Greater Manchester Neurosciences Centre Non-Epileptic Attack Disorder

Similar documents
Non-epileptic attacks

How can clinical psychologists help with chronic pain?

Sleep deprived video electroencephalogram (EEG)

Post-traumatic amnesia following a traumatic brain injury

First seizure. Information for patients

Treatment Advice for Dissociative Attacks (non-epileptic attacks) from

non-epileptic seizures Describing dissociative seizures

Cerebral Venous Thrombosis (CVT)

Melatonin information

Hyperventilation Syndrome - what is it and how to manage it

The Blackouts Checklist i

After an Accident or Trauma. A leaflet for patients who have been involved in an accident or traumatic event.

This section will help you to identify and manage some of the more difficult emotional responses you may feel after diagnosis.

Panic. Information booklet. RDaSH leading the way with care

Recovering from a difficult birth.

University Staff Counselling Service

Recovering from a difficult birth

Your COPD action plan

Information for parents / carers of children and young people following a first seizure (without a temperature)

The Fainting Checklist

Home intravenous and intramuscular antibiotics

Panic. Easy read information

Psychogenic Blackouts

(4) Parents: Diagnosing epilepsy

Psychological preparation for natural disasters

Overcome your need for acceptance & approval of others

Needle Phobia: Overcoming your fear of injections

Cancer Health & Wellbeing Programme. Practical advice, information and support to help you move forward with your life after treatment

Sleep hygiene. Turnberg Building Department of Respiratory Medicine University Teaching Trust

Anxiety and relaxation

P A N A N X I E T Y C

TeensHealth.org A safe, private place to get doctor-approved information on health, emotions, and life. Anxiety Disorders. What Is Anxiety?

Barium swallow or meal

Post-Traumatic Stress Disorder

Problem Summary. * 1. Name

INFORMATION FOR PATIENTS. Let s Manage Pain

Occipital nerve block

Section 4 - Dealing with Anxious Thinking

WICKING DEMENTIA RESEARCH & EDUCATION CENTRE. Prof. Fran McInerney RN, BAppSci, MA, PhD Professor of Dementia Studies and Education

University Counselling Service

Myocardial perfusion (heart) scan - Nuclear Medicine

The transition to parenthood, mood changes, postnatal depression and post traumatic stress disorder

Living Life with Persistent Pain. A guide to improving your quality of life, in spite of pain

AKI - acute kidney injury

Not sure if a talking therapy is for you?

Stories of depression

Kidney Scan (DMSA) Turnberg Building Nuclear Medicine University Teaching Trust

Feeling low or anxious

Changes to your behaviour

maintaining gains and relapse prevention

Your Individual Management Plan

The Obstetrics and Gynaecology Health Psychology Service

University College Hospital

Overcome anxiety & fear of uncertainty

Anxiety. A self help guide. East Cheshire Hospice Millbank Drive Macclesfield Cheshire SK10 3DR

STAR-CENTER PUBLICATIONS. Services for Teens at Risk

did you feel sad or depressed? did you feel sad or depressed for most of the day, nearly every day?

Weekly standard dose. Paclitaxel (Taxol) and carboplatin

Salford Audiology Services

A guide to Getting an ADHD Assessment as an adult in Scotland

Understanding Complex Trauma

Coping with Sexually Transmitted Infections as a Result of Sexual Violence Pandora s Aquarium by Jackie and Kristy

COUNSELLING WITH PLYMOUTH UNIVERSITY

Palliative Care Asking the questions that matter to me

MALE LIBIDO- EBOOKLET

handouts for women 1. Self-test for depression symptoms in pregnancy and postpartum Edinburgh postnatal depression scale (epds) 2

How can I help reduce healthcare associated infections? Patient information leaflet Follow us on

Need to talk? A specialist psychological support service for people with cancer, their family and close friends

Nerve blocks for surgery on the shoulder, arm or hand

Psychiatry. Anxiety Begone!

