- Is this page for me?
- Other names for dissociative seizures
- Getting a diagnosis for dissociative seizures
- 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 both epilepsy and dissociative seizures
- Are waiting for a diagnosis and wondering whether you may have dissociative seizures
- Are wanting to understand and support someone who has been diagnosed with dissociative seizures
Other names for dissociative seizures
Many different names are used for dissociative seizures. We have chosen the name used in the International Classification of Diseases. Other commonly used names are non-epileptic attack disorder or non-epileptic seizures. However some people are unhappy to have a diagnosis that is ‘not’ something. Other names that are used for the same condition are:
- Psychogenic non-epileptic seizures
- Psychogenic seizures
- Functional seizures
In the past dissociative seizures were also often called “pseudoseizures”. This term is now discouraged because it wrongly implies that these seizures are consciously produced to look like epileptic seizures.
Whichever name you have come across, this information is for you.
Getting a diagnosis for dissociative seizures
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 wrongly diagnosed with epilepsy instead of dissociative seizures, the doctor will probably prescribe you epilepsy medicines. These can have side-effects and will not control your dissociative seizures. Being on these medicines also means that the true cause of your seizures may never be investigated or treated.
If you have been prescribed epilepsy medicine and you don’t have good seizure control you could ask to be referred to a specialist epilepsy centre for assessment. You would need to ask either your neurologist or your family doctor. 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 both epilepsy and dissociative seizures. Mostly dissociative seizures start a while after the epileptic ones (and possibly once the epileptic ones have stopped). Occasionally people can have both types of seizures at the same time. If you think you may have both types of seizures you could talk to your consultant.
How can you tell the difference between epilepsy and dissociative seizures?
It can sometimes be difficult to tell the difference between an epileptic seizure and a dissociative seizure. If you are not an expert in this field you may not be able to tell by looking whether someone is having an epileptic or a dissociative seizure.
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. Often dissociative seizures are how the brain reacts to thoughts or feelings related to 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 understand the new diagnosis. Also, if the diagnosis of dissociative seizures is not explained well, 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. If you have been diagnosed with dissociative seizures you could ask the consultant for a referral to a talking therapy. In some parts of the country this could be a psychologist.
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.
It is important to remember:
“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 aim of CBT is to help you explore and change how you think about your life, and free yourself from unhelpful patterns of behaviour. You set goals with your therapist and may carry out tasks between sessions. A course usually involves around 12 to 20 sessions.
The NHS website has information on counselling, CBT and psychotherapy
You may feel you’ve been dismissed with no offer of treatment. But something you could do without the help of a doctor is look at the NHS website. It describes the various types of therapies you may want to think about. And the IAPT service (Improving Access to Psychological Therapies) links you to the resources in your area. There are likely to be waiting lists for any of these services, so the sooner you make contact with them the better.
Whichever therapy you choose it will ideally be with someone who also understands about dissociative seizures. Your neurologist or epilepsy nurse may be able to recommend someone. If this all feels a bit overwhelming your GP may be able to help.
Some common causes of dissociative seizures are stress, anxiety and post-traumatic stress disorder (PTSD). Anything that helps with an understanding of how these affect the body may help with managing your seizures. There are many ways to help manage your stress and anxiety levels. These include activities such as mindfulness and yoga.
The NHS website has information on stress.
Dealing with stress levels and trying to get the right amount of sleep are 2 particularly important things to consider when managing your seizures
For more tips on how to manage your dissociative seizures see links to the websites at the bottom of the page.
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.
What first aid do I need?
This is what someone needs to do if they see you having a seizure. Tell them:
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. (This may not be necessary if they have experience of looking after you during your seizures)
Don’t
- Don't call an ambulance unless you are injured or they don’t know about your condition
- Don't restrain you in any way
- Don't 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
This website has been set up by people with non-epileptic attack disorder (NEAD) to provide information and support for those with NEAD/dissociative seizures and their family and friends. The medical information has been checked and approved by a medical advisor, Professor Markus Reuber, who specialises in non-epileptic attack disorder/dissociative seizures. It has a wide range of very useful information.
