Non-epileptic seizures (NES)

Some young people experience periods where they ‘black out’ or lose awareness of their surroundings for a few moments or sometimes a bit longer. Their body may start shaking and they could fall over and hurt themselves. A doctor may at first think that they could have epilepsy.

However, young people with non-epileptic seizures (NES) are not actually having an epileptic seizure. They don’t have the electrical changes in their brains which happen in an epileptic seizure. Instead, their body is stressed in some way and they lose awareness of their surroundings for different reasons. Some people have both NES and epileptic seizures.

We have met lots of young people with NES and have lots of ways to help them get back to normal life. It is important for people to understand about NES and this information from Great Ormond Street Hospital (GOSH) will help.

• „„ They are not made up or being done on purpose
• „„ They are not a type of epilepsy – they are something different
• „„ They are not the person's fault and may be difficult for them to control.
  

There could be several different types of doctor who help make the diagnosis. The child or young person will be asked to explain exactly what happens to them during a seizure or non-epileptic seizure, and what they are doing when they happen.

It is also important to find out about all aspects of their health, their school, their friendships and their emotions. They might be asked to fill out some questionnaires.

Having all this information often allows a doctor to make the diagnosis. However, some young people may be asked to have some further tests, such as an electroencephalogram (EEG). This involves wearing a cap that measures electrical signals in the brain. If doctors also decide to film them at the same time, then they can see what happens in their brain and body when they have an NES.

We don’t really know why people get them, but it seems people get them for different reasons. They might be linked to stressful situations, but they might happen at other times too. Some people with NES don’t feel stressed. When people feel upset, their bodies respond in different ways. Lots of people get headaches.

Other people feel sick. Just as being nervous can make people go to the toilet, NES is another way that some people’s bodies react when they feel under pressure or upset. The important thing to know is that NES are often related to things that are going on in their lives, even when it isn’t obvious what. Scientists have shown that some people are more likely than others to have physical symptoms as the result of stress or emotions.

NES can happen when dealing with stressful situations. These are different for different people. It could be something small or a much bigger stressful situation, such as:

• „„ Going to a new school
• „„ Being bullied
• „„ Someone in the family going away or getting ill
• „„ Having bad things happen to them.

For some people something really horrible has happened to them. If someone has been sexually or physically abused, then it is really important they talk to an adult they trust. This could be their parents, a teacher, a nurse or someone else. NES can also come about when someone has another problem that hasn’t been recognised or treated, for example anxiety, depression, autism or dyslexia.

The people looking after the young person experiencing NES need to work together to understand their problem and help them recover. This might include paediatricians, neurologists, psychologists or psychiatrists. They will also assess whether they have other problems that could benefit from some help.

Then they will help them to think about their NES differently and find ways to improve things for them. They might use a method of understanding problems called Cognitive Behavioural Therapy (CBT). This helps them think of new ways of coping, changing their behaviour, and considering their thoughts.

If they do not also have epilepsy, their doctor will want gradually to take them off any epilepsy medication they are taking. We know that anti-epileptic medicines do not help NES, and they might give some side-effects.

If someone has another problem, such as anxiety or depression, their doctor might suggest a different sort of medicine, in combination with talking treatment. The young person's school also needs to understand how best to help them when they have an NES. Health professionals might contact them.

There is a lot that people and their family can do themselves, for example:

• Try to pay little attention to the NES and carry on with daily activities.
  
• Tell their family, school and friends about NES so they can help too.
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• Find out what triggers their NES or makes the seizures worse and work to find better ways of coping.
  
• When they feel like a NES might happen, to try to relax and stay calm. Distractions or keeping active might help, or talking to someone who knows them well.
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• Psychologists, nurses and doctors at a local Child and Adolescent Mental Health team can help.

All the young people we have met have found ways to deal with NES. It can take time, but usually they go away.