General information about seizure disorders

1. What happens when someone has a seizure?
A seizure is a result of a temporary electrical disturbance within the brain. The nerve cells (neurons) within the brain communicate with one another through tiny electrical impulses and when this activity becomes disturbed, abnormal electrical impulses fire at a much faster rate resulting in a seizure.

The type of seizure and how it looks depends on where in the brain the seizure is and where it spreads. The brain has areas that control different things, so for example if the seizure activity happens in the part of the brain associated with taste, then taste will be altered or enhanced - eg. an unusual taste in your mouth. Seizure activity can result in changes in sensations, behaviour, emotions, movement and consciousness.

2. Should I put a spoon in my friends mouth when they are having a seizure or 'fit'?
No, do not put anything in the mouth of a person having a seizure.This would be quite dangerous. It is actually impossible for a person to swallow their tongue.

3. How long do seizures need to last before they cause brain damage?
Any episodes of prolonged or repeated seizures, lasting longer than 60 minutes can cause neuronal damage and loss. This is a condition called status epilepticus and it is important to get medical treatment as soon as possible

4. Are people with seizure disorders normally aggressive?
No. Aggression is no more prevalent amongst people with epilepsy than it is in the general population. People with epilepsy may experience aggression or mood swings as a consequence of their seizures, medications, acceptance of their condition, or any other outside factors contributing to their general well-being.

5. How common are seizure disorders?
Epilepsy is the most common serious brain disorder in the world today, but its prevalence is difficult to determine. It is estimated 1-2% of the worldwide population is affected by epilepsy.

6. Will I ever grow out of the seizures or will I always have seizures?
As each person is different, this is difficult to determine. It can depend upon the seizure type, frequency and diagnosis. There are some epilepsy syndromes where seizures stop as you grow, but these are generally childhood syndromes. To minimise the risk of having seizures it is advisable to take your medications, have enough sleep, reduce stress, and avoid any triggers of the seizures.

7. So far seizures have only occurred during sleep. Are they likely to occur when awake?
Nocturnal seizures usually remain confined to sleep, as they are triggered by that sleep state. Changes in seizure patterns can occur, particularly in extenuating circumstances mentioned below. So wakeful seizures can never be out-ruled, although the chances are very small. The possibility of having a seizure when awake is increased with influences such as stress, lack of sleep, or missed medication so it is a good idea to keep this in mind and look after yourself.

8. Will the seizures get worse with age?
The natural course of an epilepsy is not well known because of the widespread use of antiepileptic drugs, so there is no clear or definitive answer to this. Epilepsy is a common neurological disorder in childhood, and in many children the seizures remit, but in others the disorder continues and may change or affect adult life. There may be a cessation, reduction, change or increase in seizures. Each individual situation is different.

9. When can I say I no longer have a seizure disorder?
Approximately 70–80% of people with epilepsy will stop having seizures for 5 years +. Depending on the type of epilepsy and with consultation with your neurologist, stopping medication can be justified in people who have a seizure-free period of usually 2 years or more. If someone is seizure free for 2 years once off medication and their EEG is within normal limits (no epileptiform discharges) then they may be considered as not having epilepsy. This is different for each person of course, and it is important to remember that the seizure threshold (tendency to have a seizure) of someone who has had seizures in the past, may be lower than that of someone who has never had a seizure. Meaning they are more likely to have a seizure given certain circumstances.

10. Can people die from epilepsy
The risk of death is marginally higher amongst people with epilepsy. Death can occur unexpectedly due to causes such as: drowning, suffocation, accidents, falls or unknown during or after a seizure.

Triggers and Causes

1. Why have seizures suddenly started again after a long period of being seizure free?
Some people may have a long period of remission and then experience breakthrough seizures. This can be due to a number of reasons. They may occur at a change in life, such as puberty or menopause, or be related to illness, both factors can affect the absorption and metabolism of the medications. They may happen during a change of medication or from the introduction of another medication not related to epilepsy. They may simply be a result of a great deal of stress, physical, mental or both. Sometimes there is no clear reason. This is a time to revisit the neurologist and review changes in medications.

