Non-Epileptic Attack Disorder (NEAD)
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Last updated 28 Jul 2009, review date due 28 Jan 2010
Introduction
If you have been told that you have NEAD it may be the case that you have received little other information. It is possible that, along with other people who have NEAD, you feel at a loss as to what it means and what to do next. Many other people in this situation have turned to Epilepsy Action for assistance. This is why we have created this page on our website.
However, because NEAD is not epilepsy and is therefore not within our main area of knowledge, we have not attempted to go into the subject in great depth. This page is intended as a general overview. We hope it is a helpful introduction to the subject.
Different types of seizures
Seizures can happen for many reasons. They are not always a symptom of epilepsy. These seizures that are not epilepsy are referred to as organic (see glossary) in some cases and as psychogenic (see glossary) in others. In organic seizures there is a physical reason why they happen. Examples of these are when they are part of a heart condition or diabetes. In psychogenic seizures, on the other hand, there is no physical reason. Other organisations can provide information on other conditions, such as diabetes: our information will concentrate on psychogenic seizures.
Comparing epileptic and psychogenic seizures
You will see that we often compare NEAD to epileptic seizures. We have done this because people who ask us about NEAD usually want to know what the difference is.
Epileptic seizures occur when there is a surge of electrical activity in the brain (a change in brain activity). During a psychogenic seizure there is no change in brain activity. People who experience psychogenic seizures usually do so because they are psychologically or emotionally troubled in some way.
Terminology
Psychogenic seizures also have other names: some that you may come across are pseudoseizures, pseudo-epileptic seizures, and non-epileptic attack disorder (NEAD). NEAD is the more modern term.
What happens in NEAD?
If you have NEAD you will appear to have an epileptic seizure. Just as in epilepsy, this seizure can take many different forms. The possible symptoms are too many to describe in detail here, but some examples are the movement of a limb or limbs, changes in behaviour, some or total loss of consciousness. The seizures may last a short while or go on for a long time. They might start suddenly or begin very gradually. The fact that the symptoms are so varied is one of the reasons it is difficult to diagnose NEAD.
What has caused my NEAD?
Statistics vary, depending on which study is used. However, on average, 20 per cent of people referred to specialist epilepsy centres because their epilepsy is difficult to control turn out to have NEAD and not epilepsy. NEAD is more common in women and often begins in young adulthood. It can occur in childhood, adolescence and in mature age.
Diagnosing NEAD
As NEAD can be mistaken for epilepsy, it can be difficult to diagnose. This is true, even when the doctor has considerable experience is diagnosing NEAD. But it is extremely important that you do have an accurate diagnosis. For example some people with undiagnosed NEAD find themselves taking ever-increasing amounts of powerful anti-epileptic drugs (AEDs) that do nothing to control the attacks. To make matters worse, the real cause of the attacks is overlooked and is therefore not treated.
A number of people with NEAD are referred to specialist epilepsy centres because none of the AEDs they have tried has been successful in controlling the seizures. Doctors may assume, therefore, that they have intractable epilepsy.
The fact that AEDs have had no effect on a person's seizures is a major reason why doctors might investigate the possibility of NEAD. Another reason they might suspect NEAD is that what happens during a seizure is not typical of an epileptic seizure. In both these instances, however, it is unwise to jump to the conclusion that it is NEAD. Partly this is because a small number of people's seizures are truly resistant to AEDs and partly because some seizures are not typical of epilepsy even though they are epileptic. A small number of people have epileptic seizures and NEAD.
There are a number of tests available that can help diagnose NEAD. These include an EEG, video telemetry and a head-up tilting test. None of the tests alone can diagnose NEAD. The main way NEAD is diagnosed is by taking a careful account of what happens during the seizures from the person and eyewitnesses.
It can be very disturbing to be diagnosed with NEAD. You might feel embarrassed or ashamed because you think it must mean you are 'putting on' a seizure. Although a small number of people deliberately mimic seizures, the majority of people with NEAD have no control over them. The seizures are just as disruptive and unpredictable as epileptic seizures can be.