MY TRACKING DIARY. MY Tracking. Diary TAKING ACTION AGAINST EPILEPSY

Mental Health Strategy. Easy Read

Electroconvulsive Therapy (ECT) Patient Information Leaflet

Working together with individuals, families, and medical professionals to offer support and information on Syncope. Do you suffer from unexplained...

What is Chronic Kidney Disease? (CKD)

Electroconvulsive Therapy (ECT) Patient Information Leaflet

Depression Care. Patient Education Script

Electroconvulsive Therapy (ECT) Patient Information Leaflet

Anxiety and Worries. How common is it?

THE INSPIRED LIVING MINDFULNESS MEDITATION PROGRAMME

Your Guide to a Smoke Free Future

Botulinum toxin injections for Blepharospasm

Your Safety System - a User s Guide.

Managing Inflammatory Arthritis. What to Discuss with Your Health Care Team

Neurobiology of Sexual Assault Trauma: Supportive Conversations with Victims

Quick Read Series. Information for people with seizure disorders

Needle biopsy of lung or pleura (lining of the lung) (guided by ultrasound or CT scanner)

First Fit. Emergency Department. Information for Patients. University Hospitals of Leicester. NHS Trust

5: Family, children and friends

Cancer and Relationships

risk Does my epilepsy put me at risk?

Chronic Inflammatory Demyelinating Polyneuropathy (C.I.D.P.)

Carboplatin & weekly paclitaxel (Taxol) (for anal cancer) Carboplatin and weekly paclitaxel (Taxol) (for anal cancer)

Support for Kidney Cancer

First aid for seizures

Flexible bronchoscopy

Psychological wellbeing in heart failure

ADHD clinic for adults Feedback on services for attention deficit hyperactivity disorder

Botulinum toxin injections for hemifacial spasm

Transcription:

Greater Manchester Neurosciences Centre Non-Epileptic Attack Disorder Clinical Sciences Building Department of Clinical Neuropsychology 0161 206 4694 G17111001W. Design Services, Salford Royal NHS Foundation Trust, All Rights Reserved 2017. Document for issue as handout.

G17111001W. Design Services, Salford Royal NHS Foundation Trust, Department of Clinical Neuropsychology, Clinical Sciences Building Salford Royal NHS Foundation Trust Stott Lane, Salford, M6 8HD Dr Antonia Kirkby and Miss Michelle Fairnie About the authors Dr Antonia Kirkby is a Clinical Neuropsychologist working at the Greater Manchester Neurosciences Centre, Hope Hospital. Her role involves co-ordinating psychological services for patients following the diagnosis of non-epileptic attack disorder (NEAD). She is an experienced therapist and the information in this booklet is derived from her clinical experience with clients as well as a review of the published literature. Michelle Fairnie is an Assistant Psychologist, also based at the Greater Manchester Neurosciences Centre. She is involved in the psychological assessments of clients who have non-epileptic attack disorder (NEAD), and assists with therapeutic interventions. Acknowledgements The authors would like to thank many people for contributing to the production of this booklet or for commenting on its content: Service users attending the neuroscience centre for psychological intervention as well as our neuroscience colleagues, particularly members of the Neuropsychology service and Department of Neurology. 1

Contents Page Introduction. 3 What is Non-Epileptic Attack Disorder (NEAD) and what is it not?.. 4 How is NEAD diagnosed?... 5 What are the symptoms of a Non-Epileptic Attack? 8 What happens when you have a Non-Epileptic Attack?. 10 Why do people develop NEAD?.. 11 What keeps it going 12 How is NEAD treated?... 16 Frequently asked questions... 17 Final exercise 21 Thought record sheet 22 G17111001W. Design Services, Salford Royal NHS Foundation Trust, 2

G17111001W. Design Services, Salford Royal NHS Foundation Trust, Introduction The Information contained in this booklet has been put together for anyone who has been diagnosed as having Non-Epileptic Attack Disorder (NEAD). The purpose of the booklet is to help people who have been diagnosed with NEAD, and their family and friends, understand the condition better. NEAD is a common condition that can affect up to half the number of people who are referred to Epilepsy clinics. NEAD is a condition that is caused by the build up of emotional stress in the body over time. Treatment is available for this condition, from a clinical psychologist. Within this booklet there are some exercises in blue boxes that a clinical psychologist may guide you through, alternatively you may wish to try them in your own time. 3

