Epilepsy is the most common disorder affecting the nervous system in teens. The teenage years are a unique time in one's life. Teens may be experiencing many physical and environmental changes. Many people do not know about epilepsy and there are still many misconceptions that teens have to deal with on a daily basis. It is important to remember that epilepsy is a condition, and not a defining factor of an individual. Teens with epilepsy can still have positive social relationships, fulfilling jobs, and do well in school.
The following sections are meant to provide an overview of the primary concerns teens with epilepsy may have. If you have any further questions, please visit the links provided, or contact the Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario.
▼ Drugs & AlcoholYour choice to drink alcohol or not is a personal decision. Some people with epilepsy can drink alcohol in small amounts without it causing problems. However, some people with uncontrolled epilepsy choose to not drink alcohol, because even the smallest amount may cause seizures and other problems.
Binge drinking can be dangerous. Heavy drinking may cause you to forget to take your medicine, lose sleep, and/or miss meals, which can all cause seizures.
Drinking alcohol may have an effect on your epilepsy medicine. Alcohol can make your medicine less effective. Mixing some epilepsy medicine with alcohol may cause you to 'get drunk' more easily. If you choose to drink alcohol, it is necessary that you continue to take your epilepsy medicine as prescribed.
It is most important to discuss this decision with your doctor, as he or she knows your case best. Your doctor can tell you what might happen if you mix your medicine with alcohol so that you can make an informed decision.
Mixing your epilepsy medicine with other recreational drugs might have harmful effects. Some recreational drugs can cause seizures if taken in high amounts, and withdrawal from other types, such as marijuana, may lead to seizures. It is important to consider these potential consequences before using drugs or drinking alcohol.
Taken in part from Epilepsy Matters.
If you require any more information, please call the Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario.
Having a diagnosis of epilepsy does not necessarily mean you cannot drive in Ontario. In fact, many people with epilepsy can drive legally without needing a special license.
For many people, driving provides them with independence. It allows them to freely travel wherever they please, whenever they please.
In Ontario, the Ministry of Transportation makes all decisions on the licensing of people with epilepsy based on the points below:
You can drive in Ontario if...
- You have had no seizures for the past 6 months
- An exception is if you have a seizure after your doctor has lowered your dose of medicine. In this case, once it is put back to the dose it was before you may be able to drive.
- Your medicine does not make you tired or cause poor coordination
- Your doctor believes that you have been taking your medicine regularly and that you will report any new seizures to him/her
- You have only had 1 seizure that was not related to epilepsy
- You have only had seizures while sleeping or immediately after waking up for 5 years or more
You cannot drive in Ontario if...
- You have had a seizure within the past 6 months
- You are taking epilepsy medicine that has side effects of tiredness or poor coordination
- You do not fully follow your doctor's prescribed treatment
Taken in part from the Epilepsy Support Centre.
It is important that you are honest with your doctor, and tell them about any seizures that you have had. Your doctor is responsible by law to report any of your seizures to the Ministry of Transportation. However, your doctor will also work with you to get your license back when the time comes.
More information about what happens when your license is taken away, and how to get your license back can be found in the following document from Epilepsy Toronto.
Driving regulations may be different in each province/territory. Please contact your own province's Ministry of Transportation for more information. If you require any more information, please call the Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario.
Just because you have seizures doesn't mean that you can't have a job. Working can be important for developing responsibility, self-esteem, and to allow you to earn money, providing you with increased independence.
People with epilepsy often have many questions when it comes to employment, such as:
- When should I tell my boss about my epilepsy?
- What if I have a seizure at work?
- What if I feel I didn't get hired because I have epilepsy?
First of all, in an interview, it is illegal for the employer to ask you if you have a medical condition. It is also illegal to treat someone unfairly because they have epilepsy. Once you begin your job, you may want to tell your boss about your seizures, especially if you are likely to have one while working. You can give your boss a brochure, or explain to your boss or co-workers what to do if you have a seizure while at work.
