appointment duration, fees and how the report reaches your referring doctor. Follow that provider’s instructions.

Read the guide in depth

Choose a service for the problem you need solved

Start with the task rather than a clinic name. A new diagnosis, repeated seizures despite treatment, a medicine supply problem and help with daily living usually require different people. Your GP can help coordinate referrals and bring information from several services together. A referral is commonly needed for specialist care.

  • Neurologist or epileptologist: diagnosis, seizure classification, medicine review and a plan when seizures persist. Ask whether the clinic sees your age group and your type of epilepsy.
  • Epilepsy nurse: education, seizure-plan implementation and practical support, where the service provides these. Ask which problems the nurse can manage and when a doctor must review you.
  • EEG service: clarify which test was requested, how long it takes and how to prepare. Do not deliberately miss medicines or deprive yourself of sleep unless the testing service gives specific instructions.
  • Pharmacist: reconcile medicine names and strengths, check interactions, discuss missed-dose instructions supplied by your prescriber and organise repeat prescriptions or dose packing.
  • Occupational therapist, psychologist, social worker or disability support service: ask about the particular daily-life, emotional, accommodation or application problem you want help with.

Supporting source ↗

Make the first call count

Use a short opening: “I am seeking [type of appointment] for [adult/child], referred by [clinician]. My main concern is [problem]. Can your service help, and what do you need before booking?” Do not send an entire medical file to a general enquiry address. Ask how the service accepts sensitive documents securely.

  • Confirm new-patient acceptance, waiting time and whether urgent referrals are triaged by a clinician. Ask your referring doctor to communicate urgency rather than relying on an online booking label.
  • Ask for the total estimated fee, likely out-of-pocket cost, cancellation terms and whether there are public-clinic options. A directory listing does not establish Medicare eligibility.
  • Check interpreter arrangements, wheelchair access, sensory needs, support-person attendance and telehealth suitability.
  • Ask who sends results to whom, whether a follow-up must be booked separately, and who to contact if the referral or result has not arrived.
Prepare a compact referral pack

Create a one-page cover sheet with your main question and a small number of supporting documents. A clear summary can be easier to use than a long unsorted attachment. Bring original packaging or an accurate medicine list if brand names and generic names are confusing.

  • Include event descriptions and dates, witness accounts where available, recovery time and any injuries.
  • List every prescribed and non-prescribed medicine, doses, allergies, major adverse effects and past epilepsy treatments.
  • Include relevant previous EEG and imaging reports, discharge summaries and the clinician contact details. Ask whether actual imaging is needed.
  • Record the effect on work, study, sleep, pregnancy planning, caring duties and transport. State what you most need help to change.
Find services, then verify the fit

The on-site directory can help identify candidate services. Official directories remain useful for current contact details and broader geographical coverage. A listing is not a recommendation, a guarantee of epilepsy expertise or confirmation that the provider has space.

  • Use healthdirect Service Finder for Australian health-service searches. Choose the service type and suburb or postcode, then confirm the listing by phone.
  • For disability services, check the NDIS Commission provider register when registered services are required. Registration alone does not tell you whether a worker has the skills for your individual seizure plan.
  • If you live remotely, ask your GP about regional referral networks, visiting specialists, telehealth and local blood-test or EEG arrangements.
  • Keep a call log: date, staff member, answer, documents requested, next action and the date you will follow up.

Supporting source ↗ · Supporting source ↗

Keep routine care and urgent care distinct

A directory search is not suitable when someone needs emergency treatment. In Australia call 000 for an emergency. Follow the person’s written seizure plan and the on-site First Aid guide. If a problem is urgent but not an emergency, seek advice from a suitable health professional rather than waiting for an unmonitored website enquiry.

  • Before leaving a consultation, write down the next appointment, planned tests and who is responsible for each result.
  • Ask your treating team for a specific plan for deteriorating seizure control or medicine access problems.
  • Review your care-team sheet after a hospital admission, new diagnosis or change of treating clinician.

Supporting source ↗

Sources and further reading
NDIS & Centrelink: a practical application guideSeparate disability support from income support, organise useful evidence and choose the correct application or review pathway. Having epilepsy does not automatically qualify someone for a payment or an NDIS plan.

