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Dissociative seizures

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

The NHS website 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.

Evelina Children’s Hospital has made a film about dissociative seizures (they call it NEAD in the film). The film talks about the service at Evelina. Services at other hospitals may be different.

For 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.

This information has been produced under the terms of The Information Standard.

  • Updated September 2015
  • Currently under review
Code: 
F012.03

Epilepsy Action would like to thank Dr Markus Reuber, Consultant Neurologist and Senior Clinical Lecturer at the Academic Neurology Unit of the Royal Hallamshire hospital, for his contribution to this information.

Dr Reuber has no conflict of interest.

Comments: read the 8 comments or add yours

Comments

I started having seizures about a year ago and due to issues in my local trust with a lack of services I didn't get an appointment with a neurologist until January of this year.
The neurologist was nice but as soon as he was aware that I was under the care of psychiatry (I have a very mild form of bipolar called cyclothymia) he seemed to dismiss my symptoms and immediately label me with non-epileptic attacks. I have had an MRI, CT scan, and EEG but as we know this does not provide a diagnosis. My psychiatrist does not feel that my symptoms fit with NEAD and believes it is epilepsy, as does my GP and the doctors I have seen in A&E when I have been taken there.
I am due to see the neurologist again in August (I should have seen him in April but again there is a massive lack of service) and I don't know how to address my concerns with him that I have been misdiagnosed.

Submitted by Charlotte Clapham on

Sorry I will try to be brief as possible. I wonder if I have epilepsy or its mimic dissociative condition? Please advise!
My GP hasnt told me I suffer from epilepsy, its my query, and I just read on your website about the mental dissociative state that mimics epilepsy.
Episodes occur pretty precisely typically last week of each month for 2 or 3 days, from 3 to 10 times per day. I dont fall over or lose consciousness, but cant speak to any companions and feel as if dreaming - as if i've returned to . . . previous episode.?
Its hugely scary and unpleasant, Usually close my eyes. Then after one or two minutes the feeling recedes. I open eyes to find Im breathing very hard and heart racing. I recover equilibrium within minutes and that's it until the next time. These episodes have been occurring since summer 2015 so began months after an aortic valve replacement in August 2014. The op. was declared a success but I never recovered previous fitness and strength, with shaky left hand (right hand seems ok)
I am 79 but two years ago used to garden, paint, sculpt, cook, shop etc. - now all too hard. The dream-seizures are a wretched addition, but my GP thinks - "well, she is old. . . "
Yet the century is bedizened with active creative 80 year olds. Please advise me what to do or try?!

Submitted by Maril on

Hi Maril

That must be disturbing to have these episodes affect your life so consistently. You don’t mention whether you have seen a neurologist. If you haven’t you might want to ask your GP to refer you to one. Then you should get proper tests to check out what is happening for you. The specific description of these episodes would be really useful for the consultant.

I hope you get some answers soon. 

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

My daughter was diagnosed with epilepsy aged 9. She is 30 now . They have always said there was no eeg readings but came to the conclusion through video that it was a rare form of epilepsy .
3 years ago she had tests to see if surgery was an option and had the radio active dye inserted while having seizure then straight into scanner ... and nothing showed !
We have been reading up on nead and wonder if this could be the reason no electrical brain activity has ever been recorded .
Would really appreciate an opinion on this .
Thank you

Submitted by Christina on

Hi Christina

It is quite usual for someone with epilepsy to have a normal EEG and MRI. This is partly because an EEG will usually only show epileptic activity if someone is having a seizure during the scan: https://www.epilepsy.org.uk/info/diagnosis/eeg-electroencephalogram

Did the incident you are talking about involve an MRI or an EEG?

If it was an EEG then there is every possibility it was a dissociative seizure: https://www.epilepsy.org.uk/info/diagnosis/dissociative-seizures-non-epileptic-attack-disorder-nead

But I’m also wondering what happened as a result of the surgery investigative tests. And what has happened in the 3 years since then? Is your daughter still being treated for epilepsy?

Sorry to be asking more questions, but I am hoping I can be of a little more help if I’m clearer about your daughter’s situation.

If you would prefer you could contact us again by email or the Epilepsy Helpline freephone 0808 800 5050.

Regards

Cherry  

Epilepsy Action Helpline Team

 

Submitted by Cherry-Epilepsy... on

About two years ago I began to have episodes where I would fall to the floor and fit. It would look like a tonic-clonic seizure, only I would be conscious the entire time. I have talked and answered questions during these episodes before, although my eyes are closed and I have no other control over my body. They usually last bewteen 2-6 minutes and leave me feeling extremily tired. All doctors are quick to tell me is that it's not epilepsy, because I am conscious. I feel like most doctors assume I am making it all up, however I have now had my 25th attack and I just want some advice so I can stop feeling so helpless about the situation. I wonder if others have had similar issues to me? I'm not looking into NEAD but I'm really feeling alone aabout this.

Submitted by Lindsay on

Dear Lindsay

Thank you for your comment.

It must be frustrating not knowing what is causing your symptoms. I hope you get a medical diagnosis or explanation for what is happening soon so you can then hopefully get the support you need. 

As an epilepsy charity we have services so people can talk to others affected by epilepsy. Such as our local groups, our forum4e online community, facebook and twitter.

If you are diagnosed with NEAD we have details of support at the end of this webpage.

If you need to talk to someone, please feel free to contact our helpline team directly.  Either by email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane-Epilepsy ... on

Hi Lindsay, I'm terribly sorry to hear you don't have a diagnosis, I can understand the frustration and sadness that it brings. Your symptoms sound exactly like mine, I have been taking Lamictal for around 15 years, it has been very successful, but I am now dealing with liver damage (which must be from the medication) as I might have 1 alcoholic drink per 6 months. With the same symptoms as you I was diagnosed with temporal lobe epilepsy. Hopefully you can find a doctor that can help, don't give up. Hugs.

Submitted by Mel on

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