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Non-Epileptic Attack Disorder (NEAD)

In this section 

Introduction
Who this information is for
Different types of seizures
Different names for NEAD
Getting the right diagnosis
The difference between NEAD and epilepsy
What causes NEAD
Being told you have NEAD
Treatment
Getting better
More information 

Introduction

These web pages will give you some basic information about non-epileptic attack disorder (NEAD).

At the end of these web pages is the address of a website  which gives  detailed, expert information. This is written by health professionals who have a special interest in NEAD. There is also a link to the NEAD Trust Facebook page.

We cannot offer expert advice on NEAD. But we are providing this overview because lots of people come to us asking about NEAD. Our organisation is a natural place to start looking for this information. And we do know that it can be very upsetting to be told that you may have NEAD. So we hope this information will be useful.

Who this information is for

This information may be for you if:

  • you have just been diagnosed with NEAD
  • you already have a diagnosis of epilepsy and now be told that you may also have NEAD 
  • you have had a diagnosis of epilepsy for years and are now being told that you don’t have epilepsy, but that you may have NEAD
  • you are a family member, friend, carer or employer for example, trying to understand and support someone who has NEAD
  • you are wondering if you have NEAD.

Different types of seizures

There are a number of different reasons why people might have seizures. These could include things like faints or heart problems. Unlike seizures in NEAD, these seizures would be unlikely to be mistaken for epileptic seizures.

Different names for NEAD

You may also have heard NEAD called by some of these names: non-epileptic seizures, pseudo seizures, pseudo-epileptic seizures, psychogenic non-epileptic seizures. Most doctors prefer to talk about non-epileptic attacks.

Getting the right diagnosis

NEAD is often mistaken for epilepsy. It can be difficult to diagnose. Even experienced doctors can find this a challenge. But it’s very important to get the right diagnosis. This is because if you are given the wrong diagnosis, the doctor may prescribe you epilepsy medicines. These can have side-effects but will not control your seizures. Being on these medicines also means that the true cause of your seizures may never be investigated.

Sometimes people who have not been able to get seizure control are referred to a specialist epilepsy centre for assessment. It is possible they have a type of epilepsy that does not respond to epilepsy medicines. This is sometimes called intractable or refractory epilepsy. Some people, however, turn out to have NEAD rather than intractable or refractory epilepsy.

Some people have epilepsy and NEAD.

Telling the difference between NEAD and epilepsy

It can be difficult to tell the difference between an epileptic seizure and a non-epileptic attack. This is true even for a specialist.

One of the ways in which a professional will tell the difference between non-epileptic attacks 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 non-epileptic attack, an EEG will not show abnormal electrical activity.

The doctor may also suggest using video-telemetry. This involves wearing EEG equipment for a few days, and staying in a hospital room, so that any seizures can be recorded on video and EEG at the same time.

What causes NEAD

Non-epileptic attacks 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 electric activity in the brain.

Being told you have NEAD

It can be really tough to be told you have NEAD. This is especially true if you’ve spent years thinking you have epilepsy, and you’ve been trying to adapt to that. It is quite usual for it to take time to believe the new diagnosis. Also, if you are 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. NEAD is a real medical condition. And the attacks you experience with NEAD can be just as disruptive and unsettling as epileptic seizures. You will need the support of friends, family and medical people during this time of adjustment.

Treatment

Once you have a diagnosis of NEAD, your doctor is likely to want to reduce your epilepsy medicine. This is unless you also have epilepsy. It is very important that epilepsy medicines are reduced gradually and with medical guidance. Reducing epilepsy medicine too quickly could cause a seizure.

You may also be offered some talking therapy. This could be with the consultant or a psychologist or psychotherapist. If you have not been offered talking therapy, you could talk to your family doctor about the possibility of this.

Getting better

When you are first told you have NEAD, you may find it difficult to accept the diagnosis. So you may also feel reluctant to take up any suggestions about treatment. When you are ready though, it may be really useful to think carefully about any treatment choices.

Here is a useful message from the health professionals who wrote the non-epileptic attacks website below.

You didn’t bring the attacks on, but you can help yourself to get better.