Questions you may have

What evidence is useful for a support application?

Describe the actual impact on everyday function, assistance needs, variability and safety. Gather relevant treating reports. A diagnosis alone does not establish eligibility for a particular program.

How can I keep the application manageable?

Use a checklist of required documents, dates, outstanding reports and official contact details. Confirm current forms and requirements with the issuing service.

Read the guide in depth

NDIS and Disability Support Pension answer different questions

An NDIS plan funds approved disability-related supports for eligible participants. Disability Support Pension (DSP) is a Services Australia income-support payment assessed under its own medical and non-medical rules. Applying for one is not applying for the other; approval for one does not guarantee approval for the other. Neither application replaces appropriate medical care.

Think about the need first. Help with disability-related daily activities may be an NDIS question. Money to live on when work capacity is substantially affected may be a Centrelink question. A transport need, a carer’s circumstances and a temporary inability to meet work-related requirements each have separate pathways.

  • Record the actual problem: what you cannot do, what help you need, how often and what happens without that help.
  • Discuss options with your treating team and, where available, a social worker, NDIS partner or independent advocate.
  • Do not pay someone who promises approval. Do not give myGov passwords or one-time security codes to an adviser.

Supporting source ↗ · Supporting source ↗

Preparing for an NDIS access conversation

Contact an NDIS partner or the NDIA to discuss applying and the evidence needed. The access request form collects personal details and disability evidence, but the NDIA says you do not always need to complete that form to begin applying. Ask which pathway fits your situation. A diagnosis label by itself does not describe the assistance someone needs.

  • Prepare recent relevant reports explaining diagnosis, treatment and the impact of disability on ordinary activities. Ask your clinician which evidence addresses the agency’s questions.
  • Describe help with communication, learning, moving around, personal care, social participation and organising daily life, where relevant. Use real examples rather than copying a model answer.
  • For fluctuating problems, show the pattern over time. Explain seizure-related disruption and recovery as well as what is possible between events.
  • Identify your goals in ordinary language: attending study reliably, preparing meals safely, participating in the community or reducing dependence on family.
  • Keep a dated copy of the application, attachments and acknowledgement. Ask the NDIA what is missing if a request for more evidence is unclear.

Supporting source ↗ · Supporting source ↗

Useful epilepsy evidence: build a factual account

Use this original preparation checklist with your treating team. Do not change or exaggerate your history to fit a payment category. A seizure diary is one part of the picture; the consequences for day-to-day activities and the assistance needed also matter.

  • Seizure pattern: event types, frequency, awareness, falls or injuries, events during sleep, prolonged events and recovery time. Separate observed facts from uncertainty.
  • Treatment history: medicines tried, response, adverse effects and why treatment changed; relevant hospital care or other treatment.
  • Daily function: a concrete example of a task, the difficulty, the support required, its frequency and the result with support. Include reliable abilities as well as limitations.
  • Safety and supervision: who helps, why, what they actually do and whether there is a written clinician-approved seizure plan.
  • Informal care: record unpaid help and what would happen if that person were unavailable. Include sleep disruption or cancelled activities when these actually occur.
  • Supporting professionals: explain the question you need their report to answer and allow time for an appointment and preparation.
When an existing NDIS plan no longer fits

A plan variation, a plan reassessment and a review of a decision are different processes. A variation changes parts of an existing plan. A reassessment can create a new plan when significant ongoing changes mean different supports are needed. A decision review challenges a decision you disagree with. Ask your my NDIS contact which process applies.

The NDIA reassessment page current at 30 September 2026 requires a completed plan reassessment request form from the participant, plan nominee or child representative in the circumstances described on that page. It also requires evidence of significant ongoing change. A provider cannot simply request this through ordinary consent on your behalf. Use the current official instructions.

