This information is for carers of people with epilepsy and a learning disability
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 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 to help the person take 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 more information on medicine reminders see the Disabled Living Foundation website.
There are small differences between versions of epilepsy medicine which can affect the way the medicine works. If you notice a change in seizures following a version change it is important to tell your doctor or pharmacist. Some people may need to stay on the same version of their epilepsy medicine.
For everyone with epilepsy the aim is to get the best possible seizure control with as few side-effects as possible. 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. They should be helping the person reach the best quality of life possible for them.
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 can also make it more likely that someone will have a seizure.
Changes in any other medicines they take, especially stopping sedating medicines, can also trigger seizures.
Side-effects of epilepsy medicine
As a carer you are likely to notice changes in emotional and physical health and behaviour of the person you are looking after. This information may help with what to look out for. And what you notice will be important to share with the 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 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
A number of the older epilepsy medicines can cause osteoporosis. If the person you care for is taking one of the older medicines you may want to ask the GP to give them a bone density test. If necessary the doctor may then give a particular medicine or supplement for the condition.
Epilepsy Action has more information about osteoporosis.
Always check with the doctor or pharmacist before giving someone over-the-counter medicines. Some epilepsy medicines will interact with these as well as prescribed medicines.
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 where it is believed epilepsy is coming from one part of the brain. Even so, not everyone will be suitable for surgery. However 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.
There are 2 modified ketogenic diets. These are the Modified Atkins diet (MAD) and the low glycemic index treatment (LGIT) diet. The MAD involves restricting carbohydrates and encouraging fat. Protein is not restricted. On the LGIT diet carbohydrates and protein are both restricted and fat is encouraged.
These 2 modified diets are less strict than the ketogenic diet and weighing of food is not needed. The MAD is increasingly being chosen for children.
They are sometimes used to try and help children whose seizures cannot be reduced or stopped with epilepsy medicine. Just occasionally this may be suggested for an adult.
Keeping a seizure diary is a good way of having a record of someone’s health day by day. It’s also an efficient way of showing a neurologist possible connections between changes in someone’s seizure control, general health, dose changes and side-effects.
Epilepsy Action has seizure diaries.
You might also want to look at Myhealthguide: myhealthguideapp.com
Epilepsy Action has information on first aid, including what to do if someone is in a wheelchair.
Everyone with epilepsy should have a care plan. This is especially important if the person may need emergency treatment for their seizures. The plan should be drawn up by a medical professional, the person the care plan is about and their carers.
Epilepsy Action has care plans. These are not in Easy Read but you could use one alongside an Easy Read healthcare passport.
NICE guidelines and treatment
As mentioned above, in order to get the best healthcare for the person you are looking after, you need to know about the NICE guidelines.
There are NICE guidelines about treatment and care for someone with epilepsy. And there are some specific guidelines for people with epilepsy and a learning disability. These can be found at 1:16.
In particular, it is worth knowing about this one:
126.96.36.199 Enable children, young people and adults who have learning disabilities, and their family and/or carers where appropriate, to take an active part in developing a personalised care plan for treating their epilepsy while taking into account any comorbidities. (These are other conditions which can happen at the same time as learning disabilities.)
There are specific NICE Guidelines for someone with challenging behaviour and a learning disability.
The Challenging Behaviour Foundation provides information and support.
Family Support line: 0300 666 0126
Emergency treatment for seizures that last a long time
Many people have seizures that last for less than 5 minutes and stop without any treatment. But some people have seizures that last too long. These are known as status epilepticus and need treating urgently. This is to try and stop them before they cause long-term damage. The sooner the seizure is treated the easier it will be to get it to stop.
By the time a seizure is lasting for 30 minutes or more, it is much more difficult to stop. If a tonic-clonic or cluster of tonic-clonic seizures last longer than 30 minutes, this can cause damage to the brain, or even death.
What type of seizures turn into status epilepticus?
Any type of seizure can become status epilepticus.
Tonic-clonic (convulsive) status epilepticus
During a long convulsive tonic-clonic seizure, the body struggles to circulate oxygen. When this happens, the brain doesn’t get enough oxygen. Over a long period, this can lead to brain damage and death.
Non-convulsive status epilepticus
Some people with epilepsy, particularly people with learning disabilities or an epilepsy syndrome, have a different type of status epilepticus. They may just appear to be vacant. Or they might have some minor twitches in their face or rolling of their eyes. These can be symptoms of non-convulsive status epilepticus. The only clues to this will be changes in their brainwave patterns that can be seen on an electroencephalogram (EEG). It’s important that you are aware of this, as it can last for weeks, if not treated. If you think this may be happening for the person you care for, you may want to speak to your consultant who can arrange for them to have an EEG in hospital. If this process would be too slow, you may want to take the person you care for to A and E.
Rectal diazepam and buccal midazolam are both used as an emergency treatment. Buccal midazolam has the advantage of not causing the person concerned embarrassment. The issue of consent to emergency treatment can be a challenging one for the person involved and their carer. The NHS website has some helpful information on definitions of consent and what to do if that is difficult to get.
Epilepsy Action has more information on emergency treatment for seizures that last a long time.
NHS Choices has a range of useful guidance about getting the person you look after the best care and treatment when they are in hospital.
In particular you may find it useful to download a hospital passport. Here are two options:
- East Kent hospitals healthcare passport template, extensive but not Easy Read
- Easy Read Healthcare passport. This one is suitable for hospital but can also be used more generally.
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.
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 The Information Standard.
- Updated November 2018To be reviewed November 2021