Casi-system-interface - ❔CaSI❔

Dissociative Seizures

Educational post. Trigger warnings: Medical equipment and description of seizure.

Written by Tom and Blade.

Why will we cover this?

Although dissociative seizures are not exclusive for those with dissociative disorders. Some people with dissociative disorders will have seizures.

A dissociative seizure is named differently in different parts of the world.

I will be referring to them as dissociative seizures or Non-epileptic attack disorder (NEAD).

However, may also be seen as a one of the many symptoms/types of Functional neurological disorders (FND) its matching term in the ICD-11 is Dissociative neurological symptom disorder. And this post will focus specifically on only the non epileptic seizures.

It is also known as Psychogenic non-epileptic seizures (PNES), Non-epileptic seizures, and Psychogenic seizures.

If you have known these as "pseudo seizures", it is asked that this is no longer a term that should be used because the name suggests that the seizures are not real or faked by the individual having them or cannot have an ever lasting impact.

What causes a dissociative seizure?

Unlike epileptic seizures they are not caused by abnormal electrical activity in the brain.

A person can get triggered by sensations, thoughts, emotions and difficult situations. Memories of painful events can suddenly come into thoughts or awareness or a build up of stress can happen in a moment. The dissociative seizure can happen as a way to cut off stress or bad memories so that they are not relieved. This can cause a person to start to dissociate. This is when they will feel disconnected from the world around them or make it seem like the world is not real. The brain will "shut down" to protect itself from overwhelming stress. The seizure then happens because the emotional reaction of the person becomes physical. It is known that extreme emotional distress can cause illnesses and disorders such as non epileptic seizures.

Some people who have dissociative seizures have them caused by traumatic events. For some they may happen after the event or for others they could start years later. They may start to happen suddenly with no apparent reason at the moment. However, in some people they can be caused by the build up of stress overtime.

When seizures start they can be triggered by stressful or frightening events, even the worry of having a seizure can trigger one. They could also occur spontaneously in non stressful events. Patients may not be able to understand why seizures happen as for some it is hard to recognise the level of stress they are feeling.

What do dissociative seizures look like?

Dissociative seizures can look different from person to person.

You could have episodes of uncontrolled movements, sensations or behaviour. Some dissociative seizures may look more like epileptic seizures or may look more like fainting. Someone may have palpitations, sweat, hyperventilate and have a dry mouth. Someone may fall on the ground or have jerking and shaking movements either on one side or the whole body. A person may lose control of their bladder or bowels and may also bite their tongue. Some people may go unresponsive to people around them and may stare and go blank.

Having seizures caused by a delayed response to a traumatic event may be a part of Post Traumatic Stress Disorder (PTSD). In these seizures a person may have flashbacks, scream or cry and they may not remember the seizure afterwards.

Diagnosis of dissociative seizures.

A specialist will have many ways to tell whether the seizures are epileptic or not. The doctor may be able to tell from detailed descriptions of the seizures or a video of one happening. However, a doctor may ask someone to have an electroencephalogram (EEG) to determine whether electrical changes occur within the person's brain during a seizure. It may also be suggested for a person to have a video-telemetry. This could be done as an inpatient in a hospital or at home. A person will wear EEG equipment for a few days and is linked to a camera. This means that during a seizure the EEG and a video of it happening can be taken at the same time.

Brain scans such as Magnetic resonance imaging (MRI) or Computed Tomography Scan (CT) scans may also be done to rule out any neurological cause for these seizures.

Treatment for dissociative seizures.

Patients may also be asked to see a psychiatrist or psychologist. They can offer Treatment such as psychotherapy, stress-reduction (such as relaxation and biofeedback training), and personal support to help you cope with their seizures.

Talking therapy is useful to understand if there are triggers for the seizures and ways to manage these triggers in daily life. Cognitive behavioural therapy (CBT) is often recommended.

Medication will not help treat non epileptic seizures so they will only be suggested if the patient also has epileptic seizures. Taking medication for non epileptic seizures can cause side effects and do not benefit the person.

It is recommended to keep a normal daily routine. And to make sure that their family and friends are aware and understand. This will mean they will likely be able to help the person in a seizure and prevent harm.

First aid for dissociative seizures (Outsider's perspective):

DO:

- Make sure the person is safe. This can include moving objects away from them. If the person is lying on the floor, put a cushion/something soft under their head.

- Speak Calmly and in a reassuring way to the person

- Non epileptic seizures do not cause damage to the brain no matter how long it happens BUT if you are not sure if it is a dissociative seizure and lasts more than 5 minutes an ambulance must be called. If it is epileptic then a seizure longer than 5 minutes can damage the brain. (Again important to note this is advice given by the NHS of the UK)

- Stay with the person until they have recovered

DO NOT:

- Do not restrain the person. This can cause injury and make the seizure worse.

- Do not put anything in the person's mouth

- Do not attempt to give medication

Self help tips:

- Write down how you are feeling

- Continue to live normally and not become over cautious. This can help to speed up recovery. It is important to talk to your employer about these seizures and make clear your colleagues know what to do as well.

- Eat and Sleep well

- Build up self confidence

- Green exercise is a great way to boost your mood by being outside even if it is for a short while. Going for a walk outside.

- Fitness programmes can be found online and most can be done from your home

- Remaining positive

The sources we have used for this information also have more information on disability rights and benefits for those with dissociative seizures. And on driving regulations. However, these are only applicable to the UK.

Resources we have used to create this article:

Epilepsy Society: https://epilepsysociety.org.uk/about-epilepsy/what-epilepsy/non-epileptic-seizures

Epilepsy Action: https://www.epilepsy.org.uk/info/seizures/dissociative-seizures-non-epileptic-attack-disorder-nead

Sheffield Teaching Hospital document: https://www.sth.nhs.uk/clientfiles/File/pd3922_NonEpilepticSeizures.pdf

Non-Epileptic Attacks: https://sites.google.com/sheffield.ac.uk/non-epileptic-attacks/home.

Further information:

People's experiences:

Documentary film https://www.youtube.com/watch?v=MA1EYAg9y5k. Photosensitive Epilepsy Trigger Warning at (9:14 - 9:30 ) and at (45:25 - 46:18)

Websites for more information:

NeuroKid: https://www.neurokid.co.uk/ - This is a website for children and young people with dissociative seizures but also has information for parents of these children. The website is also available in French at https://www.neurokid.co.uk/fr/.

Non-Epileptic Attacks: https://sites.google.com/sheffield.ac.uk/non-epileptic-attacks/home. A page written by professionals. They have more resources and go into more detail about the self help we have addressed.

FNH Hope UK: https://www.fndhope.org.uk/about-fnd-hope/fnd-hope-uk/. Has fundraising challenges across the UK. They also have online classes such as dance, painting, mindful meditation and yoga.

Charities:

FND Action: https://www.fndhope.org.uk/about-fnd-hope/fnd-hope-uk/. They can provide ID cards for those in the UK struggling with dissociative seizures.

Brain Charity: https://www.thebraincharity.org.uk/condition/non-epileptic-attack-disorder/. Provides Emotional support and social support for those in the UK and has a helpline.

Trigger warnings: Medical equipment and description of seizure. Educational post.

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