There are many laws in place, such as the Ontario Human Rights Code and the Employment Equity Act to protect your rights as an employee. More information on your legal rights can be found in the following document from Epilepsy Toronto.
Epilepsy Employment FactsheetTaken in part from the Epilepsy Support Centre.
If you require any more information, please call the Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario.
Many people with well-controlled epilepsy have a comfortable and satisfying sex life. However, some people with epilepsy may have sexual difficulties. These can be due to the epilepsy itself, and/or the epilepsy medicine that they are taking.
One of the most common sexual effects of epilepsy in both men and women is the decrease or loss of desire. However, not everyone may experience this. It may depend on the type of epilepsy they have. Additionally, some men with epilepsy may experience erectile dysfunction. Some people are afraid that having sex will trigger a seizure, but this is very rare.
Certain types of epilepsy medicine may also affect your sex life. Some drugs can cause physical changes and may affect your appearance. Finding the right balance of seizure control and side-effect reduction can be challenging. Stopping medicine due to frustrating side effects might seem like a good solution at the time, but this might cause you to have more seizures. It is important to tell your doctors about the side effects you are having, as they may be able to help you to find a solution.
Telling your partner that you have epilepsy can be very difficult. It may be less stressful to share this information early on in a relationship. It is important to remember that epilepsy is not the most important fact about any person. For more information about disclosure, please visit the 'Disclosure' tab.
There are many issues related to epilepsy that are specific to women. Women may find that their seizure pattern changes when they hit puberty. Some young women may experience their first seizures within months of the time that they begin to get their period. Hormone levels change with periods, pregnancy, and throughout menopause. These changes can affect when and how often a woman has seizures; they have also been known to affect when a woman stops having seizures.
For more information about Birth Control and Pregnancy, please visit the 'Women' tab.
Taken in part from Epilepsy Matters.
The following document provides information for parents and families with a child who has epilepsy.
http://www.epilepsytoronto.org/pub/pdf/factsheets/EFS-childrenandfamilies.pdfIf you require any more information, please call the Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario.
Some teens struggle with taking their epilepsy medicine as prescribed by their doctor. Not taking epilepsy medicine can result in having more seizures, which may lead to more doctor's appointments, losing your license, and missing school and social events. It also increases the risk of sudden unexpected death from epilepsy, most commonly called SUDEP.
Some reasons why teens do not take their epilepsy medicine are:
- Forgetfulness. This is the main reason. Teens may forget to bring their epilepsy medicine with them, or might not fill their prescriptions on time. Some helpful tips are to use a pillbox and put a reminder on a calendar or phone.
- Denial. Teens may not be ready to accept that they have epilepsy.
- Wanting to fit in. Having to take epilepsy medicine might make a teen with epilepsy feel different from their friends.
- Fear of side effects. Some people experience side effects such as headaches, weight gain, tiredness, or acne.
Having these feelings is normal. Taking epilepsy medicine may be frustrating at times, and challenging to remember, but the benefits are worthwhile! Epilepsy medicine allows most people to control their seizures, which promotes freedom and independence. Although epilepsy is very unpredictable, taking your epilepsy medicine is something you can control. Your doctor is also a great resource to address any of your concerns, and look at other options.
If you require any more information, please call the Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario.
Not all teens with epilepsy have trouble with school, but it is more common for teens with epilepsy to have learning problems, such as ADHD. Teens with epilepsy may struggle with concentration, memory, or attention to name a few. There are several reasons why someone with epilepsy might face challenges with education, such as:
- Parents or teachers may have lower expectations for a teen who has epilepsy
- Absence seizures may disrupt learning by causing a child to miss important parts of the lesson
- Side effects of epilepsy medicine (ex. hyperactivity, tiredness)
- Side effects of the seizures themselves, which may include memory problems
- Poor school attendance due to missing class following seizures and/or medical appointments
There are other factors in the school setting that may affect learning. Teens often feel a lot of pressure to fit in and be accepted by their peers. People with epilepsy may be scared of having a seizure at school because they may feel embarrassed or worry that their friends may treat them differently.
