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.