Treatment
The first step in treating NEAD is helping you and your family to understand your condition. For example, you may find it difficult to accept that you have NEAD, particularly if you thought you had epilepsy for many years. Although you might be relieved to discover that you do not have epilepsy, it is possible that you also feel bewildered. You will need support and understanding from your family and friends as well as your doctor or epilepsy nurse.
Ongoing treatment for your NEAD might be with a psychologist, psychiatrist or psychotherapist and might include some drug treatments. AEDs, however, are not effective and, unless you have epilepsy as well, these will usually be discontinued. This is likely to be a gradual process as stopping taking AEDs suddenly can trigger an epileptic seizure.
Some people who contact us report that they are no longer receiving treatment for epilepsy, now that they have a diagnosis of NEAD. Unfortunately, they also report that they are not receiving any treatment for their NEAD. NEAD is a real medical condition. If you are in this situation, it is important that you talk to your GP, so that you can both look at the treatment options.
Will I get better?
Often seizures get worse for a while when treatment is first started. This does not necessarily mean that the diagnosis or treatment is wrong. It can take weeks or months before NEAD improves. Some people may feel reluctant to undertake psychological or psychiatric treatment and occasionally NEAD does improve without treatment. However, if a definite diagnosis has been made and you are continuing to experience NEAD, it is important to consider all the options available, including psychological and/or psychiatric treatment.
There is a forum for people with NEAD.
Glossary
| Organic | Where there is a physical change in an organ |
|
Psychogenic |
Of mental rather than organic origin |
| Intractable | Difficult to control |
| EEG | A test that looks at someone's brainwave patterns. Certain patterns may indicate epilepsy. |
| Video telemetry | A test where someone is videoed during normal activities and has a type of EEG at the same time. |
| Head-up tiling test | A test where someone lies on a special table, which is tilted to different angles. |
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
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Comments
Hi I thought that this may help some people so here are a few things that trigger my Tonic-clonic fits and my NEAD fits and also some of the signs I get before I have them (which is extremely rare as I hardly get any signs or warning)
*PLEASE REMEMBER: not everyone has these triggers & signs other people may have completely different ones to what are below these triggers are what trigger my fits and the signs are what I sometimes have.*
>Tonic-Clonic: Flashing Images, Lack of sleep, Stress, Repeating moving things and images (like a moving website advert or an escalator (where the yellow line at the end of the step disappears over and over again or appears)
>Signs: I don’t normally get a warning, but my partner says that sometimes when I'm leading up to a tonic-clonic I don’t sleep even if I have been up for 24 hours I'm still wide awake, also I stare and have a slower response to questions I become extremely forgetful and he says that at times I become obsessive and do things I do not normally do
But most of the time I don’t get any signs or warnings before I have one.
>Psychogenic NEAD: Lack of sleep, Stress, Worrying, When I dream or think about my past.
>Signs: I become agitated, bad mood swings (I just blow up at my partner for no reason), I can’t keep still, I ask for things over and over again
*PLEASE REMEMBER: not everyone has these triggers & signs other people may have completely different ones to what are above these triggers are what trigger my fits and the signs are what I sometimes have.*
Hi I’m 22,
I have had fits for 5 years now they started when I was with my x-bf when I was 17 & I ended up in hospital many times from them as they would either last for ages or I would stop breathing. The fits lasted from anything from 40 seconds up to 5 hours with the short fits I had a habit of stopping breathing, so they sent me for an eeg with the flashing light in my face & it was clear, but the night I had it, when I was back home I had a really bad fit & ended up in A&E, my x-bf over heard one of the Dr's saying that I was an hypochondriac, so they sent me home when I came round, over the weeks the fits where getting worse & none of the Dr’s at the hospital believed me or even at the Dr’s surgery I was with at the time,
but after 6 months of been together we broke up, so I moved back in with my parents & I then met my current partner who dose everything for me & looks after me, we have been together for 4½ years now & we have 2 kids a boy who is 4 and a girl who is 2,
but since I was called a hypochondriac no one believed me about the fits apart from friends and family. But after countless trips to A&E I finally got a Dr to send me for a 3 day video eeg, this was only because I fitted in front of him & I stopped breathing & my heart had stopped, so they had to resuscitate me & when they had got be breathing & my heart going again 10 minuet later I fitted again & the same thing happened. From it all I ended up in hospital for 2 weeks.
