Epilepsy medicine
Fast facts
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1Epilepsy medicines are also known as anti-epileptic drugs or AEDs
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2Epilepsy medicine isn’t a cure. The medicines aim to try and stop the seizures happening. This is done by changing the levels of chemicals in the brain that control electrical activity. The short video below explains more about how AEDs work
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3Many people find their seizures are controlled with one medicine, but some people need to take 2 or more
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4Epilepsy medicine is absorbed into the blood and carried to the brain. For the medicine to work properly there needs to be a steady supply in the blood
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5Missing a dose of your epilepsy medicine can increase the risk of having a seizure
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6If you take your medicine twice a day taking it exactly 12 hours apart may increase your seizure control
Watch
This short video that explains how AEDs work
Top tips
- Ask your epilepsy doctor or nurse what to do if you forget to take your medicine, or if you’re sick or have diarrhoea
- Never stop taking your epilepsy medicines unless a doctor tells you it’s OK
- Other medicines may interact with your epilepsy medicine. Always check before you buy over-the-counter medicines or if you are being prescribed medicine for something else
- If you want to use hormonal contraception, check which one is best with your epilepsy medicine. Your epilepsy or epilepsy medicine could affect how well some types of contraception work. Learn more on the pages about hormones, sex and epilepsy
- If you choose to use CBD products, it’s important to let your epilepsy doctor know. This is because it could affect the way your epilepsy medicine(s) work
- If your seizures are not controlled by your epilepsy medicine talk to your epilepsy doctor about other treatment options
- People who take epilepsy medicines are entitled to free NHS prescriptions. Find out more on the page about prescriptions
There might be side-effects
Side-effects are unwanted symptoms caused by medicines. All medicines come with a patient information leaflet with a list of the known side-effects and how common they are. Your epilepsy doctor or nurse will be able to talk about possible side-effects with you.
Fast facts
Different medicines produce different side-effects
People are affected by epilepsy medicine in different ways
Many side-effects are mild and lessen over time, as your body gets used to the medicine
If you are badly affected by side-effects talk to your epilepsy doctor. They might try you on a different medicine or a different dose
The benefits of seizure control are usually greater than the impact of any side-effects
Important!
Some side-effects, such as a rash, can be a sign of a serious reaction.
Your epilepsy doctor or nurse should warn you about these and explain what to do if they happen to you.
Remembering to take your epilepsy meds
Managing medicines and remembering to take them can be a challenge, particularly if you take several different ones.
Here are some tips to help make sure you take your epilepsy medicine:
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Use a pill box
Pill boxes have compartments for each day of the week. They provide a visual reminder to take your medicine and can help to prevent taking a double dose. Sometimes it’s called a dosette box.
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Set reminders
Set a reminder on your phone or calendar to take your medicine. Or find an app which gives reminders.
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Make a note
Visual reminders are helpful. Try putting sticky notes in key places such as on the mirror or on the front door. Reminders can become easy to ignore when you get used to them, so try using a different colours over time or adding stickers.
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Have a routine
Try combining taking your epilepsy medicine with another routine activity such a mealtime or brushing your teeth. Whatever your routine is: stick to it.
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Remember to reorder
Have a plan for ordering and collecting prescriptions, so you never run out. There’s more about this on the prescriptions page
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Plan ahead
If you will be going away, plan ahead to make sure you will have enough medicine. The medicine might need to be collected from your pharmacy earlier than usual.
Stories by you
If you have a story to share about side-effects, remembering to take your medicines, or anything else about epilepsy medicines we’d love to hear from you.
Medical cannabis for epilepsy
We know the restrictions on the availability of medical cannabis is a frustration for some people with epilepsy.
Epilepsy Action is working to ensure that everyone with epilepsy who could benefit from cannabis-based medicines can access them in a safe and timely manner.
For the latest on medical cannabis for epilepsy in the UK visit the Epilepsy Action website.
Fast facts
In specific cases medical cannabis may be available as a treatment
Cannabis contains hundreds of natural chemicals. In medical cannabis, the two most important are cannabidiol (CBD) and tetrahydrocannabinol (THC)
CBD products sold online and in health food shops are not licensed as medicines. There's no guarantee of their quality or safety
The Food Standards Agency say that as a precaution, people taking any medicine should not use CBD products, unless directed to do so by their doctor
If you choose to use a cannabis-based product it’s best to let your epilepsy doctor know, because it might interact with your epilepsy medicine(s)
There's only one cannabis-based medicine licenced for treating epilepsy. It's called Epidyolex
Epidyolex is only prescribed by the NHS as a treatment for people with Dravet syndrome and Lennox-Gastaut syndrome
Do something
How good are you at remembering to take your epilepsy medicine as prescribed?
If you don’t have a routine in place. This template might help.
If it is: ____________________________
and I am: _________________________
and I have: ________________________
then I will take my epilepsy meds.
Filled in it might look like this:
If it is: 8am
and I am: in the bathroom
and I have: finished brushing my teeth
then I will take my epilepsy meds.
More info
The Epilepsy Action website has more information about epilepsy medicines