2. Why have seizures started at this age?
Many seizure disorders or syndromes have an age-related onset. The majority of these are diagnosed before the age of 20 or after 65 years. Epilepsy can occur at any time of life though.

3. Why do my seizures occur at the same time, every time?
There are several reasons why there may be a pattern to your seizures. Some seizures are state related and only occur in certain states, such as sleep (NREM) or on awakening in the morning. Seizures that only occur in the evening may be due to tiredness or stress. Some seizures may be medication related. For instance, if you are only taking tablets once a day and experiencing seizures before taking the next dose, then the drug levels in the bloodstream may be too low.

There also may be exposure to triggers or precipitants of the seizures at certain times of the day only. For example, someone who is photosensitive may be on transport at dawn or dusk where the light is flickering when driving past trees or buildings, and only experience seizures at these times. Keeping a good record of your seizures eg time of seizure, what you were doing before the seizure will help to identify if there is a pattern and may also identify a trigger..

4. Is excessive alcohol a cause of seizures?
It is commonly thought that alcohol is a frequent cause of seizures in people with epilepsy. However, there is little evidence that small amounts of alcohol causes seizures.

Alcohol abuse may be accompanied by seizures in two situations. On the one hand, people with alcohol addiction with or without epilepsy experience seizures sometimes with heavy drinking but more frequently on withdrawal. On the other hand, seizures may be precipitated in people without addiction with epilepsy after 'binge' drinking. Seizures will usually occur as a result of rapidly falling alcohol blood levels, especially when excessive alcohol intake is associated with insufficient sleep. Seizures are therefore often seen the morning after a "big night out"

5. What can trigger seizures?
Common triggers are: Sleep deprivation, missed medication, stress, sudden awakening, fatigue, alcohol, some prescribed medications, metabolic factors (vomiting, diarrhoea, liver or renal failure, blood sugar levels, electrolyte imbalances), hyperventilation, fever and hormonal changes.

Less common are reflex epilepsies, which have particular triggers such as: Flashing/strobe lights, patterns, reading, startle, immersion in hot water and certain body movements.

6. Why do seizures occur more frequently when a person with epilepsy is stressed?
People with epilepsy have reported emotional stress, such as worry, anxiety, frustration, and anger, as the second most frequent trigger for seizures. This may be attributed to a number of factors, including - lack of sleep due to the stress, forgetting to take medication, excessive drinking, and hyperventilation. The exact reason for this has yet to be fully determined.

7. Do some people have seizures when they are sleeping?
It is not uncommon for people to have seizures during sleep. These are termed nocturnal seizures. Many seizure types can be seen during sleep. Some people will have nocturnal seizures exclusively, and others may have a combination of wakeful and nocturnal seizures.

Taking Medications

1. How do I know if I am taking the correct medication for my type of seizure disorder?
The goal of taking medication is to get maximum benefit (being seizure free) with minimum side effects and maximum compliance ( taking your medication as prescribed). If you are achieving these it is likely you are on the right medication. Your Doctor will however be able to determine which medication is appropriate for your seizure type.

Accurate diagnosis of an epileptic syndrome is critical for determining correct treatment and prognosis. The first consideration is to establish whether the diagnosis is a generalised or partial epilepsy syndrome, as this helps determine initial drug therapy. Some drugs are more effective for certain seizure types than others.

Other factors to consider when testing medications are side-effects, efficacy, cost of medication, contraception, whether the person will be having children in the future, and the frequency the medication needs to be taken.

The choice of antiepileptic drug may also, to some extent, depend on whether the physician is dealing with an initial seizure, a relatively short-term susceptibility, or a long-term, even lifelong projected duration. Drugs that might be avoided for the long term because of chronic side effects may in fact be the best choice for short-term use.

2. How does my medication work?
Medications for epilepsy have many different mechanisms of action. They can act on neurotransmitter receptors, ion channels (Sodium, Calcium), or enhance GABA inhibition. The goal of treatment is to inhibit the firing of repetitive seizure activity. The mechanisms of action of some of the newer medications are not fully established.

