NEAD

NEAD

The Non-Epileptic Attack Disorder (NEAD) Service

People who are diagnosed with Non-Epileptic Attack Disorder (NEAD) experience temporary episodes of loss of control and/ or awareness that are caused by a build-up of physical and emotional stress.

We are a specialist team of psychological therapists who work with individuals to understand and manage the symptoms of NEAD.

We offer group information sessions as well as individual psychological therapy and training for other healthcare professionals.

Each person’s experience of NEAD is different, which means that the support that we provide will be guided by the specific needs of each individual.

To find out more about NEAD and the specialist NEAD service, have a look at the information and resources included on our webpage.

Referrals

In order to access the NEAD service, you need to have a confirmed diagnosis that has been made by a neurologist or neuropsychiatrist and be referred to us by a healthcare professional.

Below is information for healthcare professionals about making a referral.

Referral criteria

  • We accept referrals for individuals aged 16 and above.
  • The person you are referring must have a confirmed diagnosis of NEAD made by a neurologist or neuropsychiatrist. We ask that you do not make a referral until all investigations have been completed.
  • It is important that the diagnosis has been explained and that the patient is accepting of it.
  • We ask that you explain to patients that engagement with the NEAD service is typically a year. During this time they will need to be able to commit to having regular appointments (e.g. fortnightly) at Salford Royal Hospital.
  • Individuals who have comorbid conditions (e.g. Learning Disability, difficulties relating to substance use and/ or mental health diagnoses) are seen within the NEAD service. However if it is considered that a comorbid condition would get in the way of being able to engage with the interventions that we provide, they would be referred to an appropriate specialist service.

If you are considering referring someone to our service, the following questions should help you to decide whether they are ready to be referred:

Q: Has the diagnosis of NEAD been explained to the patient?

Q: Is the patient in agreement with diagnosis?

Q: Does the patient understand that NEAD is caused by physical and emotional stress building up in the body?

Q: Is the patient ready and able to commit to attending the NEAD information group (see leaflet for more information) at Salford Royal Hospital?

Q: Is the patient ready and able to commit to attending regular individual therapy appointments for a minimum of 6 months at Salford Royal Hospital?

If the answer is no to any of the above questions, please consider having a further discussion with the patient before making a referral.

If they are not in agreement with the diagnosis or ready to commit to having regular appointments, it is unlikely that a referral would be accepted.

If a referral is accepted, the patient will be added to our waiting list.

Please be aware that we are only able to bring an appointment forwards in cases where a high level of risk has been highlighted by the healthcare professional who made the referral.

 

What is Non-Epileptic Attack Disorder (NEAD)?

People with Non-Epileptic Attack Disorder (NEAD) experience episodes of temporary loss of control.

During a NEAD episode people can experience symptoms that affect movement (for instance - shaking or falling) as well as changes to their hearing or vision.

Symptoms can also affect awareness (such as feeling confused, being unresponsive or blacking out).

NEAD is a natural response to danger and is not an indication that something is medically wrong or that there is damage to the brain or nervous system.

 

Why does NEAD happen?

A helpful way to think about NEAD is to imagine a set of traffic lights (see traffic lights sheet).

When we are in the green zone we are best able to focus on the things that we want to do and feel connected with the people who are important to us.  Ideally we want to spend as much time as possible in this zone.

When we experience physical (e.g. pain, illness, injury) and/ or emotional difficulties (e.g. worrying thoughts, feeling under pressure), hormones such as adrenaline and cortisol are released into the body.

This is called the “fight or flight” response – a natural response that humans (and most other animals) developed to help us to fight or run away from dangers.

During this response, we experience physical changes (e.g. faster heart rate, feeling hot, and butterflies in the stomach) and a shift in our emotions (e.g. fear, panic).

We may also experience changes in our thinking (e.g. racing thoughts, increased alertness) and behaviour (e.g., sticking to set routines and familiar places).

This can be thought of as being in the “amber” zone (see traffic lights sheet).

This can be really helpful in situations when we are faced with an immediate physical danger.

This is because it means that blood and oxygen is pumped to our muscles so that we can fight or run away.

This same response also happens when we are faced with stresses that do not pose an immediate physical danger (e.g. worries about the future, running late for an appointment, sitting an exam).

Once the stress has passed, we usually need more rest than usual to get back into the green zone.

This temporary shift from green to amber and back to green is healthy and helps to increase our ability to cope with future stresses.

Unfortunately, if we have been or are going through really difficult experiences without the chance to rest and recover, we can get stuck in the amber zone.

This can be for many weeks, months, or sometimes even years.

It can become so normal to us that we don’t even feel it.

Being in the amber zone for too long can eventually cause us to go into the red zone (also known as the freeze response).

This is a response that developed as a way to protect us from harm in situations that we are unable to change or escape from.

We might notice being inactive, sleeping a lot, feeling numb, having difficulty controlling movement and feeling distant.

It is when we are in the red zone that NEAD episodes can happen.

It is important to understand that being in the red zone is your body and mind’s natural way of protecting you from danger.

Being diagnosed with NEAD means that this protective response is happening much more frequently than it needs to – it has become an involuntary habit for the body and mind to react in this way.

This response can become more sensitive over time which means that it may be triggered now by things that seem small.

The reasons why this habit has developed are not always obvious at first, because everyone’s lives are different. 

 

What can I do?

