Epilepsy Foundation of Minnesota

Dealing with epilepsy is a challenge -- for teens with the condition and their friends.

Being a teenager is an adventure. From driving to dating, sports to activities, homework to your first job, teenagers face big challenges. Teens who have epilepsy (also known as seizure disorders) face other big challenges too--such as explaining seizures to other people; wondering how their friends are going to react; and never knowing when the next seizure's going to happen.

A big challenge is the fact that other teens may not know much about epilepsy. Nobody wants to be different, but sometimes there are differences that affect people's lives -- and people just have to deal with it.

Seizures and You: Take Charge of the Facts

Seizures and You: Take Charge of the Facts is an epilepsy awareness program targeting teenagers in middle and high school. The program is designed to take place in one 45-minute class period. Seizures and You: Take Charge of the Facts is designed to educate teens, dispel myths and reduce the perceived stigma associated with epilepsy.

Schedule a FREE Seizures & You:

Take Charge of the Facts presentation for your school by calling 1.800.779.0777 ext. 2310 651.287.2310

Link here to our national website
for more information,
videos and chat groups just for teens.

What is Epilepsy?

	Why did epilepsy happen to me? That’s hard to say. Often, the doctors can’t come up with a reason. Some things that can lead to epilepsy are: problems in development before birth, severe infections that involve the brain, a severe head injury, certain genetic factors. But that doesn’t mean that your epilepsy was caused by any of these things.

	Will I always have it? That depends. Some people find that seizures go into remission after a few years. Others will continue to have seizures unless they take meds to prevent them.

	Is there a cure for epilepsy? Not yet. Medications don’t cure epilepsy the way an antibiotic can cure an infection. They only work if they’re taken regularly. That doesn’t mean you’ll have to take them for the rest of your life. After a while you and your doctor may decide that slowly discontinuing your meds is worth a try. But that’s something only your doctor can advise you about. Never stop meds on your own - You'd risk a bad seizure.

	I take epilepsy meds and others, too. Sometimes it's hard to remember what I've taken. Time to get organized. That's your best bet to keep track of medication. You could get a watch or a pillbox, or even a PDA with an alarm and set it for each time you have to take a pill.

	Is there any other way to treat epilepsy? Surgery to remove a small area of the brain may work for some people. Brain stimulation via a large nerve in your neck (vagus nerve stimulation, or VNS, therapy) may help. There's also a diet (lots of fat, hardly any carbs--forget the pizza and the bread--and no sugar) that helps little kids with seizures. But it's not a do-it-yourself diet. It's called the ketogenic diet. It's serious medicine and you have to be really disciplined to make it work.

Day-to-Day Living

	There’s alcohol and sometimes drugs at parties. It makes me feel really different to always say no. How would they affect my seizures? Using either is a real risk, because drugs are against the law and using alcohol -- if you are a minor -- is also illegal. You could get caught. You don’t want that kind of trouble. Besides, mixing street drugs with epilepsy meds is even riskier. Some illegal drugs -- cocaine, for example -- can cause seizures in people who don’t even have epilepsy. Other illegal substances, like pot, may contain all kinds of additives that could be harmful to you. As for alcohol, it’s unlikely to cause a seizure immediately, but it may the following day. Remember, just one seizure can set you back on qualifying for a driver’s license.

	Will I be able to go to college? Get a job? Yes, to both. If your high school grades are good enough to get you into college if you didn’t have epilepsy, there’s no reason to think that having epilepsy would be a barrier. Sometimes, the meds might affect how quickly you can complete tests and similar projects. In most cases, you should be able to work with the college administration to take a lighter credit load and even have extra time to complete your work. The key to getting a job is to have marketable skills and some work experience. Try building a resume with part time jobs while you’re still in high school and at college, or do some volunteering or community service. Sometimes volunteer jobs can become permanent ones.

	My parents don’t want me to play sports. They think it’ll make the seizures worse. But I really want to. How can I make them see how important this is to me? Have you tried raising this question with your doctor? He or she could be a good ally -- depending on the sport and how your seizures affect you. Most teens with epilepsy should be able to run track and play basketball or tennis or other sports with no problems. Swimming alone is not a good idea, at any time for anyone. Swimming with others who know you have epilepsy and are good enough swimmers to help you if you should have a seizure is a better plan. Protective helmets can reduce the risk of head injury from cycling, baseball and football, although not completely. Helping parents let go is never easy, and it’s especially tough when a teenager has a medical problem. Perhaps you can convince them to let you try and see how things go.

	Ever since I started having seizures I’ve felt very down and sad. I worry all the time about having seizures. Nothing seems like fun any more. Could the seizures be doing that, or is it just because I hate having epilepsy? It could be a combination of both. It could also be the medicines. Tell your parents how you’re feeling and see if you can get an appointment with your doctor to find out what is causing you to feel this way. A change in medicine might help. Depression and anxiety are not things to ignore. They can be treated successfully.

	I think I’m more likely to have seizures when I’m really stressed or tired. Is that possible? Yes, being under stress or not getting enough sleep can trigger seizures in some people. All nighters are not a good idea when you have epilepsy. That doesn’t mean you have to nap all the time, just get an average amount of sleep to feel rested.