Teachers can also play a role in making a teen's school experience positive or negative. They have the ability to make the classroom a safe environment, and with permission, can help educate the students on epilepsy. In contrast, some teachers, who do not understand the condition, might treat a student with epilepsy differently because of their diagnosis. If you are experiencing any form of discrimination at school you are encouraged to speak to your administration, such as a principal, or seek guidance from the Epilepsy Resource Centre.
If you have epilepsy and are struggling in class, there are programs available to help you succeed. Options for extra help can be found at the following link to Epilepsy Ontario:
http://epilepsyontario.org/special-education-in-ontario/.
Most importantly, remember that having epilepsy does not mean you will not perform as well in school as your peers. Many people do not face the challenges presented above, and for those that do, there is support to help them overcome these obstacles.
Having epilepsy should not get in the way of your ability to enjoy a wide range of activities. Physical activity and recreation have many benefits, such as increasing self-confidence and providing an opportunity to be social. People with epilepsy may experience fewer seizures if they lead an active life.
If you have uncontrolled seizures, here are some suggestions to help you have a safe and enjoyable time while participating in sports or physical activities.
General Safety:
- Check with your doctor when starting a new exercise program
- Always take your epilepsy medicine as prescribed
- Always wear your medical alert bracelet
- Contact sports and activities like boxing, bungee jumping, and scuba diving are not safe and should be avoided.
- Avoid sports like rock climbing or mountain climbing
- If walking or jogging, inform family or friends of your route and how long you will be gone.
If your seizures aren't controlled, the following activities may be very risky. Speak with your doctor before engaging in them:
- Motor sports
- Horseback riding
- Gymnastics
- Skiing
- Certain water sports
Water Safety
Water activities can be very dangerous for someone with epilepsy. It is important that they take the appropriate precautions.
Water Safety Tips:
- Never swim alone
- Swim with a person who knows you have epilepsy
- The swimmer accompanying you should be physically strong enough to keep you above water and should know how to respond if you have a seizure
- Tell the lifeguard that you have epilepsy and be ready to brief them on first aid procedures
- Consider wearing a lifejacket in the water
Team Sports Inform your coach and teammates if you experience uncontrolled seizures and instruct them on how to respond. They can help keep you safe during a seizure and avoid unnecessary calls for an ambulance. Remember to pace yourself and wear protective gear appropriate to your sport.
Taken in part from the Epilepsy Support Centre.
The teenage years are a stressful time for everyone. Teens experience pressure at school and in their peer groups, and often have busy schedules. They may be expected to go to school, work part-time jobs, and still make time to hang out with their friends. On top of these, teens with epilepsy have other stressors in their lives, including concerns about having seizures and coping with people who do not understand or respect their condition. Stress is often a trigger for having seizures. It can also influence sleep and eating patterns, which may make someone more likely to have a seizure.
A higher percentage of teens with epilepsy suffer from a mental illness than the general population. Anxiety and depression are two of the most common mental health problems. Teens with epilepsy may be treated negatively or unfairly by people in their community. The reactions or expected reactions of others may influence a person's mental health. Not knowing when seizures are going to happen and feeling out of control adds stress. One reason why someone might develop a mental health problem is when stressors like these become too much for them to handle.
Depression is the most common mental health problem in people with epilepsy. As many as one in every two kids with epilepsy might have a time when they are depressed. Depression is a state of sadness or gloom that gets in the way of a person's social life or daily activities, like school. When sadness lasts a long time and the person does not enjoy life as much, they may have depression. People with depression often have changes in their appetite, sleep schedules, and trouble concentrating. Depression may be affected by many factors, such as:
- Seizure-Related Factors
- The type of seizure
- Where the seizure starts in the brain
- A change of mood or behaviour is common in the period before and/or after a seizure occurs
- Depression may occur as part of an "aura" before a seizure
- Emotional Factors
- Discrimination and stigma in society
- Lack of social support
- Lifestyle changes: suspended driver's license, unable to work certain jobs
- Sexual dysfunction
- Side-effects of epilepsy medicine
Taken in part from The Epilepsy Support Centre.
