Dissociative seizures

Like epileptic seizures, dissociative seizures are episodes of uncontrolled movements, sensations or behaviour. But unlike epileptic seizures, dissociative seizures are not caused by abnormal electrical activity in the brain.

Instead, it’s thought they are a physical reaction to distressing triggers such as sensations, thoughts, emotions and difficult situations.

Some experts say dissociative seizures are the brain’s way of ‘shutting down’ to protect itself from overwhelming distress.

What happens during a dissociative seizure varies from person to person. Some dissociative seizures look very similar to epileptic seizures, whilst others look more like fainting.

Someone having a dissociative seizure may fall to the floor and have shaking or jerking movements, bite their tongue and lose control of their bladder. Other people may go blank and stare, and not be able to respond to people around them.

About 1 in every 5 people referred to hospital for seizures are diagnosed with dissociative seizures. Many people are misdiagnosed with epilepsy at first and take epilepsy medicine for  a number of years, before getting the correct diagnosis of dissociative seizures. Some people have both dissociative and epileptic seizures.

Many different names are used for dissociative seizures, and doctors don’t always agree on what to call them. Commonly used names include:

• Non-epileptic attack disorder (NEAD)
• Non-epileptic seizures
• Psychogenic non-epileptic seizures (PNES)
• Psychogenic seizures
• Functional seizures

The name ‘dissociative seizures’ is often used because people may experience a state called dissociation during the seizure. This means they feel disconnected from themselves and the world around them or the world around them does not seem real.

In the past, dissociative seizures were often called ‘pseudoseizures’. This term tends not to be used anymore because it suggests that these seizures are made up or ‘put on’ to look like epileptic seizures. This is not true, as it is now understood that dissociative seizures are involuntary. This means the person is not making them happen.

It can be difficult to understand why dissociative seizures have started. They happen for different reasons in different people. However, there are some things that make people more at risk of developing dissociative seizures. These include past stressful experiences, family problems, and physical or mental health problems.

Some people who have dissociative seizures have had a traumatic experience, such as physical or sexual abuse, bullying, or the death of someone close. But this isn’t the case for everyone. For some people, their seizures may be caused by a build up of stress over time.

Doctors who specialise in treating seizures can often tell if a seizure is epileptic or dissociative by listening to a detailed description of the seizure. Video recordings of the seizures (for instance filmed on a mobile phone) can be very helpful.

Your doctor might ask you to have an electroencephalogram (EEG) test to check if you have electrical changes in your brain during your seizures. This can help your doctor to tell if your seizures are epileptic or not.

The doctor may also suggest using video-telemetry, either as an in-patient at hospital, or at home. This involves you wearing EEG equipment for a few days, and being filmed by a video camera linked to the EEG machine. This makes it possible for any seizures you have to be recorded on video and the EEG at the same time.

The main treatment for dissociative seizures is psychological therapy, also called talking therapy. The types of talking therapy your doctor might offer you include cognitive behavioral therapy and counselling.

The NHS website has information about talking therapy. Talking therapy can help you understand if there are any triggers for your seizures, and teach you techniques to help manage them.

Epilepsy medicines will not stop dissociative seizures, so your doctor will usually only recommend them if you are having epileptic seizures as well.

If you are already taking epilepsy medicine, and have now been diagnosed with dissociative seizures instead of epilepsy, your doctor will tell you how to safely reduce and stop your epilepsy medicine.

Many people find there are things they can do themselves to help control or stop their seizures. Sheffield Teaching Hospitals has published a guide called Taking control of your non-epileptic attacks. The websites and the YouTube documentary listed at the bottom of this page also contain tips on managing dissociative seizures.

People with dissociative seizures can make a full recovery and live normal lives. But talking therapy is not a ‘quick fix’ and can take time to work.

This is what someone needs to do if they see you having a seizure. Tell them:

Do

• Cushion my head
• Move any harmful objects away from me
• Be calm and reassuring

Don’t

• Don’t restrain me in any way
• Don’t put anything in my mouth
• Don’t try to give me any medicine

Should they call an ambulance?

It’s not usually necessary to call an ambulance for someone having a dissociative seizure, unless they are injured. Dissociative seizures are not dangerous and do not cause damage to the brain, even if they last a long time.

However, if the person with you is not sure if your seizures are epileptic or dissociative, and the seizure lasts more than 5 minutes, they should call an ambulance.

If you’ve been diagnosed with dissociative seizures, you will need to stop driving and tell the DVLA. You may be able to get your licence back when you’ve been seizure free for 3 months. If your seizures are likely to happen while driving, the DVLA will require a specialist review before deciding if you are safe to drive.

If you have epileptic seizures as well, you will also need to follow the driving rules for epilepsy.