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Growing Up With Epilepsy: A Guide for Teenagers
©1993 Ciba-Geigy Corporation
Epilepsy does not have to limit your potential in life. Many famous people, people who changed the course of history, had epilepsy. Napoleon and Tchaikovsky are just two examples of men who achieved greatness, even though they had epilepsy.
With the help of modern medicines, many people with epilepsy are able to get good educations, hold down rewarding jobs, and live satisfying lives. The chances are very good that you can, too.
WHAT IS EPILEPSY, ANYWAY?
As an aid to understanding what epilepsy is, it helps to think of the brain as a sort of computer. Like the parts of a computer, brain cells are connected to one another and communicate through tiny electrical impulses. Sometimes, however, there is electrical activity in the brain that is not quite normal; the visible, physical result is a seizure. When this happens to someone over and over again, that person is said to have epilepsy or a seizure disorder. A seizure then is a temporary situation, a short period when the brain is "taken over" by strong, rapid bursts of electrical activity.
If the electrical disturbance affects only part of the brain, then the result is what is called a partial seizure. The most common form of a partial seizure is called complex partial seizure. Persons experiencing a complex partial seizure may become dizzy, confused, see spots, or hear ringing. They may pick at their clothing, move their arms and legs in an aimless fashion, and be unaware of their actions and surroundings. Often they cannot remember what happened when the seizure is over. This type of seizure may be mistaken for an emotional or mental problem of some kind. It is not.
Another type of partial seizure may involve that part of the brain that controls a specific set of muscles, for example, the right arm. In a seizure, the right arm might get rigid and start moving uncontrollably. But no other muscles would be affected. Sometimes the problem is in the part of the brain that controls the automatic vital functions. The result might be nausea and stomach cramps, or a change in pulse rate. It all depends on the part of the brain that is affected.
When the entire brain is affected, the result is a generalized seizure. One kind of generalized seizure is called a generalized tonic-clonic seizure; it used to be called-and often still is called-grand mal. Whatever it's called, it is the type of seizure that most people think of as epilepsy. For most people with grand mal epilepsy, a typical seizure starts when they lose consciousness and fall. Then, their muscles become rigid and their whole body begins to jerk. After two to three minutes-but what seems like much longer-the shaking movements stop. Most of the time they can get up and, after a period of rest, do what they were doing before.
Another type of generalized seizure is what is now called an absence seizure (petit mal). This seizure can be so brief that it can go undetected. People with absence seizures stare blankly ahead for a few moments, as if daydreaming, and then continue what they were doing before. There are no violent arm or leg movements. The person is, however, unconscious for a brief period of time. Absence seizures may last only a few seconds, but they may occur many times a day if left untreated.
The seizure disorders described here are the ones that are seen most often. There are other types of epilepsy. Your doctor can tell you about them.
WHAT CAUSES EPILEPSY?
We know that in epilepsy some brain cells are discharging electrical energy when they shouldn't be, but often we don't know why. There is frequently no obvious explanation as to why someone has epilepsy. It is known that epilepsy can follow a head injury or that it may be an aftereffect of a childhood disease, such as measles. Nutritional deficiencies or brain tumors (very rarely) can be the cause.
However, in most cases it is not possible to point to the cause of a seizure disorder. In this case the problem is called idiopathic epilepsy, or epilepsy of unknown cause.
WHOM SHOULD I TELL AND WHAT SHOULD I SAY?
Since epilepsy is nothing to be ashamed of, there is no reason why people whom you see often or who are important to you shouldn't know that you have a seizure disorder. Close friends and relatives, neighbors, your classmates, your teachers, your dentist, your coach, your dance instructor, etc, should all be informed. Today many people know quite a bit about epilepsy. They will understand your problem and accept you as a "person who has epilepsy." What's important is they will understand that, except for your epilepsy, you are like everyone else your age.
It is sad to say that not everyone will understand. Some people see a person with epilepsy as being different in an undesirable way. They may reject the person with epilepsy for reasons they can't or won't explain. It's their loss. Value the people who understand your situation and like you for the person you are. There are plenty of them around.
