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Diagnosing epilepsy

This information is for carers of people with epilepsy and a learning disability

A doctor can sometimes find it difficult to recognise when someone with a learning disability is having seizures. This is where your knowledge as a carer of the person will be valuable. Here are some things to bear in mind:

  • Accurate diagnosis is not always easy
  • Epilepsy can be over-diagnosed in people with challenging behaviour, especially if one of the things they do is stare
  • Focal seizures can be under-diagnosed
  • Non-convulsive status can be under-diagnosed (see )
  • A number of people with learning disabilities and epilepsy also have dissociative (non-epileptic) seizures
  • A video recording of the person having a seizure can really help with accurate diagnosis

An electroencephalogram (EEG) is one of the more common tests for epilepsy. It will show what is happening to a person’s brainwaves during the EEG. If there is something unusual about the pattern, this could be because of epileptic activity.

Sometimes a doctor will also want to use magnetic resonance imaging (MRI) to find out the cause of the epilepsy or the learning disability.

For some people with a learning disability, having an EEG may feel really difficult. You may want to discuss with the doctor or epilepsy nurse any ways they can suggest to help with this.

The NICE guidelines reflect this possible difficulty and will hopefully give you some back-up in getting the tests to happen in the most manageable way for the person you look after. You can find the particular guidelines at 1.16:

1.16.2.1 Those with learning disabilities may require particular care and attention to tolerate investigations

1.16.2.2 Facilities should be available for imaging under anaesthesia, if necessary

Website: nice.org.uk/guidance/CG137

Epilepsy Action has more information about dissociative seizures, diagnosing epilepsy and about the NICE guidelines.

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
B010.06

Epilepsy Action would like to thank Dr Lance Watkins Consultant Psychiatrist, Neath Port Talbot Community Learning Disability Team for his contribution to this information.

He has no conflict of interest to declare.

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated November 2018
    To be reviewed November 2021

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