What is Non-Epileptic Attack Disorder (NEAD) - and what is it not? People can experience either Epileptic Seizures or Non-Epileptic Attacks or they can experience both. Definition of an Epileptic Seizure A sudden change in a person s behaviour (for example, falling to the ground, jerking movements, looking vacant, etc.) WITH an associated change in the electrical activity of the brain. During Epileptic Seizures, the brain produces abnormal electrical impulses, which stop it temporarily from working normally. Definition of a Non-Epileptic Attack A sudden change in a person s behaviour (for example, falling to the ground, jerking movements, looking vacant, etc.), but WITHOUT an associated change in the electrical activity of the brain. Non-Epileptic Attacks can look like Epileptic Seizures, but are not caused by abnormal electrical activity in the brain. There are other causes of blackouts, not due to Epilepsy, such as fainting attacks. In this booklet we will use the term NEAD to refer to those attacks, where the attacks have a psychological basis. If you have been given a diagnosis of NEAD, it means that the cause of the attack is NOT related to Epilepsy. If you have been given a diagnosis of NEAD and Epilepsy, it means that you can experience both attacks that ARE caused by Epilepsy AND attacks that ARE NOT caused by Epilepsy. Although some non-epileptic attacks can be caused by other physical health problems, these will have been excluded by the neurologist before you are referred for treatment. Here we are only talking about psychological Non- Epileptic Attacks. This means they are not due to a physical cause. What are psychological Non-Epileptic Attacks? People have different ways of dealing with easy or difficult situations - Non- Epileptic Attacks can happen when a person has had or is having difficulty coping. Non-Epileptic Attacks are their body s way of dealing with past, present or possible future problems or painful experiences. Psychological treatment can help people understand what is causing the attacks and learn ways of coping with the attacks, which may help reduce the number of attacks a person is having. There is a range of ways to describe psychological Non-Epileptic Attacks, for example, you may have heard them called; Psychogenic Seizures, Pseudoseizures or Pseudo-Epileptic Seizures, but in this booklet they will always be referred to as: Non-Epileptic Attacks G17111001W. Design Services, Salford Royal NHS Foundation Trust, 4

G17111001W. Design Services, Salford Royal NHS Foundation Trust, How is NEAD diagnosed? How is NEAD diagnosed? NEAD is a diagnosis of exclusion - this means that before a diagnosis of Non- Epileptic Attack Disorder can be made, Epilepsy has to be ruled out as a cause of the attacks. Non-Epileptic Attacks may appear to be very similar to Epileptic Seizures. This often makes it very difficult to distinguish between them. Therefore, people with NEAD are often prescribed anti-epileptic drugs (AEDs) initially, because it is difficult to tell whether a person has NEAD or Epilepsy. It is only when a person continues to have attacks, despite taking AEDs that a doctor may begin to think that the person has NEAD. If there is doubt about a person s diagnosis, they may be referred to a Neurosciences Centre for assessment, although this may happen a long time after the attacks first started. A number of investigations may be carried out: EEG (electroencephalogram) A test that looks at brainwave patterns, which produces certain patterns only if it is Epilepsy. If an EEG shows that a person s brain waves did not change before, during or after an attack this makes the diagnosis of NEAD more likely, although this cannot diagnose NEAD alone - each person needs to be assessed individually. Video Telemetry A test where someone is videoed during normal activities and has an EEG at the same time. Psychological Assessment People may be offered an appointment to see a psychologist to discuss their attacks. The psychologist may be able to identify specific life experiences that may make it more likely that a person develops Non-Epileptic Attacks. They may also be able to identify ways to help a person cope with their symptoms. MR Scan A test that looks at the structure of the brain. Less frequently Non-Epileptic Attacks can be due to medical problems, for example, heart problems, or fainting because of a sudden lowering of blood pressure. These physiological causes will need to be excluded so you may have other medical tests, such as blood tests. The results from all these tests, as well as the description of a person s attack, are taken into account when making a diagnosis of NEAD. Therefore it is helpful for a person s relative or friend to meet with the doctors too. 5