What you tell people about your particular problem, and about epilepsy in general, depends on the people with whom you are talking. You will have to use your judgment. Your parents and your doctor can help you. You can certainly learn something from talking with other people who have epilepsy and have faced the same problems. Your local epilepsy society may have a group that you can join. Or your doctor may be able to put you in touch with someone like yourself with whom you can compare notes.
At school, a responsible adult, such as a teacher or your school nurse, ought to know enough about your situation to handle any problem that may come up. Your teachers will probably appreciate sitting down with you and your parents for a discussion. The Epilepsy Foundation of America (EFA) has prepared educational materials for teachers that you might want to have with you at that time.
Friends should be aware of what epilepsy is, at least in a general way, and know what to do if they witness a seizure. Watching a seizure can be very frightening to someone who doesn't know what is happening. It's hard to tell everyone you know about epilepsy, but the more your friends and acquaintances understand about epilepsy, the less frightening it will be for them.
HOW WILL EPILEPSY AFFECT MY LIFE?
Let's face it, epilepsy will affect your life ...but not too much. As an adult, you won't be able to become an airplane pilot or work on high steel construction sites. But you will be able to go to school, including college. There's no reason why you can't be a doctor, lawyer, business manager or whatever you want to be. There's really little that you can't do. People with epilepsy can marry, have children, and lead normal lives.
Now that you're a teenager, you can be like everybody else in almost every way. You can go on dates and have fun at parties. You can go to the beach and to picnics or be with your friends ...like anyone else.
Your local epilepsy society may have a teen group where kids your age with epilepsy can get together and learn from one another. It can be a big help to hear how someone else, much like you, deals with problems of having epilepsy.
YOU CAN DO A LOT TO HELP YOURSELF
PEOPLE WITH EPILEPSY
You may be pleasantly surprised at what people with epilepsy are doing today. They're serving in Congress and working as physicists. They're climbing mountains, playing professional sports, and dancing in the ballet ...even skydiving! So there's no reason why epilepsy should stop you from leading an active life.
Some of the most famous people ever-a great general like Napoleon; great writers like Dostoyevsky, Flaubert, and Dante had epilepsy. Alfred Nobel-the Nobel prizes are given in his name-had epilepsy. So did Tchaikovsky, Van Gogh, Buddha, and St. Paul.
ABOUT YOUR MEDICATION
Your doctor has chosen the medication (or medications) you are taking based on your age, physical condition, and type of seizure disorder. It is important that you take your medicine regularly and according to the schedule your doctor has prescribed. When you were younger, your parents were in charge of giving you your medicine. But now-as part of growing up-it ought to be your responsibility.
Remember that the medicine you are taking will not cure epilepsy. But it will help eliminate seizures or reduce their number. Medication often controls or even eliminates the seizures ...for months. But again, this does not mean that the epilepsy is cured; you should not stop taking medication or cut down on the amount, even if you are free of seizures for many months. Only your doctor can decide when it's time to stop or change medication. You can help your doctor by keeping a record of any seizures you may have and by bringing that record with you when you see your doctor. That way, the doctor can decide whether you are taking the right amount of medication.
While it is important that you take your medication regularly, it's not a major problem if you miss a dose. Just make sure you take your next dose at the proper time. If you have a problem taking your medication regularly, it helps to develop a system that will help you remember the time your doses should be taken. And be sure you put the medicine where young children can't reach it!
DIET, EXERCISE, ACTIVITIES
A person with epilepsy needs the same type of well-balanced diet as everyone else. There is no special need for you to take vitamins or minerals because of your epilepsy. As for exercise, it's good for everyone. If you haven't been active, however, start slowly. And there are some kinds of physical activity that you may not want to take part in unless your seizures are well controlled.
Most doctors will allow someone whose epilepsy is under good control to go swimming in a pool or at the beach as long as another person who is a good swimmer stays nearby. Riding a bicycle should be no problem, again, if seizures are under good control. Noncontact sports, such as tennis or baseball, are probably safer activities than diving, football, or hockey. Ask your doctor before you take up any new sport.
As for other recreational activities-dancing, going to the movies, watching TV being with friends-there is no reason why someone with epilepsy cannot do exactly as he or she wants. In fact, the more a person with epilepsy participates in activities with friends, the better.