3. Is it risky to withdraw from medications even if the doctor suggests I do so?
There are always risks associated when changing or stopping anticonvulsant medication. Breakthrough seizures are not uncommon. Withdrawal should be done slowly and carefully, according to the doctors instructions to prevent any seizures.

4. Are other medications safe, for people taking antiepileptic medications?
Many classes of medications prescribed or bought may lower the seizure threshold. These include: antidepressants, antipsychotics (psychiatric medicines), central nervous system (CNS) stimulants (Amphetamines, Ritalin), diabetic agents, asthma agents (Aminophylline, Ventolin), antihistamines and decongestants, adrenaline, steroids, painkillers, and a wide variety of other drugs including "over the counter medications". It is advisable to contact your specialist,GP, or chemist if you are unsure of medication interactions. Medicines Line allow you to speak to a pharmacist regarding medications: 1300 888 763

5. How often are antiepileptic drug blood levels necessary?
Blood levels are usually taken when commencing an anti-convulsant, then they only need to be checked if there is no decrease in seizures or you start to have breakthrough seizures. Sometimes doses are dependant on how much medication you can tolerate without too many side-effects, or by the amount of medication that is needed to control your seizures rather than the results of a blood levels.

Some people may obtain seizure remission on minimal medication levels and others may still be having seizures although the levels are therapeutic. Each case is individual. Blood levels may be monitored in instances of: newly diagnosed person, continuing seizures despite adequate dosage, when more than one anticonvulsant is being taken, in cases of liver or renal failure, in children or the elderly.

The goal is to obtain the greatest efficacy with minimal side-effects. In the vast majority of instances, the person with epilepsy will tell you whether a drug concentration is therapeutic or toxic, not the laboratory reports.

6. Are medications still necessary if seizures have not occurred for a long time?
Discontinuation of drugs becomes an important option for people who have been seizure-free for a prolonged period. To make the decision to discontinue drugs, several factors must be considered. One of the most important of these is the likelihood of relapse if drugs are stopped.

Overall, the prognosis following discontinuation of antiepileptic drugs is good to excellent. Although on average about 30% of patients may be expected to relapse within 2 years of discontinuing drugs.

Ultimately, the decision of whether or not to discontinue drugs is an individual one. It involves weighing the risks and benefits to an individual of either course of action. There is no single answer that is right for everyone.

7. The potential side-effects of anti-epileptic drugs are vast. What is the likelihood of experiencing these effects and what are the important and common ones?
Side effects of anti-epileptic drugs are largely related to dose and most effects are a result of drug toxicity. Common dose related effects are: double vision, dizziness, poor concentration, memory problems, drowsiness, sedation, headache, nausea, unsteadiness, and tremor. Common side-effects include: rash, blood disorders, behaviour or mood changes, and weight gain.

The likelihood of experiencing some of these adverse effects is high, but once the dosage is stabilised, these effects should be minimalised.

8. Do all antiepileptic medications have side effects?
No drug is without side-effects, and the effects of antiepileptic drugs can vary for each person. Some of the newer drugs do have fewer side-effects, but may also be less effective with seizure control. Initially the side-effects related to dosage might be high, but this should diminish with time.

Surgery

1. Who is suitable for surgery?
Surgery is often considered when medications have be tried for at least two years and seizures are not controlled. Surgery is most effective for partial epilepsies, particularly temporal lobe epilepsy, offering 70-80% of people a complete remission from seizures.

2. How do they know which part of the brain is causing the seizures?
The lead-up to surgery involves admission to hospital for many extensive medical tests and procedure including: Video telemetric EEG, MRI, PET, SPECT scans, neuropsychological tests and a visit by a psychiatrist. All of these tests require informed consent and should be explained properly to you, including the risks involved. Most are relatively uncomplicated.

If there is any discrepancy with the information obtained from these tests, then further tests and recordings may be needed.

3. What are the risks?
The main risks for surgery are: bleeding and infection. Surgery is only performed if the outcome looks positive and the person will be left with no deficits.

