Dissociative seizures

• Is this page for me?
• Other names for dissociative seizures
• How are dissociative seizures diagnosed?
• How can you tell the difference between epilepsy and dissociative seizures?
• What makes dissociative seizures happen?
• I have just been told I have dissociative seizures. What do I do now?
• What is the treatment for dissociative seizures?
• What first aid do I need?
• Where can I get support?

Is this page for me?

You may find this information useful if you:

• Have just been diagnosed with dissociative seizures
• Have been told for years you have epilepsy and you’re now being told the diagnosis was wrong. And that you have dissociative seizures instead
• Have been told that you have epilepsy and dissociative seizures
• Are waiting for a diagnosis
• Are wanting to understand and support someone who has been diagnosed with dissociative seizures

Other names for dissociative seizures

Dissociative seizures have a lot of different names:  We have chosen the name used in the International Classification of Diseases. Lots of people are unhappy to have a diagnosis that is ‘not’ something. But the other names are not that easy to understand. You will know which name you prefer.

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

Whichever name you recognise, this information is for you.

How are dissociative seizures diagnosed?

Dissociative seizures are often mistaken for epilepsy. They can be difficult to diagnose. In fact it can take several years after someone starts having seizures for them to get an accurate diagnosis of dissociative seizures. Even experienced doctors can find diagnosing dissociative seizures a challenge. 

It’s very important to get the right diagnosis. This is because if you’re given a wrong diagnosis of epilepsy, the doctor will probably prescribe you epilepsy medicines. These can have side-effects and will not control your seizures. Being on these medicines also means that the true cause of your seizures may never be investigated.

If you don’t have good seizure control you may be referred to a specialist epilepsy centre for assessment. You could have a type of epilepsy that doesn’t respond well to epilepsy medicines. This is sometimes called intractable or refractory epilepsy. Or you could have dissociative seizures and that’s the reason why you aren’t responding to epilepsy medicines.

Some people have epilepsy and dissociative seizures.

How can you tell the difference between epilepsy and dissociative seizures?

It can be difficult to tell the difference between an epileptic seizure and a dissociative seizure. You can’t usually tell by looking, whether someone is having an epileptic or a dissociative seizure, if you’re not an expert in this field.

One of the ways in which a professional will tell the difference between dissociative seizures and epilepsy, is from an electroencephalogram (EEG). This picks up and records the electrical activity in the brain. If someone is having an epileptic seizure, an EEG will usually show abnormal electrical activity. If someone is having a dissociative seizure, an EEG will not show abnormal electrical activity.

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

Epilepsy Action has more information about video-telemetry

What makes dissociative seizures happen?

Dissociative seizures happen for psychological reasons rather than physical ones. The psychological reasons could include thoughts, feelings, and present and past experiences. This is different from epilepsy. Epileptic seizures happen because of abnormal electrical activity in the brain.

I have just been told I have dissociative seizures. What do I do now?

It can be really tough to be told you have dissociative seizures. This is especially true if you’ve spent years thinking you have epilepsy, and you’ve been trying to adapt to that. It’s quite usual for it to take time to believe the new diagnosis. Also, if you’re not told carefully, it can sound like the doctor is saying you don’t have a real health condition, or that you are ‘putting it on.’ This is not true. Dissociative seizures are a real medical condition. And the dissociative seizures you experience can be just as disruptive and unsettling as epileptic seizures. You’ll need the support of friends, family and medical people during this time of adjustment.

What is the treatment for dissociative seizures?

If you have dissociative seizures, epilepsy medicine won’t work for you. But don’t stop taking the medicine suddenly because this may be dangerous for you. Your doctor will tell you the right speed to do this at. Often just getting a correct diagnosis and understanding a bit more about your seizures can mean that they start to happen less often. 

This is a quote from a specialist that might help:
“You didn’t bring the attacks on, but you can help yourself to get better.”

If seizures don’t stop once you have your diagnosis, a number of more specialist treatments may be offered to you:

• Cognitive behaviour therapy (CBT)
• Counselling
• Psychotherapy
• Anti-depressants

NHS Choices has information on counselling, CBT and psychotherapy

You may feel you’ve been dismissed with no offer of treatment. If so, go and talk to your GP and make sure they understand you do need treatment to help you manage your seizures. The sooner you do this the better, because if you are offered therapy, you may need to go on a waiting list. Whichever therapy you are offered, it will ideally be with someone who also understands about dissociative seizures. Your neurologist or epilepsy nurse may be able to recommend someone.

For more tips on how to manage your dissociative seizures see the non-epileptic attack disorder website.

What first aid do I need?

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

Do

• Cushion your head
• Move any harmful objects away from you
• Be calm and reassuring
• Call an ambulance if they don’t know if you have epilepsy or dissociative seizures

Don’t

• Call an ambulance unless you are injured or they don’t know about your condition
• Restrain you in any way
• Try to give you any medicine

 Dissociative seizures are not dangerous and do not cause damage to the brain. The only reason someone would need to call an ambulance is if you injured yourself. Dissociative seizures often go on longer than epileptic seizures.

Where can I get more information and support?

Website: non-epileptic attack disorder.org.uk
Website: neurosymptoms.org
Website: codestrial.org/dissociative-seizures
Website: fndaction.org.uk. The aim of this website is to raise awareness of functional neurological disorder (FND) and dissociative seizures
Website: neurokid.co.uk This is a website for children and young people with dissociative seizures

There are also a number of groups for people with dissociative seizures on Facebook.

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Freephone Helpline on 0808 800 5050.