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Seizures in the Teen Years Seizures in the Teen Years
Seizures in the Teen YearsSeizures in the Teen Years
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About the Epilepsy Foundation
The Foundation’s mission is to ensure that people with
epilepsy have access to all life experiences and to prevent,
control and cure epilepsy through research, education,
advocacy and services.
The Foundation offers information and assistance to
people of all ages who are living with epilepsy, and their
families, through its Epilepsy Resource Center.
The Epilepsy Foundation’s H.O.P.E. (Helping Other People
with Epilepsy) Mentoring Program offers mentoring and
presentations on epilepsy to individuals, families and in
community living settings.
To find out more about the H.O.P.E. Mentoring Program or
the name of a participating Epilepsy Foundation near you,
call 1-877-467-3496, or visit www.epilepsyfoundation.org
This pamphlet provides general information about epilepsy to the
public. It is not medical advice. People with epilepsy should not
make changes in treatment or activities based on this information
without first consulting a physician.
© 2008, 2010 Epilepsy Foundation of America, Inc.
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Thirteen-year-old Maryhas staring spellscalled absenceseizures. She some-times has musclejerks of the arms,called myoclonicseizures. The episodescome on abruptly andwithout warning. Atfirst, her parents wereunsure what exactlythis behavior was,and thought she wasjust acting out. Butafter tests a differentdiagnosis was made:Mary was havingseizures because shehad epilepsy.
Teenagersand SeizuresBeing a teenager is an adventure. From driving todating, sports to activities, homework to that first job, teenagers face big challenges.
Teens who have epilepsy (also known as seizuredisorders) face other big challenges, too. Likeexplaining seizures to other people. Wondering how their friends are going to react. Never knowingwhen the next seizure’s going to happen.
A big challenge is the fact that other teens may not know much about epilepsy. Seizures can lookstrange sometimes—and that can be a problem, too.
Nobody wants to be different, but sometimes thereare differences that affect people’s lives—and peoplejust have to deal with it.
Dealing with epilepsy is a challenge—for teens withthe condition and their friends. Answering some ofthe questions that teens have is what this pamphlet is all about. We hope it helps.
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Tell Us WhyQ. Why did epilepsy happen to me?
That’s hard to say. Often, the doctors can’tcome up with a reason. Some things that can lead to epilepsy are: problems in devel-opment before birth, severe infections thatinvolve the brain, a severe head injury,certain genetic factors. But that doesn’t mean that your epilepsy was caused by anyof these things.
Q. 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 unlessthey take meds to prevent them.
FAST FACTS ABOUT EPILEPSY AND TEENS• One in 100 teenagers has epilepsy (a seizure
disorder).• It’s a condition in the brain that sometimes
makes people have seizures.• Anyone, at any age, can develop epilepsy.
But it is NOT contagious. • Often, there’s no known cause.• Teens with epilepsy take medication to prevent
seizures. Some use other kinds of treatment.• Some teens have lots of seizures. Some have
very few or none at all.• Teens with epilepsy play sports, hang out
and go to regular schools. • Teens with epilepsy want to be treated just
like everyone else.2
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Q. Is there a cure for epilepsy?
Not yet. Medications don’t cure epilepsy theway an antibiotic can cure an infection. Theyonly work if they’re taken regularly. That does-n’t mean you’ll have to take them for the restof your life. After a while you and your doctormay decide that slowly discontinuing yourmeds is worth a try. But that’s something onlyyour doctor can advise you about.
NEVER STOP MEDS ON YOUR OWN. YOU’D RISK A BAD SEIZURE.
Q. I take epilepsy meds and others, too. Some -times it’s hard to remember what I’ve taken.
Time to get organized. That’s your best bet tokeep track of medication. You could get a watchor a pillbox, or even a PDA with an alarm andset it for each time you have to take a pill.
FAST FACTS ABOUT SEIZURES • Seizures can make you stop and stare.• Seizures can make you wander around
as if you were totally out of it.• Seizures can make your muscles jerk.• Seizures can make you fall suddenly
to the ground. • Seizures are usually over in seconds
or minutes.• Seizures can make your arms and
legs shake.• Seizures are not likely to hurt your
brain or your intelligence.
