Frequently Asked Questions

Looking for a quick answer to a question about epilepsy? You can peruse our list of frequently asked questions and see if your answer is here. If it isn’t, look through the pages under our Educate, Engage, and Empower sections above and try using the search function at the top of the page. If you still need help you can contact us.

Please note that this page is intended to be supplementary to the rest of our information on our website. Most of these answers are meant to act as quick references to refresh your memory, and easy directions to more information. If you are learning the information for the first time, please be sure to read the full page linked at the end of the question.

Epilepsy - generalExpand Epilepsy - general Section

What is epilepsy?
  • Answer: It’s a common brain (neurological) disease characterised by recurrent seizures, which are brief disruptions in normal brain activity that interferes with brain function. Seizures can manifest as full-body convulsions, but there are many kinds – with some types, you might not even notice a seizure at all. Currently there is no cure, and for many it is lifelong. You can read more about what epilepsy is here.

What do I do if someone is having a seizure?
  • Answer: Your goals are to stay calm and keep the person safe until they are fully aware. Different seizure types require different levels of intervention but generally, you will want to:
    • Check the time so you know when the seizure started.
    • Check for medical or emergency identification.
    • If you know that the person has epilepsy or a seizure disorder continue to time the episode. If the seizure lasts longer than 5 minutes or repeats without full recovery, call 911.
    • If the person does not have epilepsy or a seizure disorder, call 911.
    • If the person is a child, notify their parent or guardian.
    • Stay with the person as they recover until full awareness returns.

    You can refer to this page for further details, including how to help during specific kinds of seizures.

How is epilepsy diagnosed?
  • Answer: Epilepsy is diagnosed by a physician or nurse practitioner. The health care professional may ask questions about the seizure such as what happened before, during, and after it. The person will also have an electroencephalogram (EEG) test to measure the electrical activity in the brain. Additional imaging tests such as MRIs and/or CT/CAT scans might be done as well. Then, based on the information gathered, a diagnosis of epilepsy might be made. You can read more about diagnosing epilepsy on this page.

How is epilepsy treated?
  • Answer: Medication is the most common and effective way to treat epilepsy; however, there are also non-drug treatments such as surgery, ketogenic diets, and nerve stimulation. Many people utilize complementary medicine in their care as well. It’s important to remember that everyone is different, and everyone responds differently, so a person with epilepsy should discuss their care with their physician before making any active decisions. You can read more about epilepsy treatments here.

Are there different kinds of seizures?
  • Answer: Yes, there are many different kinds split between two categories: generalized and focal (or partial) seizures. Generalized seizures involve the entire brain – these include absence seizures and tonic-clonic/convulsive seizures, which people often imagine when they think of epilepsy. Focal seizures, on the other hand, only involve one part of the brain – these include simple partial seizures and complex partial seizures. For more information on the different types, see this page.

Is epilepsy rare?
  • Answer: Epilepsy is not rare – in fact, about 1 in every 100 Canadians has epilepsy and about 50 million people worldwide. It can affect anyone of any age, race, and sex. Many famous people have had (or are suspected to have had) epilepsy, including Pope Pius IX, Prince John, Neil Young, Susan Boyle, Harriet Tubman, and many others! However, it should be noted that epilepsy is an umbrella term for a large variety of different kinds of seizure disorders. While epilepsy in general is common, the individual diseases that fall under that umbrella are typically rare in respect to the overall population.

How does someone get epilepsy?
  • Answer: Epilepsy is NOT contagious – you can’t catch it, and you can’t give it to someone else. A lot of the time it’s not known why someone has it – this is called idiopathic epilepsy. However, in other cases, factors like genetics can play a part. When the cause is known it is called secondary or symptomatic epilepsy, and this can result from brain injuries, stroke, infections, and certain genetic syndromes. You can find more information about how epilepsy can be caused on this page.

What is an aura?
  • Answer: An aura is a partial seizure that happens before a generalized seizure. It can serve as a warning sign, but it can happen on its own as well. The way it manifests is differs from person to person, but typically people who have auras don’t lose consciousness. You can read more about auras (simple partial seizures) here.

What is status epilepticus?
  • Answer: Status epilepticus is a seizure that lasts 30 minutes or more, or when seizures repeat without recovery. This can be life threatening is a medical emergency. If someone has been having a seizure for more than 5 minutes, or a second seizure begins before the person has fully recovered from a previous one, call 911. You can read more about status epilepticus here.

