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 simultaneously at a much faster rate resulting in a seizure.

The type of seizure and how it looks depends upon where in the brain the unusual electrical activity is and where it spreads. The brain has areas that control different functions - for example if the unusual electrical activity is happening in the part of the brain associated with taste sensation, taste will be altered/enhanced. eg. an unusual taste in your mouth. This unusual electrial 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 can be quite dangerous. It is actually not possible for a person to swallow their tongue. Just make sure they are safe and no injury is occuring.

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 very 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 mood swings as a consequence of their seizures, medications, acceptance of their condition, or any other outside factors contributing to their general well-being. It may be a good idea to keep a diary of when the mood swings occur, and if there is any correlation with the seizures. If they feel their moods are related to their medication, it is advisable to consult a neurologist.

5. How common are seizure disorders?
Epilepsy is the most common serious brain disorder in every country 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 individual, this is difficult to determine. It can depend upon the seizure type, frequency and diagnosis (syndrome). There are some epilepsy syndromes where seizures do cease as you age, but these are generally childhood syndromes. To minimize the risk of having seizures it is advisable to take your medication as prescribed, have adequate amounts of sleep, minimise stress, avoid seizure triggers and lead a healthy lifestyle.

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 sleep state dependent. Changes in seizure patterns can occur, so wakeful seizures can never be out-ruled, although the chances are small. The possibility of having a seizure when awake is also 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 some types of epilepsy varies, and 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 affect adult life. There may be a cessation, reduction, change or increase in seizures. Each individual situation is different.

9. When can one say that they no longer have a seizure disorder?
Greater than 70% of people with epilepsy will stop having seizures for 5 years +. Depending on the seizure disorder and with consultation with your neurologist, stopping medication can be justified in people who have had 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.

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. The highest risk factors for sudden death are: Tonic-clonic ("Grand Mal") seizures Developmental Disability More than one type of antiepileptic medication being used Alcohol abuse

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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 suddenly 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 simply be a result of a great deal of stress - physical, emotional or both. Sometimes there may be no distinct 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.

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 upon 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 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 perceived that alcohol is a frequent cause of seizures in people with epilepsy. However, there is little evidence that small amounts of alcohol influences seizure occurrence. Alcohol abuse may be accompanied by seizures in two situations. On the one hand, people with alcohol addiction with or without epilepsy experience seizures with heavy drinking but more frequently on withdrawal. On the other hand, seizures may be precipitated in people without addiction with epilepsy after excessive 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?
Some common triggers are: Sleep deprivation Missed medication, Sudden awakening, Fatigue, Stress/emotions, Alcohol and drugs, Some medications or supplements, 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: 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 medication used in people with epilepsy are: Maximum benefit ( being seizure free) Minimum side effects - 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.

The goal of therapy is to achieve seizure freedom without significant adverse effects. 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 is critical in guiding initial drug therapy. Some drugs are more effective for certain seizure types than others. Choice of initial medication in an individual. Other factors to consider when testing medications are side-effects, efficacy, costs of medication and the frequency the medication needs to be taken.

The choice of antiepileptic drug may also, to some extent, depend on whether the doctor 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?
Basically each medication has a different mechanism 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 ceasing anticonvulsant medication; breakthrough or rebound seizures are not uncommon. Withdrawal should be done slowly and carefully, according to the doctors instructions to prevent any rebound seizures. It is advisable not to attempt withdrawal during pregnancy or at a stressful or busy time.

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 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.

5. How often are antiepileptic drug blood levels necessary?
Blood levels may be taken in the initial stages of commencing an anti-convulsants, then they only need to be assessed 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, Continuing seizures despite adequate medication, 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 cases, the person themselves 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 treatment 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. Overall, the prognosis following discontinuation of antiepileptic drugs is good. 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?
Adverse effects of anti-epileptic drugs are largely dose dependent, that is, most effects are a result of drug toxicity. Common dose related effects are: Double vision, Dizziness, Poor concentration, and memory, Drowsiness, sedation, Headache, Nausea, Unsteadiness, tremor, Common side-effects include: Rash Blood disorders, Behaviour/mood changes, 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?
Any anti-epileptic drug is not without side-effects, and this can vary for each individual. Some of the newer drugs do have lesser effects, but may also be less effective with seizure control. Initially the side-effects related to dosage might be great, but this should diminish with time.

Surgery

1. Epilepsy surgery has been suggested, what are the risks?
Surgery is often considered when seizures are uncontrolled by optimum medical management and there is a disruption in the quality of life. There are several different types of surgery, depending on your seizure type and focus.

The lead-up to surgery involves admission to hospital for many extensive medical tests and procedures. You will be informed of any potential deficits that may occur, and the risks versus the benefits will have to be considered

2. 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. 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 patient from driving, and must advise the patient to cease driving. If driving continues despite these measures, the health professional can report a patient to the driver licensing authority.

2. 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.

3. 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.

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, or airline pilot. All 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.

Alternative & Complimenatry Therapies

1. Are there any alternative or complimentary therapies available?
People often try alternative therapies, but none have been clinically proven to improve seizure control. Therapies such as meditation, music therapy or aromatherapy may increase relaxation and reduce stress resulting in a reduction of seizures. Lifestyle changes are most important to ensure you have adequate sleep, minimal stress and regular medication.

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.

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.

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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 have cyclical seizures?
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. Causes are not understood very well, but it may be the changes between the two female sex hormones, oestrogen and progesterone, or the effects of these changes such as fluid retention. It is also possible that the levels of antiepileptic medication may decrease before menstruation.

3. Can women with epilepsy be mothers?
There is no reason why a woman with epilepsy cannot be a mother.

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 a considerable distance away from the screen. 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 childhood 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 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, and 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 are thought to raise the risk of seizures and may even cause them in some cases. Alcohol in large quantities 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. 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.

Recreation

1. Can I go swimming?
It is important to assume 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.

Education & School

1. What should I tell my child's teacher?
If your child has been diagnosed with epilepsy and there is the likelihood 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 o the seizure type and have a descriptive understanding of how the seizure presents. 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. Also, what medications the child is on and 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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