Epilepsy and living well with it

Treatment can help most people with epilepsy have fewer seizures or stop having seizures completely. Anti-seizure medicines (ASM) used to be known as anti-epileptic drugs. ASMs can be very effective in stopping or reducing how often you have seizures. If you have been prescribed an ASM, take your medicine exactly as prescribed.

If you have any questions or are unsure of what to take and when, check with your pharmacist, doctor or nurse. This is probably the most effective way to live well with epilepsy. Missing doses of medicine increases the risk of more seizures. Stopping your ASM suddenly is very dangerous as it can not only increase your risk of having seizures but the seizures you have can be more severe. Read more about ASMs.

Having regular reviews of your epilepsy and treatment with your GP/nurse team is an important part of your epilepsy management, especially if your seizures are not well controlled or you think you may have side effects from your ASM.

There are many ASMs available in Aotearoa New Zealand, and your doctor will work with you to get the best possible seizure control with no or minimal side effects.

Side effects can be physical or psychological. They can occur soon after starting an ASM or many years later. These appointments are a good opportunity to talk to your doctor about how you feel your treatment is going and any problems you're having. Picking up on small problems early can help prevent them becoming bigger issues. How often you need to have a review depends on how well your epilepsy is controlled.

Try to identify your triggers, as avoiding these may lessen the chances of having a seizure. Some people's seizures are brought on by certain situations. Triggers can differ from person to person, but common triggers include tiredness, lack of sleep, stress, alcohol, recreational drugs and missing doses of your ASM.

If you know what triggers your seizures, you may be able to avoid these triggers and lessen the chances of having a seizure. Keeping a diary can be a good way to help work out what your specific triggers may be.

Read more about mobile apps for epilepsy that can help you keep track of your seizures and medicine.  

Having seizures can sometimes put you or others at risk of harm, eg, if they happen while you're cooking, driving or swimming. Being aware of different hazards can help you reduce the risk or avoid injuries and accidents caused by seizures. Some tips to help you stay safe at home include using fire or heater guards to prevent you falling directly on them, not locking the bathroom door and placing saucepans on the back burners with handles facing away. 

It might be helpful to discuss your epilepsy with your employer so you can work in the safest environment. 

Read more about safety around the home(external link)(external link) and use this form(external link)(external link) to create your own personal safety plan.(external link)(external link) 

There are lots of things to think about when you have epilepsy and it’s normal to have lots of questions. Working through a safety checklist(external link)(external link) is a helpful way to make sure you’ve got the essentials covered. Your healthcare team will support you to do this and can help answer any questions you may have.

Getting a good night's sleep is important for your seizure control, as a lack of sleep can trigger seizures. If you have a trouble sleeping, try to avoid stimulants such as caffeine and spending too long on screens. Creating a dark and quiet sleeping environment can be helpful. Read more about sleep hygiene.

Most people with epilepsy can take part in sports and other leisure activities. Exercising regularly can increase the strength of your bones, relieve stress and reduce fatigue, which can reduce the likelihood of seizures. Exercise also helps you to sleep well. There are some precautions you might need to take if your seizures are not well controlled. For example, you need to avoid swimming or doing water sports on your own and avoid using certain types of gym equipment. Read more about epilepsy, sports and leisure.(external link)(external link). 

Eating regularly and well is also important to maintain your health. If you are on any specific diet such as a vegan or keto diet, please discuss this with your doctor. 

If you have seizures, you are at risk of having an epileptic seizure while driving, which can place you and other road users at risk. Any seizure-like symptoms need to be discussed with your doctor right away and you must not drive until a doctor says it is safe for you to drive again. According to the New Zealand Transport Agency guideline, you need to be seizure free for 12 months before returning to driving. Learn more about epilepsy and driving.

Having the right help and support during a seizure can help prevent you from getting serious injuries, so encourage your friends, family and whānau to learn some basic seizure first aid.

Some types of seizures require little more than reassurance. However, if a person has a seizure that causes them to fall down, convulse (where their muscles relax and tighten rhythmically causing the body and limbs to jerk), breathe noisily and with difficulty and lose consciousness, first aid and careful observation are required. Learn more about first aid for epilepsy.

Epilepsy does not affect your ability to have children, and there's no reason why you cannot have a healthy pregnancy. But if you're thinking of trying for a baby, it's best to discuss your plans with your doctor so that your pregnancy can be managed safely for both you and your unborn child. 

This is because some epilepsy medicines, particularly sodium valproate, can harm an unborn baby. Your doctor may suggest switching to another medicine if there's any risk to your baby. Also, depending of what ASM you are on, the dose might need adjusting during pregnancy.

It is important that you do not suddenly stop your anti-seizure medicines if you think you might be unexpectedly pregnant. This can be dangerous for both you and your baby. Get in touch with your family doctor urgently so you can receive advice as to what best to do for you and your unborn child.

It is also important to discuss safety of breastfeeding your baby while taking your ASM, as well as safety considerations for looking after your infant. For example, it is safer to change your baby on the floor rather than using a changing table and to get other family members to bath your baby. You can also discuss the safety of using a buggy or stroller.

If you don’t want to get pregnant, ask your doctor about the best type of contraception to use, as some epilepsy medicine can affect how some contraceptives work.