Non-epileptic seizures (NES) or dissociative seizures are different from epilepsy as they have a different cause. If you, or someone you know, has been diagnosed with non-epileptic seizures it may be helpful for you to identify the type of seizures that are relevant to you and how you feel about them. Non-epileptic seizures (NES) are not caused by disrupted electrical activity in the brain and so are different from epilepsy. They can have a number of different causes.
What causes non-epileptic seizures?
Types of NES
Non-epileptic seizures (NES) can be divided into two types: organic non-epileptic seizures and psychogenic seizures.
These seizures have a physical cause (relating to the body). They include fainting (syncope) and metabolic (biochemical processes in the body) causes such as diabetes.
Because organic NES have a physical cause, they may be relatively easy to diagnose and the underlying cause can be found. For example, a faint may be diagnosed as being caused by a physical problem in the heart. In these cases, if the underlying cause can be treated the seizures will stop.
Some NES are called ‘psychogenic seizures’. 'Psychogenic' means they are caused by mental or emotional processes, rather than by a physical cause. Psychogenic seizures may happen when someone's reaction to painful or difficult thoughts and feelings affects them physically.
Psychogenic seizures include different types:
Dissociative seizures happen unconsciously, which means that the person has no control over them and they are not ‘put on’. This is the most common type of NES.
Panic attacks can happen in frightening situations, when remembering previous frightening experiences or in a situation that the person expects to be frightening. Panic attacks can cause sweating, palpitations (being able to feel your heart beat), trembling and difficulty breathing. The person may also lose consciousness and may shake (convulse).
Factitious seizures means that the person has some level of conscious control over them. An example of this is when seizures form part of Münchausen’s Syndrome, a rare psychiatric condition where a person is driven by a need to have medical investigations and treatments.
Other names for non-epileptic seizures
Non-epileptic seizures are sometimes known as non-epileptic attacks. People who have non-epileptic seizures may be described as having 'non-epileptic attack disorder' (NEAD).
These terms are not always helpful because they describe the condition by saying what it is not rather than by saying what it is.
NES used to be called 'pseudoseizures’ but this name is unhelpful because it sounds like the person is not having 'real' seizures or their seizures are deliberately 'put on'.
A newer name for non-epileptic seizures is 'dissociative seizures'. This is helpful because it does not describe seizures in terms of epilepsy. It is also recognised by the World Health Organization (this means that it is included in the International Classification of Diseases: a list of all known diseases and conditions).
How are non-epileptic seizures diagnosed?
If you have seizures, your GP will usually refer you to a specialist for diagnosis. This will usually be a neurologist to see if the seizures are epileptic. Or you may be referred to a psychiatrist or psychologist (as NES are usually classified as a psychiatric condition).
It may be easier for doctors to try and rule out possible physical causes first, including epilepsy. This will influence the types of tests you might have.
NES can be difficult to diagnose because they can appear similar to epileptic seizures. There are no symptoms that will definitely identify NES from epileptic seizures.
Taking a personal history
Tests used to find the cause of seizures cannot, on their own, confirm a diagnosis. However, taking a ‘personal history’ can help to find the cause of your seizures. This includes looking at:
your neurological history (about your brain and nervous system and its development)
your psychological development and mental health, including whether you have had depression or other psychiatric conditions, or have been subject to stress and trauma in the past
whether there is a family history of depression or other conditions
the history of your seizures, such as when they first started and when they happen
whether you have been diagnosed with epilepsy but your seizures have never been controlled with anti-epileptic drugs.
What happens during the seizure
Asking you about what happens during a seizure can be helpful to find the cause. If you don’t remember your seizures, you might like to bring someone to the appointment who has seen your seizures. See our guide to recording what happens during a seizure.
The specialist might ask you:
when your seizures happen
whether you get any warning before a seizure happens
what happens to you during the seizure (if you don’t remember, a witness could help describe what happens to you)
how long the seizures last
what you remember, if anything, about the seizure afterwards
how you feel afterwards and how long it takes you to recover.
Some tests are used to rule out other causes of seizures, including epilepsy.
Medical examinations and blood tests can be used to check your overall health and see if your seizures have a physical cause such as diabetes.
Brain scans such as CT (computerised tomography) or MRI (magnetic resonance imaging) are used to form a picture of your brain. This may show a physical cause for epileptic seizures, but would not usually be helpful in diagnosing NES.
An EEG (electroencephalogram) records the electrical activity of the brain. It is often used to see if seizures are caused by disrupted brain activity, which helps to diagnose epilepsy. NES are not caused by changes in brain activity.
