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1NEAD / PNES / NES / DS Empty NEAD / PNES / NES / DS on Wed Sep 30, 2009 3:42 pm


Here is the currently known information regarding Non Epileptic Seizures, their causes, and treatments. If you would like to discuss your Non Epileptic Seizures, please do so by starting a new topic.

Epileptic and non-epileptic seizures can look the same and have the same features. They can both happen suddenly and without warning, and can include a loss of awareness or the person becomes unresponsive, makes strange or repeated movements, or shakes (convulses). They can both cause injury and incontinence (wetting yourself), and can both happen when awake and during sleep.

The difference between epileptic and non-epileptic seizures is their cause.

Epileptic seizures start in the brain. Our brain controls the way we think, move and feel, by passing electrical messages from one brain cell to another. Although epileptic seizures always happen due to disrupted brain activity, what happens to the person during the seizure depends on where in the brain this disrupted activity happens. There are many different types of epileptic seizure: in some the person is aware of what is happening, in others they become confused and unaware of their surroundings, or they may become briefly ‘absent’ or fall to the ground and convulse (shake).

Epileptic seizures are caused by a disturbance in the electrical activity of the brain (and so they always start in the brain).

In contrast, seizures caused by a condition outside of the brain are not due to epilepsy. For example, a seizure caused by a low level of sugar in the blood, or a faint (syncope) which is caused by either not enough oxygen in the blood, or the heart not pumping enough blood around the body.

Non-epileptic seizures (NES) are different from epileptic seizures because they are not caused by disrupted electrical activity in the brain. They have a number of different causes, and different forms.

Other names for non-epileptic seizures
Non-epileptic seizures are sometimes known by other names such as non-epileptic attacks. People who have non-epileptic seizures may be described as having ‘non-epileptic attack disorder’ (NEAD).

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 a helpful term because it does not describe the seizures in terms of epilepsy. It is also a useful term because it is recognised by the World Health Organisation (this means that it is included in the International Classification of Diseases: a list of all known diseases and conditions).

What causes non-epileptic seizures?
Non-epileptic seizures (NES) can be divided into two types: organic non-epileptic seizures and psychogenic seizures.

Organic NES
These seizures have a physical cause (relating to the body). They include fainting (syncope), and seizures with metabolic causes such as diabetes.

Because these 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.

Psychogenic NES
Some NES have a psychological cause and are called ‘psychogenic seizures’. They are psychological because they are caused by the impact of thoughts and feelings on the way that the brain works.

Psychogenic seizures include different types.

Dissociative seizures are involuntary and happen unconsciously. The person has no control over them and they are not ‘put on’. This is the most common type of NES.
Some people have other psychiatric conditions that cause seizures. The best example is panic attacks. These happen in frightening situations, when remembering previous frightening experiences, or in a situation that the person anticipates may be frightening. As the name suggests, the person having them feels intense anxiety. Panic attacks can cause sweating,
palpitations (being able to feel your heartbeat), trembling and difficulty breathing. The person may also lose consciousness and may shake (convulse).
Some people have ‘factitious seizures’ - seizures that are consciously or deliberately ‘put on’. One example of this is in Munchausen’s syndrome (a psychiatric condition in which the person pretends to have different medical conditions so that they get treatment). These seizures are not common: most NES are not ‘put on’.

When you have seizures your GP will usually refer you to a specialist for diagnosis. This will usually be a neurologist (a doctor who specialises in the brain) 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 partly because they can appear to be similar to epileptic seizures. There are no features that will definitely tell NES from epileptic seizures.

Taking a personal history
Many of the tests used to find the cause of seizures cannot, on their own, confirm a diagnosis.

Taking a ‘personal history’ can help to find the cause of your seizures. This includes the following:

looking at your neurological history (about your brain and nervous system and its development);
looking at 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;
looking at whether there is a family history of depression or other conditions;
looking at the history of your seizures, such as when they first started and when they happen; and
looking at 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 to you during a seizure can be helpful to find the cause. If you don’t remember your seizures, the doctor might ask you to bring along someone who has seen your seizures (sometimes called a ‘witness’).

The specialist might ask you about:

what situations you have seizures in;
whether you get any warning before a seizure happens;
what happens to you during the seizure or, if you don’t remember, a witness can help describe what happens to you;
how long the seizures last;
what you remember, if anything, about the seizure afterwards; and
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.
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, to tell 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).

The specialist will usually explain the results of these tests to you. If the tests show no neurological or physical cause for your seizures, your specialist may consider a diagnosis of NES. They may then refer you to a different specialist to diagnose NES.

Dissociative seizures:
We all react to frightening or stressful situations differently. When we are frightened we might feel physical symptoms such as a racing heartbeat or feeling sweaty. When we feel sad, we might cry. So how we feel emotionally can sometimes cause a physical reaction.

When we have experiences that are extremely frightening or upsetting, sometimes they are so emotionally difficult for us to think about that we cannot consciously cope with how this makes us feel. In some cases, we will unconsciously hide or ‘repress’ the memory of these experiences. These memories may always remain hidden and we may never remember that they have happened.