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.
In Our Words: Personal Accounts of Living with Non-epileptic seizures.
This book has over 100 contributions from people with personal experience with dissociative seizures. Reading this may make you feel less alone with your problem and give you some ideas about what you could do about it.
Markus Reuber, Gregg Rawlings, Stephen Schachter. In Our Words: Personal Accounts of Living with Non-epileptic seizures. Oxford University Press 2018.
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.
Epilepsy Action would like to thank Markus Reuber, Professor of Clinical Neurology at the University of Sheffield, and Honorary Consultant Neurologist at the Royal Hallamshire Hospital, for his contribution to this information.
Markus Reuber has declared a conflict of interest. He is one of the editors of the book In Our Words: Personal Accounts of Living with Non-epileptic seizures mentioned above. Epilepsy Action does not believe this interest has influenced the content of this information, or Professor Reuber’s impartiality as an adviser.
This information has been produced under the terms of Epilepsy Action's information quality standards.
- Updated July 2020To be reviewed December 2021
Comments: read the 9 comments or add yours
Comments
Having first been diagnosed in 1977, my epilepsy is now controlled.
Over the past year "things" have been happening. First, my legs gave way while in public, and I ended up in A&E, but they had no idea what was going on.
Roll on six months and I began to experience "strange" feelings.
In a nutshell, after an EEG and a head MRI, I had two more visits to A&E.
Having had a conscious seizure for minutes, an ambulance was called and I was found a bed - for a week (!). Having arrived on the Saturday, I was forced to stay in until the following Friday when the Neurologist came to the hospital. (Cumbria).
Six weeks ago he thought I had a B12 deficiency - now it's Dissociative seizures.
Right now I'm as stress free as I ever was - I think - but am awaiting my first appointment with a Psychologist.
I want to thank Epilepsy Action for such an informative and helpful page on Dissociative seizures. I had no idea there was such a form, but you've explained it very well for the layman.
Thanks
Paul
I have been diagnosed with dissociative seizures about two months after being told I have epilepsy. I disagree with dissociative seizures diagnosis. I have not been stressed except for once while in hospital before I have had seizures. I have no memory of the events. I was hurt. Keppra worked as a preventitive The side of my face drooped. My oxygen levels dropped and ambos worked on me for over an hour to get me stable enough for trip to hospital. That was after I was taken off Keppra. And lastly I have had brain surgery for essential tremor that was severe and did not stop with distractions. I hate the psychological diagnosos and refuse to accept it.
Hi Gloria
It can be really hard to accept a diagnosis of dissociative seizures. I wonder what the doctors have based the diagnosis on. If they haven’t already told you, it might be worth finding out. And if they are not 100% sure, it might be possible to have video-telemetry done. This can sometimes give very clear information about whether you have epilepsy or dissociative seizures.
It’s also worth bearing in mind that it is possible to have both.
It might be helpful for you to go to one of the facebook groups linked from the bottom of our dissociative seizures page and see how other people have felt about their diagnosis.
Regards
Cherry
Epilepsy Action Helpline Team
I have always had what I thought was just really bad cold shivers since I was little. At first it was just a head twitch and now, at 21 it has spread to anything from just a head twitch to my whole upper body jerking violently. I have ADHD, PTSD, OCD, Depression and high Anxiety due to a sexual abuse event when i was younger and recently for the past 5 years I have gotten to where my body will jerk randomly. I could be walking and my leg will jerk and i will fall, my hand will jerk and ill drop something, i stumble over my speech and space out at random times. I've also been told i get discombobulated when in areas with many people I will start breathing heavy and get a headache and forget entirely what im doing. Sometimes ill recover in 5 minutes and sometimes it takes an hour. And recently forbthe past 3 years its gotten to where my whole body will go numb and ill start shaking to the point i fall and cant control my body like a seizure. Sometimes ill have them every month sometimes itll be a few months and nothing happens. I've been trying to figure out what was wrong with me but jo doctors have given me a conclusion often just saying i was dehydrated or simply exhausted. This seems like the most likely answer and now that i know about it i will probably go bring it up to a doctor.