  • For changed circumstances: describe what changed, when it changed, what your current plan cannot meet and the evidence supporting the request.
  • For a disputed decision: read the decision letter promptly, note the review deadline, identify the specific decision and give reasons and relevant evidence. A complaint about customer service is a different issue.
  • Keep written records of each request and ask for acknowledgement. Seek advocacy or legal advice early if a deadline or the correct process is unclear.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

Preparing a DSP claim and medical evidence

DSP assessment considers how medical conditions affect work capacity under the agency’s rules. Services Australia asks for medical evidence about diagnosis, treatment, symptoms, day-to-day impact and prognosis. Under the general medical rules, the conditions being assessed must be diagnosed, reasonably treated and stabilised. Your doctor supplies evidence; Services Australia makes the decision.

  • Use SA466 for the paper DSP claim route, or follow the agency’s online claim instructions. The claim page identifies the other required forms.
  • Use SA473 as the patient medical-evidence checklist. Give SA478 to a treating health professional who wants the corresponding clinician checklist.
  • SA472 gives consent to disclose medical information. Read it and understand who may receive information.
  • Bring current reports for all conditions that affect work, rather than relying on one short certificate saying “unfit for work”.
  • Ask how to provide missing evidence, keep submission receipts and attend requested assessments. Report changes as required while a claim or payment is active.

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

Choose the correct form for the question

These are different documents, not interchangeable “epilepsy forms”. Ask the agency which document it needs before booking a long paperwork appointment. The official form pages below are retained so users can confirm the latest revision and complete an actual government application. EpilepsyWise worksheets are preparation aids and are not government claim forms.

  • SU415 — Centrelink Medical Certificate: for a medical practitioner to document temporary incapacity affecting the patient’s requirements. It is not a DSP approval or an automatic exemption.
  • SU684 — Verification of medical conditions: used to supply information for an Employment Services Assessment.
  • SA332A — medical report for a person aged 16 or over, used in assessment of Carer Payment and/or Carer Allowance. The report alone is not a claim.
  • SA431 — corresponding Carer Payment/Carer Allowance medical report for a child under 16.
  • MA001 — Mobility Allowance claim. Eligibility concerns travel for specified work, study or related activities and difficulty using public transport; inability to drive alone does not establish eligibility.
  • NDIS — access request and supporting evidence; plan reassessment request; plan variation or change information as directed; and request for review of a decision. Use the current page for the specific process.

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

Before you lodge and after a decision

Create a simple contents list for your application pack. Check names, identifiers and dates; make sure each requested attachment is present and every required person has completed their section. Send through the agency’s verified channel and retain a copy. If an office visit is needed, confirm the service provided, appointment arrangements and opening hours first.

  • Record application reference, submission date, expected next step and follow-up date.
  • Open official correspondence promptly. Ask for an explanation in plain language or communication support if needed.
  • If refused, request the reasons and the review options. Note the deadline in the letter and get help before it passes.
  • For NDIS provider quality or safety concerns, the NDIS Commission has a complaints pathway. That is separate from asking the NDIA to review a funding decision.

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.

Questions you may have

How can I discuss SUDEP without being overwhelmed?

Ask your doctor what your own seizure pattern means and which steps may reduce risk. Discuss convulsive seizures, seizures during sleep, treatment use and seizure control. The aim is a practical, individual plan.

Sydney Children’s Hospitals Network · SUDEP ↗

Can an alarm guarantee protection?

No. Discuss the purpose and limits of any device or night-time support. Some events may be missed and false alarms occur. A device should accompany a care plan, not be described as guaranteed protection.

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.

Questions you may have

What should the school receive?

Provide a current epilepsy management plan, usual seizure descriptions, first aid and emergency contacts. Prescribed emergency medicine also needs clear prescriber instructions and appropriately trained staff.

Epilepsy Action Australia · school resources ↗

What learning adjustments might help?

Discuss the child’s actual needs. Examples include rest breaks, help after missed lessons, extra reading time and assessment adjustments. Requirements and arrangements vary by setting and state.

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.

Questions you may have

Should I mention anxiety, low mood or memory concerns?

Yes. Emotional health and cognitive concerns belong in epilepsy care. Describe how symptoms affect daily life and when they began, including any connection with a medicine change. Ask what assessment and support would help.

Epilepsy Foundation · mental health ↗

How can I prepare to talk about mood changes?

Note the timing, severity, effect on sleep and relationships, and any treatment changes. A trusted person’s observations may help. Seek urgent help if there is immediate danger rather than waiting for a routine review.