	Someone told me flashing lights or even video games can cause seizures. Is that right? I really like the games, and I’ve never had a seizure when playing them. What’s the story? Some people are what’s called photosensitive, which means they may have seizures if a light flashing at a certain rate is shined in their eyes or they look at flashing images of light and dark. If you’ve had an EEG test, they probably did a photosensitivity test as well, using a light, to see if your EEG would respond. If you didn’t have a seizure, or there were no telltale signs on your EEG, then flashing lights or flashing video game images may not be a problem for you.

Special Concerns for Teenage Girls

The nurse who helps me with my epilepsy medication told me recently I was "going into puberty" and might "outgrow my dose." What does that mean?
Puberty is the time when your body changes and you grow from a child into an adult. You get taller and weigh more, and you start to grow breasts and body hair. Some of these physical changes happen quickly and the dose of seizure medicine that worked before is not enough for your new body size. Your doctor may order more frequent lab tests to check the level of medication in your blood, to be sure that you are taking enough medicine to keep your seizures controlled.

I've had "petit mal" seizures since I was in first grade. My doctor said I would probably outgrow them when I was a teenager. Is that true?
There are certain kinds of seizures that are almost always outgrown in teenage years. Petit mal seizures (also known as "childhood absence") are an example. You and your doctor will decide with your parents when it is safe to stop your medication. This doesn't always work and you may still have seizures. Then you need to keep taking your medicine.

My friend takes a different medication for her seizures. Which is the best one?
There are many good medications for seizures, and some work for one type of seizure better than they do for other types of seizures. You and your doctor choose your medication by the pattern of your EEG and how the medicine affects you. You need to let him or her know if you are still having seizures or if you feel bad or funny when you take your medicine.

I've started to have monthly periods and I've heard this will make my seizures worse. Is that true?
There's no way to tell if your seizures will change when you start your period. Usually, there is no change in seizure pattern. However, some girls and women have more seizures just before or at the beginning of their periods. Although we don't completely understand the cause, it seems to be related to hormonal changes. If you notice that your seizures seem worse around the time of your periods, talk to your doctor. It is a good idea to keep a calendar and mark in it when you get your period and when you have your seizures. You should bring this with you when you go to your doctor's visit and show it to the doctor or nurse.

I'm scared my friends will find out about my seizures, and will make fun of me. What should I do?
It's up to you who you tell about your epilepsy, but it is sometimes hard to keep secrets from your best friends or people you spend a lot of time with. Most of your friends will be all right with it. It may help to talk this over with your parents or another adult you trust and get their help in making the decision.

I have a boyfriend. What if I have a seizure when we are together?
It's normal for you to worry about this. He may be one of the people you tell about your seizure disorder, so there won't be any unexpected surprises. If your boyfriend knows what to expect, he will be able to help and support you if a seizure does occur. Perhaps one of your parents, or a nurse or a doctor can help you explain the facts about seizures to your friends.

My parents worry about me and won't let me do stuff with my friends. How can I get them to let me be more independent?
Your parents love you and just want to keep you from getting hurt. Unfortunately, sometimes it feels like they treat you like a child. It may be helpful to have your nurse or doctor talk to them about letting you do things. You might have to take some extra precautions. Think through the activities you want to do, and be sure you would not be badly hurt if you had a seizure. For example, if you go swimming or diving, you'll want to make sure that someone is with you who knows what to do if you have a seizure. If you are going skiing, you probably want to ride the chair lift with someone who knows what to do. Practice your negotiating skills to find a plan that is comfortable for both you and your parents.

My parents are always lecturing me about drinking and doing drugs. Everybody else does it. Why can't I?
Drinking alcohol when you are underage, or using illegal drugs at any age, is not good for anyone. If you have epilepsy, these alcohol and drugs may increase the risk of your having seizures. Or they may cause you to have bad effects from your medication. It's your decision to make, but weigh the risks against doing these things just because everyone else does.

Can I get a driver's license if I have seizures?
That depends on several things. The laws are different from state to state, but in most places if your seizures are well controlled and you are dependable about taking your medication, you can drive a car. Some states make you wait six months to a year after having a seizure before you can drive. Driving is a serious privilege, involving your safety and that of other people. If seizures keep you from getting a driver's license, be creative about finding other ways of getting around, like public transportation or sharing rides with friends. For more information on laws in your state, please refer to our state-by-state guide to driving laws.

My boyfriend and I are really in love. Can we get married if I have epilepsy?
Yes. Most people with seizures fall in love and marry just like anyone else. If you are serious about your relationship there are important issues for all young couples to consider. You need to understand the facts about your bodies and your sexuality. Get information about sexually transmitted diseases, and if you are sexually active make sure you understand birth control options and safe sex.

Will I be able to have children?
Yes. Women with epilepsy get pregnant and most of them have normal, healthy babies. There are concerns related to seizures, certain medications and a specific vitamin supplement called folic acid that are important to discuss with your doctor before you become pregnant. (If you are not taking folic acid, you should ask your doctor or nurse about it.) Having children is an important decision for any couple, and it requires planning and commitment. There may be some special adjustments if you have epilepsy, but there is no reason you can't be a successful parent.

I hate my seizures and having to take medication. Sometimes, I go to my room and just explode.
Everyone with epilepsy feels angry and sad at times. Those feelings are normal. If you start to feel hopeless or overwhelmed, talk to your parents or some adult you trust, and get some help. Some people may need counseling to talk about their feelings, and learn ways to deal with stress. Don't ever be ashamed to ask for help. You're worth it. You can also talk to others who deal with some of the same things you do if you log onto the Epilepsy Foundation's Teen Chat Interest Group.