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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

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

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

neurokid.co.uk
This is a website for children and young people with dissociative seizures.

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.

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.

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

  • Updated September 2015
    To be reviewed September 2018

Comments: read the 22 comments or add yours

Comments

"Non-epileptic attacks happen for psychological reasons rather than physical ones." If the brain and mind are the same physical entity, then this distinction may fit all medical textbooks, but it is not logical.

Submitted by Researcher on

Hi

Thanks for your comment.

What we are saying is epilepsy is due to electrical activity that is happening in our brain. An epileptic seizure happens when there is a sudden burst of intense electrical activity in the brain. With NEAD there is not this activity.

Regards
Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

The brain and the mind aren't the same. There's lots of aspects to the brain that aren't conscious, subconscious or unconscious (such as it's cellular and metabolic processes). There's many aspects to the mind that aren't in the brain (your peripheral nervous system and your environment - i can be in your mind but not your brain!).

Submitted by JohnB on

Hi I am a little confused here. When you say pseudo fit are you saying that is a non tonic clonic fit. Can somebody who is diagnosed with NEAD walk around and have orientation to their surroundings ? During one of these episodes ? Thanks

Submitted by drayklah on

Hi Draklah

We’re not experts on non-epileptic seizures. But we have certainly spoken to people diagnosed with NEAD who have remained conscious during a seizure.

However it is possible to have an epileptic seizure such as a focal seizure, where, although your consciousness would be altered, it would still be possible to walk around.

I hope that helps.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

I had 2 ' blackouts' 6 months apart and went to my GP just after the second one as my left leg felt strange and I mentioned the blackouts. I had to stop driving on GP advise and saw neurologist and had MRI eeg and ecg nothing shows up but diagnosed as suspicious for seizures and I have been discharged but put on Lamotrigine . That was a year ago .and I have not taken the medication at all. I feel nothing has been taken into account that I had 5 family members including my Mother and my Husband die within a 2 year period just 12 months before the first ' blackout' and I looked after 3 of them and also had to pay for 2 funerals. Recently I arranged bereavement counselling for myself and found it to be very helpful. Now however I have hit a problem I have applied for my driving licence back and am worried my GP will inform them I am not taking the medication. I am a young 70 and very active and normally well. What are your thoughts please

Submitted by fran turner on

Hi Fran

Thanks for your message. I’m sorry to hear you lost so many family members in such a short period of time. That must have been incredibly tough for you. I’m glad to hear the bereavement counselling has helped.

It is possible that not following your neurologist’s advice could stop you getting your driving licence back. In the UK, when you reapply for your licence you need to complete the medical questionnaire FEP1. On this you need to give details of any medications you take for the condition, with the dates of when you started and stopped them. You also need to sign a declaration confirming that you agree to follow your doctor’s advice about any treatment for epilepsy. It is a criminal offence to make a false declaration to obtain a driving licence. So if you told the DVLA that you were following your doctor’s advice, and they found out that you weren’t, it’s likely you would have your licence revoked and you could be prosecuted and fined. You might find it helps to read our information about driving and epilepsy.

Only you can decide how open to be with your GP. But if they think you’re taking lamotrigine when you’re not, they won’t have a full picture of your medical situation. This could cause problems if you need medical treatment in the future. It’s also worth bearing in mind that if the doctors believe you are taking lamotrigine and that this is controlling your seizures, they could see this as confirmation that you have epilepsy. If you are honest with your doctor and let them know that you have been seizure free without medication, they may agree that you don’t need to take it.

I hope this information helps you come to a decision about what to do next. If you have any further questions or would like to talk anything through, feel free to contact the Epilepsy Action Helpline.

Best wishes
Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

I had an eeg a few weeks ago and while going through the strobe lighting section I had a seizure. I have had a letter from the consultant which states I have no serious abnormality. My previous eeg stated I had a slight abnormality on my left side. I have had a few of these seizures this year, but had them about 10 years ago. The neuro couldn't decide whether it was epilepsy or not. I'm not due to see my neuro until may 2016.

Submitted by Debbie agambar on

Dear Debbie

What a confusing situation. Getting diagnosed with epilepsy can sometimes be difficult. The EEG is only recording what is happening in your brain at that time, so it can’t always prove that a person has epilepsy. But if you did have a seizure during your EEG and it was a seizure caused by epileptic activity that should show on your EEG results. If it didn’t, that would suggest that your seizure was not due to epilepsy.