Epilepsy Foundation · mental health ↗

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.

Questions you may have

What changes at work could be useful?

Consider the actual tasks affected by seizures, treatment or transport restrictions. Possible adjustments involve work arrangements, shift patterns, equipment, recovery time or colleague first-aid training. Discuss an individual plan.

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
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.

Questions you may have

What should I carry when travelling?

Take enough labelled medicine for the trip and delays, essential supplies in hand luggage, a medicine list and a treatment letter. Check destination requirements before departure.

Epilepsy Foundation · travel planning ↗

How should I manage time-zone changes?

Ask your doctor or pharmacist for a written schedule covering travel and arrival while preserving the prescribed intervals. Protect sleep. A universal rule based only on local time or waking time is not suitable for every medicine.

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
Transport when you cannot driveProtect access to work, study, appointments and community life with a realistic weekly travel plan and an emergency backup.

Questions you may have

What should I plan when I cannot drive?

List essential trips, available public transport, help from trusted people and any local support options. Check accessibility, cost and booking requirements directly with the provider.

Does this website arrange a ride?

No live booking, driver matching or transport dispatch is provided here. Use the information to plan with established services and trusted support people.

Read the guide in depth

Map the journeys that matter

Start with one ordinary week. List every essential journey, not just medical appointments. Include employment, study, caring responsibilities, shopping and meaningful social activities. Give each journey a required arrival time and a realistic return time.

  • Identify journeys that can move to another day or become telehealth or remote attendance.
  • For each remaining journey choose a primary option and a backup: public transport, trusted lift, taxi, commercial rideshare or locally available community transport.
  • Include walking to the stop, transfers, waiting time and the cost of cancelled services.
  • Discuss support needed for travel with your treating team where seizures or recovery could make independent travel difficult.

Supporting source ↗

Compare practical options

A service being nearby does not mean it meets your needs. Ask the operator directly about bookings, availability and support. Community transport may have eligibility, catchment and purpose restrictions; it is not automatically available to everyone who cannot drive.

  • Ask about advance booking, same-day changes, recurring trips, return-trip waiting and cancellation fees.
  • Explain only the relevant assistance needed: a companion, accessible vehicle, pickup instructions or help finding an entrance.
  • Agree a check-in and backup contact with a trusted person if useful. Avoid sharing detailed medical information with an unverified driver.
  • Do not use ordinary transport to replace an ambulance when emergency treatment is required.
Subsidies: apply for the actual travel barrier

Services Australia Mobility Allowance has specific criteria, including difficulty using public transport without substantial help and travel for eligible work, study or related activities. It is not a general payment for everyone who loses a licence. NDIS transport supports likewise require consideration of disability needs and the person’s plan; discuss current rules with the NDIA.

  • Describe what makes public transport difficult and what assistance is needed. Distinguish that difficulty from the separate restriction on driving.
  • Ask how different payments or funded transport interact before assuming both can be claimed.
  • Keep receipts and the agency’s written guidance if you are relying on reimbursement or funded travel.

Supporting source ↗ · Supporting source ↗ · Supporting source ↗

NSW example: Taxi Transport Subsidy Scheme

NSW has a Taxi Transport Subsidy Scheme with eligibility criteria for severe and permanent disability affecting use of public transport. Epilepsy is addressed in the application, including a section for the neurologist. Having epilepsy or being unable to drive does not itself establish approval. Check the current official scheme and application before arranging paperwork.

  • Ask your neurologist whether the epilepsy section is relevant to your situation and allow time for the form to be completed.
  • Read current conditions, review requirements and how the subsidy is used before the first trip.
  • If you live elsewhere, identify your own state or territory scheme; do not use NSW criteria as a national rule.

Supporting source ↗ · Supporting source ↗

A reliable lift agreement

For an informal trusted lift, agree details before the first journey: pickup location, arrival buffer, who pays costs, how changes are communicated and what happens if the driver cannot attend. If a person is driving as a commercial or funded service, use the appropriate verified operator and requirements.