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Q. Is there any other way to treat epilepsy?
Surgery to remove a small area of the brainmay work for some people. Brain stimulationvia a large nerve in your neck (vagus nervestimulation, or VNS, therapy) may help.
There’s also a weird diet (lots of fat, hardly anycarbs—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 theketogenic diet. It’s serious medicine and youhave to be really disciplined to make it work.
Q. I worry about having a seizure. Supposenobody knows how to help me?
You can make sure your friends know. If youhave the kind of seizure where you fall andshake, tell them to clear things out of yourway, put something soft and flat under yourhead, and turn you on your side to preventchoking. That’s pretty straightforward.
If you have the kind of seizure where youseem to be totally out of it, tell your friends to look out for you, to block the way tohazards like a busy street if that’s where youseem to be heading, to explain to otherswhat’s happening and to stay cool, and to staywith you until you’re back to normal. That’spretty straightforward, too.
Lots of people with seizures wear I.D. braceletsthat say “Epilepsy” or “Seizure Disorder.” Ithelps other people who may not know yourecognize what’s happening when you have aseizure and do the right thing for you.
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Q. I met someone I really like, but I don’t knowwhen to tell him I have epilepsy. When’s thebest time?
It depends how often you have seizures. If youhave them quite often, you’re going to wanthim to know early on what to expect and whatto do. Think of the shock if he didn’t know.That’s liable to be a bigger turn off than yourcareful explanation.
If you have very few seizures or none at all,you could probably wait until the relationshipis more solid. Either way, there’s no guaranteethat he’ll respond well. But if he doesn’t, atleast you will know whether he’s worthy ofyour friendship.
Sixteen-year-old Joshand his family haveexperienced a rollercoaster of emotionsthroughout his yearof frequent, uncon-trolled seizures. At the beginning,they did not knowhow to help himduring a seizure.
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Q. Will I be able to get my driver’s license?
Yes, if you are not having any seizures thatmake you black out or lose control of whatyou’re doing. How long you have to beseizure-free before you can drive depends onwhich state you are living in. The time rangesfrom three months to a year. You also have tomake a real commitment to take your medsevery day, on time, so you don’t risk having a seizure on the road.
Q. I’ve had a couple of seizures but I don’twant to tell my doctor because I’m afraid I’ll lose my license.
If you don’t tell the doctor, you’re missing achance to adjust your meds so you won’t havemore seizures. The bigger risk is that you’llhave a seizure while driving. While it’s toughnot being able to drive for a while, you don’twant to risk having a bad accident that hurtsyou or someone else.
Q. If I lose my license because of seizures, can I ever get it back?
Yes. Once you have been seizure-free (reallyseizure-free) for however long your staterequires, you can re-apply and get yourlicense back.
Q. There’s alcohol and sometimes drugs at parties.It makes me feel really different to always sayno. How would they affect my seizures?
Using either is a real risk, because both areagainst the law and you could get caught. You don’t want that kind of trouble. Besides,mixing street drugs with epilepsy meds is
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even riskier. Some illegal drugs—cocaine, forexample—can cause seizures in people whodon’t even have epilepsy.
Other illegal substances, like pot, may containall kinds of additives that could be harmful toyou. As for alcohol, it’s unlikely to cause aseizure immediately, but it may the followingday. Remember, just one seizure can set youback on qualifying for a driver’s license.
Q. Will I be able to go to college? Get a job?
Yes, to both. If your high school grades aregood enough to get you into college if youdidn’t have epilepsy, there’s no reason to thinkthat having epilepsy would be a barrier.
Sometimes, the meds might affect howquickly you can complete tests and similarprojects. In most cases, you should be able to work with the college administration to
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Fourteen-year-oldLeslie was diagnosedwith epilepsy andresponded well tomedication at first.But once she hitadolescence, herseizures became more frequent.Throughout this time, Leslie keptgoing to school, andkept up with herstudies, like a silentwarrior. Leslie hastried several othermedical options toreduce her seizures.Today, she has fewerside effects andfewer seizures.
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take a lighter credit load and even have extratime to complete your work.
The key to getting a job is to have marketableskills and some work experience. Try buildinga resume with part time jobs while you’re stillin high school and at college, or do somevolunteering or community service. Sometimesvolunteer jobs can become permanent ones.