What investigations did you have? What was your understanding of the findings? Common reactions to a diagnosis of NEAD and why When a diagnosis of NEAD is made people may feel a variety of emotions/feelings. How did you feel when you were diagnosed with NEAD? G17111001W. Design Services, Salford Royal NHS Foundation Trust, 6

G17111001W. Design Services, Salford Royal NHS Foundation Trust, The following emotions are often felt after a diagnosis of NEAD has been given. How do they compare to yours? Anger Why did they get it wrong for so long? I felt deserted by the professionals I feel as though I ve been neglected and left to deal with it myself Why was I told I had Epilepsy? Uncertainty What now? It has taken so long are they sure this time? Relief At least now I know what the situation is I am in agreement (with the diagnosis). I felt for a long time that things were not right I thought my symptoms were stressrelated Confusion How can there be a different diagnosis by different doctors? How can one doctor think one thing (Epilepsy) and another doctor think another (NEAD)? I could understand Epilepsy, but not this (NEAD), Epilepsy is recognised, this isn t. Embarassed or Ashamed People will think they re not real Does this mean I m being told I have been putting it on? If they re due to stress, am I mad? Disbelief I thought the doctor was talking daft, I ve had them (attacks) since I was nine. I m not stressed, how can my attacks be due to stress? How can a physical symptom like this be due to stress? 7

What are the symptoms of a Non-Epileptic Attack? Just like Epileptic Seizures, Non-Epileptic Attacks can take different forms so people can have very different experiences. They may happen when a person is feeling stressed They may happen when a person is feeling happy They may last a short time or go on for a long time They may start suddenly or gradually They may occur while a person is asleep When do your attacks happen? How long do they go on for? People can also have a huge range of different types of physical symptoms during a Non- Epileptic Attack. Some people have a lot of symptoms whereas some people only have a few. Having these symptoms can be very unpleasant and upsetting as well as making your day-to-day life very difficult. What are your physical symptoms? G17111001W. Design Services, Salford Royal NHS Foundation Trust, 8

G17111001W. Design Services, Salford Royal NHS Foundation Trust, Physical symptoms of Non-Epileptic Attacks can include: Ringing in the ears Loss of consciousness Tightness in the throat Dry mouth Feeling of choking Difficulty speaking Headache Dizziness / light-headed Blurred vision Tense and stiff shoulders Numbness Tingling Butterflies Churning stomach Feeling sick Needing the toilet Incontinence Weakness in legs Legs like jelly Shaking limbs Racing heart Tight chest Unable to breathe Fast and shallow breathing Palpitations Hot and sweating Tense muscles, sore joints Other symptoms you might experience People may also experience other symptoms apart from those above that are present all the time, even when they are not having an attack. For example, people may feel low in mood (emotional symptom), have difficulty remembering things, worry a lot (thinking symptom), have difficulty sleeping, and feel tired all the time. They may be diagnosed with anxiety and/or depression. These symptoms are also caused by the build up of stress in the body over time. What symptoms do you have when you are not having an attack? 9

What happens when you have a Non-Epileptic Attack? One way of understanding what happens when a person has a Non-Epileptic Attack is to think that stress affects a person in the same way as gas affects a pressure cooker. The Pressure Cooker Model Non-Epileptic Attacks People have stresses that may be from the past, present or anticipated in the future. These stresses can be thought of as similar to the gas under the pressure cooker, heating it up. In everyday life these stresses lead to emotional and physical stress building up in the body. This stress can be thought of as similar to the steam that is building up in the pressure cooker. Emotional and physical stress building up in body Eventually this stress becomes too much to handle and a Non-Epileptic Attack occurs. This can be thought of as similar to the lid of the pressure cooker being blown off due to all the pressure within. So, the Non-Epileptic Attack can be likened to the pressure being blown out of the pressure-cooker. Stressful life events G17111001W. Design Services, Salford Royal NHS Foundation Trust, 10