  • Confirm a driver is currently licensed and legally permitted to drive; epilepsy in a driver does not itself establish either eligibility or ineligibility.
  • Agree what the driver should do if a seizure occurs and who to contact. Do not treat a lift as clinical supervision unless that support has actually been arranged.
  • Set a review date for the plan as your work, study or driving status changes.
  • EpilepsyWise does not currently match drivers, take fares, verify drivers or provide live journey monitoring.
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.

Questions you may have

How can family help without taking over?

Agree how the person wants support, who can receive the plan and what to do during recovery. Learn their usual events while respecting independence and privacy. Raise changing needs with the care team.

NICE NG217 · information and support ↗

What if caring is affecting my own wellbeing?

Tell the care team if disrupted sleep, work or emotional demands are becoming difficult to sustain. Ask about information, practical help and carer support as part of ongoing care planning.

NICE NG217 · information and support ↗

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
Appointment ToolkitPrepare a concise, useful account of what is happening and leave with a plan you understand.

Questions you may have

What should I bring to my next appointment?

Bring your medicine list, seizure diary, witness descriptions, side-effect concerns and important questions. Include changes in mood, sleep, school, work or pregnancy plans. Ask for the agreed next steps in writing.

NICE NG217 · information and support ↗

Read the guide in depth

Choose the purpose of the visit

Write your three main priorities before the appointment: understanding the diagnosis, improving control, managing a side effect or making a life decision. Mention urgent changes when booking so the clinic can triage appropriately.

Do not wait for a routine appointment for a seizure emergency or a serious medicine reaction.

Supporting source ↗

Build a one-page story

Describe what happens before, during and after each type of event, the age it began, frequency, injuries and recovery. Include the last event date and whether the pattern is changing.

If a witness can attend with consent, ask them to describe observations in their own words. A safely recorded video can be helpful, but filming must never delay first aid or compromise privacy.

Bring the treatment record

Bring medicine names, formulations, doses and times from labels; record past medicines and why each stopped. Include supplements, contraception, allergies and other diagnoses.

Explain practical barriers such as supply, swallowing, cost, shift work or adverse effects. These are care problems to solve together. Do not change doses while preparing for the visit.

Ask about diagnosis and next tests

Ask what supports the diagnosis and whether there are alternatives. Clarify your seizure type or syndrome if known. Ask what the EEG, scan or other test can and cannot show, and how results will reach you.

If seizures continue, ask whether diagnosis, medicine suitability, adherence and further specialist assessment need review before another treatment is added.

Leave with written next steps

Repeat the plan back in your own words. Ask for a written schedule if treatment changes. Confirm what to do after a missed dose, vomiting, an adverse effect or another seizure.

Clarify first aid, rescue treatment if prescribed, driving, pregnancy plans and any work or water precautions that apply to you. Ask who answers questions between appointments.

Make follow-up reliable

Before leaving, check test bookings, referral requirements, prescription supply and the date or trigger for review. Keep copies of letters and the current action plan together.

If you cannot follow the plan because of cost, availability or transport, contact the clinic rather than silently delaying treatment.

Sources and further reading
MyWise preview: planned care organisationA read-only layout preview. It accepts no entries, photos or health records and cannot save, remind, monitor or contact anyone.

Questions you may have

Can I enter or save information in MyWise now?

No. MyWise is a read-only preview. It accepts no health entries or photos, stores no patient record and sends no reminders. Use downloadable blank forms offline and keep completed copies securely.

What belongs in my own care summary?

Include your epilepsy description, current medicines, allergies, emergency contacts, doctor, pharmacy, next review and relevant care-plan dates.

Can I save a real health profile here now?

Personal account storage is not active. Use the printable resources privately with your care team. The dashboard remains a preview and does not collect your health record.

Read the guide in depth

What is available now

The current MyWise page shows a planned layout only. You cannot enter fictional or real details, upload medicine photos, record a seizure, save appointments or set reminders. It does not store a patient health record.

Download a blank seizure diary, medicine schedule or appointment worksheet for offline use. Completed copies stay under your control and are not uploaded by these tools.

Supporting source ↗

Offline preparation: Record observations, not a self-diagnosis

Use a stable name for each event pattern, then describe what actually happened: warning, responsiveness, movements, duration and recovery. Mark uncertain times as approximate.