It’s important for you to be seeing a doctor who specialises in epilepsy. Then you will have a better chance of getting a correct diagnosis. If you are not sure if you are seeing a specialist please contact our helpline team and they will check for you. You can either email helpline@epilepsy.org.uk  or phone the Epilepsy Helpline freephone 0808 800 5050. We are open Monday to Friday 8.30am until 5.30pm.

Diane
Advice and Information Services Officer, Epilepsy Action

Submitted by Diane@Epilepsy ... on

My daughter is a nearly 15yr old Asperian (ASD) girl. She was sectioned in Sep 15 to a phyciatric hospital where unlike before she is on anyi depressants anyi phycotic meds and whatever PRN she needs. Gor the last near 3 months she has been having seizures and feels there is something wrong the doctor has said that these are false seizures they say they have seen seizures and believe my daughters are accompanied by voluntary movements but I can hear in her voice that these upset her and that she doesnt even remember them. Also they take what little leave she has putside the unit and she feels she is being punished because they wont give her anything to stop them... they done EEG which was abnormal then decided to do a sleep EEG incase medication interfered the first test. Sleep EEG was normal. She also had a MRI which too was normal. They say its not a seizure because her obs are fine after unlike with epilepsy. Is this still be the case with NEAD seizures? I always believe her because the ASD mainly only leaves her saying as is and not making things up..its really say it as you see it. Please help what can i ask doctors to do to help her. DESPERATE MOM!

Submitted by Chantelle on

Dear Chantelle
Thank you for your post. It is confusing when doctors start talking about dissociative seizures. This can be because not many people have heard of this condition. As it can be difficult to accept and understand Dissociative Seizures if you haven’t already, you may wish to view these websites. You will find more information on the condition, and support from others with a diagnosis.

nonepilepticattackdisorder.org.uk
nonepilepticattacks.info

You raise lots of issues and I will do my best to answer them. But if you think we could help you by speaking with you please do contact us directly on the Epilepsy Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Dissociative seizures and epileptic seizures can appear and feel very similar. A person can experience a sense of upset or fear from both these experiences. As explained on this webpage, it can be difficult to tell the difference between the two. 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 the two conditions, is from an electroencephalogram (EEG).  In some cases the doctor may suggest using video-telemetry. This would involve your daughter wearing an EEG for a few days, and being observed by a video camera linked to the EEG machine. This makes it possible for any seizures she has to be recorded on video and EEG at the same time.

If your daughter has dissociative seizures, epilepsy medicine won't work for her. If her seizures don’t stop once she has a confirmed diagnosis, a number of more specialist treatments may be offered to her. This could be:

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

We are not aware of someone’s obs following a seizure being used as the only reason to say if they have epilepsy or not. Everyone is different and no two people will have the same obs.

I hope this is of help. Again if you think it will help to talk to our helpline please do give us a call.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

I've just bee diagnous with none epileptic attacks I'm feeling distraut by this as I'm having fits every week for the last 6months I'm about to loose me job as it involves useing a van don't know what to tell me boss fed up with all of this I'm 51 years old x

Submitted by Jill goode on

Hi,

My partner was diagnosed with NEAD in 2013 after his ex partner stopped access to his children after finding out he had begun a new relationship. During their relationship she was violent and manipulative and even now maintains control over him
because of the children.

The neuro specialist suggested this could be a major factor in bringing on his non epileptic seizures and that his seizures may even stop once the situation was resolved.

My partner got access to his children in 2014 and now sees them regularly and he has less to do with his ex partner than ever which has reduced his stress levels significantly.

His seizures calmed down in 2014 and became more manageable however they have never stopped. Over the last few weeks though his seizures have gotten worse than ever. Most days he is having more than 50 seizures a day, most of them occurring in the morning and as soon as he sits down after work of an evening.

Last week he self referred himself for CBT but has today been told that because he has been diagnosed with NEAD they are unable to treat him, despite the condition being linked to stress and anxiety.

He isn't living at the moment, he is barely existing. he is trying so hard to maintain a 'normal' life by going to work and exercising but it's getting more and more difficult. He is in constant pain, he is losing hours of time due to seizures and he literally has no break from them. His condition is making him severely depressed and it doesn't seem like it will ever get better as no one seems willing to help.

His brother was diagnosed with epilepsy in 2014 and has recently been told he has a combination of epilepsy and NEAD and that he has to come off his medication as it may be making his NEAD worse.

I think it may be possible that my partner could have epilepsy as well and have urged him to revisit his neuro specialist to request video monitoring. If it did transpire that he had both epilepsy and NEAD, how could this be treated if using epilepsy medication can worsen NEAD?