Video telemetry involves having an EEG and being filmed at the same time. This compares what a person is doing with what is happening in their brain during the seizure, and can often show the difference between epileptic and non-epileptic seizures. This can help to diagnose epilepsy (if, during a seizure, your brain activity changes) or diagnose NES (if, during a seizure, your brain activity does not change).
If the tests show no neurological or physical cause for your seizures, and your specialist thinks it might be NES you may be referred to a psychiatrist or a psychologist for diagnosis.
Treatment may depend on the cause of your seizures, and your medical history. Your specialist may talk to you about what treatment options might be helpful.
Seizures that are not epileptic they will not be controlled by anti-epileptic drugs (AEDs).
If you already take AEDs, for example if you were previously diagnosed with epilepsy, your specialist may suggest you gradually reduce them. If you have NES and epilepsy, you will usually continue to take AEDs for your epileptic seizures.
If you also have anxiety or depression, your specialist might talk to you about whether other medication, such as anti-depressants, might be helpful.
Other forms of treatment
Psychotherapy is the recommended treatment for NES. Psychotherapy is the name for a group of different ‘talking’ therapies (treatments).
Mental health professionals, including psychiatrists and psychologists, are trained in different forms of psychotherapy.
Cognitive behavioural therapy (CBT) is often recommended for NES. CBT looks at how you think about things, how this affects you physically and emotionally and how it affects what you do (your behaviour). By changing the way you think about yourself, other people and the world around you, this may change the way that you behave. CBT tends to focus on how things are affecting you in the present, and ways to help you to view current situations more positively and cope with stressful events.
CBT can take several months or longer as it may take time for you to feel comfortable talking about your experiences and feelings.
Living with non-epileptic seizures
The general first aid guidelines for NES are the same as for epileptic seizures:
keep the person safe from injury or harm, and only move them if they are in danger
if they have fallen, put something soft under their head to protect it
allow the seizure to happen, don’t restrain or hold them down
stay with them until they have recovered.
Keeping a normal routine if possible
For some people, NES may disrupt their daily life or they may want to avoid activities in case they have a seizure. However, studies show that it can help to keep as normal a routine as possible, and try to take part in activities with other people, so as to avoid becoming isolated and anxious, which may make seizures more likely.
Treatment for NES may work best when someone is active in life, including working, studying or taking prt in other activities which are meaningful or satisfying. If you are working, your employer has a responsibility to keep you and other employees safe at work. To do this, they need to know about any medical conditions that may affect you at work, including NES. Your employer may need to do a ‘risk assessment’ to see if your condition might affect safety at work.
You may be able to apply for financial help, depending on how your seizures affect your daily life. Whatever the cause, seizures can affect different areas of life for some people.
Driving regulations for the UK are set by the Driver and Vehicle Licensing Agency (DVLA).
You will need to stop driving, tell the DVLA that you have NES, and return your licence to them.
Each case may be looked at individually, but you may be able to apply for a new licence once your doctors confirm that your seizures have been 'satisfactorily controlled' for three months and that there are no relevant mental health issues.
These regulations are based on the possibility of having a seizure while driving and the risks this could bring.
Seizures and disability
The Equality Act 2010 aims to protect people against discrimination if they have certain characteristics, including having a disability. Someone has a disability if they have:
"a physical or mental impairment which has a substantial and long-term adverse effect on the ability to carry out normal day-to-day activities".
Equality Act 2010.
Here 'substantial' means it is difficult or time-consuming to do activities compared to someone without a disability, and 'long-term' means at least 12 months. 'Day-to-day activities' include being able to get around, hear, see, remember and concentrate.
The Equality Act does not include a list of every disability covered. Although epilepsy is listed as a physical disability, NES is not listed. To be covered by the Equality Act, you need to show that you meet the definition above.
How you feel about your diagnosis
Being diagnosed with any condition can cause different emotions, and may affect many parts of your life. You may be relieved to know what is causing your seizures. Or you may find it hard to come to terms with, particularly if you were previously diagnosed with epilepsy and have now been diagnosed with NES.
Being diagnosed can also feel quite scary or upsetting because of the stigma around how psychiatric conditions are sometimes viewed. Understanding that NES can be your body’s natural way of reacting to stressful situations might be helpful.
There is no ‘right’ way to feel about your diagnosis, but being able to accept it can be part of helping to improve your seizure control.
You might like to call our confidential helpline to talk about your diagnosis and how you feel about it.
FND Action – raises awareness of functional neurological disorder (FND) and Non-epileptic attack disorder (NEAD) and provides support across the UK.
STARS (Syncope Trust And Reflex anoxic Seizures) – provides support and information.
Counselling Directory - to find a counsellor or therapist in your area. Your GP or specialist may also refer you for counselling or psychotherapy.
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