Frequently asked questions

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 ↗

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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 ↗

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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) ↗

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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.

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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.

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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.

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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 ↗

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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 ↗

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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 ↗

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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 ↗

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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 ↗

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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 ↗

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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.

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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 ↗

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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 ↗

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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.

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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.

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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.

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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.

Sources and further reading

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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 ↗

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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.

Sources and further reading

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EEG: the recording, the result and the clinical questionPatient explanations and professional interpretation notes.

Questions you may have

What does an EEG do?

An electroencephalogram (EEG) records electrical signals using small sensors on the scalp. It records activity; it does not put electricity into your brain. Your team will explain how to prepare, including whether they want you to sleep during the test.

NICE NG217 · diagnosis and assessment ↗

What happens at the appointment?

You may be asked to open and close your eyes, breathe deeply or look at flashing lights. These procedures are explained beforehand because they can bring out useful changes and occasionally provoke a seizure. Tell the team about your concerns and follow their individual instructions.

NICE NG217 · diagnosis and assessment ↗

Can an EEG be normal in epilepsy?

Yes. The recording is a short sample of brain activity. Some people with epilepsy have no relevant changes during a routine test. Your doctor may recommend a sleep, longer home recording or video-EEG if further information would help.

NICE NG217 · diagnosis and assessment ↗

Does an abnormal EEG always mean epilepsy?

An abnormal result is not automatically epilepsy. Some changes reflect drowsiness, medicines or other brain conditions. Movement and blinking can also affect the recording. Your specialist interprets the test alongside your symptoms and history.

NICE NG217 · diagnosis and assessment ↗

Sources and further reading

Iatrogenic refractory epilepsyWhen apparent treatment resistance calls for a careful diagnosis and treatment review.

Questions you may have

What does “iatrogenic refractory epilepsy” mean here?

These sites use the phrase to discuss apparent treatment resistance that may be related to diagnosis or treatment. It is a prompt to review the whole picture, not a new diagnosis to apply to yourself.

ILAE · drug-resistant epilepsy definition ↗ · Smith et al. · epilepsy misdiagnosis in a specialist referral cohort ↗

How might treatment problems look like resistance?

Possibilities include events that have another explanation, an epilepsy type that has not been recognised, a medicine unsuitable for that seizure pattern, or treatment effects mistaken for new symptoms. More than one issue can coexist.

ILAE EpilepsyDiagnosis · epilepsy imitators ↗ · Genton et al. · seizure aggravation in selected juvenile myoclonic epilepsy patients ↗

Does this mean levetiracetam is the cause?

No. Levetiracetam is an appropriate option for many people. The concern is a prescription without a clear individual rationale and review, rather than one medicine being universally wrong. Do not stop or change treatment on your own.

NICE NG217 · seizure-specific treatment ↗ · Australian Government Medicine Finder · levetiracetam ↗

What can I ask at my review?

Ask whether the events are all the same, whether the epilepsy type is clear, what each medicine has achieved, and what might explain continuing symptoms. Bring your medicine list, event diary and side-effect concerns.

What is the diagnosis being treated?
What has each treatment helped or worsened?
What further assessment would change the plan?

NICE NG217 · treatment and monitoring ↗

Could I still have genuine drug-resistant epilepsy?

Yes. Some epilepsies remain difficult to control despite appropriate treatment. After two suitable, adequately used treatment schedules fail, specialist assessment should not be delayed while the diagnosis and treatment history are reviewed.

ILAE · drug-resistant epilepsy definition ↗ · ILAE · specialist and surgical evaluation ↗

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