Clear Answers. Reliable Starting Points.
Frequently Asked Questions
Epilepsy is a disease of the brain. Find clear answers about what that means, seizure first aid, treatment, daily life and support in Ontario.
About this information: This webpage is subject to continuous review by Epilepsy Ontario to help keep the information current. Updates to linked pages may be in progress. These short answers are starting points, not a complete guide.
This material is for informational purposes only and should not be used for self-diagnosis or as a substitute for professional medical advice, diagnosis or treatment. Consult your healthcare provider about your own health and care.
Need seizure first aid now?
Call 911 for a first known seizure, a seizure lasting more than five minutes, repeated seizures without recovery, difficulty breathing or another medical emergency. Other circumstances also require help; read the full guidance.
Understanding Epilepsy
Start with the facts.
Is epilepsy a disease?
Yes. Epilepsy is a disease of the brain. The International League Against Epilepsy and the World Health Organization both recognize it as a neurological disease. You may also hear it described as a condition or disorder, but those words do not mean it is less serious. A seizure is an event; epilepsy is the disease involving an enduring tendency to have epileptic seizures.
Is epilepsy contagious or someone’s fault?
No. Epilepsy is not contagious, and it is not a personal failing. Causes can be structural, genetic, infectious, metabolic or immune-related; sometimes the cause remains unknown.
Does one seizure mean I have epilepsy?
Not automatically. Epilepsy can be diagnosed after one seizure in particular circumstances, including a sufficiently high risk of further seizures, or when an epilepsy syndrome is diagnosed. This requires clinical assessment.
Do all seizures involve shaking?
No. Seizures may involve changes in consciousness, sensation, emotion or behaviour, with or without obvious movements. ILAE’s 2025 classification uses focal, generalized, unknown whether focal or generalized, and unclassified.
What is an aura?
An aura can be a focal seizure with preserved consciousness. It can occur on its own or be the first part of a seizure that develops further. It is not simply a warning outside the seizure.
Can I have epilepsy with a normal EEG or MRI?
Yes. A normal EEG does not rule out epilepsy, and some people have no structural abnormality identified on MRI. Test results must be interpreted alongside the history and clinical assessment.
Does everyone with epilepsy react to flashing lights?
No. Only a small proportion of people with epilepsy have photosensitive seizures. Do not test yourself with flashing content; ask your healthcare provider whether photosensitivity is relevant to you.
What are triggers and seizure threshold?
A trigger may make a seizure more likely for a particular person. “Threshold” describes susceptibility, not a number you can measure yourself. Many seizures have no identifiable trigger, even when treatment is followed carefully.
First Aid & Safety
Know how to help.
What should I do during a seizure?
Stay calm, time the seizure, protect the person from injury and stay through recovery. Do not restrain them or put objects in their mouth. Follow their seizure action plan, if available.
When should I call 911?
Call for a first known seizure, a seizure lasting more than five minutes, repeated seizures without recovery, breathing difficulty or another emergency sign. Other circumstances also require help. Do not wait five minutes if another emergency sign is present.
What is status epilepticus?
A prolonged seizure or seizures repeating without recovery can be a life-threatening emergency. The older 30-minute description must not be used as a reason to delay help. Follow the emergency guidance and any prescribed action plan.
Can someone swallow their tongue? Are seizures painful?
A person cannot swallow their tongue. Do not put objects or fingers in their mouth. Experiences vary, and pain or injury can occur during or after a seizure.
What is SUDEP?
SUDEP means sudden unexpected death in epilepsy when another cause is not identified. Risk varies; frequent or uncontrolled tonic-clonic seizures are an important risk factor. Ask your healthcare team about your own risk and ways to reduce it.
Can a watch or monitor prevent SUDEP?
No device has been proven to prevent SUDEP. Some validated devices can detect certain seizures and alert another person, but they can miss events or raise false alarms. They do not replace treatment, an action plan or a person able to respond.
What are seizure response dogs?
Some assistance dogs are trained to perform tasks in response to a seizure, such as seeking help. Do not assume a dog can reliably predict seizures. Check eligibility and current application availability directly with the provider.
Treatment & Medication
Understand your options.
How is epilepsy treated?
Treatment may involve anti-seizure medication and, for some people, surgery, dietary therapy or stimulation. The choice depends on the individual. Complementary approaches should not replace prescribed treatment.
What are rescue medications?
These are prescribed treatments used in specific situations according to an individual plan. Not everyone needs one. Ask about when and how to use it, who should be trained and when to call 911. Our dedicated Rescue Medications section is coming soon.
What if I miss a dose or have trouble taking medication?