G17111001W. Design Services, Salford Royal NHS Foundation Trust, Why do people develop NEAD? Although people may have a good understanding of their physical symptoms and what happens during an attack, they may still find it difficult to accept that stressful life events can play a part in causing these symptoms. Sometimes people find it difficult to identify what makes them stressed. It is helpful for people to think about past and present life experiences to make sense of this. What could your past stressful life events be? Past stressful life events Individuals may be more prone to developing Non-Epileptic Attacks because they have experienced certain past stressful life events. These may include past difficult situations that they have had to cope with, such as a bereavement or a divorce. Or they may have had a period of work stress or financial difficulties. It is not uncommon for people to have had difficult relationships with family members, that may be ongoing, that may have led to unpleasant emotions over the years. Sometimes people have experienced or witnessed physical violence, or been sexually abused, and have never been able to tell anyone about this. Often people find it difficult to talk to others about such experiences. All of these types of experiences can lead to the development of emotional and physical stress in the body, making it more likely that a person will have a Non-Epileptic Attack. 11

What keeps it going? Current stressful life events Once Non-Epileptic Attacks have started happening, current stressful life events can keep them going. The person might also be worried that what happened to them in the past, might happen to them again, even if this is unlikely. Current stressful life events may include difficult situations, such as arguments at home, financial worries, or problems at work. A person may still feel that the possibility of physical violence or sexual abuse is an ongoing risk. People may be worried about their health or the health of a relative, or they may feel stressed about the Non- Epileptic Attacks themselves. As mentioned previously, it is very common for people to have anxiety and depression if they have Non-Epileptic Attacks. This may have developed because of the attacks or may have existed before the attacks, so the worry about these feelings may also become a stressor. What could your current stressful life events be? G17111001W. Design Services, Salford Royal NHS Foundation Trust, 12

G17111001W. Design Services, Salford Royal NHS Foundation Trust, What if I m not stressed? It may be that the Non-Epileptic Attacks seem to happen when you are not stressed. Or you may not have identified any current stressful life events in the box above. If this is the case, it may be that you were stressed previously, but the emotional stress has taken time to build up before the Non-Epileptic Attacks have developed. Or, some people have difficulties recognising when they are stressed and what particular situations are stressful. Sometimes people don t feel stressed in difficult situations but start to experience the physical symptoms of Non-Epileptic Attacks instead. Other reasons why attacks keep on going In many cases, Non-Epileptic Attacks keep going because they are the body s way of protecting the person from having to deal with difficult situations. For example, for the child whose parents marriage is breaking down, the attacks may be regularly bringing the parents together. A treatment approach in this case might be to help the child voice his/her fears and eventually come to terms with what is happening. Or, for example, for an adult who has been sexually abused in childhood, attacks may unwittingly be a way of avoiding intimacy with a new partner, whereas a more beneficial approach might be to deal with the long-term effects of the abuse itself, perhaps in therapy. How does psychological stress lead to physical symptoms? It can be quite difficult to understand how stressful life events can make a person s body have Non-Epileptic Attacks. Psychologists use a diagram of five aspects of life experiences to help people understand what happens. Environment / Situation Behaviours Thoughts Physical Symptoms Emotions Notice that these five areas are interconnected by arrows. This means that each different aspect influences other aspects. For example, the type of environment we are in affects what we think about; how we think about things affects our emotions/mood and the way we feel physically; how we feel physically affects what we do/how we behave and what we think about, and so on. 13

It is useful to think about a specific situation to help us understand this better. Imagine that you are on your own in bed in your house at night when you hear a loud noise downstairs. What is the first thought that comes to your mind? A common reaction to hearing a loud noise downstairs when you are alone in the house is shown below: Environment / Situation Loud noise downstairs Thoughts What if it s a burglar Behaviours Hide under duvet Emotions Anxiety and fear How do you feel? What emotions do you have? Physical Symptoms Increased heart rate; sweating palpitations; feeling dizzy Other people may have a different reaction, which is shown below: Are you aware of any physical feelings in your body? Environment / Situation Loud noise downstairs Thoughts My husband / wife is back What do you do? Behaviours Shout hello to the person Emotions Happy Physical Symptoms Relaxed muscles G17111001W. Design Services, Salford Royal NHS Foundation Trust, 14

