Jump straight to the information you need
Key Points
- Many side effects caused by epilepsy medicines are mild and may improve over time. Others can be more challenging
- Ask your GP or epilepsy specialist to explain possible side effects when they prescribe any medicines to you
- Read the patient information leaflet that comes with your medicine before starting your treatment. This can help you understand your symptoms
- Stopping an epilepsy medicine suddenly can be dangerous. Talk to your GP or epilepsy specialist if you are finding it hard to cope with the side effects of your treatment. They might be able to help by changing the dose or adjusting how you take your medicine
What are side effects?
Side effects are unwanted symptoms caused by medicines. All drugs can cause side effects, including epilepsy medicines.
It is quite common to experience side effects when you start taking an epilepsy medicine. For many people these are mild and improve over time. But for some people side effects can be more difficult and lasting.
A small number of people may experience serious side effects and need medical attention. Speak to your doctor or epilepsy specialist nurse if you have any concerns about side effects.
Who gets side effects from epilepsy medicines?
Side effects can affect anyone taking an epilepsy medicine. You may notice side effects more if you receive a high dose, or are taking more than one medicine.
Some side effects are more likely to appear when you start taking your medicine. These can lessen over time, as your body gets used to taking it. Other side effects may appear after you have been taking the medicine for a while.
Everybody’s experience of side effects is different. For example, one person may have challenging side effects with a medicine, while another may not.
Even if you have difficult side effects with one type of medicine, you may have a better experience with another.
Common side effects of epilepsy medicines
Each medicine will have a list of possible side effects.
Some common side effects caused by epilepsy medicines can include:
- Tiredness and problems sleeping (insomnia)
- Dizziness, or feeling unsteady
- Digestive problems, such as feeling sick or constipation
- Mood changes, such as feeling anxious or irritable
- Changes to thinking and learning processes, like feeling foggy or ‘slowed down’
- Eyesight changes, such as blurred or double vision
These types of side effects can be more common when starting a new epilepsy medicine. They may improve over time, or or if your doctor or epilepsy nurse reduces your medicine dose.
In children, sleep issues and mood-related behaviour changes can be quite common side effects. Speak to your child’s GP or epilepsy specialist if you have any worries about their symptoms.
Other side effects of epilepsy medicines
Some people taking epilepsy medicines may have less common side effects. These can include:
-
Changes to blood and liver function
Occasionally people taking epilepsy medicines can develop changes to their blood cells or to the way their liver works. These changes are usually mild, but your doctor may want to take some blood tests to check how well your liver is working, and to monitor for any other changes.
Ask your GP or epilepsy specialist if you need to look out for any symptoms. Tell them straight away if you have any concerns.
-
Physical side effects
Some people can experience changes to their body while they are taking epilepsy medicines.
These can include:
- Eating more or less than usual
- Weight loss or gain
- Changes in hair growth
- Increased gum growth (gingival hyperplasia)
- Acne
- Skin rashes
Sometimes these side effects can be difficult to cope with.
Speak to your GP or epilepsy specialist if these side effects are affecting your confidence or quality of life. There may be things they can do to help, such as adjusting how much medicine you take.
You can also talk to us. Contact our helpline on 0808 800 5050 or talk to us via our live text chat to find out more about the support we offer.
-
Epilepsy medicines and bone health
Taking some epilepsy medicines for a long time can increase your risk of osteoporosis. This condition causes bones to become weaker and more fragile.
There are things you can do now to help prevent osteoporosis. This includes taking regular exercise and having a healthy diet. You may also want to consider taking a vitamin D supplement.
Speak to your GP or epilepsy specialist about your risk of osteoporosis. They can advise you about how to keep your bones healthy. They may also refer you for a scan to measure your bone strength, known as a bone density (DEXA) scan.
Find out more about epilepsy medicines and bone health.
-
Epilepsy medicines and problems with sex
Many people with epilepsy have a healthy sex life. But some epilepsy medicines may affect your interest in, or ability to have sex. This is because the medicines change the hormone levels in your body. These hormones can affect your sexual wellbeing.
Problems with sex can affect your confidence and your relationships. But there is support available. It might help to discuss side effects like these with a partner or a healthcare professional.
Find out more about relationships, sex and epilepsy.
-
Epilepsy medicines, fertility and pregnancy
Most people with epilepsy have healthy pregnancies and give birth to healthy babies. But some epilepsy medicines may increase the risk of problems for your baby.
Find out more on our epilepsy medicines and pregnancy page. We also have information about sodium valproate and possible risks for women and men who are able to have children.
Driving, working with machinery and epilepsy medicines
Some side effects can make driving or working with machinery unsafe. These might include problems with eyesight, or feeling tired or dizzy. Check the patient information leaflet that comes with your medicine. Or ask your GP, epilepsy specialist or pharmacist for more information.
Got any questions?
Our expert advisors can help you with any questions you might have about side effects or anything else related to living with epilepsy.
Serious side effects to look out for
Some side effects can be serious and need urgent medical attention. These side effects are rare. But it is important to be aware of them, just in case.
Contact your GP or epilepsy specialist if you have any of the following. It is especially important to do this if you have started a new epilepsy medicine within the last few weeks:
- Very distressing mood changes, including thoughts of harming yourself or suicide
- Signs of a possible allergic reaction, such as itchy skin rash, bruising, fever, or swollen glands
- Feeling very sleepy and being sick
You can ask your healthcare professional about serious side effects when they prescribe any epilepsy medicines to you.
The patient information leaflet that comes with your epilepsy medicine will also list possible side effects. Patient information leaflets for each medicine are available online at electronic Medicine Compendium (eMC).