By the time the appointment came for the video eeg I knew what would set a fit off the triggers would be flashing images things that repeated over and over (like a moving website advert) but they never set me off straight away like flashing images can take up to 24 hours to set me off (I don’t know why this is) so when I went in to hospital for the weekend for the eeg the night before the tests where to start I watched a film that I knew that would set me off (as it had done before) and the next day I had 2 fits which where caught on video the first one I was sat reading in the chair and I ended-up under the bed, which lasted a minute the second fit was 10 minutes later just the consultants where doing there rounds, I ended up with 4 consultants round my bed while I was fitting the fit lasted just under a minute (I only know this as I have seen the video clips of the fits, which honestly shocked me) and after they saw the fits and I had come round they said to me that I have the tonic-clonic seizures and that I also suffered from the Psychogenic NEAD seizures and they put me straight on to anti-epileptic drugs which cut down the tonic-clonic fits to nearly nothing so I just had to deal with the NEAD fits, but after been on the anti-epileptic drugs lamitroiging (I'm not sure on the spelling) for about 2 months I had a bad allergic reaction to them so I was taken off them and put on epillum which have dramatically cut down the tonic-clonic fits but not completely stopped them but before I was on anything I was having up to 7 fits every 2 to 3 days and now I have about 4 sometimes more sometimes less a month, and after I was diagnosed with the types of fits my current Dr apologised to my face, because of other Dr’s in the practice and at the hospital for not believing me which makes me think that there was something in my notes making them doubt me, but now I have no problem with my Dr but since they called me a hypochondriac I keep feeling like I am one when ever I have to go in to the hospital or to see my Dr and it makes me think that people are looking down there noses at me so in a way them calling me one has had a knock on effect which has caused my NEAD fits to worsen.
Thank you all for reading this (i just think i needed to get it all off my chest hopefuly i may be able to understand it all more now)
hi after reading ur post i realised that i'm not the only one that suffers from unpredictable "fits".
i'm only 18 and have only suffered since last may/june but i'm already at my wits end, i lost a baby last year and my doctor sed that it was bcoz of my fits. i only just found out that i am yet again pregnant and am scared that i will lose this one to! i ave had all the scans and everything and spent many weeks in hospital and yet there is supposed to be nothing wrong with me.
My family and friends are concerned for both my baby and my health and we dont know wot to do! my fiancee is really supportive and is annoyed with the docs because they wont do anything to help me.
when u found out u were pregnant were u given any advice for during the pregnancy?
Hi, i am 22 and was diagnosed with epilepsy when i was 17... when i was 19 i was addmitted to hospital and after not responding to any drugs they gave me they (the drs) decided they were psychogenic and that i was to be taken off all meds. (At this point i hadnt even had an eeg). I was discharged home even thought i was still fitting at least twice a day. I came back a month later for a "check up eeg" at this point i was still on meds but tailoring off, i was having a lucky week and had a normal eeg. Diagnosis pseudoseizures - stop your meds - go home is basically what came of that. For a year and a half after stopping meds i was having tonic clonics nearly every other day, complex partials everyday and my speech had become very slow and a lot of the time i was disorientated. i was a frequent flyer to the local a&e department as i tended to have flurrys of seizures where my parents where often told i was only doing it for attention and or i wanted the drugs... when i was 21 i was rushed in once again and had been fitting for 15 minutes when i got there... (this is all according to my parents as obviously i cannot remember anything) apparently i was put in a cubical and a curtain pulled around and they could hear outside saying its her again with the fake seizures shell come out of it when shes bored then we can send her home. It was only when my dad notice my face had gone completely grey and my hands and feet were blue that he started shouting... an on call dr took notice, my bp was 67 systolic, i had oxygen saturations of 78% and my heart rate was 150...to cut a long story short i then spent 2 weeks ventilated in intensive care where multiple eegs showed a lot of epileptic activity. I a now on keppra 1500mg BD and Clobazam 20mg OD and touch wood havent had a seizure for 6 months now
Hi,
My name is I am 19 and was diagnosed with non-epileptic seizures in june of 2009 it is now Febuary 2010 i am still suffering with them. My symptoms include: laughing for no reason, crying for no reason, heart palpatations, heart rate increasing (feels like i ran a marathon), acting like a 5 yrs old in the begining of the attacks i was sucking my thumb and watching children movies, i lose my speak, i feel shaky, confused, excessively tired, bad headaches. i dont know what to do about them and i need your help, please. I've been to a few doctors, and one of them said i was exaggerating these attacks and others havent't even heard of this before. I was fired from my job due to them i stopped school because of them and the worst part is, is that I am going to school for massage therapy and you have to be relaxed for your clients and this is a big problem for me because when I experience hem I am not my self. If there is anything you can do for me please call me or email me.