Hi Niki – It sounds like you’ve been having a really hard time. Talking to the doctor about what’s been happening sounds like a good idea. We hope that you can get some answers to explain the symptoms you are experiencing soon.
Regards
Mags
Epilepsy Action Helpline Team
For 2.5 years i’ve been having what appear to be seizures. I’ve been exposed to high levels of kerosene fumes and severe mould in a rental property. The seizures began shortly after moving in and an oil leak was discovered.
The episodes are oddly triggered by physical activity and fatigue - this is the main trigger.
Also bright lights such as being in a car at night driving on a motorway with car headlights and street lamps quickly passing,
And stress and anxiety.
I’ve seen 2 neurologists. The 2nd I had to pay for privately to see as I was told neurology could not see me again at the hospital I visited as they thought my symptoms were that of a functional disorder. I was able to be referred by my GP to the neurologist I saw privately to their NHS clinic at a different hospital.
Initially this neurologist expressed concern at my symptoms along with an extremely elevated level of créatine kinase in my blood. She phoned me at home one Friday expressing concerns about the CK levels and explained what this meant. She then phoned me the following day, a Saturday asking that I come into the hospital for overnight admission so I could be monitored and that further tests could be done.
I arrived for my appointment and an overnight bag. The consultant said she wouldn’t need to admit me overnight after all but gave me no reason. I’d had blood tests taken 5mins prior to the appointment but the results didn’t come back until after the appointment.
The consultant during the appointment told me she had seen my previous clinical notes from the other hospital. (She’d seen these the following week after she’d phoned me) I’d had some stressful life events 6 years previously and it seems the consultant had simply read this and put my symptoms down to a psychological and/or dissociative cause.
My work background is within psychological services and ironically working within a clinic for dissociative states. I do have anxiety but given my background I also have a lot of insight and understanding and I don’t believe my symptoms are dissociative.
I’m at a loss as to what I can do. I was prescribed anticonvulsants (topirimate) by the neurologist. This made a big difference to the episodes coupled with gabapentin I was/am already taking. I had to stop taking the topirimate due to the side effects but my GP has now increased the gabapentin. This has massively helped to reduce the episodes and settle my reaction to stimuli like the car head lights.
I’m still waiting to hear from the DVLA to see if I can continue to drive.
I have never had an EEG or any other tests for epilepsy or for neurotoxins (if there are any tests for this?)
The only option I was given by the neurologist was to be referred to a neuropsychiatrist.
I’m now in a position of not knowing what is wrong with me. There was even a question mark around a functional neurological disorder in the neurologists final report so I don’t even have a diagnosis.
It seems I’m stuck between a rock and a hard place as consultants seem to read my clinical notes and the stressful life events from a few years ago and attribute my current symptoms to that. There’s been no mention in neurology reports of my exposure to kerosene. An expert measured the fume levels prior to me moving out. He said it was very high, even then, 2.5 years after the oil leak. He said I would have been living with extremely high levels prior to this given it had taken 2.5 years for the fumes to reduce to what he was now measuring.
Can you offer any advice at all? Do you think it’s worth me seeing a neuropsychiatrist or is it likely they’ll simply focus on psychological/social issues rather than anything biological?
The episodes are quite short lived. My head often jerks to the left or is pinned to my left shoulder. My whole left side goes rigid and is really uncomfortable like cramp. My back sometimes arches. I’m conscious but my awareness is altered and I can’t respond. My Mum says I dribble and recently she said I had white foam coming out of my mouth during an episode. My Mum was a nurse for 25 years and she said my episodes seemed like epileptic attacks to her. I don’t know if they are or not.
