Epilepsy is a common neurological disorder affecting 1%-2% of the population in New Zealand. Anybody of any age can develop epilepsy. Epilepsy is defined as a tendency to have recurrent seizures, (sometimes called fits).
A seizure is a sudden burst of uncontrolled or erratic electrical and chemical activity in the brain causing a temporary disruption of the brains normal function. This disruption results in the brain’s messages becoming changed or mixed up and produces some type of reaction within the person concerned.
Yes. There are many different types of seizures but they are classified into two main groups:
Partial - affecting only a part of the brain
Generalised - affecting the whole brain
A Focal Seizure with Awareness (old terminology - simple partial seizure) occurs when a small part of the brain is affected with the uncontrolled activity. The person is fully conscious and aware of what is happening. The area of the brain affected will determine the type of reaction the person experiences. The person may experience:
- an involuntary tingling or sensation (numbness, jerking, twitching, pain, etc)
- a stimulation of a sense (visual, auditory, taste, smell)
- an emotional change (fear, elation, anger, anxiety, depression)
- an altered psychological or cognitive state (déjà vu, hallucinations, recollections, heightened awareness, rush of thoughts, etc)
- a change in an autonomic function (skin cold / hot, pulse slow / racing, etc).
Focal Seizure with Awareness seizures may spread to become a focal seizure without awareness or tonic clonic seizure. A Focal Seizure with Awareness is sometimes called an aura or a warning occurring before the onset of a different type of seizure.
During a focal seizure without awareness a larger part of the brain is affected and the person’s consciousness is altered or impaired. The person looks as if they are sleepwalking or drunk or drugged. They may stand and stare, pick at their clothes, pick up or move objects, smack their lips or make chewing movements, talk in a meaning less fashion, wander about in an aimless manner. They are unaware of their actions or their surroundings. After the seizure they will be confused for a time and may not be aware the seizure has occurred. Sometimes a focal seizure without awareness develops into a generalised 'convulsive' seizure. This is called a secondary generalised seizure.
- Guide the person from danger
- Be calmly reassuring
- Stay with the person until recovery is complete
- Explain anything that they may have missed.
- Restrain the person
- Act in a way that could frighten them, such as making abrupt movements or shouting at them
- Assume the person is aware of what is happening, or what has happened
- Give the person anything to eat or drink until they are fully recovered
- Attempt to bring them round.
A tonic clonic seizure, (previously known as a grand mal seizure), is where the person may;
- become unconscious and fall if standing
- become stiff (muscles contract), breathing may be shallow or stop, may become pale, blue around the mouth, followed by –
- rhythmical muscle contracting (jerking / shaking) of the whole body
- breathing may be shallow or noisy
- may be saliva or froth from mouth
- bladder or bowel control may be lost
- usually last 1 to 5 minutes
- consciousness is regained slowly
- confusion and tiredness is usual.
Seizures occur when a person's seizure threshold is lowered. Most people with epilepsy will learn what their triggers are and adjust their lifestyle accordingly.
Some of the common triggers are:
- forgetting to take the medication as prescribed
- stress; a person needs to recognise their own stressors and practice stress management
- lack of sleep or overtired
- excitement, boredom, frustration
- missed meals - blood sugar fluctuations
- hormone fluctuation
- flashing lights for those who are photosensitive
- sensory - certain sounds, smells etc, for people with reflex epilepsy
- illness, usually associated with a high temperature.
Anybody of any age can develop epilepsy. About 1%-2% of the population will have it at some stage of their lives. It is often thought of as a childhood condition but many of the elderly are being diagnosed particularly as a result of having a stroke.
Many people have their seizures successfully controlled with anti-epileptic medication (AEDs). This is the most common way that epilepsy is treated. AEDs do not cure epilepsy. Their aim is to prevent seizures by acting in some way to control the working of the brain. How they do this is not totally understood but their effectiveness in treating epilepsy has been scientifically proven. There are several different anti-epileptic drugs available, some of which are more suitable for different seizure types than others. Your health professional can inform you as to the best medication for your seizure type.
Other treatments are;
- Surgery to remove a cause of seizures in the brain is an option in a small number of cases. It may be considered when medication fails to prevent seizures. It is only possible for certain causes in certain areas of the brain. So, only a small number of people are suitable for surgery. Also, there is risk involved in brain surgery. However, techniques continue to improve and surgery may become an option for more and more people in the future
- Vagal Nerve Stimulation is an option for some people
- The Ketogenic diet, a diet that needs to be supervised by an experienced dietician, is useful for some children and adults with particular types of epilepsy that will not respond to medication
- Complementary therapies such as aromatherapy may help with relaxation and relieve stress, but have no proven effect on preventing seizures.
