In this section
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
This website has been set up by people with Non Epileptic Attack Disorder (NEAD) to provide information and support for those with NEAD and their family and friends. The medical information has been checked and approved by a medical advisor, Professor Markus Reuber, who specialises in Non Epileptic Attack Disorder.
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
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 2012To be reviewed July 2015