What is epilepsy?

If the doctor says you have epilepsy and recommends treatment, that probably means that you have had more than one seizure and you are likely to have others if something isn't done to stop them. (Some people call them fits, spells, or convulsions.) Your seizures happened because of little bursts of uncontrolled electricity in your brain. This electricity made your body feel different, or made it do things that you couldn't control. If just a part of your body, like an arm or a leg, was moving on its own, that means that the electric signal only reached part of your brain. If the signal went through all of your brain, you probably shook all over or you may have been unconscious for a short time—a few seconds or perhaps several minutes or so.

Why do I have epilepsy?

Most of the time, it's hard to be sure why people get epilepsy. Sometimes it starts after a serious head injury or illness that affects the brain. Some kinds tend to run in families, so you might have inherited a tendency to get it. Usually we just don't know.

Can other people catch epilepsy from me?

Epilepsy is something that only happens inside your brain and nobody else can catch it. There are no epilepsy germs. If someone else in your family has it, it might be because genes are involved in the kind of epilepsy you have, but neither of you caught it from the other person. If you have children later, the chances are good that they will not have epilepsy.

Can I die from epilepsy?

Death during a seizure is fortunately rare for a person who is healthy in other ways. You should be a bit more careful about doing things that could be extra dangerous if you had a seizure. Accidents like drowning or falling from high places during a seizure are more likely to hurt you than the seizure itself.

Your friends and family can help to protect you during seizures by doing things like moving dangerous objects out of your way and turning you onto one side so you won't breathe in vomit or other fluids. They can get more tips from the First Aid section of this site.

So what do I do now?

About two-thirds of people who have epilepsy won't have any more seizures as long as they take the right kind of medicine. Just one or two pills a day might be all you need to stop the seizures from happening. Or you might need to take more pills or more than one kind of pill, and even so you still may have some seizures. If your medicine doesn't stop all your seizures, at least it will probably help you not to have so many, or to have smaller ones.

The thing that's really important for you to remember is that you have to take your pills just as often as your doctor says you should. No days off! Picture the medicine putting the seizures to sleep inside your brain. The seizures are still there, so if you don't take your medicine, they can wake up. Even if you don't have any seizures for a long time, there's a good chance that you'll have seizures again if you stop taking your medicine. So don't change how much medicine you take unless the doctor says it's OK.

Will it ever go away?

Ask your doctor. For many kids with epilepsy, the seizures do go away when they get older. Other kids keep having seizures all their life. It depends on what kind of epilepsy you have. Sometimes even the doctor can't be sure. If it looks as if you might have a kind of epilepsy that goes away when you get older, the doctor may want to try cutting back on your medicine when you haven't had any seizures for a long time, to see whether they come back or not. Don't try this on your own!

Should I tell my friends about my epilepsy?

It depends on when you have seizures and how you feel about telling your friends. If you might have a seizure while you're with them, things will go better if they know what to expect and what to do. You can help them to understand that even though you have epilepsy, you're still a regular person and epilepsy is just a little part of who you are. (So don't talk about it all the time.) Maybe some of the other kids have asthma, diabetes, or some other disorder like that. Epilepsy is not much different.

Even if your seizure medicine stops all your seizures, you might find that it feels good to share information about your epilepsy with your close friends. It could be hard to keep your epilepsy a secret. Also, if your friends know about your epilepsy, they can help you avoid the unhealthy things that might cause a seizure, like forgetting your pills, drinking a lot of alcohol, or staying up all night. But whether you tell them is really up to you.

If I go on a date, do I have to tell the other person that I have epilepsy?

This is a lot like the question about whether to tell your friends. You don't have to tell everybody about your epilepsy right away if there's very little chance that you'll have a seizure. You'll want to wait for the right time. But it's usually not a good idea to wait too long, especially if you do have seizures now and then. Be honest—and tell your date about your epilepsy in person, not on the phone or by email.

Many kids with epilepsy worry that their boyfriend or girlfriend will want to break up with them because of their epilepsy. That could happen, but if you have a positive attitude when you explain it to the other person, they may be less likely to be frightened off. Remember that everybody is rejected sometimes. Usually there are lots of reasons, and not even the person dumping you may understand them all. Plenty of people will value your other qualities and accept your epilepsy as just a small part of who you are.

Can I get a driver's license if I have epilepsy?

Each state has its own laws and regulations concerning epilepsy and driving. These laws spell out the details of whether or not you can legally drive. Most states require you to be free of seizures that would interfere with driving for a certain period of time. The length of this period varies from state to state. (The Epilepsy Foundation website contains a list of the rules in each state.) In some states you will need a report from your doctor saying that it's safe for you to drive. Even if your doctor approves, however, the agency in your state that issues driver's licenses makes the final decision.

You can help yourself to get a driver's license and keep it by always taking your seizure medicines on time and by being completely honest with your doctor so that he or she knows if you are still having seizures or side effects from your medicine. The most frequent reason why people have a seizure after they've been seizure-free for a while is that they forget to take their medicine. Don't let this happen to you!