G17111001W. Design Services, Salford Royal NHS Foundation Trust, These two examples show that the same situation can trigger a series of different emotions, physical symptoms, and behaviours because the person has thought differently about the situation in the first place. When a person has an anxious thought about a burglar they feel anxious, experience physical symptoms of anxiety, and behave anxiously by trying to avoid the burglar. When a person has a happy thought about their partner coming home they feel happy, have relaxed muscles, and greet the person. Obviously these situations may not apply to everybody since some people who live alone may not have come up with the example above, or some people may own a pet and may have imagined that they thought the animal had knocked something over, making them feel annoyed. The important thing is to use your imagination to think through these two situations and see how and why they are different even if they do not directly apply to you. Thinking through these examples can help you understand your attacks. Some people are aware at the time of the attack and can identify examples of what happens to them, as shown below: Environment / Situation Thinking about getting on a bus Thoughts I m going to have a non-epileptic attack Behaviours Avoids getting on the bus Emotions Scared Physical Symptoms Increased heart rate; sweating palpitations; feeling dizzy If you are aware at the time of your attack try filling in your own example on the next page. Don t worry if you find this difficult, the psychologist will be able to help you with this later on. Some people are unaware during an attack but may experience some changes in their thoughts, emotions, feelings and behaviours just before an attack or earlier in the day. If this is you, then fill in your own example on the next page. 15

Environment / Situation Behaviours Thoughts Emotions How is NEAD treated? The first step of going for treatment may often be the hardest. People may feel uncomfortable with the diagnosis of NEAD or find it difficult to see how Non-Epileptic Attacks can be caused by stress. For this reason it is useful to talk to a professional who is trained in treating these symptoms - A clinical psychologist. Physical Symptoms Some people do not experience any changes in their thinking, emotions, feelings or behaviours at all. As mentioned earlier in the booklet, some people have Non-Epileptic Attacks when they are not stressed. This is because the person may have been stressed previously, but the emotional stress has taken time to build up before the Non-Epileptic Attacks happened. Or, some people have difficulties recognising when they are stressed and what particular situations are stressful. To help you continue to consider the relationships between your thoughts, emotions, physical symptoms and behaviours there is a Thought Record Sheet at the back of this booklet. The clinical psychologist can help you discover past and present stressful life events that may be causing the Non- Epileptic Attacks and keeping them going, for example, family problems, difficulties in a relationship, childhood abuse etc. Many people find that once they gain an understanding of why the Non-Epileptic Attacks started in the first place they are no longer concerned by these symptoms and they stop happening as frequently. Some people improve just by having a clear answer and explanation of the attacks. It may be difficult to accept that you have been diagnosed with NEAD when you have thought that you had Epilepsy for many years, although you may be relieved to discover that you do not have Epilepsy. Time to talk this through is important. People need support and understanding from family and friends. G17111001W. Design Services, Salford Royal NHS Foundation Trust, 16