Post-operative symptoms you may suffer are: headache, seizures (this does not mean the surgery was unsuccessful, and can happen 2-3 weeks after surgery), swelling, and temporary depression. Surgery is generally not performed if there are any risks of deficits (although an anterior temporal lobectomy causes a minor visual field defect). You will be informed of any potential deficits that may occur, and the risks versus the benefits will have to be considered

4. When should someone seek a second opinion?
There are many reasons why people seek a second opinion. Doctors often have different approaches to treatment, and if you feel that you are not receiving optimal treatment, it may be time to see another specialist. Ideally, you should discuss this with your current specialist, but if you are not comfortable with this, your GP can provide a referral to another specialist. It is important to have a good doctor-patient relationship.

Driving

1. Can I drive?
Many people with epilepsy drive. There are Australian guidelines regarding medical conditions and driving. There are recommended periods that you must be free of seizures before obtaining your license. It is variable for each individual case and depends and the seizure type, frequency and occurrence.

2. Who notifies the Road and Traffic Authority about seizures?
Drivers are legally required to report to their driver licensing authority any condition from which they suffer that may have a long term effect on their driving.

Health professionals have an obligation to prevent an impaired person from driving, and must advise the patient to stop driving. If driving continues despite these measures, the health professional can report a patient to the driver licensing authority.

3. When can a person with epilepsy get a driver's license?
This varies according to the condition. Recommended medical standards for obtaining your drivers license are: Chronic epilepsy; 2 year seizure free period First seizure; 3-6 month seizure free Newly diagnosed; 3-6 months from start of therapy Seizures only in sleep; 12 months from last seizure while awake Epilepsy surgery; 12 months There are several other standards, and often a specialists opinion is required before your license is returned.

Employment

1. What type of work can a person with epilepsy safely apply for?
A diagnosis of epilepsy should not restrict employment options. There are a select few areas that refuse people with certain medical conditions, such as defence force, police, or airline pilot. Many other jobs should be accessable to people with epilepsy.

The level of seizure control will determine some peoples occupations because you will not be allowed to drive, operate heavy machinery, or work at heights if seizure control is poor.

2. What do I do if I feel I have been discriminated against?
Discrimination still exists and people are entitled to know their rights. Contact your Human Resource Manager, Union, or Anti-discrimination commission for more information.

Alternative & Complimenatry Therapies

1. Are there any alternative or complimentary therapies available?
There are many different alterant therapies tried to help control seizures. Therapies such as meditation, music therapy or aromatherapy may increase relaxation and reduce stress resulting in a reduction of seizures. Others include herbal medicines, yoga, biofeedback and supplements. Lifestyle changes are most important to ensure you have adequate sleep, minimal stress and regular medication.

It is best to visit a specialist in this field and also consult with your neurologist. Some alternative medicines can worsen seizures.

Diet

1. Are there any foods that people with epilepsy should avoid?
Some people may have a reaction to certain types of foods, but this is an individual thing, and there is no documented foods that are common seizure triggers.

Note: Grapefruit should not be eaten or drunk when taking Tegretol. It reduces its effectiveness.

2. What is the ketogenic diet?
This diet is very high in fats and low in protein and carbohydrates. It produces a change in the body's chemistry called ketosis, which has the effect of controlling seizures, or reducing their frequency in two out of three children placed on the diet.

A child who has poor seizure control, or a lot of side effects from anti-epileptic medications, may be treated with the diet which tricks the body into burning fat, instead of glucose, for energy.

Although not all children benefit, parents report that children who do are more alert and active than they were previously. Like other treatments, the ketogenic diet has some side effects, which the medical team monitors through blood and urine tests and follow up visits.

Women

1. Can women with epilepsy take contraceptive medications?
Oral contraceptives have no influence on the frequency and severity of seizures. Women with epilepsy are able to take contraceptive medication like any other female, although they should discuss with their specialist about drug interactions because some antiepileptic medications may reduce the effectiveness of the "pill" and extra precautions may need to be taken.

2. Do some women seizures associated with their period?
Some women may have a tendency for increased seizures related to the menstrual cycle. This is called "catamenial epilepsy". Seizures occur most frequently just before menstruation, during the first few days of menstruation and at mid-cycle, during ovulation.

The hormones associated with the menstrual cycle, oestrogen and progesterone, have a clearly established connection with seizures, whilst the effects of testosterone on seizures is not yet fully understood.