Medication should never be stopped unless on the advice of your medical practitioner. If you suddenly stop taking your medication it can cause non stop seizures or status epilepticus which is potentially fatal. For some people even missing one dose can be enough for them to have a break through seizure. It is important to have strategies in place to remember to take every dose as prescribed. Your local ENZ Information and Support Specialist can help you put strategies in place and discuss the issues with you.
Epilepsy New Zealand Information and Support Specialists can be contacted on 0800 EPILEPSY.
The regulations in New Zealand are that a person has to be seizure free for one year without a change of medication. If a person only has seizures when they are asleep or upon waking they may drive if this seizure pattern has been established for at least one year.
Yes, you can have children if you have epilepsy. There is a greater than 90% chance of having a normal pregnancy and delivery. There is however a slightly higher risk than the rest of the population of having a child with a malformation probably due to the anti epileptic medication that you are taking. The most important thing is to have a planned pregnancy where all the issues can be discussed with your medical provider.
For most people with epilepsy social drinking of one glass of wine or two cans of standard beer should not increase the chances of having a seizure however the alcohol can interact with anti-epileptic medication making it less effective. Alcohol can also increase the side effects of the medication. For this reason many people with epilepsy prefer to avoid all alcohol and so keep themselves as safe as possible.
Yes. About 75% of people with epilepsy are seizure free and can lead normal meaningful lives. They can be employed in a full range of trades and professions; however if seizures are still occurring then it is important to take this into consideration when applying for a job. Strategies for issues of safety, stress, hours of work and triggers may need to be addressed. The local Epilepsy Information and Support Specialist could help you with this. Phone 0800 EPILEPSY.
There are two main factors that affect whether someone has epilepsy. One factor is whether the person has an injury to their brain, such as from an accident or an infection. The other factor is their 'seizure threshold'.
Seizure Thresholds and Genetics
The seizure threshold is a person's level of resistance to seizures. Everyone has a seizure threshold and anyone can have a seizure if the conditions are right for them. If someone has a low seizure threshold they may suddenly start having seizures. If someone's threshold is high they are less likely to start having seizures unless something happens, for example an injury to the brain.
The seizure threshold is part of everyone's genetic make-up (how we each inherit our characteristics) which is passed from parent to child. In some families there are several people with epilepsy. In others there may be only one person who has epilepsy. The chance of a child developing epilepsy - if his or her parents have epilepsy - depends on the seizure threshold of both parents.
Sometimes epilepsy happens as part of an inherited medical condition, passed from parent to child. This is rare, but includes the conditions neurofibromatosis and tuberous sclerosis. Genetics play a part in the development of epilepsy in everyone, but how important this is varies. As every situation is different, it can be helpful to talk about this with a doctor who specialises in genetics (geneticist).
The majority of people with epilepsy have normal sexual desires although for some with complex partial seizures their libido may be lowered. It is thought that some of the anti epileptic medications can also lower the individual's libido. A change of medication may be helpful.
Epilepsy New Zealand has Information and Support Specialists throughout the country. They are well trained with a good knowledge of epilepsy and the communities they work in. They are happy to talk confidentially to you on the telephone, are available for face to face appointments, lend you books or videos, and advocate with and for you if that is required. They are only a phone call away 0800 EPILEPSY.
Your regular medical provider is very important if you have a diagnosis of epilepsy so that your medications can be monitored and adjusted as necessary.
Epilepsy New Zealand Information and Support Specialists are available to provide you, your family and associates with information:
- about epilepsy in general
- about your particular type of epilepsy
- on medication for epilepsy and how to use it for the best results
- on life style issues that impact on your epilepsy
- how to ‘live well with your epilepsy’
- Other services they provide are
- support you as you interact with employers, schools, medical appointments, community or government departments, etc
- information sessions throughout the community to enable more people to be aware of and understand epilepsy
- web sites for you to visit online .
Epilepsy Information and Support Specialists can be contacted anywhere in New Zealand on 0800 EPILEPSY.
No, epilepsy is neurological condition. It is not a mental (psychiatric) illness.
It depends on the type and cause of your epilepsy. Many people who develop seizures will have them completely controlled with medication. Some of these people will need to continue with medication for some years, perhaps permanently, but some people will be able to very gradually withdraw from their medication, with medical guidance, after two or so years without having any seizures and remain seizure free. Some people, however, have epilepsy that is more difficult to control and they may need to try several different medications and/or combinations of medications before they obtain better control of their seizures. There are also a number of people where complete seizure control may not be possible. Talk to your medical provider about your particular situation.