A lot of my friends drink alcohol. Will I have a seizure if I drink?

Alcohol can cause seizures under certain conditions. Having just one or two drinks now and then probably will not make you have more seizures. Of course if the police find alcohol in your blood they can take away your driver's license or charge you with underage drinking. If you are around people who are drinking a lot, it may be hard to stop at just one or two. It's better to avoid alcohol altogether. If your friends know about your epilepsy, they should understand. Good friends will want to help you. You can have lots of fun without drinking.

How about drugs?

There hasn't been enough research about the effects of most other kinds of drugs to be able to say whether they will directly cause seizures in people with epilepsy. We do know that cocaine can cause seizures and even death in people who have never had seizures before. It's also a good bet that if you're using any kind of illegal drugs, you'll probably forget your seizure medicine or not sleep enough. We do know that both of these things will cause more seizures. So be smart. Stay away from drugs.

At least smoking won't make my seizures worse—right?

For most people, that's right. The nicotine in cigarettes won't make you have more seizures. It might affect the amount of seizure medicine in your blood, so you would have to take more. And even if you overlook all the other health problems from smoking, here's one you may not have thought about: If you have any kind of seizure (even absence) while you're smoking, you could easily drop your cigarette and start a fire that would badly injure you and perhaps other people too. Is it worth it?

I have a job after school. Do I have to tell my boss about my epilepsy? Can my boss fire me if I have a seizure at work?

You are not required by law to tell your employer that you have epilepsy unless your job description includes activities that are dangerous or illegal for you (such as climbing ladders or driving). But if there's any chance that you could have a seizure at work—especially if that would be a danger to you or somebody else—then you should tell. For instance, it would be unsafe for you to have a seizure while operating a deep fat fryer or while working as a lifeguard.
 

As long as your seizures do not threaten other people's safety and you are able to perform the basic duties of the job, your boss probably cannot fire you because of a seizure. You may even be protected by laws that require your employer to make "reasonable accommodations" that will help you to work more safely. These could be things like carpeting a concrete floor or redistributing job duties so that another worker does something that might be dangerous for you to do. These laws are complicated, however. If you think you are being treated unfairly, look in the Links section for agencies that can help with careers and employment.

My parents think that most of the sports things my friends do are too dangerous for me. Are they?

Ever since you first crawled toward the stairs, your parents have worried about protecting you from injury. Chances are that your epilepsy has made them even more protective. It can be hard for them to let you make decisions about your own activities now that you're older. They know that most kids underestimate the chances of getting hurt when they do something dangerous -- and there are real dangers in activities like bike-riding, skateboarding, swimming, and so on. If you want your parents to allow you to do these things, you'll need to show them that you will do them in the least risky way possible. That means wearing the right kind of protective equipment, not going out in traffic, and never doing water sports without a responsible adult watching closely. If you have a warning (an aura) before your seizures, take advantage of it and get into a safe place.

Sports like soccer, basketball, and even football are OK for most kids with epilepsy, except perhaps those with very frequent seizures. The bathroom is a more dangerous place than the soccer field! The advantages of being on a team generally outweigh the slight chance of injury. But activities where you could have a bad fall during a seizure, like horseback riding, high diving, or some kinds of gymnastics, are safe only if your seizures are very well controlled or very mild.

Your doctor might be able to help you persuade your parents to let you participate in more sports, but some doctors are pretty conservative. Suggest that your parents get information on sports from the Epilepsy Foundation, other reputable websites (see Links), or from parents of other kids with epilepsy who have played the sport before.

Somebody told me that I could have a seizure from playing video games. Is that true?

It's not very likely. About 3% of people with epilepsy will have a seizure if they are exposed to flashing or flickering lights. If you have this kind of epilepsy, video games may cause you to have a seizure. So can flashing lights at dances or some movies. But if you have not had any seizures in these situations, then video games are probably OK for you. Seizures caused by flashing lights occur at the time of the stimulation. A seizure occuring minutes or hours after playing a video game can not be attributed to the video game itself. Just be careful not to get too stressed, lose sleep, or breath too quickly or deeply when you're playing. Those things can also increase the chance of a seizure.

My seizure medicine seems to be making me so sleepy that I can't pay attention in class or finish my homework. What should I do?

First, tell your doctor that you're having a problem with sleepiness. A change in the kind of medicine you take, the amount you take, or even the time of day when you take the pills might improve the situation. Also make sure that you're getting enough sleep. Doctors have found that teenagers need more sleep than adults but very few get enough. This can be a real problem if you have to leave for school very early in the morning. If adjusting your medication and going to bed earlier don't make you feel more alert, this may be a good reason to tell your teachers about your epilepsy and explain to them that sleepiness is a common side effect of your medication. They may be able to make some adjustments that will help you succeed. Your doctor also may refer you to a sleep specialist.

 

Authored by: Gregory L. Holmes, MD
Reviewed by: Joseph I. Sirven, MD | Patricia O. Shafer, RN, MN on 10/2006
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