More information

Below are the details for a website and a Facebook page. The website gives much more detailed and expert information on NEAD. The  website is written by, or with the support of health professionals who specialise in NEAD.

www.nonepilepticattacks.info
As well as a wide range of information, the website includes a leaflet which you can download. You are also invited to send in your account of life with NEAD.

Nead Trust Facebook page

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you


We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.
Code: 
F012.02

Epilepsy Action would like to thank Dr Marcus 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 July 2012
    To be reviewed July 2015

Comments: read the 33 comments or add yours

Comments

My nephew was told he has NEAD after 2 episodes of seizure. The question was asked if his maternal grandfather had the same affliction. Is there a genetic component involved?

Submitted by Jerry on

My dad was diagnosed with Nead about 5 years ago when I was 12. it is really difficult being a young carer and the stress has effected my family. my dad has limited mobility, collapses, forgets everything that's happened that day, forgets who my family is, wets himself whilst in a fit, because quite raciest ( which isn't him), and needs help with everything pretty much. Hes on about 32 tablets a day and its not helping the main triggers of these fits are

bright lights
loud noises
crowded places
screaming children
reflection off mirrors and a bit more

I would just like to know if anyone can help or if anyone has overcome this disability as the dad I loved and are close to has changed due to this disease hes tried killing himself twice because of it please can someone help

Submitted by David Sims on

Hi David

I am so sorry to hear things have become so difficult for you and your dad. The link gives you our information about NEAD, but it also links you to two very good websites which are specifically about NEAD. One of them has a forum you or your dad may be interested in joining.

But it does really sound like you could both do with some support. Have you tried asking your local adult services department about an assessment for you both? It may be there are things that they can offer or at least tell you about.

Also if there is a Carers Centre near you, this may be another place both of you could get some support.

I do really hope things improve for you both very soon.

Cherry

Advice and Information Team

Submitted by Cherry on

Is there a genetic component to NEAD.(Grandfather of 17 year old recently diagnosed male had schizophenia (form not known)

Submitted by Jerry Roos on

We are not aware of one Jerry. You could ask on the NEAD Trust website.  

Kathy

Advice and Information Team

Submitted by Kathy on

My son was having seizures for past 2years and had know help and know seaport from doctors and as a result of this had a seizure when taking dog out fell in a brook and died I am his heartbroken mum and I feel like he has been very let down

Submitted by Carol gwinnutt on

Carol

I’m really sorry to hear about your son’s death. If you would like to speak to us about his treatment, please call the Epilepsy Helpline freephone 0808 800 5050. Alternatively, you could speak with our colleagues at SUDEP Action. SUDEP stands for Sudden Unexpected Death in Epilepsy, and they would be very interested to hear about your son, and to support you and his family.

Kathy

Advice and Information Team

Submitted by Kathy on

Hi, after 15 years of medication and being treated for epilepsy, I have just been told that I have dissociative non epileptic seizures, and have started seeing a phycologist. I am so frightened and confused as to why it has taken so long to get this diagnosis. Would anyone talk with me about how they cope and feel with their diagnosis. Thanks Suzanne.

Submitted by Suzanne hope on

Hi Suzanne

There are other people who have been in the same situation as you.  If you visit the website www.neadtrust.co.uk/ you can join a forum, where you can contact others.  

I hope this is of help. If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Yours sincerely

Diane

Submitted by Diane on

This has me curious. I started having seizures a few years ago. I din't even know I was having them until my boyfriend asked how long I had been having them. It took him a while to convince me. Actually it took having one at my job & being shown the security video of it to convince me. CT scans, EEGs & an MRI have shown nothing. They were not able to get a seizure on the EEG. It took a few tries to find a med that I could take without the side effects being worse than the seizures. Now on a fairly low dose I have gone a year without a full blown on the floor seizure. I was having what my neuro called micro seizures about a month ago but a small increase in the meds stopped them. The lack of anything on tests makes me wonder if this is NEAD. The only other answer my neurologist had back 7 years ago when we discussed history was that I may have had some undiagnosed concussions as a child/teenager when I was playing sports. Also when I was in a car accident. They may have played a roll in things.

Submitted by Jess on

Dear Jess

It sounds like you have been having a difficult time. But great that your seizures seem to be under control now.

From what you say, it sounds like your doctors think what you have is epilepsy rather than NEAD. And it is possible that what your doctor is calling micro-seizures, could in fact be focal seizures.