Oestrogen and progesterone act on certain brain cells. Oestrogen excites the brain cells and can make seizures more likely to occur, whereas progesterone may inhibit the brain cells preventing seizures in some women. Although hormones generally do not cause seizures, they can influence their occurrence. This is why some women have seizures or experience changes in seizure patterns more frequently at times of hormonal fluctuations.

3. Can women with epilepsy be mothers?
There is no reason why a woman with epilepsy cannot be a mother. It is important that you plan well ahead and visit your specialist to ensure you are on a safe medication at the right dose.

4. What are the risks of taking antiepileptic medications during pregnancy?
Women with epilepsy have a 4 - 6% risk of having a baby with certain kinds of birth defects, compared with 2 - 3% in the general population. Some of the malformations may be caused by antiepileptic medication, by seizures, or due to inherited traits.

Genetic counseling may be helpful to you in assessing your risk. Although the chances of birth defects are higher, there is still a 93-94% chance of having a normal baby.

5. Can women taking antiepileptic medication breast feed their baby?
All antiepileptic medications will be found in small amounts in breast milk, and this usually does not affect the baby, although some less frequently used medications may make the baby sleepy or irritable. The benefits of breastfeeding are great and this is usually a safe option. This is a good issue to discuss with your specialist.

Parents of children with epilepsy

1. Why has my child started having seizure at this age?
Seizures can occur at any age, but are more likely to begin before the age of 20 or after the age of 65. Some childhood syndromes commence within a certain age bracket also.

2. I notice that my child has more seizures when tired is that normal?
Sleep deprivation, physical and mental stress are common triggers of seizure for people with epilepsy. It is therefore quite usual for someone to have a seizure when tired. Lifestyle changes may need to be considered if this is an ongoing problem.

3. Can my child watch TV and play video games?
A child with epilepsy is quite able to watch TV, play computer or video games. It is unlikely that these will trigger a seizure. If he/she is diagnosed with photosensitive epilepsy, then a seizure is more likely to occur. To prevent this, get them to sit at least 2 metres away from the television screen and 60cm from the computer and always have the room well lit. Photosensitive epilepsy only accounts for 5% of the population of people with epilepsy.

4. Does my child have epilepsy because he/ she had convulsions with a temperature as a baby?
These are termed febrile convulsions and are quite common, occurring in 3-5% of children, and only occur as a result of a change in body temperature. They are quite distinct from epilepsy, and do not increase the possibility of having epilepsy unless: they are more than 15 minutes duration, more than one convulsion occurs in 24 hours, or there are focal features or an abnormal neurological state There seems to be a genetic predisposition with these types of seizures.

5. Should I expect my child to have a learning difficulty?
A large percentage of children with epilepsy do not have any learning difficulties. Most children test in the average I.Q. range and will keep up with the class. However, some children with this condition achieve at a lower level than their test scores would predict. There may be several reasons why this happens: medication side effects such as sedation, poor memory and concentration; unrecognized seizures; missed schooling due to diagnostic tests, appointments or seizures; isolation or teasing from peers; behavioural problems; anxiety about having a seizure

6. Is epilepsy the reason why my child is a slow learner?
Learning difficulties cannot always be attributed solely to seizures, but they are seen in some children with epilepsy. The learning difficulties may be directly related to: the epilepsy syndrome, type of seizures, frequency and severity of seizures, medication side effects

Drugs & Alcohol

1. Can I drink alcohol?
Alcohol can effect the medicines used to control seizures, especially drugs with sedative effects such as Phenobarbitol.

Large amounts of alcohol increase the risk of seizures and may even cause them in some cases. Alcohol can temporarily reduces seizures for a few hours, but then increases the chances of having seizures as the alcohol leaves your body. This may also be attributed to the sleep deprivation associated with binge drinking.

When it comes to having a few drinks socially, there seems to be a lot of individual variation. Some people with epilepsy are not affected, and some are. A drink as part of a large meal is less likely to cause a seizure than a drink on an empty stomach.

Check with your doctor before deciding on your own alcohol use. Be sure to ask about the kind of medicine you are taking and how it might react with alcohol.