G17111001W. Design Services, Salford Royal NHS Foundation Trust, Frequently asked questions Frequently asked questions How can relatives and friends help? There are simple things that relatives or friends can do that can help the person with Non-Epileptic Attacks. Most people are unsure what to do when they see a Non-Epileptic Attack. However, it is best if people who are present when an attack happens try to remain calm. Non-Epileptic Attacks often stop more quickly if the person having the attack is addressed in a calm way. It is important to remember that Non-Epileptic Attacks do not cause any damage to the brain, even if they go on for a long time. If a person has a Non-Epileptic Attack do not touch the person during the attack unless they are in immediate danger of serious injury. 1. Observe from a short distance to ensure the person is safe. 2. Speak to the person in a calm manner. Tell them where they are, who they are with and let them know that they are safe. If a person has a Non-Epileptic Attack and is in immediate danger (e.g. of injuring themselves by falling or banging their head): 1. Help the person to the floor and lie them on their side. 2. Ensure his or her head is protected with a cushion or something else, ask someone to assist if possible. It is important to remember that having attacks lasting over five minutes does not mean you have epilepsy, in fact sometimes Non-Epileptic Attacks can last longer than Epileptic ones. When the person s attack has finished, do not comment on it unless they mention it first. Sometimes, people feel confused immediately after having an attack and may not realise they have had one. Drawing attention to this can make people feel embarrassed. If the person has Epilepsy and NEAD, and it remains unclear if the person is having Epileptic Seizures or Non-Epileptic Attacks, an ambulance should be called if the episode goes on for more than five minutes. It is very common for relatives and friends to worry about leaving the person who has Non-Epileptic Attacks on their own. Over time this can lead to the person who has Non-Epileptic Attacks losing their independence, which can then lead to the development of depression and a loss of confidence. It is therefore best to encourage the person with Non-Epileptic Attacks to continue with their life as normally as they can. 17

What do psychologists do? Clinical psychologists are people who have trained in psychology. They are not medical doctors. They are different to psychiatrists because they treat peoples difficulties by helping them talk through their problems, not by prescribing medication. Psychological treatment is about teaching you strategies to help you cope with the symptoms of NEAD. Working together with a psychologist, you will be able to discover the cause(s) of your attacks, and what is keeping them going. They will then teach you techniques that help you gain some control over your symptoms. They may also help you with the other symptoms that you have at times that are separate from the attacks, if they think that this will help in the treatment of your attacks. The psychologist will work with you to generate goals that are achievable in a short time period. Sessions may involve giving you tasks to work on in between sessions and monitoring your progress on these tasks. You may also be asked to complete some questionnaires about your Non-Epileptic Attacks. Topics that may be discussed include: The history of your Non-Epileptic Attacks Your current situation What investigations you have had How you felt when you were diagnosed with NEAD When your attacks happen How long they go on for Your symptoms Your past stressful life events Your current stressful life events If you have stopped going out because you are worried about having an attack in public, the psychologist will help you learn strategies to overcome this difficulty. If you are feeling stressed the psychologist will help you learn techniques to feel more relaxed and to help overcome your worry. Often the upsetting events or stresses causing NEAD have been bottled up or blocked from memory, so some people may only work out why they have developed NEAD with help from a psychologist. The psychologist can also work with a person s relatives to help them learn strategies to cope with the Non-Epileptic Attacks. As mentioned previously, the way that a relative copes with a person s attacks can help them. G17111001W. Design Services, Salford Royal NHS Foundation Trust, 18

G17111001W. Design Services, Salford Royal NHS Foundation Trust, How quickly will I get better? It is important to remember that psychological treatment is not a quick fix and may take time. Some people with NEAD experience a reduction in their attacks quickly. However, individuals who have had NEAD for a long time sometimes take longer to experience a reduction in attacks. Occasionally, people may not notice any changes in their attacks but may feel more able to cope with them and that they interfere less with everyday life. Can I drive? The Drivers and Vehicle Licensing Authority (DVLA) decide this. They may require details of your Non-Epileptic Attacks from your neurologist in order to make this decision as to whether it is safe for you to drive. What about my benefits? If you are currently receiving benefits because you have attacks, a diagnosis of NEAD should not effect your benefit entitlement. Non-Epileptic Attacks can become a persistent and disabling problem, which can lead to people becoming dependent on their families and friends. It can also lead to people stopping working and having to receive benefits. This is why it is extremely important to diagnose NEAD as quickly as possible, so that appropriate treatment can be started. The overall aim of the psychological treatment is to enable people with Non-Epileptic Attacks to return to their normal way of living. 19