Epilepsy is diagnosed by putting a range of pieces of information together.  So even if all your tests didn’t show anything, it is still possible that you have epilepsy.

I hope that’s useful information for you.

Cherry

Advice and Information Team

Submitted by Cherry on

my daughter started having seizures when she was 5 yrs old,shes almost 9 now.All the doctors talked about were breath holding attacks.she was tested for epilepsy which were negative.now she has been discharged from the pediatric department.The seizures only happened when she was upset and emotional.it starts with a high pitched wail then she starts shaking with her arms and legs stiffened.they only last about 15/20 seconds.She remembers nothing about them.last weekend she had an attack sat in a chair an hour before bedtime,calmed down and seemed fine.going upstairs to bed she had another at the top of the stairs an fell to the bottom hitting her head on the edge of a radiator which looked like she'd been hit with an axe.the doctor has now referred us to the local C.A.M.S. team.just wondered if you could shed any light on her condition as we seem to be getting nowhere and are at our wits end.thanks

Submitted by steven haigh on

Hi Steven

I can imagine what a difficult time you are having at the moment. It is very worrying when you don’t know exactly what is causing your daughter’s symptoms.

Unfortunately, as we are not a medical association, it’s not possible for us to tell you what is happening to your daughter. I do hope that C.A.M.S. will be able to get you some answers.

If we can help by providing any information about epilepsy, please don’t hesitate to get in touch with us again.

Best wishes

Amanda

Advice and Information Team.

Submitted by amanda on

Hello. I have grand mal seizures only while I am sleeping. I first started to have seizures in 2009. I was put on Dilantin 100 mg 2xaday, then it was changed to Phenytoin 100 mg 2xaday, then changed to Tegretol XR 100. 1 tab every 12 hours. All three of these AED's stopped the grand mal seizures. But I had to stop taking the AED because I lost my job and had no health insurance anymore to pay for them. I have 1 maybe 2 seizures a month. All the seizures I have only happen while I am sleeping. The last dr. appt. I had, the dr. who first diagnosed me as having grand mal seizures based on what my boyfriend told him what happens during my seizures, that I stop breathing and my face and lips turn blue, said now he thinks my seizures are psychosomatic seizures. He said that only because the EEG test I had was negative and showed no seizure activity. But in my understanding, psychosomatic seizures do not stop with AED's, and my seizures did stop with them. So that proves I have real grand mal seizures. Since I have no health insurance and I am currently unemployed looking for work, is there any way I can go see a doctor for my seizures and see if they are really grand mal seizures? Thank you.

Submitted by Rebecca on

Dear Rebecca

Thank you for your contact.

As we are a UK based epilepsy charity, we don’t know how the health system works in America. May we suggest you contact the Epilepsy Foundation of America.  We hope they will be able to advice you on how to obtain a second opinion.

We hope you are able to get the support you need.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

My sister in law lives in West Wales and I believe she has NEADs although I'm not sure the doctor has diagnosed that. How does the family go about making sure the diagnosis is the correct one and getting the appropriate referal? Especially as I'm not convinced the local doctor will know anything about this condition?

Submitted by Rachael on

Hi Rachael

Here is our information about NEAD. At the bottom of the webpage there are links to two websites which are specifically about NEAD.

It is possible to have both epilepsy seizures and NEAD. Either way, your sister-in law would need to see a specialist for a diagnosis. If she is already seeing a consultant and she is not happy with them, it may be possible to ask for a second opinion. She would do this either through the consultant or her family doctor, depending on local arrangements..

One of the most reliable ways of checking whether someone has NEAD is by video-telemetry. If someone has a seizure while they are having an EEG, this epileptic activity will show up on an EEG. In video-telemetry you have a continuous EEG and a video on you. If someone has a seizure during this time, the EEG will show whether it was an epileptic or a non-epileptic seizure.

I do hope this answers your question.

