A note about shared decision making
Talking with your epilepsy specialist is important so you can make decisions together about your care. They should explain things clearly, listen to any concerns you have, and help you understand your choices.
If you care for a child, young person with epilepsy or someone with epilepsy and a learning disability, it’s important that they are involved in conversations about their needs. They should also have access to information appropriate to their developmental age and circumstances.
Because epilepsy affects everyone differently, it’s important to talk about what matters to you, your daily life, and what you want to achieve. This helps you get the right support and make choices that help you manage your epilepsy and live well.
Find out more about standing up for what’s important to you and telling people what you want.
These are some topics to talk to your healthcare professional about.
1. SUDEP (Sudden Unexpected Death in Epilepsy)
SUDEP is rare, but it is important to understand the risks so you can minimise them where possible.
NICE guidelines say that you, your family and carers should have the opportunity to talk about SUDEP with your healthcare professional.
Everybody’s risk of SUDEP is different. Your risk will depend on the type of seizures you have and how well controlled they are. There are things you can do to reduce the risk.
Your healthcare professional can help you.
Find out more about SUDEP and epilepsy-related deaths.
2. Medications and side effects
It’s very important that you understand what epilepsy medication you have been prescribed and why. Ask your healthcare professional to explain:
- The pros and cons of taking any epilepsy medicine
- How the medication should be taken
- Possible interactions with any other medicine you take
- Any other possible side effects and how to cope with these
- Any precautions for pregnancy
Different versions of the same medicine
Sometimes you may be prescribed a different form of your epilepsy medicine. There are rules to make sure this does not affect your condition. Find out more about switching between different versions of epilepsy medicine.
It is important to have regular reviews with an epilepsy specialist so you can review your epilepsy medicine. See below.
3. How to follow up and raise concerns
How often you should be seen by an epilepsy specialist depends on several things, including:
- How epilepsy affects you
- If you are at high risk of SUDEP
- If you have drug-resistant epilepsy
- If you have additional needs, such as a learning disability
- If you have other health problems
It’s important to make sure you know how often you need to see your epilepsy specialist. They can help you develop a care plan.
Remember that you can ask for a review of your care if you:
- Have any concerns about your treatment. For example, if you think any side effects are getting worse
- Want to reduce, change or stop taking epilepsy medicine
- Want to get pregnant
Do not stop taking your epilepsy medicine before speaking to your healthcare professional. This may increase your risk of seizures.
4. Alternative treatment options or surgery
How often you should be seen by an epilepsy specialist depends on several things, including:
Alternative treatment options or surgery
Some people try 2 or more epilepsy medicines at the prescribed dose and still have seizures.
It can take time to get your treatment plan right. This does not necessarily mean that you have drug-resistant epilepsy.
But if you are having problems with your medication, it is still worth asking your epilepsy specialist if alternative treatments would benefit you. NICE guidelines say that the following may be an option for you:
If you are having problems controlling your seizures, ask your specialist if you can be referred to an expert in alternative treatment options.
5. Risk management and safety
There are risks in everyday life for everyone. But these risks may increase if you, or someone you care for, has epilepsy.
Your healthcare professional should talk to you about how seizures may put you at risk of accidents or injury.
We also have lots of information to help you stay safe. Find out more about:
6. Seizure emergencies
Status epilepticus is when a seizure lasts a long time or when you have one seizure after another without recovering in between.
You may be prescribed emergency medicine if you are at risk. This is also called rescue medicine.
You can talk to your healthcare professional about whether you are at risk of status epilepticus and if you need rescue medicine.
7. Memory problems
Some people with epilepsy have memory problems, which may or not be related to the condition. Memory problems may be caused by:
- Seizures
- Epilepsy medicines
- Emotional problems, such as anxiety or depression
- Lack of sleep
- Stress
Memory problems can impact everyday life. For example, it may affect work or school.
It’s important to talk to your healthcare professional about any memory problems you are having. They may be able to:
- Review your medication
- Arrange a neuropsychological assessment. ‘Neuropsychological’ means looking at the processes that the brain carries out, including memory
- Refer you to a specialist for more support
Find out more about memory problems and what strategies you can use to help you remember things.
8. Contraception, family planning and menopause
Woman and people who menstruate with epilepsy have specific needs that change as your hormones, body and priorities change. It’s important to have regular reviews of your epilepsy medicine and understand the pros and cons of your options.
It’s important to talk to your healthcare professional about things like:
- If your menstrual cycle affects your epilepsy (catamenial epilepsy)
- If your epilepsy or epilepsy medicine affects your menstrual cycle
- What type of contraception is best for you. This depends on your personal situation and the epilepsy medicines that you take
- Planning a pregnancy. Some epilepsy medicines can cause problems for unborn babies if taken during pregnancy
- If epilepsy or epilepsy medicines affect your sexual health
- Bone health (weak bones can affect women more than men, for example after the menopause).
- How hormonal changes in perimenopause/menopause may affect your seizures
9. Your mental health and wellbeing
Everyone feels low from time to time. But people with epilepsy are at a higher risk of mental health problems like stress, anxiety or depression.
Mental health problems may also make your epilepsy worse. For example, stress may be a seizure trigger for some people.
It is important to talk to your GP, specialist epilepsy nurse or epilepsy specialist about how you are feeling emotionally.
They can assess your symptoms and help you access the support and treatment you need. They may refer you to a mental health specialist.
Find out more about epilepsy and your wellbeing.
10. Recreational drugs, alcohol and common non-prescription medicines
It’s important to take epilepsy medicine exactly as prescribed because it helps keep seizures under control and protects your overall health.
Some things can increase the risk of seizures or interact with your epilepsy medicine. These include:
- Alcohol
- Over-the-counter medicines, such as cold and flu remedies, antihistamines, or decongestants
- Some complementary therapies, supplements or herbal products
- Recreational drugs, such as cannabis (medical cannabis may be suitable for some people with epilepsy)
It can be helpful to talk to your healthcare professional about anything that might affect how well your medicine works. This can help you manage your treatment more effectively and keep your epilepsy as well controlled as possible.
Your healthcare professional is there to support you, not to judge. They should treat you with respect, sensitivity, and understanding, so don’t be afraid to ask questions.