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.