Cherry

Advice and Information Team

Submitted by Cherry on

Hi I have NDEA and don't get any warning signs before it has now started to take over my life

Submitted by Bernadette. Storey on

Well here goes, I started having seizures about 6 weeks ago. At first is was small now they are very scary. I went into hospital and the monitored me. They told me it was non epileptic seizures. I know they are the experts, this feels so real. Sometimes I sound drunk, my hands r deformed for no reason. I smack my lips out of the blue. I feel tired a lot. I have a hard time saying what I want to say. It comes out wrong. I get confused. This is happening when I am not having a seizures. I am stumped.....If this is mental. ...why can I not control it. I am a happy person, love life and enjoy my life. This just feels like the wrong diagnose. Do any of the rest of you feel this way?

Submitted by belle on

Hi Belle

Thanks for your message. This must be a very confusing and difficult time for you. You’ll see on this webpage we have links to specialist organisations dedicated to NEAD, which you may find useful. It might also be helpful for you to log on to our forum, forum4e, to speak with other people who have similar experiences.

Sacha

Advice and Information Team

Submitted by Sacha on

I have just come back from the inquest of my son who died on 3/12/13 he was having none eperlectic sezures fo past 2 year doctors never helped him just gave him antidepresents he was found dead after falling in a stream he got out and his heart stopped it feel doctors let him down they said he died of natural causes but I don't understand as he was healthy apart from the sizures that we're taking his life over carol

Submitted by Carol gwinnutt on

I was told I had NEAD from a neurologist even though I had abnormalities they couldn't explain. When I went to a bigger hospital that's well know they told me in fact I have epilespy and gave me keppra. I haven't had a seizure since I got this medicine except once or twice. Is it possible to be misdiagnosed with NEAD? Do you know how likely it is if possible?

Submitted by Meleah on

Hi Meleah

Thanks for your question. Sounds like a confusing and difficult situation. But it’s good to learn things have started to improve for you.

NEAD can be difficult to diagnose, even by experienced doctors. It’s possible to be misdiagnosed with NEAD but we don’t have any figures, you may find such information on the NEAD website http://www.nonepilepticattacks.info/.    

NEAD is often mistaken for epilepsy. It’s also possible to have both NEAD and epilepsy. The fact that you feel the Keppra is helping could be an indication that your seizures are epilepsy related. It would be best to talk to your epilepsy specialist or epilepsy nurse for specifics about your diagnosis.                                                                                                                                                                        

Sacha

Advice & Information Team

Submitted by Sacha-Epilepsy ... on

My 15 year old child has just been diagnosed with Nead. Southampton General Hospital diagnosed her. They did this by looking at her fit. There was no ecg testing. (sorry if I am getting the terminology wrong - this is new to me). She has a scoliosis and has for many years complained of a bad back. She used to go to the Southampton Scoliosis clinic until she was 12 years old and then her consultant died. The new consultant took her off their list and it has been said to my by the doctors in Poole Hospital that they did this in error. In the last year she has started to have terrible spasms. These increased and in September she was admitted to hospital with 12 - 14 hour spasms. As nead suffers Im sure you know and understand the horror of these spasms. We then found out that her curve had got worse and we were refered back to Southampton Clinic who only now have given us a date to be seen in February next year. She has been mislead throughout the process and has become increasingly depressed and her spasams have worsened. I can see partly because of the frustration of 'no one listening' or 'understanding' her. Her life has been stollen away with no urgency on the part of the NHS. Has anyone else only been diagnosed on just a viewing (15mins) at bedside during a fit? She is now in hospital and she is a mess. Please help me. I have no problems with Private messages. I wont friend you though, I hope you understand. Thank you. If you think you can help me then please do.

Submitted by Cathy Cheyne on

Dear Cathy

I am sorry to hear what a hard time your daughter is having.

We do have some basic information on non-epileptic seizures, as I’m guessing you’ve seen. And at the bottom of our web pages is a link to a site which specialises in non-epileptic seizures.

As you will see from our information the most reliable way to distinguish between epileptic and non-epileptic seizures is with video-telemetry. But some non-epileptic seizures are so unusual that it may be possible for a professional to make a diagnosis after seeing a single seizure.

You may be interested in looking at some research on spinal myoclonus. This is a condition which can be cause by damage to the neck. We don’t know about more about this condition but came across it while doing some research.

The important thing, whatever her diagnosis, is that she gets appropriate treatment or support with this. I do hope this happens for her soon.