Can you offer any advice at all please. My quality of life has been massively reduced by these episodes and I’m quite limited in what I can do.
Thanks
I’m really tired afterwards. Sometimes I sleep/dose for a while. I’m very thirsty. My speech is slurred. I’m quite disorientated and my body feels physically wrecked like i’ve ran a marathon.
Dear Claire,
Thank you for your comment.
We are not medically trained and cannot help to diagnose you but we can offer you information about epilepsy.
You mention that anti-epileptic drugs (AEDs) have reduced the number of episodes that you have. AEDs work by reducing the unusual electrical activity in the brain which causes epileptic seizures. Therefore they should have no effect on dissociative seizures which do not involve this unusual electrical activity.
It is possible for one person to have both epileptic and dissociative seizures. An EEG is useful in helping to diagnose epilepsy so it could be worth requesting this.
We have information about the different seizure types. Muscles tightening down one side of the body can occur during a tonic seizure. Many people feel very tired and need to sleep after an epileptic seizure
Seizures being triggered by kerosene or mould exposure is not something we have heard about. But I did find this information produced by the UK Health Protection Agency which says that convulsions can be an effect of acute kerosene exposure: Kerosene Toxicological Overview.
Often doctors are unable to find a definite cause for someone’s epilepsy. But it can still be treated, most often with AEDs.
Some people with epilepsy have triggers for their seizures. Fatigue and stress are common triggers but physical activity is rare. A small number of people have photosensitive epilepsy which can be triggered by flashing lights.
I hope you are able to get some more answers from your doctors.
Regards,
Ashley
Epilepsy Action Helpline Team
Hi,
Back in February I started having severe seizures with full body convulsions. I was admitted to hospital when I had 15 in under 12 hours. I was monitored through the night and had a variety of scans and tests. The next morning I spoke with an epileptic nurse who suspected dissociative seizures as I had been through some trauma the year before. I was released as there was not anything they could do apart from keep an eye on me. I was still having around 5 a day. I was constantly supervised even going to the toilet. Finally at the end of April I was officially diagnosed with dissociative seizures. This actually calmed them down and they were not as often. However, due to me still having mental health issues my seizures are still occurring around 3 times a month so my doctor does not think it is safe for me to return to work. However, I am struggling severely financially and sometimes run out of food or can not pay bills as I do not get much from the government or for my disability. This is then causing more seizures which means I have to wait longer to go back to work as my doctor has said it is to risky. It is a vicious cycle and I wondered if you had any suggestions. I do not know what type of work I could do as computers can be a trigger if I am on them for a lengthy period of time. I am still waiting to see a neuropsychologist.
Thank you
Hi Nikita – it sounds like you’ve had a tough time with seizures and with the effect of living with seizures. It’s a positive step that you’ve had a diagnosis now. And I hope you aren’t waiting a long time for your follow up appointment for this.
It can be hard to manage with a hidden disability. We aren’t experts in dissociative seizures but there may be some things you can look at to help at the moment.
It could be worth checking with a benefits adviser if you’re getting all the benefits you’re entitled to while you aren’t working. You can contact the Citizen’s Advice Bureau directly or you can use the Turn2us advice finder to see what advisers are in your area.
I’m not sure from your message if you are on sick leave from work at the moment. For some people not being able to work can add to feelings of stress. Most people who have 3 seizures a month don’t need to be off work long term. And there is support for people who have disabilities at work. So it could be worth having a chat with your GP about this.
Scope have some helpful advice about disability and work. And you might also be able to get some information and guidance from one of the NEAD support organisations.
It can be really supportive to link up with others who understand what’s happening as well. Several of the NEAD support organisations in the link above have ways of doing this.
I hope you can find a way forwards that works for you.
Regards
Mags
Epilepsy Action Team