So far we have had absolutely no support and I fear that it something doesn't change then I will lose him either to injury or suicide. He has always been a healthy, active, confident person and now he is a shadow of who he used to be. His condition is stripping him of everything and no one seems to care. Do you have any suggestions who we could approach to get some real help?

Submitted by Samantha on

Dear Samantha

Thank you for your post.  It must be so hard for you both.

It would be best if your partner talked to his GP. As his seizures haven’t stopped the GP may refer him for specialist treatment for his NEAD. Cognitive behaviour therapy (CBT) is one possible treatment.

If you haven’t already, you may wish to view these websites. They offer information on NEAD, and support from others with a diagnosis of the condition.

nonepilepticattackdisorder.org.uk
www.nonepilepticattacks.info

When someone is first diagnosed with epilepsy, they are started on a low dose of epilepsy medicine. The dosage of this medicine is gradually increased until the seizures stop. This usually happens at what is referred to as the maintenance dose. But if someone has been misdiagnosed and has NEAD, not epilepsy, the epilepsy medicine will not stop their seizures. So as the seizures are not stopping the dosage keeps getting increased to above the maintenance dose. This high dose can, for some people, cause them to have more seizures.

If someone has epilepsy, their seizures are generally controlled within a maintenance dose. This means they shouldn’t reach too high a dose that would cause more seizures.

We are aware of people having both NEAD and epilepsy. With the right treatment, they can have their epilepsy controlled with epilepsy medicine that will not affect their NEAD seizures.

If your partner is no longer under a specialist, he will need to ask his GP to refer him. This would usually be to a neurologist. The ideal would be to someone with a specialist interest in epilepsy or NEAD.

You can contact our helpline team directly and we will see what epilepsy or NEAD specialist there are near to you. You can either 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 Advice and Information Team

Submitted by Diane@Epilepsy ... on

hello my partner has been diagnosed with epilepsy for 6 years his first episode was when he was 19 years old he was playing pool and felt warm and went to open window thats when he fell and took a grand mal siezure when he came around his pupils were dilated and he was angry and confussed almost as if he thought i had hit him he then calmed down on hearing his dads voice, he then took two more in that year and was put on keppra. it seemed the keppra was working for a year or so then they came back and got more frequent i began to notice he would have a siezure when he was stressed and he has a history of depression, anxiety and a difficult childhood he has also had head injuries. its so frustrating because in six years he has seen a neurologist once and his keppra increased last year, he had an mri done all came back normal, i have asked them to do an eeg but they say its not an accurate way of diagnosing epilepsy. he has been taken off Employment Sick allowance and now has no income because jobseekers say they cannot allow him to claim jobseekers if he is unfit for work yet the ESA say he is capable of work however work may be restricted. they also gave him 0 points for mental capability which i could not believe considering his history of anxiety and depression and to be honest anyone who knows him can see he is not mentally fit, i am so worried for him, his mental health is getting worse and i dont think he should be taking the keppra its not helping i feel they are creating some sort of chemical inbalance this week has been the worst so far he has took 3 siezures on wednesday and three on saturday night (he had been upset and depressed his close friend was murdered a few months ago and he has been crying and so angry about it) the last one he took was after a neighbour wrote a comment on facebook about him he was sat at the computer he read it and got annoyed he then ate his dinner and afterwards fell from the chair and took a siezure when he was coming around the front door knocked loudly he jumped up and ran to open the door his friend anton was there he ran at him and nearly put his friend over the front fence i had to grab him and hold him his pupils were fully dilated and i dont think he knew who i was or who his friend was he then went back into the house and locked me and the friend out my two kids were in the house my eldest let me in seconds later as soon as i came in i seen him trying to unlock the back door he was saying he was going to blow our heads off, i began to talk to him and tell him everything was ok and its me reagan his eyes came back to normal and he began to come back to us his whole body went like jelly and he dropped to the floor holding his head in his hands, when i told him what happened he couldnt believe it he cannot remember any of it. i am so frustrated he is getting no help from anyone and im scared things are getting worse he now feel like a bad person, useless and dangerous can you give me any advise and also can the keppra be damaging him in any way if it is NEADS (i feel this is what he has)

Submitted by Reagan byrne on

Dear Reagan
Thank you for your web comment. It sounds like you are having such a difficult time.

It is possible for people with epilepsy to develop something called post-ictal psychosis. Post-ictal refers to the period after a seizure. We aren’t medically trained, so we can’t say if this is what was happening for your partner. However, it is something worth considering. I am linking you to an article about post-ictal psychosis. I’m afraid it is fairly medical but I hope it will help a bit.

