During your teenage years, your body goes through a lot of changes. And for some people, this can mean developing a type of epilepsy called juvenile absence epilepsy (JAE). If you, or someone you know, have been diagnosed with JAE, you probably have a lot of questions.
Here’s what you need to know about juvenile absence epilepsy.
What is juvenile absence epilepsy?
JAE is a fairly common type of epilepsy which usually starts to affect people between the ages of 9 and 13 (though it can start earlier or later). It makes you have absence seizures, which is where you briefly lose awareness of your surroundings and seem to ‘day dream’ for a few seconds. It can also have other symptoms (see below).
Juvenile absence epilepsy symptoms
Here are some of the most common symptoms of JAE:
- Absence seizures
Everyone who’s diagnosed with JAE will have absence seizures. An absence seizure is usually a fairly short (1-15 seconds) seizure, where you stop what you were doing and lose awareness of your surroundings. You might stare into the distance, and sometimes your eyes might flutter or you may make slight jerking movements. You then return to consciousness, and carry on what you were doing. You won’t remember the seizure, and don’t respond while it’s happening. In JAE, seizures are fairly frequent, but don’t normally happen every day.
Read more: What is an absence seizure?
- Tonic-clonic seizures
Around 8 in 10 people with JAE also have tonic-clonic seizures. These are seizures where you lose consciousness, your muscles go ‘limp’, then you start to shake uncontrollably. If you were standing up, you would fall over and shake on the ground.
- Myoclonic jerks
Some people with JAE experience myoclonic jerks. These are uncontrollable spasms, often in your arms or legs. The seizures are more likely to happen if you’re feeling tired.
What causes juvenile absence epilepsy?
Right now, we don’t fully understand why people get juvenile absence epilepsy. For some people, there does seem to be a genetic factor, but for most people we don’t know why it happens.
JAE stories: Read about Brittany’s experience with absence seizures
Getting diagnosed for juvenile absence seizures
Although JAE is relatively common, it often goes undiagnosed. Since the symptoms can look like ‘day dreaming’, teachers and other adults may sometimes misunderstand what is happening.
To get a diagnosis for JAE, book an appointment with your doctor. They can then refer you to a specialist who will use some of the following techniques:
- Medical history
They will ask all about your seizures and your personal and family health history. It’s really helpful to have someone who’s seen the seizures come to the appointment with you - they can help explain what the seizures look like.
- Using an EEG machine
JAE can often be diagnosed by using an EEG machine. This is a kind of sensor which can pick up on brain waves through your skull, and ‘spot’ brain activity that’s typical of JAE.
- Other tests
Neurologists and epilepsy doctors might use other tests to diagnose JAE. They could ask you to avoid sleeping - this makes seizures more likely, so the doctor can see the seizures for themselves. If you have photosensitive epilepsy, doctors might also try to trigger a seizure with flashing lights. Don’t worry - all the tests happen in a safe, supportive environment.
Juvenile absence epilepsy treatment
Most people with JAE are treated using anti-seizure medication, and the condition responds well to this kind of treatment. Common medications include ethosuximide, sodium valproate, lamotrigine and zonisamide.
Although medication helps treat many people with JAE, some people have drug-resistant epilepsy. If so, alternative treatments are available, including the use of special diets such as the ketogenic diet.
Can you grow out of juvenile absence epilepsy?
For most people, JAE is a lifelong condition, which means you will need to keep taking medication (or other treatments) for the long term. Sometimes people with JAE want to try living without medication - especially if they’ve been seizure free for several years. But it’s important to talk to your doctor about this. Studies suggest that stopping taking medicine for JAE can make the seizures come back - and they may get harder to control. Whatever you decide to do, it’s important to consult with your doctor first.
Remember that although JAE is a long term condition, most people are able to control it through treatment - and live life on their own terms.
