This information is for carers of people with epilepsy and a learning disability
This information covers diagnosing and treating people with learning disabilities. It also includes information about seizure triggers and about other related conditions.
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 really valuable. Here are some things to bear in mind:
- Accurate diagnosis 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
A number of people with learning disabilities and epilepsy also have dissociative (non-epileptic) seizures.
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.
Epilepsy Action has more information on dissociative seizures
NICE (National Institute for Health and Care Excellence) guidelines and diagnostic tests
NICE is an independent organisation that provides guidelines for treatment and care for people using the NHS in England, Northern Ireland and Wales. The guidelines are for healthcare professionals, local authorities, charities, and patients and their carers. They are to help them make decisions about healthcare, public health or social care services. They are also to make you aware of the services available, and to have the confidence to ask for the treatment, care, and information you need.
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:
126.96.36.199 Those with learning disabilities may require particular care and attention to tolerate investigations
188.8.131.52 Facilities should be available for imaging under anaesthesia, if necessary
For most people epilepsy medicine is the best and often only option for controlling seizures. For many people being on the right dose of the right epilepsy medicine or medicines can mean their seizures stop completely.
It can be really difficult or upsetting for some people with a learning disability to swallow tablets. There are usually a variety of forms of the medicines, such as liquids and granules, available. So it’s worth getting the one that is most manageable in order to make sure the person takes their medicine exactly as prescribed.
For someone who is likely to have trouble remembering to take their epilepsy medicine, there are a variety of reminder devices available.
For everyone with epilepsy the aim is to get the best possible seizure control. For a person with a learning disability it’s especially important that seizure control isn’t the only thing the doctor considers when prescribing epilepsy medicine. The aim of any treatment should be to help the person reach the best quality of life possible for them.
Below is some information which will help you to help the doctor choose the best treatment.
Possible seizure triggers
Knowing the possible seizure triggers for the person you look after, can help to limit the number of seizures they have. It can also mean that the dose of their epilepsy medicine isn’t increased unnecessarily. These are the things people say trigger seizures:
- Not taking epilepsy medicine as prescribed
- Feeling tired
- Not getting enough sleep
- Flashing or flickering lights
- Menstruation (periods)
- Missing meals
Fever and infection can also make it more likely that someone will have a seizure. Changes in other medicines, especially stopping sedating medicines, can also trigger seizures.
Sleep disorders and metabolic conditions
Between three and six out of every 10 people with a learning disability (30% to 60%) will have a sleep disorder. This is often undiagnosed. It’s important to get this treated as it may well be making the person have more seizures.
It is also important that the person you look after is screened for metabolic disorders. These happen because of abnormal chemical reactions in the body. They are responsible for a range of different health conditions. Having one of these conditions untreated could make it more difficult for a doctor to understand why someone’s seizures are happening and what side-effects of epilepsy medicines someone might be experiencing. The best thing to do is to ask the epilepsy doctor or GP if they think screening for metabolic disorders is needed. Many people will have been tested in childhood or have causes that make it clear there is no metabolic disorder.
Side-effects of epilepsy medicine
As the carer you are likely to notice changes in emotional and physical health and behaviour of the person you are looking after. Here is some information which may help you decide what may be useful to share with a doctor:
- A person with a severe learning disability is more likely to have side-effects than someone with a milder learning disability
- Small side-effects may be missed by a doctor who doesn’t know the person you look after very well. They may think that a problem the person has with understanding, co-ordination or behaviour may be because of the learning disability, when it could be a side-effect of an epilepsy medicine
- People with epilepsy and a learning disability may well have side-effects that are different from the general population
- Side-effects could explain someone’s reluctance to take epilepsy medicine
- Side-effects could result in behaviour problems
- Having too much of an epilepsy medicine in your system could result in behaviour problems
- Taking a number of epilepsy medicines can often result in significant side-effects
- Side-effects could reduce the person’s ability to understand things
It is also worth knowing that a number of the older epilepsy medicines can cause osteoporosis. Always check with the doctor or pharmacist before giving someone over-the-counter medicines. Some epilepsy medicines have long lists of medicines that interact with them.
There are a number of other conditions that can go with having a learning disability and epilepsy. It is just as important that these get diagnosed and treated as well as the learning disability and the epilepsy. These are conditions such as psychiatric disorders, anxiety, behavioural problems, autism and attention deficit/hyperactivity disorder.
People with learning disabilities and epilepsy are more likely to develop psychiatric disorders than people with learning disabilities alone. Some doctors avoid treating psychiatric disorders, such as depression, with medicine because they think that they will provoke seizures. Evidence shows they can be safe and effective. It is important to bear in mind that epilepsy medicines can be a cause of psychiatric disturbances. It could be possible to change them so that the disturbances no longer happen. It is a good idea to talk this through with the doctor.
Some doctors have seen that barbiturates, benzodiazepines, vigabatrin, tiagabine and levetiracetam can cause psychiatric disturbance, especially in someone with a family history of psychiatric disorder. But it is important never to stop taking prescribed medicines without medical guidance.
As well as the side-effects of epilepsy medicines already listed, there are many other possible reasons for behavioural disturbance in a person with a learning disability and epilepsy. Here are some possible causes:
- Gastro-oesophagal reflux
- Sleep disturbance
- Appetite change
- Environmental issues
- Autistic traits
Diagnosing seizures in someone who already has a learning disability and autism can be complex. A video of the person’s seizures can be particularly helpful in this situation.
If the person you look after has all three conditions it is vital for the various professionals involved to communicate with each other.
Other ways of treating epilepsy
For some people who are still having seizures despite trying a number of epilepsy medicines, epilepsy surgery may be an option. The assessment for surgery is complex but it should be offered to patients where it is believed epilepsy is coming from one part of the brain. When a person with a learning disability is suitable for surgery the results can be very good.
If surgery isn’t a treatment option, the doctor may discuss the possibility of vagus nerve stimulation (VNS) or the ketogenic diet.
VNS is a treatment for epilepsy where a small device is implanted under the skin below the left collar bone. This device, similar to a pace-maker, is called a generator. The generator is connected to a thin wire, which stimulates the vagus nerve in the person’s neck at regular times throughout the day. This sends impulses to the brain, which helps to prevent electrical activity that causes seizures.
The ketogenic or modified Atkins diet is sometimes used to try and help children whose seizures cannot be reduced or stopped with epilepsy medicine. The diet is higher in fats and lower in carbohydrates than a typical diet. Just occasionally this may be suggested for an adult.
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.
Our thanks to Professor M. Kerr, Welsh Centre for Learning Disabilities, who reviewed and contributed to this information.
Professor M. Kerr has no conflict of interest to declare.
This information has been produced under the terms of The Information Standard.
- Updated November 2015To be reviewed September 2018