Thank you
Hi everyone
We wanted to let you all know that we are holding a conference in sheffield on April 24th 2010. This conference is your chance to have all your questions answered by the people who can really help you.
Speaking at the conference we have 2 neurologists who specialise in NEAD type seizures, Dr Markus Reuber and Dr Richard Grunewald. We also have Stephanie Howlett speaking about the treatment she gives to NEAD patients. There is also a talk from a carer and a sufferer giving there accounts of what it is like living everyday with this condition.
We would love to see you all at the conference, for more information on the conference or to buy tickets go to our website www.neadtrust.co.uk or email us at admin@neadtrust.co.uk.
is there anything to help convince my new dr to help me. i have been diagnosed with NEAD for the last 6 years but have been having seizures for the last 11 yet latley any dr i see tells me there is nothing wrong with me and to just get over it. what can i do. i have excepted my ilness and have learnt to deal with it but when drs refuse to help and turn me away it is enfuryaiting
My daughter has been diagnosed with photosensitive epilepsy 3 years ago. From November 2008 she has had attacks where she just falls on floor unconcious and can be out from 2 mins upto 30 mins, last week my daughter was diagnosed with NEAD as well as her epilepsy. She is having up to 40 a day falling down stairs, nearly drowned in the swimming baths. Is been sent home from school everyday, so I have had to pack in my job is there any benefits or any help anywhere for this disorder?
hi all,
I am an 19 year old women, I have been having "fits" since I was 2. Althought from the ages of 2 to 8 the doctors said I had white breath holding attacks, when I was 11 I started passing out, these lasted till I was 15. The doctors didn't know what they where, put me on 2 different types of tablets both which did not work. These where just me passing out and I could have up to 50 a day which proved a big problem while I was younger. When I was 18 I had my first seizure. That was scary. I have now been having the seizure for a year and a half and the doctors just decided it is probs epilepsy. Although nothing turned up on the scans and stuff they did. But the doctors said that doesnt always show up. They have just started me on tablets but not under control. My boyfriend, who tries to be supportive but he has doubts. He doesnt think it is epilepsy even though he isnt a doctor. I will take anything the doctor tells me, I just want it to stop and I can go back to be normal. Being 6 months pregnant is also a big scare, I dont want to have a fit while looking after my baby. I cant or not meant to go out by my self. I am at wits end.
The fits are in no order sometimes get a warning sometimes not. Can happen when I am happy or sad, when I am asleep or just got out of the bath, does anyone have simular symtons, if so reply to this comment and we maybe can help each other cope. Will welcome any help!
Hi all
I've just been told today that I have nead am a bit comfussed as had eperlepsy since the early age
I had convulsions up till I was 18mths old then at the age of seven had a stroke then when I got invoved in a relationship
I had 3 children first bone was ok 2nd misscarge at 5mths 3rd child had difficulties
In the time I was carreing last few months started having fits ,am been monited as am at a centre
Called the david lewis center for eperlepsy ,am comfussed in a lot of things as only having mild
Ones here wich they say are not epeleptic fits as wave pattens don't fit in as a fit, don't understand
As I've had all scans done loads of times and that's what they had said been on carbmazpine
Tergtal,lamatgine ,eplim,kappra,clazabam,fenitone and others they have tryed all theis and am
Still the same theve left me on the lamatgine took me off the others can someone help me as
Don't understand ,had bells porsly a few times as well ,sorry about some spelling sometimes I get mixed up spelling woords
Am in a relationship with someone else know been with him 4 sometime he's helped me a lot .