Can people die from epilepsy?
  • Answer: Epilepsy is a serious health condition. It’s rare but unfortunately people can die from epilepsy. Obtaining the best seizure control possible reduces the risk. Potential causes of death related to epilepsy can be from injuries or accidents during a seizure (such as drowning) or from complications related to status epilepticus. Other epilepsy-related deaths are categorized as SUDEP (Sudden Unexpected Death in Epilepsy) if a person dies suddenly without a structural or toxicological cause for death found at autopsy.

What is Sudden Unexpected Death in Epilepsy (SUDEP)?
  • Answer: A death is categorized as SUDEP when someone with epilepsy dies without any detectable reason and without warning. SUDEP can occur during the day but happens more often at night during sleep which makes it hard to find out what happened. There is often (but not always) evidence of a seizure before death. The strongest known risk factor for SUDEP is having frequent generalized tonic-clonic seizures, which makes it even more important for people to try and achieve seizure control. SUDEP accounts for up to 18% of all deaths in people with epilepsy.

Do people have seizures forever?
  • Answer: Up to 60% of people with epilepsy can control their seizures using medications. Some people have certain types of epilepsy that are age-dependent, or that resolve, for example children with rolandic epilepsy typically out-grow seizures in their teens.
    The International League Against Epilepsy also defines epilepsy as being resolved if someone has been seizure-free for 10 years and off anti-seizure medication for at least 5 years.

What’s the difference between seizures and epilepsy? Aren’t they the same?
  • Answer: They’re very closely related, but not quite the same. A seizure is the brief disruption in normal brain activity that interferes with brain function. Anyone can potentially have a seizure and it doesn’t automatically mean that they have epilepsy. Epilepsy is a brain disorder associated with an increased susceptibility to seizures. You can read more about the difference here.

What triggers seizures?
  • Answer: There are a number of different things that can trigger a seizure such as stress, fevers, a female’s menstrual cycle, alcohol, flashing lights, and many others. The triggers are different from person to person. You can read more about them on this page.

What is a seizure threshold?
  • Answer: A seizure threshold is the level of brain stimulation at which someone has seizures. Everybody has one, whether they have epilepsy or not. If someone has a low seizure threshold it means that even a small amount of brain stimulation can cause a seizure. On the other hand, a high seizure threshold means that it will take a lot of brain stimulation to cause a seizure. People who have epilepsy have a seizure threshold that is lower than most people’s.

Are seizures painful or dangerous?
  • Answer: For many people, seizures usually aren’t painful; however, there are some people who could feel pain when one happens. Pain can also occur from injuries that occur secondary to the seizure – cuts, bruises, burns, and falls are some examples of common injuries. In terms of other people’s safety, seizures and the people who have them are not dangerous when they occur.

Can someone swallow their tongue during a seizure?
  • Answer: No, it’s physically impossible to swallow your tongue. It’s actually much more harmful to put something in someone’s mouth to prevent this because it could cause oral injuries. Instead, you should gently roll someone onto their side once their seizure has finished to ensure that their airway is clear. You can read more about what to do if someone has a seizure here.

What is refractory epilepsy?
  • Answer: Refractory epilepsy means that the person’s seizures cannot be controlled with medication. It is also called “drug-resistant”, “intractable”, or simply “uncontrolled”.

Do people who have epilepsy also have developmental disabilities and/or psychological difficulties?
  • Answer: Epilepsy does not automatically go hand-in-hand with developmental disabilities or psychological difficulties. While many people who have developmental disabilities may also have epilepsy, and some people with epilepsy may also experience depression or seizures that cause hallucinations, none of these things are guaranteed to occur in someone who has epilepsy.

How can I advocate for epilepsy?
  • Answer: There are lots of ways! One of the easiest ways is to talk about it. One of the most difficult challenges that people with epilepsy face is the stigma. By helping to spread awareness and educating others, you can help erase the misconceptions that exist about epilepsy.  Not only that, but voicing your concern – especially to the government – is another big way to advocate for epilepsy. Of course, there are lots of other ways to advocate, which you can read more about here.

Epilepsy OntarioExpand Epilepsy Ontario Section

What is Epilepsy Ontario’s purpose?
  • Answer: We are the voice of epilepsy in the province. Our goal is to improve the quality of life for people living with epilepsy through advocacy, education, client services, and information available through our online resource centre.

