Publication date Sep 14, 2007
Epilepsy is a serious condition that causes people to have seizures (fits). But medicines work well to keep it under control. With treatment, most people get fewer seizures or none at all.
If you or your child has epilepsy, the normal electrical activity in the brain gets disturbed from time to time. This leads to seizures.
A seizure affects how your brain works. What happens to you during a seizure depends on what part of your brain it affects. During a seizure, you may feel strange and act oddly. Your muscles may go limp or stiff, and you may shake, twitch or black out. Seizures tend to be over quickly.
Seizures can affect nerve cells in one particular part of your brain. These are called partial seizures (sometimes called focal seizures). Or they can affect nerve cells all over your brain. These are called generalised seizures.
Your doctor may not be able to tell you why you or your child has epilepsy. Around 7 in 10 people with epilepsy never find out the cause. But some people's epilepsy is known to have a cause: such as an illness, an infection, an injury or a problem in the way their brain developed.
The only symptom most people get from epilepsy is having seizures. Seizures can last for a few seconds or several minutes. Once a seizure ends, some people know what happened to them but others don’t remember. Seizures are not usually harmful. But if you see someone having a seizure that lasts more than five minutes, call 999 for an ambulance. The person having the seizure may need emergency treatment to stop it.
After a person's first seizure, their doctor should send them to a specialist for tests. The specialist will do brain scans and other tests to try to find out if the person has epilepsy.
There are lots of different types of seizures. Most people will only get one type. It's important to work out what type of seizure you or your child has had. Some treatments work best for certain types of seizures. Different seizures affect your brain differently.
Partial seizures affect just one part of your brain. There are two types of partial seizures: simple partial seizures and complex partial seizures.
Generalised seizures affect your whole brain. During most of these seizures the person blacks out (loses consciousness). These are the main types:
The usual treatment for epilepsy is taking medicines. Doctors usually wait for someone to have at least two seizures before they start treatment. Epilepsy medicines cut down or stop seizures for most people. Most epilepsy medicines have side effects. You’ll need to work with your doctor to find the medicine (or combination of medicines) that works best for you.
There are four main medicines that doctors use to control epilepsy. Their names (with brand names) are carbamazepine (Tegretol), phenobarbital, phenytoin (Epanutin) and valproate (Epilim and Episenta). These medicines have been used for many years to control all types of seizures. Your doctor will probably start you on one of these medicines first.
There’s not enough research to show for certain which of these medicines works best. You may need to try different ones to see which works best for you.
About 2 in 3 people with epilepsy can control their seizures with just one epilepsy medicine. The seizures may stop, be less severe or happen less often.
About half of all people who take epilepsy medicines get side effects. Common side effects include dizziness, drowsiness, nausea, headaches, skin rashes, exhaustion, lack of coordination, confusion, upset stomach and weight gain (with valproate) or weight loss (with carbamazepine). Phenobarbital can cause depression. Phenytoin can cause problems sleeping. Valproate can cause temporary hair loss.
If you get side effects, your doctor may cut down the dose and wait two weeks before increasing it again. Some people find the side effects pass. Or your doctor may switch you to another medicine.
You should see your doctor immediately if you or your child gets a rash while taking any epilepsy medicines. Although the rash will probably go away, it can develop into a serious (and sometimes fatal) skin condition called Stevens-Johnson syndrome.
If you are taking one of the standard epilepsy medicines, but you are still getting partial seizures, your doctor may suggest you take a newer epilepsy medicine as well. This might reduce your seizures, but might also increase your side effects.
Newer medicines include gabapentin (Neurontin), lamotrigine (Lamictal), levetiracetam (Keppra), oxcarbazepine (Trileptal), tiagabine (Gabitril), topiramate (Topamax) and zonisamide (Zonegran). There’s no research to show which works best.
Side effects of the newer epilepsy medicines include dizziness, headache, stomach upsets, tiredness and headaches. But the side effects vary a lot between these medicines. Ask your doctor which is likely to cause least side effects for you.
Sometimes doctors recommend these newer epilepsy medicines instead of the standard ones, if the standard ones cause bad side effects. These newer medicines are also less likely to cause birth defects, so sometimes they are tried first for women with epilepsy. But there’s not enough research to say how well they work on their own.
Women with epilepsy usually need to carry on taking epilepsy medicines during pregnancy. But some medicines, especially valproate, can cause birth defects. It’s very important to talk to your doctor if you are planning to get pregnant. You may need to switch to another medicine. If you don’t want to get pregnant, talk to your doctor about the best type of contraception to use. Carbamazepine, phenobarbital, lamotrigine, oxcarbazepine and topiramate can stop the contraceptive pill from working properly.
You may find it helpful to learn about epilepsy, so you know what to expect and how to live it. Ask your doctor if there is an education programme you can attend.
People who go on an education programme sometimes have fewer seizures afterwards. That might be because the education programme helps them take their treatment the right way or avoid things that can trigger a seizure. Children who go on these programmes often say they feel more positive and confident about life and this helps them to do better at school.
Most people with epilepsy lead a full, healthy and active life. There is very little that epilepsy stops them doing.
If you've had only one seizure, you may not have another. Nearly two-thirds of people don't have another seizure in the two years after their first. But if you've had two or more seizures, you are very likely to have more. It's unlikely that the seizures will go away without treatment.
You or your child may be able to stop taking medicines if the seizures stop. But if the seizures don't stop, you may need to take medicines for the rest of your life. If you have been free of seizures for two years, you could talk to your doctor about stopping your medicines. But don’t do this without a doctor’s help. Most people need to reduce the dose very gradually. Your chance of having another seizure goes up again when you stop taking your medicines.
Most seizures are not harmful. But they can increase your chances of having an injury. Very rarely, people with epilepsy can have a bad seizure that lasts a long time. Doctors call this status epilepticus. It can be dangerous.
Most women with epilepsy can get pregnant, and they have more than a 90 percent chance of having a normal, healthy baby. If you're planning to get pregnant, you should discuss your epilepsy treatment with your doctor first.
If you've had a seizure, you must stop driving, even if you haven't been diagnosed with epilepsy. You need to write to the DVLA to let them know you've had a seizure. The DVLA will send you a form to fill in and ask if they can contact your GP. The DVLA will then write to let you know whether you can keep driving or not. If you can't, you will have to send in your driving licence. You can reapply for your licence when you have been free of seizures for 12 months.
If medicines don’t work to control your epilepsy, you may be suitable for surgical treatments. This is a big step and you will need lots of tests to be certain surgery is likely to help you. Your doctor will explain the types of surgery that might help, if your medicines are not working.
The National Society for Epilepsy is a UK charity offering advice and support to people with epilepsy and their families. You can call their helpline on 01494 601400 or see the website http://www.epilepsynse.org.uk/.
This information does not replace medical advice. If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.
© BMJ Publishing Group Limited ("BMJ Group") 2007. All rights reserved
This information does not replace medical advice.
If you are concerned you might have a medical problem please ask your Boots pharmacy team in your local Boots store, or see your doctor.