Frequently Asked
Questions
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%
feel a lack of information and resources are barriers to accessing support or treatment
they need
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%
of people with epilepsy experience stigma, ranging from subtle biases to significant misunderstanding.
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in 3
Nearly 2 in 3 people emphasise the urgent need for more community support and understanding to improve their quality of life
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The Voice for Epilepsy is a space to share stories, find trusted information, and connect with others who understand the journey. Together we raise awareness, inspire hope, and build a stronger voice for everyone affected by epilepsy.
What can I do to manage my epilepsy?
Self-management is what you do to take care of yourself. You can learn epilepsy management and keep an active and full life. Begin with these tips: Take your medicine Talk with your doctor or nurse when you have questions Recognize seizure triggers (such as flashing or bright lights) Keep a record of your
I am taking an anti-seizure medication but I am continuing to have seizures. What do I do?
Nearly 50% of people with epilepsy will become seizure-free with the first anti-seizure medication that is tried. If you do not become seizure-free with the first medication, or if it causes intolerable side-effects, the next step is usually to try a different anti-seizure drug. Your healthcare provider will select the most appropriate drug to try based on the
What is an epileptologist?
An epileptologist is a neurologist who has additional training and certification in the diagnosis and management of patients with epilepsy.
I just had a seizure for the first time. What do I do?
About 1 in 10 people will have a seizure in their lifetime. Having your first time seizure can be a frightening experience for the individual and others involved. Knowing what to do can help. First time seizures need to be evaluated by a healthcare provider to determine if the episode was a seizure and
How can I support other people with epilepsy?
One of the easiest ways to show your support is to talk about epilepsy. One of the most difficult challenges that people with epilepsy face is the stigma associated with the condition. By spreading awareness and educating others, you can provide epilepsy support and help erase the misconceptions that exist about epilepsy. You can also support the services provided by
When should an ambulance be called?
A convulsive (shaking) seizure lasts more than five minutes One convulsive seizure follows another without the person regaining consciousness in between The person has injured themselves during a seizure or is having difficulty breathing when the seizure has finished The person has three convulsive seizures in an hour If you have concerns about the
What do I do if someone is having a seizure?
DOs DON’Ts
Can you die from epilepsy?
The vast majority of people with epilepsy live long and healthy lives. As with many other medical conditions though, for some people there is an increased risk of dying caused by epilepsy. The possible causes of this increased risk include: More serious health problems, such as a stroke or a tumor.
Does epilepsy affect a person’s emotional well-being?
It is normal for a person who has been diagnosed with epilepsy to experience a range of emotions such as anger, frustration, fear, and sadness. Concern for the future and negative responses from friends and family can leave a person feeling vulnerable and alone. Living with epilepsy can result in personal challenges, but it does not have to result
Why is it important to take anti-epileptic drugs regularly?
The aim of taking anti-epileptic drugs is to obtain adequate control of fits. It is very important to maintain a constant level of the drugs in the brain to control seizures. In order to achieve that, a constant level of the drug in the blood is required. It is therefore, very important to take medicines regularly.
Can person with epilepsy drive?
A person with epilepsy is usually eligible for a driver’s licence if they have been seizure-free (on or off medication) for the past one year, have no side effects of medication that would impair driving and are under regular medical supervision.
What triggers epilepsy?
Triggers vary from person to person. Some people with epilepsy are able to very clearly identify situations that trigger a seizure, while others are unable to find a pattern to their seizures. A common way to identify seizure triggers is to keep a seizure record that includes tracking what happens before each seizure. COMMON TRIGGERS INCLUDE:
What causes epilepsy?
Epilepsy is NOT contagious – you can’t catch it, and you can’t give it to someone else. In more than half of cases, no clear known cause can be found. Some types of epilepsy are associated with genetic factors. Among the rest, anything that affects the way the brain works could increase the chance
How common is epilepsy?
Epilepsy is the most common, serious neurological disorder worldwide.More than half a million people in the UK have epilepsy, which equates to 1 in 100 people. Epilepsy can affect anyone, of any age, race, or sex, at anytime from any walk of life.
I have not had a seizure for years. Do I still have epilepsy?
If someone is taking anti-seizure medication to control their seizures, they are considered to have active epilepsy. The International League Against Epilepsy considers epilepsy to be resolved for individuals with an age-dependent epilepsy syndrome who are past the applicable age or if the individual has been seizure-free for 10 years and off medication for
If I have a seizure, does that mean I have epilepsy?
It’s not always epileptic seizures. Seizures can also happen because of other medical problems. These problems include: A high fever Low blood sugar Alcohol or drug withdrawal
Do people have seizures forever?
Some types of epilepsy are limited to a certain age group or stage of development, but in many cases epilepsy is a chronic, life-long disease. There are treatment options to help people achieve seizure-freedom. Medication will be effective for many people. Some people are good candidates for epilepsy surgery.
How is epilepsy treated?
There are many things a provider and person with epilepsy can do to stop or lessen seizures. The most common treatments for epilepsy are: MEDICINEAnti-seizure drugs are medicines that limit the spread of seizures in the brain. A health care provider will change the amount of the medicine or prescribe a new drug
How is epilepsy diagnosed?
Epilepsy is diagnosed by a physician or nurse practitioner. The healthcare professional will complete a medical history, asking questions about the seizure, such as what happened before, during, and after it. The person will have an electroencephalogram (EEG), which is a test that records brain waves picked up by metal discs (electrodes) placed
Do people get a warning before a seizure?
Sometimes people can feel a seizure coming on. However, warnings are not experienced by everyone with epilepsy. AuraSome people have an aura at the very beginning of a focal seizure or a generalised seizure. Technically, an aura doesn’t happen “before” the seizure, because it is actually part of the seizure. Some examples of auras
Why do people have seizures?
There are many potential reasons why someone could have a seizure. Some seizures are a symptom of an acute condition, such as an illness or a recent head injury. Some people will have an isolated seizure for no apparent reason and never have another one. When someone has epilepsy, they have an underlying
What is a seizure?
A seizure is a sudden burst of electrical activity in the brain that causes a temporary disturbance in the way brain cells communicate with each other. The kind of seizure a person has depends on which part and how much of the brain is affected by the electrical disturbance that produces the seizure. A
What is epilepsy?
Epilepsy is a common neurological disease characterised by the tendency to have recurrent seizures. It is sometimes called a seizure disorder. A person has epilepsy if they: Have had at least two unprovoked seizures, or Have had one seizure and are very likely to have another, or Are diagnosed with an epilepsy syndrome