I need help – who can I contact?
  • Answer: If you’re living with epilepsy and you’re looking for help, contact your closest epilepsy agency, which you can locate on this page. If you don’t have an epilepsy agency near you, or you need other information about epilepsy, you can e-mail our Epilepsy Information Specialist at suzanne@epilepsyontario.org. If you want to get in touch with us about anything else, you can call us (905-474-9696 or toll-free at 1-800-463-1119), or e-mail us at info@epilepsyontario.org. You can find this information on our contact page.

Where does my donation to Epilepsy Ontario go?
  • Answer: As a non-profit organization, the kind contributions of our supporters are of utmost importance to us. Our funds are largely dedicated to our information, education, and advocacy initiatives, as well as our various provincial programs such as the OBCL Scholarship Awards and our Summerfest camp. We also have many fundraising events to help support our various activities. You can look up Epilepsy Ontario’s financial summaries and other information about us on our Annual Reports page.

What is Epilepsy Ontario’s relation to my local epilepsy organization?
  • Answer: As the provincial epilepsy organization, we partner with community-based epilepsy agencies which provide direct service. We work with our partner agencies in determining key issues and represent the voice of epilepsy to various stakeholders including government, funders, and the research and medical communities. In areas where there is no agency, support is available through our Epilepsy Information Specialist.

I want to help out Epilepsy Ontario! How can I do this?
  • Answer: Thank you! You can get involved by volunteering, donating, and coming to our fundraising events. You can read more about getting involved here.

I have a story that I want to share! Can I be on your news page?
  • Answer: You can contact our newsroom by calling 800-294-0051, emailing deron(at)axiomnews.ca, or commenting on one of our news stories. Additionally, if you want to share your own experiences you can submit them to the Epilepsy Stories website.

Living with epilepsyExpand Living with epilepsy Section

I have just had a seizure for the first time – what do I do?
  • Answer: Call 911 or have someone take you to the emergency department. A first-time seizure is a medical emergency.
    Experiencing a seizure for the first time can be a frightening experience. First, know that a single seizure is not an automatic sign of epilepsy – there may be other causes. It’s important to have a medical evaluation.

What information should I bring to my first medical appointment?
  • Answer:These tips that may be helpful in preparation for a medical appointment:

    • Take note of what happened during the seizure – how long it lasted, what happened before and after, what it looked like, and any other details you feel are relevant. You might need to ask someone else for help if you don’t remember all of it.
    • Write down some questions you want to ask your doctor – anything you are concerned, unsure, or curious about. If you’re not sure what to ask, here are some suggestions:
    • What kind of seizure did I have?
    • How will this affect my ability to drive/work/travel?
    • Will I have to start taking medications and if so, which ones and why?
    • What sorts of things will I need to adjust in my life (home/work/school) in order to keep myself safe?
    • If you want to read more about epilepsy and seizures, you may want to begin on this page.

I have epilepsy; can I drive?
  • Answer: In Ontario you can drive with epilepsy if you meet a certain criteria regarding your level of seizure control through medication and/or the recent nature of your seizures. This is to ensure your safety as well as those around you. If your physician feels that it’s not safe for you to drive, they are required by law to report you to the Ministry of Transportation. If you don’t agree with this, you can provide evidence and follow other steps to try and reinstate (or obtain) your licence. For more detailed information about driving and epilepsy, please see this page.

I'm a woman who wants to have children, but I’m afraid that my epilepsy will create problems in my pregnancy.
  • Answer: It is completely natural to have this concern for your future child. It may be helpful for you to know that more than 90% of women with epilepsy have healthy babies. However, just like any woman interested in getting pregnant, there is a lot to think about. As a woman with epilepsy, a unique consideration you’ll want to make is in regard to your medication. Antiepileptic drugs could have effects on your child, although the use of only one drug has shown a reduction in birth defects for the offspring of women with epilepsy. As you’re thinking about and planning to have a child, be sure to talk to your physician about your medication options and other considerations you may need to make. You can read more about pregnancy and epilepsy here.

I don’t want to take drugs to control my epilepsy – what else can I do?
  • Answer: It is important to always consult your physician before you stop or start any drug. Medication is typically the first line of treatment for epilepsy and the goal is to get a balance between good seizure control and minimal side effects. If a person is not responding well to medication, they should be referred to a comprehensive epilepsy program for evaluation. There are other treatment options available if someone does not achieve seizure freedom with medication. Complementary therapies exist as well – if they interest you, consult with your doctor about using these alongside your medication.
  • Be sure to talk to your physician about any other desires and concerns before pursuing another kind of treatment. Everyone is different – what works for one person may not be right for you and it’s important to figure out what is in your best interests with the help of a qualified health care professional.
  • Please keep in mind that the information on this website is not intended to serve as professional medical advice.
  • You can read more about how epilepsy is treated here.