Helpful strategies include:

  • Noticing: This means noticing which zone you are in. This will take practice; you may find it helpful to keep a diary (see traffic light diary).
  • Strategies: Once you are able to identify which zone you are in, you can use strategies, such as breathing (see ‘Breathing Strategy’) and grounding (see ‘Grounding Strategies’) to get to the green zone. This will take practice too.
  • Managing activity level: Not having enough time to rest and look after ourselves can mean that we stay in the amber zone.

Being inactive can also mean that we stay in the amber zone. It is important therefore to find a balance between doing too much and doing too little.

  • Psychological strategies: working with a psychological therapist to identify and understand the reasons why you spend too much time in the amber/ red zones.

You can then learn new ways to manage difficult thoughts, feelings and responses to difficult experiences.

Strategies for managing NEAD are helpful for anyone, whether they have NEAD or not.

This is because we all move in and out of the green, amber and red zones.

 

 

Frequently Asked Questions

 

How common is Non-Epileptic Attack Disorder (NEAD)?

Although most people have not heard of NEAD before being given the diagnosis, it is a fairly common condition.

It is estimated that about 20,000 people in the UK have this diagnosis – but it could be more.

About 1 out of every 5 people who see a doctor because of seizure-like events go on to have a diagnosis of NEAD (Kotsoupoulos et al., 2003).

The number of referrals made to our service is increasing.  

This shows that healthcare professionals are becoming more aware of the condition and the diagnosis is becoming increasingly common.

 

Are there any other names for NEAD?

There are many other names used to describe NEAD.

These include: dissociative seizures, psychogenic seizures, functional seizures and historically pseudo-seizures.  

 

What’s the difference between NEAD and epilepsy?

NEAD and epileptic seizures can look and feel similar.

This is because both NEAD episodes and epileptic seizures can involve symptoms that affect movement, senses and awareness.

The main difference is what causes them to happen.

NEAD episodes are caused by a build-up of physical and emotional stress.

Epileptic seizures are caused by abnormal electrical activity in the brain.

NEAD is often thought to be epilepsy at first, but Neurologists and Neuropsychiatrists are specially trained to tell the difference.

 

Is it possible to have both NEAD and epilepsy?

Yes. Many people who experience NEAD have other diagnoses, including epilepsy.

 

Is there any medication for NEAD?

The recommended treatment for NEAD is psychological therapy.

There is no medical treatment for NEAD because it is not caused by disease or damage to the body.

 

I am not stressed, how can this be psychological?

NEAD can happen to anyone but usually happens in people who have been or are going through some really difficult experiences.

This includes experiences that cause physical stress (e.g. injury or illness) as well as emotional stress (e.g. worries about the future, relationship difficulties or coping with uncomfortable memories).

Often people with NEAD have been in the ‘amber zone’ for such a long time that it has become so ‘normal’ that they don’t notice it (see ‘What is NEAD’ and ‘Traffic Lights’).

Perhaps you could try completing the traffic light diary (see ‘Traffic Light Diary’).

This will help you to notice when you are in the green, amber and red zones.

 

Why do I have episodes when I am feeling relaxed?

It is very common to experience episodes when doing something relaxing.

Often people with NEAD have been in the ‘amber zone’ for such a long time that it has become ‘normal’ to them.

This makes it hard to notice when you are in the ‘amber zone’ or ‘red zone’ (see ‘What is NEAD’).

 

How long will I wait for an appointment?

The number of referrals we receive is increasing.

Everybody who is referred to the service is placed on the waiting list.

This means that there can be a long wait for your first appointment.

We will offer you an appointment as soon as you reach the top of the waiting list.

We hope that the information and resources included on this webpage will be useful whilst you wait.

 

What will I have to talk about at my first appointment?

Your therapist will ask you questions about your experience of NEAD and how it has impacted on your life.

They will also ask you questions that will help them to get to know you (e.g. questions about your relationships, employment history and health) and what’s important to you (e.g. your hopes for future and what you would like to be doing).

 

Can someone come to my appointments with me?

We know it can be hard to talk to someone new, so you are welcome to bring someone along to your assessment appointments.

We hope that with time you will feel comfortable enough to attend your sessions alone.

This will provide you with the opportunity to speak openly with your therapist and find sessions more beneficial. 

 

Will I get better?

People diagnosed with NEAD can lead full and satisfying lives.

Many people find that once they gain an understanding of NEAD and practice strategies to manage the symptoms, episodes stop happening as frequently.

Some people do completely stop having episodes.

Others find that they might continue to have occasional episodes but that understanding the condition and how to manage it means that they are better able to do the things that are important to them.

 

I have a diagnosis of NEAD, can I drive?

Please visit the Driver and Vehicle Licensing Agency (DVLA) website for guidance about driving:

https://www.gov.uk/guidance/neurological-disorders-assessing-fitness-to-drive#epilepsy-and-seizures

 

Can I continue to work?

We would strongly encourage you to continue to engage in all aspects of your life.

Experiencing NEAD can make things more difficult at work which means that you may benefit from extra support or changes to your role.

If you are currently employed, it may be helpful to talk to your manager to ensure that you remain safe and supported at work.

Often people find it helpful to tell their work colleagues about NEAD and how to respond if they have an episode.

Please see ‘Tips for Managing NEAD’ for guidance to share with others.

 

 

Downloads

NEAD - In My Experience
pdf document 187 KB
NEAD - Managing NEAD - Grounding
pdf document 245 KB
NEAD - Tips For Managing NEAD
pdf document 197 KB
NEAD - Traffic Light Diary
pdf document 483 KB
NEAD - Traffic Lights
pdf document 277 KB
Understanding NEAD Leaflet
pdf document 552 KB
The NEAD Service 2020
pdf document 729 KB