Ask your pharmacist or prescriber for instructions specific to your medicine. Do not double doses, crush tablets or change formulations without advice. Ask for help with swallowing, reminders or refill planning.
What if my medicine is unavailable or too expensive?
Contact your pharmacist before you run out. Ask about supply, coverage and safe next steps; do not ration doses or substitute products yourself.
What is drug-resistant epilepsy? When should I see a specialist?
ILAE defines drug resistance around failure of adequate trials of two appropriately chosen, tolerated and used medication schedules to achieve sustained seizure freedom. Ask about specialist review if seizures continue, the diagnosis is uncertain or side effects are difficult.
Must I try every treatment before surgical assessment?
No. Ask about referral when drug resistance is identified. An assessment does not commit you to surgery and may identify other options.
Can I stop medication if I am seizure-free?
Do not stop on your own. The course of epilepsy differs between people. Your clinician must assess the risks and benefits and, if appropriate, agree on an individualized withdrawal plan.
Is prescription cannabidiol the same as retail CBD?
No. Health Canada has authorized a prescription cannabidiol medicine for specific epilepsy-related indications. Retail cannabis and CBD products should not be treated as interchangeable with that medicine. Ask your epilepsy specialist about suitability and interactions.
Are functional / dissociative seizures the same as epilepsy?
No. These real events, also called PNES, are not caused by epileptic electrical activity. They need appropriate clinical assessment and care; appearance alone cannot establish the diagnosis.
Living with Epilepsy
Participation, planning and support.
Can I drive in Ontario?
Eligibility depends on medical standards and your circumstances. The Ministry of Transportation makes licensing decisions. Ask your healthcare provider about driving after a seizure and follow any licence restrictions.
Can I work with epilepsy?
Needs differ with the person and role. Explore information about disclosure, accommodation and human rights, and seek advice relevant to your situation.
What support can my child receive at school?
Work with the school on a Plan of Care and discuss learning and participation needs. A diagnosis alone does not automatically determine special education placement or support.
What about hormones, fertility and pregnancy?
Discuss menstrual patterns, sexual health, fertility, contraception and pregnancy planning with your healthcare team. If you become pregnant, seek a medication review promptly. Do not stop medication on your own.
Can alcohol or recreational drugs affect seizures?
Heavy alcohol use, withdrawal and some recreational drugs can increase seizure risk. If you may be dependent on alcohol, get medical advice before reducing or stopping.
Does epilepsy always cause learning or mental health difficulties?
No. Experiences vary. Some people have additional learning, memory, developmental or mental health needs. Tell your team about concerns so support reflects the person, not assumptions about the diagnosis.
How can family members help?
Learn seizure first aid, listen to the person’s preferences and agree on practical support. Discuss safety, independence and emotional wellbeing together. Ask a local epilepsy agency about available resources.
What should I bring to a medical appointment?
Bring your questions, medication list and a description of what happened before, during and after an episode. A witness’s account may help. Never delay first aid or emergency help to make a video.
Accessing Help in Ontario
Find a clear next step.
Can I get financial or disability support?
Programs have different eligibility rules. Explore official information about disability, sickness, caregiver and other benefits. An epilepsy diagnosis alone does not establish eligibility.
Where can I ask about drug coverage?
Your pharmacist can help explain coverage options. Ontario Drug Benefit and the Trillium Drug Program have specific eligibility and coverage requirements.
Who can help with home care or caregiver needs?
Ontario Health atHome coordinates assessment for home and community care and helps identify services. Access depends on assessment, eligibility and local options.
What about transport, equipment or support for my child?
Ask your local epilepsy agency or healthcare social worker about relevant programs. Confirm current eligibility, funding and application requirements directly with each provider.
Where can I find human rights or legal information?
Our rights page links to official information and legal support. Seek qualified advice promptly about an individual concern because deadlines may apply.
Epilepsy Ontario
Our work and your connection.
What does Epilepsy Ontario do?
Learn about our provincial organization, work and priorities. Local agencies provide different community services; contact them directly to learn what is available.
How can I help, give or advocate?
Explore volunteering, fundraising, giving and advocacy opportunities. Our annual reports and audited statements provide information about the organization’s work and finances.
Where can I read or share personal stories?
Explore Voices of Epilepsy. To ask about contributing your experience, use EO’s current contact page; publication is not guaranteed.
I still have a question. Who should I contact?
Ask Epilepsy Ontario or your local agency about resources and services. Direct personal medical questions to your healthcare provider. For an emergency, call 911.
Want to understand EO’s work and finances?
Selected references:
ILAE: Definition of Epilepsy ·
WHO: Epilepsy ·
AES / Epilepsy Foundation / Danny Did: Detection Devices.