Compare your record with a witness when possible. Your clinician interprets the pattern; an event count alone cannot determine seizure type or treatment.

Offline preparation: Maintain a trustworthy medicine list

Copy name, strength, formulation, prescribed dose and times from current labels. Date the list and record which prescriber or pharmacist confirmed it. A photograph can help identify a package but does not replace the actual prescription.

Keep discontinued medicines clearly separate. Ask the pharmacist to reconcile discrepancies before anyone changes treatment.

Offline preparation: Appointments and reminders

Use your usual calendar and pharmacy arrangements for actual reminders. A printable schedule does not send alerts, and a saved calendar event only works after it has been imported and notifications are enabled.

Plan a refill margin and check the next appointment before the supply runs low. Keep a backup if your phone is lost or out of battery.

Offline preparation: Choose what to share

Give a clinician a concise relevant summary rather than an unfiltered collection. Share only with people you choose, and remove information that another person does not need.

A document you save can remain on a shared phone or computer. Use a private device, secure account and careful storage. Do not post identifiable plans in a public group.

Future personal tools

Secure accounts, durable records, caregiver permissions and reliable reminders need further implementation and testing. They are not activated by visiting this page.

Until then, use the downloadable blank worksheets and your existing clinical team for real care coordination.

Sources and further reading
EpiSOS: emergency information and future plansEpiSOS is planned and inactive. This website sends no alerts or test alerts, does not contact carers, share locations or call emergency services. In an emergency in Australia call 000; use the local emergency number outside Australia.

Questions you may have

Does EpiSOS send an alert now?

No. EpiSOS is planned and inactive. It sends no alerts or test alerts, does not contact carers, share a location or call emergency services. In an emergency in Australia call 000; elsewhere use the local emergency number.

Epilepsy Action Australia · seizure first aid ↗

Who should know my emergency plan?

Choose trusted people who may need to help. Agree what to do, which contacts to call and when to use emergency services. Review the plan together.

Does the SOS demonstration send help?

No. It does not dispatch an ambulance, notify contacts or provide continuous monitoring. In an emergency in Australia call 000 directly.

Read the guide in depth

If help is needed now

Call 000 in an Australian emergency; outside Australia use the local emergency number. Read seizure first aid and follow the individual action plan. Do not wait for EpiSOS.

The future Big Red Button needs development and verification. Its appearance or information page does not send any alert.

Supporting source ↗ · Supporting source ↗

Build your trusted response circle

Choose people who agree to help and discuss what they can realistically do. Ask who is nearby, who may be asleep or working, and who is the backup. Do not assume an unread message means someone is responding.

Agree what essential information each person needs: address, access arrangements, first aid plan and relevant emergency contacts. Review consent before sharing health details.

Write the escalation plan

Describe when to call an ambulance, who makes the call, how others will know, and how to handle no response. The plan should still work with no internet, a flat battery or a missing phone.

Keep printed emergency instructions accessible to agreed carers. A wearable or app notification cannot substitute for first aid or an emergency call.

Rescue treatment needs a separate prescription

If rescue medicine is prescribed, the written plan must identify the product, dose, route, when it is given, repeat limits and escalation. Only people trained for that person’s plan should administer it.

Do not improvise dosing from a website or another patient’s instructions. Check storage and expiry with the pharmacist or treating team.

Rehearse safely and review

Use a clearly announced practice exercise, not a real emergency notification, to confirm everyone understands their roles. Update the plan after moving house, a medication change or a change in caregivers.

The intended future EpiSOS service would require accepted invitations, delivery and acknowledgement handling, consent and reliability testing. Those capabilities are not live here.

Sources and further reading
EpiWatch: choosing seizure-alert technologyCompare a device against the seizures you actually have, the help you need and the evidence behind its claims.

Questions you may have

What should I ask before relying on a seizure device?

Ask which events it detects, how often events are missed, false alarms, battery and connectivity needs, who receives alerts and what they should do.

What should happen if the device fails?

Agree a backup plan covering loss of power, connectivity or response. A device should not be the only part of the person’s safety arrangements.

Read the guide in depth

Begin with the intended purpose

Decide whether you need a manual call for help, a fall alert, night-time movement monitoring or detection of a particular seizure pattern. These are different tasks.