Can enyone help with my question. Thanks
Hi All
I have just been told I may have NEADS after nearly 30 yrs of siezures. It all started when I was born, I had a traumatic birth. I was In intensive care for a while. They used a suck cup to extract me and I had a huge lump on my head that took weeks to come down. I had co ordination problems, such as i could not thred a wooden needle through a button, when I would use cutlery I did not which hands to useether I was left or right handed) This all when they were doing aptitude test and IQ tests (My IQ was above average). A teacher at infant school who had, had expearience with Epilepsy noticed that I had what was then called SENS and she suggested my mother take me to my Dr and explain. I had 2 EEG's which were Abnormal(irritability on the Brain). Anyway when I was 13 I started having grand - mal siezures to which i was referered to a nurologist and diagnosed with epilepsy. I was put on epilim and after a couple of yrs it controlled my siezures. (I think I was clear 2 -3 yrs) After that I had them again and was refered to a different nurologist as the one i had seen previously had retired. I tried epilim agian which hdno effect and various other meds over 12 yrs. All the tabs had side effects that I suffered such as skin rashes, weight gain, irritability. One drug that appeared to limit my siezures was toperimite but it caused blood in my urine and kidney stones. I have recently had an MRI which showed up nothing and another EEG which showed the same. I went in recently for a video telemetary and had 3 minor episodes which showed on the video but did not register on the EEG. This is where NEADS has been suggested to me. I do have a problem with this diagnosis as I think that yes, it may be that some of this is tiggered by stress or intense suituations but It not indicate to full picture . I intend to maybe get a 2nd opinion because It has been a long time in coming to this conclusion. Could it be possible that I have NEADS and Epilepsy? What should I do as I finding hard to believe that absolutely everything is down to psycological trauma?
I'm 24 and I just started having seizures about a month ago. I have not been diagnosed with ANYTHING! I spent a week in the Neuro ICU, where I had over 200 seizures. All the tests they ran came back negative so the dr said I was either faking them or they were psychological but they gave no definate diagnosis. They put me on antiseizure meds and I've only had 3 since then so they seem to be working for the most part. Anyway, I found this info and I'm thinking maybe it could be NEAD but I have no idea. ZOE - I wanted to let you know I am a lesbian and also a victim of rape but I came out years ago and the rape was about 10 yrs ago so I dont know if that has anything to do with it.
Hi all, we have just launched a new online support group and info site for all concerned with NEAD.
Come visit us at http://nead-scotland.org
It's not just for people in Scotland - we welcome anyone from anywhere in the world.
We particularly welcome persons with little or no knowledge of this illness and would urge medical professionals to also provide input if and where possible.
hi,im a 30yr old mum of 2.When i was 3 my fits were first noticed by my mum and dad,after being referred to a neurologyst i had various tests;eeg's,etc and was eventually diagnosed with epilepsy.from then,and into adulthood,i was tried with allkinds of AED's tegratol made my fits less frequent but not for long,while others would do nothing.Over a year and half ago i stayed in hospital for a few days for video telemetry,and,months later i returned to the hospital for an appointment with my consultant,and was told the fit/s they recorded had no electrical activity,which lead them to diagnose NEAD,I was told that basically,it was something i would have to live with,as,it is untreatable with medication,when i asked what treatment was available for this NEAD i was told i could try a psycietrist or some sort of counciling,i told my consultant i would give anything a go, and so after a wait was sent 2 pages of information on NEAD and an appointment to see a psycietrist,months later i went,it was an hour session,filled in forms about my background,childhood ,(of which was a happy one) ,etc.At the end of the session i was made to feel that i was either imagining my fits,or something in my childhood triggered them,he seemed to have had very litte information,if any about me,and sent my doctor a letter to say he does'nt think i need to see him again-NOW IM TOTALLY LOST,i feels like theres little point,if any,going back to my doctor,and FEELS LIKE DCTORS,CONSULTANTS ETC HAVE WASHED THEIR HANDS OF ME-JUST LIKE THAT!!!!!!!!!!!!!! I mean,i know their not mirical workers but a little support from the medical profession for NEAD sufferers would be nice. - Sue,Middlesbrough