If it was post-ictal psychosis, the best way to get this under control is for your partner’s seizures to be under control. I think he really needs to go back to his GP and asks to be referred to a specialist (usually a neurologist) as a matter of some urgency. One thing that would really help the neurologist to understand what is happening would be for you to take a video when your partner has a seizure. However it would only be a good idea to do this if you felt completely safe to do so.

Your partner may need a full epilepsy review. This would involve looking at whether Keppra is the right medicine for him. Certainly Keppra can give some people major mood swings. So if your partner already suffers with anxiety and depression, this may not be the best epilepsy medicine for him. However, it is really important he doesn’t just stop taking it, because this could cause him to have a severe seizure. In answer to your question, taking an epilepsy medicine – Keppra or one of the many others available – if you have NEAD and not epilepsy is unlikely to be damaging. But it won’t be doing anything to treat the NEAD. This is another reason why it’s important for your partner to have an epilepsy review.

Also if he has a full review, the specialist may want to look again at whether he has the right diagnosis. Certainly NEAD (or dissociative seizures as we’re now calling them) is often missed as a diagnosis.

Your partner’s benefit situation sound really frustrating. If you haven’t already done so, I would strongly suggest visiting your local Citizens Advice Bureau. They may be able to help him get it sorted. Meanwhile here is all our information on benefits for people with epilepsy. In particular he may want to look at our information on Employment and Support Allowance.

I very much hope that your partner gets some proper support both with his epilepsy and his finances very soon.

Cherry
Epilepsy Action Advice and Information  team

Submitted by Cherry, Epileps... on

i am a former epilepsy patient some time i get a little fit is it ok? Or not my last seizure was 6 years before but nowadays due to restlessness i get a little fit is this often happen with former patients or this problem is getting me again?

Submitted by Sam on

Hello Sam
If you think you are having seizures, then it would be worth you talking to your family doctor about it. As you have had seizures before, your GP may refer you to a specialist doctor to explore what is happening further.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

Thank you for the information it was very helpful as my friend has dissociative seizures

Submitted by Tony Dunkling on

Hello. I had brain surgery- a right temporal craniotomy to remove a benign tumor almost 5 years ago. (My tumor was not diagnosed for two years prior to the surgery where I was experiencing so, so much pain in my head, so many weird sensations in my head and on the left side of my body, as well as nauseous and tasting metal.) Ever since the surgery I've still had all of those symptoms mentioned above; some days they are a constant and some days I feel perfectly normal. Within the past couple of weeks I've began to experience urinary and fecal incontinence. (With the fecal incontinece I also notice my left vein gets big and the left hand and arm feel tight/contracted.) I had my latest MRI yesterday but the results came back fine. I am not on medication. (Not do I have a desire to be due to the many side effects.) I am taking herbal supplements like fish oil and lion's mane for brain and nerve support (but only for 1 day now). I really want some direction to get relief. I'm reading so many online articles and individual accounts- some things I can agree I'm experiencing and some like grand mal seizures; I'm not. I do know that this is scary, confusing and disruptive to my everyday life and work. (I constantly feel seizure-like tingling on the left side of my face and entire body, my head hurts all over, but the pains and sensations fluctuate. I feel like ai may be experiencing hundreds of seizures each day because the feeling is pretty constant. Oh and there are times I hurt so bad that I feel like I want to throw up.) I didn't grow up with migraines or seizures. I am 45 and female. Any guidance would be most helpful.

Submitted by Melody on

Dear Melody

Thank you for your post.

Some people can develop epilepsy due to a brain tumour or brain surgery.  Generally it would be focal with or without tonic-clonic seizures. But as you can see on this page, it’s also possible for people to have dissociative seizures.

If you don’t already, it would be good to keep a diary. Not only listing what you experience but what people around you witness.

You can then show this diary to your specialist. If you are not under a specialist, you will need to talk to your family doctor. If necessary, they will to refer you to one. This would usually be to a neurologist. The ideal would be to someone with a specialist interest in epilepsy, as there are many different neurological conditions, and neurologists tend to specialise in different ones.

The epilepsy specialist may arrange for you to have an EEG tests as well as the MRI scans. Sometime an EEG can give the doctors some helpful information.

If we can be of any more help, please feel free to contact our helpline team directly. You can either 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

Thank you for the response. I began to keep a journal a few weeks ago. I thought it may better help my husband understand what I go through, and to show a doctor if need. I actually have a follow up consultation with a new neurologist next week. Hopefully they will be able to provide me more direction. I will continue to monitor this site and may contact the helpline after my consultation. Thank you for being responsive.

Submitted by Melody on