Understanding your epilepsy is a key part in knowing how to live well with it. Here you will find some common questions, and brief answers, around this very complex condition.
- What is epilepsy?
Epilepsy is a neurological condition whereby there is a tendency to experience recurrent, unprovoked seizures. These seizures occur when neurons send out abnormal electrochemical signals to the brain which results in an alteration in sensation, behaviour, and consciousness. See our “What is epilepsy” fact sheet for more information.
- How will I be diagnosed with epilepsy?
Accurately diagnosing epilepsy can be challenging since there is no test for epilepsy. Instead a neurologist will ask you a series of questions about your seizure behaviour and also use diagnostic tests such as an EEG, MRI, blood tests, and a neurological examination to piece together why these events are happening.
- What will be my treatment options?
Medications are generally used once a person has been diagnosed with epilepsy. Neurologists will attempt to stop seizures using the lowest dosage of medication available. Medications successfully treat most people living with epilepsy.
- What if my medication doesn’t work?
There is a wide range of medications available for the neurologist to try. Sometimes, it may be necessary to use two or more medications at the same time. The neurologist will explain how to take your medications so that there are few side effects. It is important to notify the health professional if there are problems taking medications.
- What alternative options are there to treat my epilepsy
Alternative treatment options, such as the ketogenic diet and CBD oil, are used only when all medication options have been tried, and failed. A neurologist will discuss these treatment options when you are deemed to be drug-resistant. Sometimes brain surgery can be considered if it is known where the seizures start in the brain.
- How can I keep track of my seizures?
Using a seizure diary is a good way of keeping track of your seizures. The EWCT seizure diary is a concise diary that helps you to understand your seizure type, how often your seizures occur, and plot how effective your medications are in controlling them. It will help you and your neurologist to understand your possible seizure triggers.
- What is a seizure trigger?
This is an event or situation that can lower the seizure threshold and make a person more vulnerable to seizures. If you learn which things trigger your seizures, then you can learn to manage your epilepsy more effectively. Common seizure triggers are forgetting to take your medications, stress, sleep deprivation and being unwell.
- What if my seizures get worse?
It is important to immediately communicate any problem with your health professional. It may be that there needs to be a review of the medications that you are taking. Don’t struggle alone with your epilepsy. Help is at hand in the hospital, with your GP, your local pharmacists, or with your EWCT epilepsy advisor.
- Can I die from epilepsy?
People can die from the injuries caused during a seizure such as in drowning, or from a seizure that does not stop (status epilepticus), but this is uncommon. Rarely people die from SUDEP (Sudden Unexpected Death by Epilepsy). Routinely taking medications and understanding seizure triggers helps to prevent unfortunate deaths. By asking oneself, “If I should have a seizure now, what will happen to me?”, helps with putting in place ‘health and safety’ strategies. The home is the most common place for seizure-related accidents, followed by street and workplace accidents. For more information see our “Safety in the home” and “Safe cooking strategies for people with epilepsy” fact sheets. ACC in New Zealand will normally cover the cost of any seizure-related injury.
- How can I be helped to understand my epilepsy better?
EWCT has a community-based epilepsy advisor who will work closely with you so that you and your family/whanau/friends/employer and others get to understand what your seizure looks like and how people can help you during and after a seizure. The advisor will make an individualised epilepsy action plan for you that can be shared and discussed.