A device intended for convulsive seizures may miss staring episodes or other non-convulsive events. Ask your epilepsy team which event you are trying to detect.

Supporting source ↗

Ask what has been validated

Request independent evidence for your seizure type, age group and setting. Ask how often seizures were missed and how many false alarms occurred. Marketing descriptions do not answer these questions.

Ask about regulatory status for the exact product and intended use in your country. An ARTG entry is not a promise that every seizure is detected or that outcomes will improve for you.

Supporting source ↗

Follow an alert all the way to help

Identify the complete chain: sensor, phone or hub, internet or mobile connection, notification and available responder. Ask what happens when any link fails.

A missed call or notification is possible. Agree a backup plan and ordinary first-aid and emergency arrangements before relying on a device.

Compare everyday practicality

Ask to trial the device when possible. Consider comfort, night-time use, battery life, waterproof limits, skin irritation, phone compatibility, charging habits and subscription cost.

Find out whether the product still works during power outages or when the phone is in another room. Ask how updates, repairs and technical support are handled.

Check privacy and shared access

Ask what is recorded, where recordings are stored, who can watch them and how access is removed. Home cameras can capture other people and private spaces. Discuss consent and dignity with everyone affected.

Use strong account security and review connected carers. Ask how recordings are deleted and whether information is used for purposes beyond your care.

Review after a real-world trial

Record alerts, witnessed events, missed events, disrupted sleep and caregiver workload. Bring this to the clinical team when deciding whether to continue.

No monitor guarantees safety or prevention of SUDEP. Keep the clinical safety plan, prescribed treatment and agreed response arrangements in place. EpiWatch integration remains planned.

Supporting source ↗

Sources and further reading
EpiConnect: relationships and peer supportSocial connection and peer support can matter. EpiConnect is planned; new forum and story contributions are paused pending verified privacy/reporting contact and moderation arrangements.

Questions you may have

Can I post a story or forum contribution now?

New submissions and publication are paused until contact delivery, privacy, reporting, moderation and retention procedures have been verified. Read the community privacy guide for current limits.

What should I avoid posting in a public community?

Avoid identifying health records, prescriptions, addresses and other people’s private information. Seek consent before discussing another person’s circumstances.

Can peer advice replace my treatment plan?

No. Shared experiences can help you prepare questions, but a medicine change or urgent symptom needs advice through the appropriate clinical service.

Read the guide in depth

Current availability and privacy

New contributions and publication are paused. The contact, reporting, appeals, safeguarding and retention procedures must be approved and tested before reopening. Read https://epilepsywise.org/community-guidelines/ for the current status.

Public display names do not make an account anonymous. Existing contributor records and withdrawal metadata are separate from the MyWise preview. A posted copy elsewhere may remain after removal here.

Choose what to share and when

You decide when to discuss epilepsy with friends or a potential partner. Consider what they need to know to understand you and respond safely. A diagnosis is not a measure of suitability for a relationship.

Start with your own experience rather than a long medical history. Explain how seizures affect you, what helps and what you prefer others not to assume.

Teach practical help with consent

With a trusted person, go through the first-aid guide and your individual action plan. Discuss whether they are comfortable helping and who else can assist.

Sharing a plan does not give someone unlimited access to your health information. Agree boundaries about medication reminders, appointments and contacting clinicians.

Look for healthy peer spaces

A useful group respects confidentiality, differences in treatment and personal choice. Avoid spaces that pressure you to stop treatment, buy a cure or disclose identifying records.

Peer stories offer perspective, not an individual prescription. Take concerns about your own treatment to your clinician or pharmacist.

Protect yourself when meeting online

Verify who you are speaking with before sharing personal details or money. Use public meeting places and tell a trusted person your plans. You can leave a conversation that feels coercive or disrespectful.

If someone threatens, harasses or exploits you, preserve relevant evidence and use the platform’s reporting channels. For immediate danger in Australia call 000.

Plan for future connection services

A future EpiConnect service would need adult eligibility, explicit consent, moderation, reporting and blocking, privacy controls and clear limits. It would not certify anyone as medically or personally suitable for marriage.