When should I see an epileptologist or other specialist?
  • Answer: The involvement of specialists such as neurologists and epileptologists (epilepsy specialists) may be recruited at different times in your treatment depending on your physician and the availability of specialized services in your area. If you have had trouble treating your epilepsy effectively and achieving seizure control, you may want to consult your physician about seeing a specialist. It may be helpful to specify that you want to see an epileptologist if available.

How will my epilepsy diagnosis affect my employment?
  • Answer: It can depend on different factors, such as the nature of your existing or desired employment, the nature of your seizures, and your level of seizure control. You might need accommodation in your workplace so you can continue to work, and you may need to negotiate other adjustments to your position. Regardless, in Ontario you are protected by law against discrimination in recruitment, hiring, retention, treatment, and promotion. However, your suitability for certain jobs may need to be assessed for reasons such as safety; certain career paths may no longer be open to you as well. Thoroughly understand your epilepsy and discuss your situation with your employer. For further information, you can see this page.

How does alcohol affect me if I have epilepsy?
  • Answer: Alcohol in large amounts can increase your risk of seizures both on its own and by interacting with medications. However in small and moderate amounts, alcohol has not been shown to increase the chance of seizures. In terms of other effects and if you should be consuming alcohol, it’s best to consult your primary health care provider about your individual situation. You can read more about alcohol and seizures here.

Will recreational drugs affect me differently if I have epilepsy?
  • Answer: The risks can be greatly increased, and how these risks present themselves vary depending on the drug. Some are much more directly dangerous than others, such as cocaine, which can cause particularly dangerous seizures shortly after it is taken. Other drugs such as heroin and ecstasy can cause risks more indirectly, e.g., by causing people to forget their medicine, which can then trigger their seizures.

How will epilepsy affect my child in school?
  • Answer: Most children with epilepsy do well in school and don’t have any learning problems, but challenges can occur. These can result from factors like the attitudes of others, side effects of medications, and the nature of the seizures themselves. In addition to this, you may want to create an Individual Education Plan (IEP) for your child and bring education (including an emergency plan) to the staff and faculty at the school to create awareness and increase your child’s safety. With special care and collaboration between you, your child, and the school, your child can thrive and be successful in their education. You can read more about education in children who have epilepsy here.

My child has epilepsy and I think they need special education; what can we do?
  • Answer: Recognizing that you believe your child may need special education services is a great first step. As the parent or guardian of your child, you have a major role in getting your child the education they deserve. You will want to begin by requesting that your child be reviewed by the Identification, Placement, and Review Committee (IPRC) in order to be identified as an “exceptional student”. If they are identified as such you will work together with the school to develop an Individual Education Plan (IEP) for your child that is also decided by the Special Education Advisory Committee (SEAC). If you disagree with the IPRC’s decision you may be able to appeal to the Special Education Appeal Board (SEAB). For more information on obtaining special education for your child in Ontario, please read our webpage on the topic.

I have a family member who was just diagnosed with epilepsy – what do I do?
  • Answer: It can be difficult for the entire family when someone they love is diagnosed with epilepsy. The way it affects each family member is an individual experience, and it also depends on the unique nature of the family itself. But in general, one of the most helpful things you can do is create a positive environment and have a caring, supportive attitude. You can read more about epilepsy and the family here.

Does being a female affect my experience with epilepsy?
  • Answer: Yes, it could. Women who have epilepsy have challenges that men don’t due to biological and societal factors. For instance, women experience stigma unique to their gender – marriage rates for women with epilepsy tend to be lower than men with epilepsy, and in the past women with epilepsy were not seen as appropriate mothers. In terms of biological challenges, women need to take precaution when having a child in regards to their seizure medication, which could affect the fetus negatively. Some women can also experience more seizures around their menstrual cycle. You can read more about women and epilepsy here.

Does being a male affect my experience with epilepsy?
  • Answer: Yes, it could. The different aspects of a person’s identity all contribute to their individual experience with a challenge like epilepsy. As for biology, seizures can decrease the levels of testosterone in someone’s body which can affect aspect of one’s life such as energy, mood, sexual function, reproduction/fertility, and bone density.

