Being told that you or someone you know has epilepsy can be frightening. There is a lot to learn about the condition, and everyone's experience of epilepsy is different. You probably have lots of questions about what is happening and why. Here we answer some of the most commonly asked questions about epilepsy. Learning about epilepsy can help you feel more confident about managing the condition so that you get the best care and get on with your life with confidence.
Here are answers to a few frequently asked questions. You can also listen to the epilepsy ambassadors' answers to your questions.
Click on a question in the list below to read the answer
About Epilepsy
What is epilepsy?
Epilepsy is a tendency to have seizures. But many things can cause people to have seizures. To have epilepsy you have to have had at least two seizures and been diagnosed by a specialist.
What is a seizure?
A seizure is the result of a temporary disruption in the brain's electrical activity. This can affect people in many different ways. Some people just sit and stare for a few moments. Others fall to ground and lose consciousness (faint). Some may jerk their limbs or go very stiff or very floppy. Some people act confused or wander round acting strangely (e.g. picking things up, picking at their clothes). Most seizures last just a few seconds or a few minutes.
What causes epilepsy?
There are many reasons why someone has epilepsy. In children, head injuries, brain infections, inherited disorders or problems during birth can lead to epilepsy. Older people may get epilepsy after a stroke, vascular problems, Alzheimer's Disease, cancer or trauma, such as a car accident. Other causes include excessive alcohol and drug abuse. However, most people (6 out of 10) never know the cause of their epilepsy.
Diagnosis
What tests will I need?
Doctors use many different tests when diagnosing epilepsy. For example, some people may have blood tests or heart checks to make sure that another condition, such as diabetes, isn't the cause of their seizures. Other tests look at the activity of the brain. There are many different types of tests, some of which include EEGs (electroencephalograms), video telemetry, brain scans, MRI (magnetic resonance imaging) scans and CAT (computerised axial tomography) scans. It is unlikely you will need all of these. The tests doctors recommend will also depend on what you can tell them about your seizures and which test they think will help them find out what is causing your seizures.
I had a normal EEG, but my doctor says I have epilepsy. Why?
An EEG (electroencephalogram) is a painless test that makes a recording of the activity in the brain. It is one of the most common tests used when doctors are investigating epilepsy. For some people the only time the EEG will pick up some irregularity is when they have a seizure. If you did not have a seizure when you had this test the results may be normal. This is because your brain behaves normally in between seizures. But you could still have epilepsy.
I have been asked to stay awake all night and then have an EEG. Why?
Some people are more likely to get brain seizures when they are tired or when they are falling asleep. For this reason, they may be asked to stay awake for part of the night and then to go to sleep when having the EEG. This is called a sleep-deprived EEG.
I have to have video telemetry, what might this show?
During video telemetry you have an EEG and are also videoed at the same time. This test may last a few days and usually takes place in an epilepsy centre. You can move around the room, but a video will record what happens to you when you have a seizure. The reading from the EEG is then compared with the video. This can help doctors decide what type of seizures a person has.
Treatment
Why do I need to take my medication at the same time each day?
Antiepileptic drugs work best when you take them the way your doctor prescribes. You don't have to take them at exactly the same time each day, but it can help if you get into a routine, so that you take them at around the same time or times each day. The important thing is that the doses are evenly spaced out, so that you have a constant amount of drug in your bloodstream. If you miss one dose, you're unlikely to have a seizure, but the risk of a seizure may be increased.
Will I have to take medication for the rest of my life?
If you haven't had a seizure for two years or more your doctor may suggest you gradually come off medication to find out if you still need it. There's no way of knowing what will happen to you if you stop your medication. You may not get any seizures. But there is a chance that your seizures could come back. Some people do not want to take this risk. Your doctor will talk to you about what is best, and monitor you closely if you choose to try to stop medication.
What is a ketogenic diet?
A ketogenic diet may be used for some children with epilepsy that is difficult to control and that has not responded well to several treatments with drugs. It is a high fat, adequate protein and low carbohydrate diet that is tailored to the individual child. It should only be used under the supervision of a doctor. The diet has to be strictly followed and the child will need to take vitamin and mineral supplements.
What Can I Do About my Epilepsy Management?
What can I do to manage my epilepsy better?
There are several things you can do:
- Understand your epilepsy and how it is treated
- Keep a medical history and seizure diary, so you can become involved in your medical care
- Take your medications as your doctor tells you
- Avoid things that bring on your seizures. For some people this is lack of sleep, for others it may be too much alcohol.
- Keep appointments with your doctor. If you are having seizures, you may need to change your medicine or dose.
What is status epilepticus?
This is when seizures do not stop after 30 minutes or occur continuously without recovery time in between. It is life threatening. Prolonged seizures can damage the brain and cause heart, lung and kidney problems. These seizures are treated in the hospital with intravenous medication.
Many people can prevent this condition by taking the right dose of their epilepsy medications regularly.