No profile, matching, payment or private health document is collected on this page. Use existing trusted relationships and professional support for current needs.

Sources and further reading
EpiResearch: understand research before joiningLearn how to judge a study invitation and prepare questions for your treating clinician.

Questions you may have

How do I judge a claim about a new treatment?

Ask who was studied, what it was compared with, which outcomes improved, what harms occurred and whether the findings apply to you. An encouraging result does not automatically mean a treatment is suitable for every epilepsy.

SANAD II · focal epilepsy trial ↗

Read the guide in depth

What a study may ask of you

Research may test a medicine, device, operation, behaviour change or a way of delivering care. Other projects observe existing treatment or collect interviews. The study design affects what participation means.

Ask whether your normal care continues, whether treatment is allocated by chance and whether a placebo is involved. A study is designed to answer a question; benefit for an individual is uncertain.

Check the study and its team

Use a recognised trial registry and check the full study identifier, sponsor, locations and current contact details. Ask for the participant information sheet and ethics-approval details.

A registry entry is a starting point, not a personal recommendation or assurance that recruitment is still open. Confirm with the study team and your treating clinician.

Understand informed consent

Ask for enough time to read and discuss the information. Participation is voluntary. Ask what withdrawing involves, how already collected data are handled and whether stopping treatment needs clinical supervision.

For a child or someone requiring decision support, ask how consent and their own agreement will be managed. You can ask for an interpreter or accessible explanation.

Clarify burden, cost and safety

List visits, travel, blood tests, scans, time off work and any changes to medicines or contraception. Ask which costs are reimbursed, who covers injury and who answers urgent problems.

Understand possible benefits, known risks and uncertainty. Ask how adverse effects are reported, whether driving may be affected and what care continues after the study ends.

Protect your information

Ask who sees identifiable information, whether it leaves Australia, how long it is retained and whether samples or records may be used for future studies. Distinguish agreeing to this study from optional future research.

Do not send medical records to an unverified social account or pay a fee merely to secure entry into a supposed trial. Verify unexpected recruitment messages using the institution’s official contact.

Take the questions to your clinician

Bring the information sheet and study identifier to your review. Discuss how the study fits your seizure type, other treatments, pregnancy plans and practical support.

Ask whether results will be shared with participants and who will manage any treatment transition. EpilepsyWise does not currently recommend or recruit for individual trials.

Sources and further reading
EpiGame: learn from observationsUse the existing interactive activity to build language for describing seizures, then bring observations to a clinician.

Questions you may have

What is the learning activity for?

It helps you explore how symptoms and context can lead to different clinical questions. It does not diagnose epilepsy or select a medicine for you.

How can a clinician use it for teaching?

Discuss why more than one explanation may fit, what additional history would help and which test would answer the unresolved question. Use it to practise reasoning, not certainty.

Read the guide in depth

Describe before you label

Record what someone could see or hear, as well as what you experienced. Examples include a pause in activity, a repeated movement, a fall, a brief jerk or a change in awareness.

Several conditions can resemble seizures. Selecting an observation does not establish that an event was epileptic.

Supporting source ↗ · Supporting source ↗

Add the surrounding story

Timing, duration and recovery matter. Describe whether the person was asleep, waking, standing or exercising, and whether there was warning, injury or prolonged confusion.

Mark uncertainty openly. A witness and patient may remember different parts of the event, and both accounts can help.

Use the reading paths

The activity points toward educational topics associated with selected observations. Read them to learn vocabulary and questions; do not treat the suggestions as a ranked diagnosis.

A symptom can occur in more than one seizure type or in a non-epileptic condition. A clinician interprets it alongside history, examination and appropriately chosen investigations.

Turn learning into a consultation

Take a brief description and your main questions to the appointment. Ask what alternative explanations need consideration and what information would help distinguish them.

Do not change medicines, driving or emergency instructions because of an activity result. Follow your current care plan while seeking review.

Keep learning comfortable

There is no need to rush, compete or repeatedly test yourself. Stop if the activity feels worrying or tiring, and discuss concerns with someone you trust.

The activity is not a seizure test and should never be used to provoke an event. Seizure first aid is the relevant resource during an actual emergency.

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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