Non-Epileptic Attack Disorder (NEAD)

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

Psychogenic

Intractable

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