You can also find out more about individual medicines on our epilepsy medicines page.
I found reading the information leaflet helpful. I feel safer knowing what could happen to me. I am often ‘looking out’ for symptoms and signs when there has been a medicine or dosage change.
– Christine, Epilepsy Action supporter
What can I do if I get side effects?
Many side effects are mild and manageable, and will get better over time. Many people will not experience any difficult side effects at all. But if you do, there are some things that might help.
We asked some of our supporters with experience of epilepsy what helped them to manage side effects. Here are some things that they said helped:
-
Keep a record of any new side effects
It can be useful to keep a daily record of any changes you notice after starting a new epilepsy medicine. This can help you to notice when these effects are more likely to happen, or whether they are changing over time.
This information can be very useful to take to your GP or epilepsy specialist if you have any concerns.
-
Talk to your epilepsy specialist
If side effects are a problem for you, your healthcare team can often make changes to your medicine that can help. For example, they may be able to change the dose or time that you take the medicine, or even change the type of medicine. Or you may be able to get a referral to another specialist who can help.
It can be dangerous to stop taking epilepsy medicines suddenly. Talk to your GP or epilepsy specialist if you are considering doing this.
If you need help you can also talk to us on our helpline on 0808 800 5050, or via our live text chat service.
-
Make lifestyle changes where you can
Consider if you can make any small daily changes that can help you to manage side effects. For example:
- If you experience tiredness, think about sleeping habits and how you can rest more during the day or at night
- Plan activities based on energy levels. Pace yourself when you can throughout the day
- Consider developing an exercise routine to help with difficulties getting to sleep
- Limit caffeine and alcohol intake
- Take time and learn to listen to your body
I managed my side effects by going to bed at a reasonable hour to accommodate what I have planned the next day and making sure I’m not overdoing things.
– Kim, Epilepsy Action supporter
-
Be kind to yourself
People told us it was important for them to be kind to themselves or to loved ones experiencing side effects. They often needed to give their bodies time to adjust to the new medicine.
Accepting your diagnosis and treatment can take time if you are newly diagnosed. You might find it helpful to look at our wellbeing pages. We also have a free online epilepsy and wellbeing course.
Some people found it helpful to consider their quality of life. They weighed up whether the new medicine was helping, even with side effects. Sometimes the benefits of taking an epilepsy medicine can outweigh the side effects.
Go gentle on yourself, find a pace and routine that works for you and don’t feel pressured by norms and others’ expectations…. you are unique!
– Linda, Epilepsy Action supporter
-
Talk to others
Talk to friends and family about your side effects. This can help others to better understand and give support. Some side effects can be subtle, and other people may be able to spot them when you can’t.
If you are employed, it might be helpful to discuss any possible side effects with your employer. Find out more about how employers can help you on our work and epilepsy page.
It’s helpful if those around you understand what you are going through and can make allowances; maybe let them read the information sheet if it is too scary for you.
– Christine, Epilepsy Action supporter
Your epilepsy nurse or specialist will be able to help with adjustments to reduce or minimise the impact of side-effects, or you may be able to try a different medication. Make sure you are honest about the impact; don’t be afraid to speak up if a medication is affecting you negatively!
– Jaye, Epilepsy Action supporter
The Yellow Card Scheme
The Yellow Card scheme is a national side effects monitoring system. It is run by the Medicines and Healthcare products Regulatory Agency (MHRA). The scheme was set up to help identify any new side effects or safety issues with a medicine.
Either you or your GP can report your side effects via the Yellow Card website. You can also pick up a Yellow Card form from your GP surgery or local pharmacy.
When medicines affect each other
Some medicines and foods can affect other medicines in the body. They can interfere with how well the medicine works in the body, or how the body processes them. When this happens it is called an interaction.
The chance of an interaction happening can increase with the number of medicines that you take. If there is a possibility of an interaction, your doctor might change the dose or type of medicine that you are taking.
-
Medicines to treat other conditions
Some medicines that treat other conditions can interact with your epilepsy medicines. They might interfere with how well your epilepsy medicines work, or cause more side effects. Some medicines might increase your risk of having a seizure.
Some complementary treatments such as herbal remedies could also interact with epilepsy medicines.
Always check with your GP or pharmacist if you are planning to take any of these:
- Prescribed medicines
- Over-the-counter medicines
- Herbal remedies
- Supplements
- Anything else that you are not sure about
This is to make sure they won’t affect your epilepsy or treatment.
You can also look up which medicines interact with each other on the British National Formulary (BNF) website.
-
Contraception
Some epilepsy medicines make some types of hormonal contraception, such as the pill, work less well than they should. This could also mean that you could get pregnant. Visit our section on contraception to find out more.
A few types of contraception also make some epilepsy medicines work less effectively. This could lead to an increase in your seizures.
Talk to your GP or local family planning clinic if you are thinking about using contraception. They can help you choose a form of contraception that will work with your epilepsy medicine and suit your lifestyle.
-
Food and drink
Some foods and drinks can affect how well epilepsy medicines work. For example, caffeine and alcohol may sometimes affect the levels of the medicine in your body. Your doctor or pharmacist can tell you if these or any other types of food or drink will affect how your medicines work.
Grapefruit can also affect how some medicines work. This is because a substance in grapefruit can interfere with how your body processes the medicine. It can affect the level of the medicine in your body and could increase your chance of having side effects.
Your doctor or pharmacist can tell you if you need to avoid grapefruit while taking your epilepsy medicine. It should mention this on the medicine patient information leaflet.
You can also check this on the British National Formulary (BNF) website.