2. What about recreational drugs?
No recreational drug is gentle or without side-effects. These drugs are made up of many different substances of unknown quantity. They are illegal and there are no regulations to control what is in them. Like alcohol, each person will have different reactions to various drugs.

Many recreational drugs, especially stimulants such as cocaine, 'crack', angel dust (PCP), ecstasy and speed (amphetamines), can cause seizures and it is not known exactly how these, or any recreational drugs, may mix with prescription medicines. As the name suggests, stimulants are types of drugs that increase brain activity causing an increase in alertness, attention, and energy.

Drug taking is often associated with not getting enough sleep, partying hard, dehydration, and not eating properly. These in themselves can set off a seizure.

The decision to take recreational drugs is a personal one, but it is important to be aware that there is the possibility of an increased chance of seizure(s).

Recreation

1. Can I go swimming?
It is important to maintain normal everyday activities, and not restrict your lifestyle because of epilepsy. It is fine to go swimming, but you should never do this alone. A seizure whilst swimming can end in tragic consequences, so it is important to swim with someone, or have someone close by. Deep sea diving is not recommended.

2. Can I play sport?
There are no hard and fast rules about sports participation for people with epilepsy. Most of it is common sense and depends on the individual and their seizure control.

Water sports are potentially more dangerous, and should never be undertaken alone. For someone who doesn't have complete seizure control, sports such as rock climbing or scuba diving are not recommended. Some neurologists may advise against heavy contact sports also.

3. Can I go on a school camp?
There is no reason why a child with epilepsy cannot participate in normal everyday activities that other children undertake. Participation in school activities, camps and excursions will be of benefit and promote peer acceptance. It is important to get involved in normal activities. Staff and parents going along should know you have epilepsy and be taught what to do in case of a seizure.

4. My parents are overprotective, how do I stop this?
Overprotection is a normal reaction of parents when their child is diagnosed with epilepsy. It may come from anxiety or fear that their child may be hurt, or suffer teasing or bullying from others. They are only doing what they feel is best for the child, but this is not always the case from the childs point of view.

Try to discuss with them that you need to make some of your own decisions to maintain some independence. It may be helpful to have your doctor or local epilepsy association talk to them about epilepsy and activities that can be undertaken. Try to negotiate a plan that is comfortable for both you and your parents.

Education & School

1. What should I tell my child's teacher?
If your child has been diagnosed with epilepsy and there is the possibility of a seizure occurring at school, it is important at least the child's teacher and school nurse knows about the condition and what to do.

They should be familiar with: the seizure type and have a descriptive understanding of the seizure. eg.( child loses expression and her eyes move to the right and upwards), how often they may occur, how long they usually last, any triggers or warning signs, first aid and/or appropriate response to the seizure including when and if to call an ambulance, how the child recovers (eg do they need to sleep for an hour after the seizure), what medications the child is on, what are the side effects and dose related effects (toxicity) of the medication/s.

Open and honest communication between the school and home help with providing a safe environment for you child and ensures the child has the best chance to reach their full potential. A member of the Epilepsy Association is happy to go and speak to the relevant people at the school.

2. Should the other children in the class know about my child's epilepsy?
This depends upon the likelihood of the children witnessing a seizure. If they are likely to see and have to deal with a seizure, they need to understand that seizures pose no danger to them or to the child who had the seizure.

There is the risk of isolation and teasing, but this is always a risk if a seizure is likely to occur in class and the children are unaware about the condition.

With permission from the student or his/her parents, the teacher or the school nurse should explain epilepsy and seizures to the other children, and answer their questions. This could possible reduce social impact of a seizure.

The child with epilepsy should be told such a discussion is planned and be allowed to decide whether he/she wants to be included in it. If the child chooses not to be present when epilepsy is discussed or if it is not possible for him/her to be there, he/she should be told afterwards what was said.

3. Can students be prevented from doing or completing courses because they have a seizure disorder?
Participation in courses, activities or excursions is only limited to ones own ability. There are no restrictions on study options for people with epilepsy.

Students with epilepsy are no different from any other attending student unless there is an established learning difficulty, which is when additional help may be required.

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