For some people the memories of these painful past events can suddenly come up or ‘intrude’ in to their thoughts or awareness. This might happen during an emotional or stressful situation, when there is something in the environment that unconsciously triggers the memory, or even in a situation where the person is stressed but is not aware that they are stressed. This can cause a dissociative seizure.

Dissociative seizures happen as a response to suddenly remembering the traumatic experience: the person splits off (or dissociates) from their feelings about the experience because it is too difficult to cope with. The seizure happens because their emotional reaction causes a physical effect. These seizures are an unconscious reaction so they are not deliberate and the person has no control over them.

One way to describe this is by comparing it to ‘domestic deafness’. Most of us have had the experience of concentrating so hard on reading the newspaper that we don’t realise when someone is talking to us. This is like ‘turning the volume down’ to drown out what is happening around you so you can concentrate. Dissociative seizures are like the body’s way of ‘drowning out’ a frightening or painful memory that intrudes into our thoughts.

What causes dissociative seizures (DS)?
Any experiences that we have, whether good or bad, can have a deep and long-lasting effect on us, and everyone has their own way of dealing with them. Dissociative seizures (DS) are often caused by traumatic events such as:

severe emotional upset (such as the death of a loved one);
psychological stress (such as a divorce);
difficult relationships;
physical or sexual abuse; or
being bullied.
It can be hard to find the cause of someone’s DS. For some, they start shortly after a specific event. For others, they may not start until years later, or they may start suddenly for no apparent reason. Once DS have started, they might be triggered or brought on when the person is stressed or frightened. Or they might happen spontaneously in situations that are not stressful or frightening. Sometimes, even the fear of having a seizure can, in itself, trigger a seizure.

Finding the original event that caused the DS to start might help to find a way to treat the seizures. But this is not always possible, and it can be hard to talk about traumatic or difficult events.

What are the symptoms of DS?
Although DS start as a emotional reaction they cause a physical effect. Features of the seizures can include palpitations (being able to feel your heartbeat), sweating, a dry mouth and hyperventilation (over-breathing). Some features of DS are very similar to epileptic seizures. These physical features include loss of awareness, loss of sensation, and loss of control over bodily movement (which may include having convulsions).

DS can happen to anyone, at any age, although some factors make DS more likely.
DS are:

more common in women;
more likely to start in young adults;
more likely to happen to people who have had an injury or disease, or who have had more severe emotional upset or stressful life events; and
more common in people with other psychiatric conditions (such as depression, anxiety, personality disorders or people who self-harm).

Treating DS
The right treatment for DS depends on their cause. Your specialist may talk to you about what treatment options might be helpful, and may refer you to a different specialist.

If you have DS, your seizures are not epileptic and will not respond to anti-epileptic drugs (AEDs). If you are already on AEDs, for example if you were previously diagnosed with epilepsy, your specialist may suggest you gradually reduce them. If you have DS and epilepsy, you 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. Although some Anti-depressant drugs are also used for Anti-Epileptic properties for treating epilepsy, their usage reasoning should not be confused.

Psychotherapy is the recommended treatment for DS. Psychotherapy refers to a group of ‘talking’ treatments. Mental health professionals, including psychiatrists and psychologists, are trained to give it.

Cognitive behavioural therapy (CBT) is the most often recommended treatment. 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 things, such as how you think about yourself, other people and the world around you, this may change the way that you behave. CBT doesn’t only look at what has happened to you in the past but also at how things are affecting you in the present. It looks for 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.

First aid for DS
The general first aid guidelines for DS are the same as for epileptic seizures:

keep the person safe from injury or harm: 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; and
stay with them until they have recovered.

If you have seizures of any kind you may be able to apply for benefits, depending on the effect that your seizures have on you. Whatever the cause, seizures can be sudden and unpredictable so keeping safe during a seizure is important.

Driving regulations for the UK are set by the Driver and Vehicle Licensing Agency (DVLA). DS usually come under the regulations for ‘loss of consciousness or loss of, or altered, awareness’ which means that you need to stop driving and tell the DVLA that you have DS. These regulations are based on the possibility of having a seizure while driving and the risks this could bring.

People with a disability are protected by the Disability Discrimination Act (DDA). This means it is unlawful for someone to treat a person with a disability unfairly because of their disability without a justifiable reason. Under the DDA, you have a disability if:

you have a physical or mental impairment; and
your impairment has a major, negative and long-term (12 months or more) effect on your ability to carry out day-to-day activities (such as eating, washing, walking or shopping). The disability could affect you being able to move around, your memory and concentration, or your ability to understand the risk of danger.
The DDA doesn’t include a list of every disability covered. Although epilepsy is listed as a physical disability, DS is not listed. To be protected by the DDA, you need to show that you meet the definition of a disability above.

Being diagnosed with any condition can cause many different emotions, and can 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 DS.

Being diagnosed with a psychiatric condition can also feel quite scary or upsetting because of the stigma around how we view psychiatric conditions. Understanding that DS 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 seizures. You might like to talk to someone about your diagnosis and how you feel about it.

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