Living with epilepsy

To attack

Provoking factors

Although we cannot predict when an epileptic seizure will occur, we can look for triggers for such a seizure. Triggers are not the cause of epilepsy, but can increase the chance of a seizure.

For example, do you often have an attack when you are tired? Or when you are very stressed? Some people have a type of epilepsy that is light sensitive. This means that they can have an attack from flashing lights.

When you know what can trigger an attack for you, you can take this into account. For example, by going to bed on time, doing relaxation exercises, ... To find out which factors can trigger an attack for you, you can keep an epilepsy diary.

It is also very important that you take your medication according to the schedule that the doctor has made . Not taking medication is the biggest risk factor for having an attack.

School

You often spend most of your day at school. This is a very important part of life. Of course, you learn in class, but you also play with your friends during recess, go on trips or participate in all kinds of activities. If you have epilepsy, some things can be a little different or more difficult than with your classmates. Sometimes you have to rest when you are tired, learning becomes a little more difficult or you are not allowed to do something, such as swimming alone. That can be quite difficult! Fortunately, there are many things that can help you and that are possible. You can still learn, laugh, make friends and do all kinds of fun things, just like other children.

Why some things at school are more difficult, we don't always know exactly. It can have to do with the epilepsy itself, but also with the medication you take, whether you slept well, how many attacks you had, and so on. Below you can read more about which things can be difficult and what can help you.

Take lessons and study

There are many things that are important to be able to learn well at school or to study at home. You have to concentrate, understand the explanation and the subject matter, remember information, work at a fast pace, and so on.

If you have epilepsy, some of these things can be a little more difficult. For one person, concentrating is difficult, for another person, almost everything seems more difficult than with classmates. It is important to talk about this with your parents and teachers. Together you can look for what can help you.

And you know what? You're not alone. In every classroom there are kids who struggle with some of these things, even kids without epilepsy.

What can I do?

First of all, you can work with your parents and teachers to see what is difficult for you and what could help you.

Some children are bothered by noise in the classroom, then headphones can help them work better. Other children find it difficult to work quickly, then it is nice if you have some more time to do exercises or tests. There are many aids and adjustments to help you. For some adjustments a note from the doctor is required. You and your parents can discuss this with the neurologist during an appointment at the hospital.

Teachers and care teachers have a lot of experience in finding suitable resources. Sometimes they can involve the CLB. The CLB can then also help you find what works for you. Parents can also contact the CLB themselves.

When you have a lot of attacks for a period, it can be that these things are even more difficult than usual. You and your parents can discuss this with the teachers, so that they can take this into account.

Friends and classmates

It can also be quite scary for your friends if you have a seizure. If you have epilepsy, it is important that your friends know what epilepsy is and what a seizure looks like for you. This way they can stay calm, know what to do and go get an adult if necessary. This gives them and you a safe feeling.

Some children and young people are afraid that they will be bullied because they have epilepsy. It is important to know that you are not alone. If you are being bullied or excluded, it is best to tell an adult, such as your parents, a teacher or the student guidance.

On a trip

Going on a class trip is a fun experience, you don't want to miss it. If you have epilepsy, there are sometimes a number of things you need to pay extra attention to or arrange in advance. With good preparation, this usually works out fine.

Ask your doctor if you can come along and if there is anything you should pay attention to

Can you come? Great! Then it's time to prepare yourself properly:

• Bring enough medication for the entire trip, along with your medication schedule
• Take your emergency medication with you, and give a dose to your teachers too
• Take good care of yourself: get enough sleep, eat enough and listen to your body

Free time and hobbies

Having a hobby is very important. Even if you have epilepsy, you can participate in many hobbies and sports. In a team sport, it is nice to inform your teammates about your epilepsy, so they know what an attack looks like for you and they can help you if necessary.

Do you like swimming? You can! Make sure there is always an adult nearby when you are in the pool. That way they can help you quickly if necessary.

You can do many sports, even if you have epilepsy! But there are a few sports that can be a bit more difficult, because you can't always get help quickly. Think of deep sea diving, open water water sports, caving, ... With other sports you can often just participate. Sometimes it is smart to be extra careful, for example by wearing a helmet

If you want to try a new sport, discuss it with your doctor first. That way you know for sure what to look out for.

How do I explain epilepsy to others?

It can be quite scary to tell your friends or your class that you have epilepsy. Yet this is very important. When you spend a lot of time with someone, it can happen that you have a seizure with this person.

Or maybe you have experienced this before? Then it is good that your friends or classmates know what epilepsy is and what your attacks can look like. That way they can stay calm and know what to do if necessary. If they do not know this, they can be scared and not know what is happening. That can be quite confusing for them.

But how do you tell this?
The most important thing is that you feel good about what is being told. Also ask an adult to help you. This can be one of your parents, but also the teacher, the care teacher, a support worker, your psychologist, your neighbor, ...

You can tell what epilepsy is using a booklet or a brochure. If you click here you can find a lot of booklets and brochures, just look and see if there is something that you think would be fun to use. Are you nervous about telling your friends or classmates yourself? Then discuss with your parents or a teacher whether they want to help you or do this for you. Some children prefer to show a video.

Epilepsy looks different for everyone. That's why it's good to tell what a seizure looks like for you. Do you start shaking your arms and legs? Are you out of the world for a moment? Can't find the words? This is important information, because it allows others to recognize a seizure more quickly. Also tell them what they can do if you have a seizure and when they should get an adult

But remember: you are much more than your epilepsy! Also tell who you are and that you still love to have fun with your friends. That is the most important!