How can I stay safe in my home, or help keep a loved one safe in theirs?
  • Answer: There are lots of ways that you can modify your home, or the home of a loved one, to help them keep safe while still leading a full life. Generally, you could start by considering the nature of the seizures and the potential dangers in your house. There are also some safety products that you may be interested in to further enhance the safety of you or your family. You can read more about them here. Talk to your doctor about what other measures you can take to improve your safety, or that of a loved one.

How do I cope with epilepsy?
  • Answer: Being diagnosed with epilepsy can be frightening and overwhelming, especially if you don’t know much about it. Like any other life change, it’s not a quick or easy process, either. It will take some time to make adjustments to your life to fit your new needs, and get used to those things. A new diagnosis of epilepsy can affect the people around you too, and it will need some adjustment on their part as well. Having a positive attitude, a good support network, and the right knowledge can help you cope with this change in your life.

What are seizure alert dogs?
  • Answer: Seizure alert (or seizure assist) dogs are special service dogs trained to protect people who have epilepsy if they have a seizure in public. They may be capable of many things such as staying close to a person, fetching medication or a telephone, or guiding someone away from trouble. It should be noted that dogs cannot be trained to detect seizures, but some dogs may have the intuition. You can read this page for more information about seizure dogs.

Accessing help and resources in OntarioExpand Accessing help and resources in Ontario Section

I’ve been able to work until recently, but now I have to temporarily take time off because of my seizures – what can I do?
  • Answer: You may be eligible for Employment Insurance Sickness Benefits, which can offer you temporary financial aid. You can read more about it here.

I’ve been able to work previously but I can’t regularly anymore because of disability – what can I do?
  • Answer: You might qualify for the Canadian Pension Plan Disability Benefits, which is a taxable monthly payment, if you’ve contributed to the Canada Pension Plan. You could also qualify for the Ontario Disability Support Program’s income support, and the Registered Disability Savings Plan may also interest you. If applicable, you might also be able to receive tax credits on your tax returns. You can read more about those programs here.

I have epilepsy and I can work, but it’s hard to get a job and I’m financially strained – what can I do?
  • Answer: You could be eligible for Ontario Works or the Ontario Disability Support Program which can help you financially and help you get a job. You could also consider the Registered Disability Savings Plan and filing tax credits on your next tax return. You can read more about those programs here.

I’m having difficulty obtaining my medication because of costs – what can I do?
  • Answer: You could be eligible for the Ontario Drug Benefit or the Trillium Drug Program, which you can read more about on this page. However, these programs only cover drugs on a specific list called the Formulary; if your drug is not on that list, it may have to be covered through the Exceptional Access Program. If you are struggling in qualifying for these programs, or you will have difficulty waiting for approval, you can try contacting the pharmaceutical company that makes your medication for options they may be able to provide you.

I need special transportation around my community, but I’m not sure who can help me.
  • Answer: The Government has compiled a list of accessible transportation services around Ontario, which you can access here.

I need to travel far across the province to access medical care, but my funds are limited – what can I do?
  • Answer: If you are travelling from somewhere in Northern Ontario, you may qualify for the Northern Health Travel Grant Program. The program can help pay for your travel costs, including accommodation, if you meet certain criteria. There are other sources of funding you may be able to access as well, such as local church groups and even claiming travel expenses on your income taxes. If you require accommodation during your trip, you can also ask your hotel if they have a hospital/medical rate at a reduced price. For more tips and information on the Northern Health Travel Grant Program, you can check this page.

What are some services that can help my child who has epilepsy?
  • Answer: There are some government services you can access, including the Special Services at Home Program and the Assistance for Children with severe disabilities program. You can read about these programs, as well as some charitable organizations for children here.

I require an assistive device(s) but my finances are limited – what can I do?
  • Answer: You may be eligible for the Assistive Devices program which can help provide access and partial coverage for some assistive devices. You can read about the program here.

Who can help in providing care for me or someone I care about?
  • Answer: The Community Care Access Centre can help provide care for people in the home and in the community. Respite Services can also link families to respite care that can provide relief. You can read more about these programs here.

My home/vehicle needs repairs/modification to accommodate the special needs of myself/someone I care about – what can I do?
  • Answer: You might be eligible for the Home & Vehicle Modification Program – read more about it here.

I think I need some legal help, but I don’t have the funds to pay for a lawyer – what can I do?
  • Answer: The ARCH Disability Law centre may be able to help you; they are a charitable organization focused on assisting people with disabilities. You can also try looking for a community legal clinic in your area as well as consulting other agencies such as Legal Aid Ontario. You can read about ARCH here, as well as some other legal resources that can help you understand your legal rights.