HIGH SCHOOL YEARS
Being a teenager is tough. Being a teenager with epilepsy is a little tougher, but it is something that can be worked out.
The greatest source of difficulty for most teenagers is their social life. As mentioned earlier, epilepsy is nothing to be ashamed of; you have nothing to hide. Explain your situation to people with whom you have become friendly. Most of them will probably be surprised at first. But when they come to understand your problem, they'll accept you for the person you are, someone like themselves who happens to have epilepsy.
There's no reason why your epilepsy should stop you from going on dates, going to parties, joining a club, visiting with your friends, participating in most sports and just having a good time. But don't overdo things. Many people with epilepsy tend to have seizures when they are overtired or after sleeping poorly.
Almost everybody drives nowadays. In some places there's no other way to get around. And if your seizures are under complete control, you can drive. Every state now grants drivers' licenses to people with epilepsy. But you must be seizure free for a period of time that varies from state to state. In most states, it will be necessary for you to have your physician certify that you have been seizure-free for at least 1 to 2 years. And, of course, you must pass the usual driving test.
GOING TO COLLEGE, GETTING A JOB
Most people with epilepsy are perfectly capable of going to college and earning degrees. Assuming you satisfy the school's other requirements, there should be no problem when it comes to being accepted in the college or university. You will have to let the institution's administrator know that you have epilepsy, and it might be best to have a letter from your doctor describing your medical history and the medication you are taking.
Your best bet before setting out to look for a job is to think very seriously about what you would like to do and can do, considering whether or not your seizures are well controlled. There are groups whose job it is to help people with epilepsy find employment.
The place to go for just about everything you'll need to know about finding a job is your local epilepsy society. Their counselors will direct you to the local, state, and federal agencies that can help you.
The first thing you ought to know is that epilepsy itself has no effect on a person's sexual capabilities. Nor is there any reason why people with epilepsy can't use birth control pills. If you have any questions, speak with your doctor. Don't be shy, he's heard everything you're likely to ask him more than once before.
People with epilepsy wonder if anyone "normal" will marry them. All kinds of questions come up, especially whether or not the other person should be told. The answer is yes. This does not mean that you ought to start telling someone who is a casual date about your condition. But when a relationship begins to get serious, it's time to be completely honest.
What about children? Are they likely to have epilepsy? The chances are small that your children will have seizure disorders unless both parents come from families with strong histories of epilepsy. It is recommended, however, that anyone with epilepsy consult their physician before having children.
HELPING OTHERS TO UNDERSTAND
As mentioned earlier, epilepsy is nothing to be ashamed of. There is nothing to hide. Unfortunately, however, some people still see epilepsy as something very strange and different and may be uncomfortable around an individual with epilepsy. You can help change people's mistaken notions about epilepsy. If you can make just one other person understand that people with epilepsy are really like everyone else, then you'll be making life a little better for everyone with epilepsy.
You owe it to yourself and to everyone else with epilepsy to speak out. Every little bit helps.
MANY PEOPLE CARE ABOUT YOU
Epilepsy is no fun, but it isn't the end of the world either. There are a lot of people on your side. Your doctor is the one to talk with about your medical condition. But when it comes to counseling on schooling, jobs, your legal rights, getting a driver's license ...all the things that make a life ...you should contact your local epilepsy society. If there is no chapter near you, write to the Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. They offer valuable information and can tell you where and how to take advantage of the many resources that are available to help you make your own way in the world.
YOU AND YOUR PHYSICIAN
QUESTIONS YOU WANT TO ASK YOUR DOCTOR
Write down questions for your doctor to answer. Don't be shy. Write the questions when you think of them. Do it now, if a question comes to mind!
YOUR PHYSICIAN'S INSTRUCTIONS
Once you leave your doctor's office, you may not remember everything he or she said. Because it is so important that you follow your doctor's directions, it may help to take notes. [Bring paper and be prepared to take notes.]
For more information, call the Epilepsy Foundation, Information Service, at 1-800-EFA-1000.
This information was prepared as a service to people with epilepsy by Ciba-Geigy Corporation, Pharmaceuticals Division.
1993 © Ciba-Geigy Corporation.