Cherry

Advice and Information Team

Submitted by Cherry-Epilepsy... on

hi for the last 2 year my daughter has been taking epileptic drugs,she is 14 years in feb 2013 she had a abnormal eeg told she has epilepsy,started meds,then in may 2013 she had a video eeg told she had non epileptic seizures on a friday told to reduce her meds then on the monday got a call to say they got it wrong she has both that the video eeg was abnormal,now a year an a half on they are saying non epileptic seizure again reduce meds but keeped her on lamictal in case she has a seizure just dont no what to think anymore form them

Submitted by ann fitzpatrick on

Hi Ann

Thanks for your comment. That sounds like a really frustrating and confusing situation. It is entirely possible to have epileptic and non-epileptic seizures.

The best way to be sure about whether a seizure is epileptic or non-epileptic is to have video-telemetry. I am not completely sure whether your daughter has had this done.

If not, or if it didn’t give enough information before, I would strongly suggest asking for it to happen.

If your daughter still has the same neurologist as made the mistake before, you might want to talk to your GP about getting a second opinion.

I hope that helps.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry@Epilepsy... on

she had a video-telemetry. done that they said was normal on the friday then i got a call on the monday to say it was abnormal and they said she had both now a another doctor is saying that it was normal after a year and a half but in feb 2013 she did have an abnormal one and put on meds,she was on epilim and lamictal at the time of the video-telemetry. its all a mess now the school said they cant let her into the school because they need to no whats going on,the dr that said this has put in the letter no midazolam,tranfer to hospital,or medical intervention,but i cant understand it all myself because she takes different types of turns,and how are they ment to no the differents between them

Submitted by ann fitzpatrick on

Hi Ann

You raise lots of issues and I think we could help you most be speaking with you, rather than trying to help you on the website. If you would like to do that, please contact the Epilepsy Helpline freephone 0808 800 5050, and we will talk about your daughters situation with you.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane@Epilepsy ... on

I had a nocturnal grand mal suizure, then had another nocturnal one eight months later. I have been in a stressful relationship and also had some very stressful problems in the family. The family issues were a few ago however. No family history of epilepsy and MRi came back negative. All blood and other test negative too. Do not smoke or even drink alcohol. A friend of mines wife has epilepsy and has said he believes mine are non epilectic. My main question is can you really have a NOCTURNAL grand mal non epilectic suizure ? I am 47 years old and never had any head injuries throughout my life either.
Many thanks and kind regards in advance.

Submitted by martin on

Hi Martin

Thanks for your question. It’s possible to have any type of seizure during sleep. Non-epileptic seizures can be very difficult to diagnose, best done by a qualified specialist.

For most people with epilepsy the cause is never known. You don’t need a family history with epilepsy, a head injury, to be a smoker, or a drinker to be diagnosed with epilepsy. Also, tests results are often inconclusive. Epilepsy specialists make a diagnoses based mainly on symptoms.

If you think you may have NEAD, it’s best to talk to your epilepsy specialist or epilepsy nurse. The treatment for NEAD is not the same as for epilepsy. Epilepsy medicines do not help with non-epileptic seizures, and could make things worse.

The most reliable way to confirm whether someone is having an epileptic or non-epileptic seizure is by having a video-telemetry test. Your neurologist may decide this would help.

I hope things start to improve for you soon.

Sacha
Epilepsy Action Advice and Information Team

Submitted by Sacha, Epilepsy... on

I have had seizure since october this year. I have struggled in the padt with my mental health and I am mortified to find out I have nead. I struggling to cope with the diagnosis and feel hopeless. I spent 12 days in hospital having upto 4 seizures a day and has now caused me to suffer so bad with sciatica that I am on crutches. I am scared to go back to work in fear of having seizures there and to ehat they are going to think about me when they read about this disorder. I just dont know what to do.
Im waiting to get an appointment to start psychotherapy jusy hope I can get the support sooner rather than later.
Bridie

Submitted by Bridie on

Hi Bridie

It can be difficult coming to terms with a diagnosis of NEAD. You shouldn’t feel uncomfortable with your diagnosis. It’s a real health condition. And the attacks you experience with NEAD can be just as disruptive and unsettling as epileptic seizures. You will still need the support from your friends, family, work and medical team.

If you haven’t already, visit the Non-Epileptic Attacks website. Hopefully you will find it both helpful and encouraging.

Regards
Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

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