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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 are the addresses of two websites which give  detailed, expert information. They are written by health professionals who have a special interest in NEAD.

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 two websites, which give much more detailed and expert information on NEAD. Both these websites are 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.

www.neadtrust.co.uk/
This website offers information, a forum, an email address and a postal address.

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

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 2014

Comments: read the 33 comments or add yours

Comments

I've just been told by neurologist that I probably have non-epelictic seziures . I'm very scared. I'm having trouble finding a doctor in my area that specializes in this. I just need someone to talk to to see what there therapy was like, and did it really help. This has taken every quality of life that I ever had. I feel helpless, and to be truthful, its hard to find a reason to keep going on. Please, if there is any one out there that I can talk to, please reply. I have so many questions that the internet or even the doctors can't or won't answer.
Desperaty, April
,

Submitted by April Tate on

Hi April

I’m sorry to learn that you are feeling so scared. There’s no denying that it can be really tough being told that you have non-epileptic seizures.

As you’re looking for someone to talk to and to find out other people’s experiences of therapy, I hope you will find it helpful to contact the NEAD Trust. Their aim is to relieve the suffering of people with this condition. They provide information, advice and support both online, and via social contact.

I hope this helps.

Amanda
Advice and Information Team

Submitted by AndyWeb on

hi april, my name is emma and i am 18 years old i got dignosed with non-epelictic seziures when i was 11 and i just want to let you know thing will get better you learn to live with it and you will notice signs just when it is about to happen. just alway talk about how you are feeling and dont bottle things up i would love if you could e-mail me back because i know how hard it is to try and talk to someone who dosent know what you are going through

emma
x

Submitted by emma on

hi there I am so sorry you feel like this, I am also suffering just like yourself and the only advice I have been given is to get the consultant or gp to refer you to the local mental health team, they have been amazing with me and have now got a safety net which I have never had before, so they have me on meds and text or ring me every few days, hope this helps you xx

Submitted by stephen thompson on

I started to have seizures only in my sleep 5 years ago starting in 2009. I was put on Dilantin then Phenytoin 100 mg 2xaday. The seizures stopped. I took the seizure meds for a year. But I was losing my memory and weaned myself off the medication. Now I don't take any seizure medication for my seizures and I have one maybe 2 a month. I only have my seizures in my sleep. I have not found any info. on non-epileptic seizures happening during sleep. All the info. I have read says they only happen when the person is awake. If you can, can you tell me if non-epileptic seizures happen during sleep? Only tonic-clonic grand mal seizures can happen when the person is awake or asleep. Thank you.

Submitted by Rebecca Miller on

Hi Rebecca

We only have basic information on non-epileptic seizures. So I’m afraid I don’t know the answer to your question. You may want to go to either of the websites we give at the bottom of the NEAD page. Both of them give much more specialised information. It may be that you need a second opinion on your diagnosis.

 Cherry

Advice and Information

Submitted by Cherry@Epilepsy... on

I have been told I have NEAD but have been having seizure for seven years the doctor told me im putting it on for attention I have wet myself bit my tounge and had sleep modes where I fall asleep and wake up with a different voice I have been told I act completely different I have had EEGS and nothing shows u is it possible that I am epileptic and it don't show up on the EEG

Submitted by melissa ormston on

Hi Melissa

If someone has an epileptic seizure during an EEG, this will almost always show up as epileptic activity. And if you have had video-telemetry, then the doctor will probably have had enough information from the EEG and the video to make a diagnosis.

Hopefully you have been able to see from our NEAD web pages that if you have NEAD, you should get help with that. I can imagine being told you’re putting it on, must have been upsetting. If it’s not easy talking to the specialist about this, maybe you could try your GP?

http://www.epilepsy.org.uk/info/diagnosis/non-epileptic-attack-disorder-nead#treatment

Cherry

Advice and Information Team

Submitted by Cherry on

Ive been having seizures for over a year now; been diagnosed as nead.However im not sure thats all thats going on as my seizures get worse round my period and wax and wane. Abnormalities were found in my left temperol lobe but nothing defintie epileptic. so im stuff suffering while they dont know. i have terrible migraines and nausea and blood sugar isues also; i just dont know what to do and its leaving me severely depressed.