Other people who can help? The neurologist can help you understand whether, and to what extent, anti-epileptic medication is to change as a result of a diagnosis of NEAD. He/She will monitor progress as these changes are made and advise you about other types of medication that may be of benefit, for example, for depression and anxiety. If you do not have Epilepsy, your anti-epileptic drugs may gradually be stopped over time with the help of your neurologist (suddenly stopping anti-epileptic drugs could trigger an Epileptic Seizure). If you have both Epilepsy and Non- Epileptic Attacks, some anti-epileptic medication may be continued. One of the roles of the Epilepsy specialist nurse is to support people after they have received a diagnosis of NEAD (if you have Epilepsy too). He / she can advise you about how to manage medication changes and help you to cope better with the attacks with the support of the psychologist. Some patients may see a neuropsychiatrist. This is a medical doctor with expertise in both psychiatry and neurology, who can advise if you are suffering from a psychiatric condition. This may need separate treatment. You can also ask to see the hospital social worker or welfare rights officer who can provide you with information about financial implications of a diagnosis of NEAD and give you advice about the benefits or employment schemes that may be available to you. Some of these services may be available at your local hospital, others may only be available at the nearest neurosciences centre. If you prefer to be seen locally, your doctor should be able to advise you about clinical psychology or counselling services attached to the GP practice. For social services input, you can approach your local DSS or the citizens advice bureau. Useful websites Epilepsy Action www.epilepsy.org.uk Epilepsy Society https://www.epilepsysociety.org.uk Neuro Symptoms www.neurosymptoms.org Non Epileptic Attack Disorder www.nonepilepticattackdisorder.org.uk/ non-epileptic-attack-disorder G17111001W. Design Services, Salford Royal NHS Foundation Trust, 20

G17111001W. Design Services, Salford Royal NHS Foundation Trust, Final Exercise Final Exercise True or False? What do you think? How many did you get right? - Which answer shocked you? 1. I am to blame for the attacks 2. I can learn to control these attacks 3. It is all in my head 4. Sometimes, just being told once and for all that the attacks are Non-Epileptic can stop them 5. There is no cure for NEAD 6. Non-Epileptic Attacks are taken as seriously by professionals as epileptic attacks 7. Having Non-Epileptic Attacks means that I am mentally ill 8. Non-Epileptic Attacks are a rare occurrence 9. I can approach my GP for a referral to a clinical psychologist, to help me understand Non-Epileptic Attacks better. 10. Non-Epileptic Attacks are due to a physical cause. 6. TRUE. 7. FALSE. 8. FALSE. 9. TRUE. 10. FALSE 1. FALSE. 2. TRUE. 3. FALSE. 4. TRUE. 5. FALSE Answers Final thought Although this booklet may have answered some of your questions about NEAD, it is not intended to replace discussions with a psychologist. It can perhaps help you understand that you have a known and treatable condition. You are not alone having NEAD. Treatment is available and is effective for most people who seek it. 21

Thought record sheet Situation/ Trigger What happened? Where? When? Who with? Try to be specific Emotion/ Mood What emotion did I feel at that time? How intense was it? Physical sensations What did I notice in my body? Where did I feel it? Thoughts/ images/ memories What went through my mind? What I did/ What other people did adapted from: www.getselfhelp.co.uk G17111001W. Design Services, Salford Royal NHS Foundation Trust, 22

G17111001W. Design Services Salford Royal NHS Foundation Trust All Rights Reserved 2017 This document MUST NOT be photocopied Information Leaflet Control Policy: Unique Identifier: NOE59(17) Review Date: December 2019 For further information on this leaflet, it s references and sources used, please contact 0161 206 4694 Copies of this information are available in other languages and formats upon request. If you need this interpreting please telephone In accordance with the Equality Act we will make reasonable adjustments to enable individuals with disabilities, to access this treatment / service. Email: InterpretationandTrans@srft.nhs.uk Salford Royal operates a smoke-free policy. For advice on stopping smoking contact the Hospital Specialist Stop Smoking Service on 0161 206 1779 Salford Royal NHS Foundation Trust Stott Lane, Salford, Manchester, M6 8HD Telephone 0161 789 7373 www.srft.nhs.uk If you would like to become a Foundation Trust Member please visit: www.srft.nhs.uk/ for-members If you have any suggestions as to how this document could be improved in the future then please visit: http://www.srft.nhs.uk/ for-patients