Q. Will I be able to have children? Will theyhave epilepsy?
Chances are good that you will be able to havechildren, just like anyone else, and chances arethey will not have epilepsy. There are geneticfactors in epilepsy, but it’s not inherited aspredictably as curly hair or blue eyes.
Q My parents don’t want me to play sports.They think it’ll make the seizures worse. ButI really want to. How can I make them seehow important this is to me?
Have you tried raising this question with yourdoctor? He or she could be a good ally—depending on the sport and how your seizuresaffect you. Most teens with epilepsy should beable to run track and play basketball or tennisor other sports with no problems.
Swimming alone is not a good idea, at anytime for any one. Swimming with others whoknow you have epilepsy and are good enoughswimmers to help you if you should have aseizure is a better plan.
Protective helmets can reduce the risk of headinjury from cycling, baseball and football,although not completely. Helping parents let
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go is never easy, and it’s especially tough whena teenager has a medical problem. Perhapsyou can convince them to let you try and seehow things go.
Q. Ever since I started having seizures I’ve feltvery down and sad. I worry all the time abouthaving seizures. Nothing seems like fun anymore. Could the seizures be doing that, or isit just because I hate having epilepsy?
It could be a combination of both. It couldalso be the medicines. Tell your parents how you’re feeling and see if you can get anappointment with your doctor to find outwhat is causing you to feel this way. A changein medicine might help. Depression and anxiety are not things to ignore. They can be treated successfully.
Q. I think I’m more likely to have seizures whenI’m really stressed or tired. Is that possible?
Yes, being under stress or not getting enoughsleep can trigger seizures in some people. Allnighters are not a good idea when you haveepilepsy. That doesn’t mean you have to napall the time, just get an average amount ofsleep to feel rested.
Q. Someone told me flashing lights or evenvideo games can cause seizures. Is that right?I really like the games, and I’ve never had aseizure when playing them. What’s the story?
Some people are what’s called photosensitive,which means they may have seizures if a lightflashing at a certain rate is shined in their eyes or they look at flashing images of light and dark.
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If you’ve had an EEG test, they probably did aphotosensitivity test as well, using a light, to seeif your EEG would respond. If you didn’t have aseizure, or there were no telltale signs on yourEEG, then flashing lights or flashing video gameimages may not be a problem for you.
Q. When I asked the doctor about the kind ofepilepsy I had, she told me a lot of longwords. How can I find out more about it?
The Epilepsy Foundation’s website,www.epilepsyfoundation.org has a lot of infor-mation about types of epilepsy and types ofseizures—no, they’re not the same thing. Asection of the site, called E2R (which standsfor Entitled to Respect) has additional infor-mation for teens, and there’s a teen discussiongroup under the heading of eCommunitieswhere you can interact with other teens.
Some local Epilepsy Foundations have teengroups where you can get to know others whoare living with seizures.
Epilepsy 101 Epilepsy is an underlying condition in the brainthat from time to time produces electrical distur-bances that affect awareness, movement, sensa-tions or behavior. The electrical disturbances arecalled seizures.
Seizures can be partial (where only part of the brainis affected) or generalized (where a wave of energyaffects the whole brain at once). On the right is alist of how these different types of seizures typicallyaffect people.
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Common SymptomsSIMPLE PARTIAL SEIZURES
• Jamais vu (familiar things suddenly seem unfamiliar)
• Trembling that moves up one side of the body
• Déjà vu (unfamiliar things suddenly seem familiar)
• Out of body experiences• Sudden shifts in mood• Unexplained anger or fear• Disturbed speech
COMPLEX PARTIAL SEIZURES• Lip smacking• Swallowing• Picking at clothes• Wandering• Lost time• Lack of response to others• Senseless, clumsy movements• Repeating phrases• Taking off clothes• Unaware of danger or pain• “Sleepwalking” appearance
GENERALIZED SEIZURES• Convulsions• Sudden falls• Brief blackouts, staring• Sudden muscle jerks
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Notes
Questions For My Doctor
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Rev. 1/10
The H.O.P.E. Mentoring program is supported
by an educational grant from
800-332-1000www.epilepsyfoundation.org
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