Anxiety is a feeling of nervousness or worry. You might feel a sense of panic and notice changes like your heart beating faster. Some people may have anxiety disorders, in which they have constant or extreme feelings of nervousness that interfere with daily life. There are different types of anxiety disorders, and each may look slightly different. Many possible causes of anxiety exist that may or may not be related to epilepsy.
If you are experiencing symptoms of depression, anxiety, or other changes in your mood or personality, you are encouraged to seek help. These feelings may not go away on their own, and there are several tips and treatment options that your doctor can discuss with you.
If you are having severe feelings of depression, anxiety, or are feeling suicidal, please contact:
Frontenac Community Mental Health Crisis Services:613-544-4229
1-866-616-6005 (toll free for area codes 613 & 705)
7 days a week/24 hours a day
Child, Youth & Family Crisis Line for Southeastern Ontario:
Long distance toll-free: 1-877-377-7775
Good 2 Talk (Post-Secondary Student Helpline):
1-866-925-5454
Sleep and epilepsy influence each other. People may have seizures at night, causing them to not sleep well. Not sleeping well may result in more seizures. Teens often stay up late, and then are forced to get up early for school, not having time to sleep a healthy amount. Certain types of epilepsy may be more affected by sleep than others. Avoiding stress and stimulants, like coffee before going to bed can help. It is also helpful to be relatively consistent with when you go to bed and get up. It is important to not cut back on sleep to make time for the busy lives of teens.
Good medical care is based on a partnership between the doctor, patient, and family. Teens may be transitioned from pediatric (child) to adult care. This might involve taking greater responsibility for your care, and increasing knowledge on your condition. When you have questions about epilepsy and how it's being treated, write them down in a list as you think of them and bring them to your next appointment. If there isn't time to go through all your questions, make another appointment. If seizures or epilepsy medicine side effects have occurred, or if other things have happened or have changed since your last visit, tell your doctor about them. If the treatment isn't working, tell your doctor that. Make it clear to your doctor what is important to you and what concerns you have. It's important for your doctor to know about any "black-outs", spells, auras or small seizures that you have experienced.
Taken in part from Epilepsy Matters.
There is no right or wrong answer for when you should tell someone that you have epilepsy. Many people do not know about epilepsy or might have the wrong information. This might result in feelings of fear and people with epilepsy being treated unfairly. These reasons may make it scary to tell someone you have epilepsy for the first time. But, telling people about your health condition, and educating them about epilepsy may create a positive environment. Teaching people about how to respond to a seizure can reduce their worries and create a safer environment for you, because more people will know what to do if you have a seizure.
Telling your friends you have epilepsy is often a big concern, especially because fitting in is important for teens. In fact, fear of being treated differently, is one of the main reasons for not telling others. However, you might find that people respond positively, and can provide feelings of reassurance. Keeping your epilepsy a secret can also be stressful, and may cause you to withdraw from your friends. Telling an intimate partner that you have epilepsy is another major concern, but he or she might be a good source of support. Telling your teachers about epilepsy can help promote success in school. There are many personal factors to consider in determining who to tell, including who will likely be with you when you have a seizure. The Epilepsy Resource Centre can provide guidance on how to talk about your epilepsy. They can also help educate your classmates by making presentations in your school.
Disclaimer: The purpose of this section is to provide research-based information on issues related to epilepsy and epilepsy management. However, it is not meant to provide medical advice and should not be used to guide any health related decisions. Before engaging in any activities that may provoke seizures or affect your epilepsy medication it is important to talk to a doctor.