Submitted by Ava on

Hi Ava

I’m sorry to hear of your situation. As you are feeling severely depressed, may I recommend that you talk to your family doctor about this, they maybe able to help you.

It can be very difficult for neurologists to diagnose epilepsy. There are many neurological conditions with similar symptoms. If you don’t already, you may wish to keep a diary of your seizures. A seizure diary can be a helpful record of what’s been happening, for you and your family doctor or neurologist.

You can use a seizure diary to record anything to do with your seizures. For example, when you have seizures, what your symptoms are, and any possible seizure triggers. If you feel that your seizures may be linked to your periods, you may also wish to record this in your diary.

If you no longer see a neurologist, you will need to talk to your family doctor about your symptoms and concerns. If necessary the family doctor can refer you to a neurologist.  Preferably to someone with a specialist interest in epilepsy, as there are many neurological conditions.

For your information, here’s a link to our info on non epileptic attacks. You will also find details of two organisations that specialise in this condition.Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

Hi,

I've more or less diagnosed myself with nead. Having been checked for epilepsy over this last year it appears to be nead however I have only discovered this by doing my own research. It's gone from having several a day to sometimes 1pm a month and start with a flowery smell. They last for sometimes two minutes then end however I feel drained and down afterwards? Does this fit in with nead.

Submitted by Darren Coulson on

Hi Darren

It must be frustrating not having a medical diagnosis after all this time. I do hope the information below will be of some help.

Epilepsy and NEAD can look very similar, and each condition can be difficult to diagnose. The usual tests that are given for epilepsy, such as an EEG and an MRI, can have a normal result. Also, nothing will show up on these tests if you have NEAD.

As NEAD isn’t epilepsy it would be best to make contact with people who have experience of this condition. So, I hope the links on this page will be of some help.

Rosanna

Advice and Information Team

Submitted by Rosanna on

I was told I had the condition by my doctor. I had been seeing several specialist for 10 years. He said I had a mental disorder. I cried - he didn't reall understand what is was. 2 montsh later I still havent had it explained. I lost my job because of it and now I have lost my benefits because the Government in the UK don't recognise it.

Submitted by sally kate taylor on

Hi Kate

We often hear from people who are finding it hard when told they have NEAD. This is especially true if you’ve spent years thinking you have epilepsy, and the doctor hasn’t explained the condition to you.

Below are the details for two websites, which give much more detailed and expert information on NEAD. Both these websites are written by, or with the support of health professionals who specialise in NEAD.

www.neadtrust.co.uk/
www.nonepilepticattacks.info

On the neadtrust.co.uk website, you will be able to repost your website comment and hopefully, you will hear from others who have had a similar experience to your self.

I hope you are able to get the support and advice you need.

Diane Wallace

Advice and Information Team

Submitted by Diane on

After i was left the hospital i was told i got non epileptic seizures. All test eeg and mri were fine. Does non epileptic seizures cause other thing like walking not right and also pain in right leg, hand not grasping when i want to pick thing, slur speech and cant get all the word out.Or foget what word i say.I did spend two weeks stuck in a hospital bed before i was a loud to move around, could this effect my walking,it has been nearly 8 weeks since i been on my feet or is it the epileptic seizures cause all these symptoms. How long does it take till some been stuck in bed for two week get back on they feet?

Submitted by charlene on

Hi Charlene

I’m sorry to hear you’ve been in bed for two weeks and that you haven’t been on your feet for 8 weeks. That’s a long time not being able to walk isn’t it? We aren’t aware of epileptic seizures being the cause of someone not being able to walk for this extended length of time.

You also asked about the symptoms of non-epileptic seizures (also known as NEAD) . The information we have about NEAD is basic, as it’s not epilepsy and is on this webpage. To be able to find out more about NEAD you could talk to your doctor, go the website links (on this webpage) or speak to others on the NEAD forum.  

I do hope this helps.

Rosanna
Advice and Information Team

Submitted by Rosanna@Epileps... on

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

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