Living with Epilepsy

Many people with epilepsy and their families worry how epilepsy will affect day to day life. Just as epilepsy is different from one person to the next, managing and coping with the condition is different for everyone. Experiences and concerns will also be different if you are a young person, parent, adult or senior.

The following section will offer a range of practical information about living with epilepsy across the lifespan and in a wide variety of situations and activities.

Just Diagnosed

Just diagnosed: Coming to terms with your epilepsy

Getting a diagnosis of a long-term condition such as epilepsy can be a shock, and take some time to adjust and possibly affect your physical and mental health. It can also affect your relationships, home, career and finances. Some people may feel relieved with a diagnosis because it can sometimes take a long time to get an accurate diagnosis.

Each person will react differently. There may be challenging times ahead, but adopting certain strategies and knowing that you are not alone can help you cope in the best way possible.

Experiencing a range of emotions is quite normal, but you should watch out for signs of depression. If at any stage you begin to feel overwhelmed, seek help immediately.

For information and help with depression go to:

 

It is likely that your diagnosis may lead to some unavoidable life changes. These can range from a change in your transport, adapting your job role or lifestyle habits so that it suits your health.

Things you can do:

  • Mostly try to maintain your normal daily routine, including working, socialising and exercising. Maintaining a level of normality is often beneficial for your physical and psychological health – unless your life is extremely busy or stressful.
  • Try not to isolate yourself. Have at least one family member or friend you can talk to.
  • Learn about epilepsy and the type of epilepsy you have. It can really help with managing.
  • When you feel up to it, take more control over your condition.
  • Seek help if you are feeling depressed. It is quite normal to have these feelings after a diagnosis of epilepsy or any other health condition.
  • Speak to the doctor if you are feeling the medication is giving you too many side effects, or side effects that are really affecting your life.
  • Find a support group that you can join. There are many online support groups for people with epilepsy who share experiences and ask questions. These can be very beneficial for some people. Speak to Epilepsy Action for more information on support.

Many people with epilepsy now take a more active role in managing their disease. Self-management is the way forward and it will enhance better disease management and control.

Taking an active approach to managing your epilepsy can give you confidence when it comes to discussions with the doctor or decisions about treatment.
 
For more information:

EAA brochures

Mood and epilepsy

Self Management

Self-management is essentially when someone with a chronic disease takes an active role to manage their own illness. It includes things such as making healthy lifestyle choices and informed decisions about treatment and actively monitoring and managing symptoms.

Here we have a number of practical tips that may prevent seizures and help take control of your life.
 
Educate Yourself

Try to find out as much as you can about your condition so you can understand and learn how to manage it.

  • Knowledge can reduce anxiety and concerns by helping you understand epilepsy and feel more in control.
  • You will be able to take a more active role asking questions and discussing treatment options with your doctor.
  • A greater understanding of your condition can help you to identify your own seizure triggers or seizure patterns, which helps you to realise and possibly avoid what may set off your seizures.
  • The correct information can dispel myths and make you feel more comfortable talking about epilepsy to others.
  • By educating yourself, you can educate others.

 
Take Medications as Prescribed

Medications don’t cure epilepsy, but they can control seizures.

Taking doses as prescribed by the doctor is essential to gaining seizure control. If you have difficulty remembering to take medication:

  • Make it part of a daily routine such as taking them at meal times.
  • Set a watch or small alarm clock as a reminder.
  • Use a pillbox or place the medications in a visible position as a reminder.
  • Use a chart or calendar and tick when the dose is taken.
  • Ask someone close to remind you.

 
Check Before Taking Other Medications or Supplements
Other medications, including over-the-counter medications, may interfere with antiepileptic medications or make you more prone to having seizures.

Many people believe that alternative or complementary therapies, such as herbal remedies, are safe because they are derived from natural sources, but this isn’t always true. Just like medications, these therapies have effects and side effects. Speak to the doctor before starting any complementary therapies; herbal medicines, homoeopathic substances and supplements such as Gingko Biloba, St Johns Wort and Evening Primrose Oil. These are believed to affect seizure control because they interfere with the metabolism of antiepileptic medications. Read about taking other medications when you have epilepsy
 
Brands and Generic Medications

There are also many different brands and generic medications on the market for epilepsy and your pharmacist may offer you one of these as an alternative.

Do not change brands until you have spoken with your doctor. Although there are only slight variations between some brands, this may affect your seizure control or side effects.
 
Avoid Large Amounts of Caffeine or High Energy Drinks

Caffeine is a stimulant found in coffee, tea, chocolate, many soft drinks, high energy drinks, some supplements and medications, including some diet pills, antihistamines and decongestants. Excessive amounts of caffeine can cause an increase in seizures in some people with epilepsy. In addition, caffeine may interfere with antiepileptic medications, and affect sleep patterns.

Guarana is a natural caffeine source and a stimulant. It is a common ingredient in high energy drinks and herbal ‘weight loss’ teas and can combine with adrenaline to produce an even stronger stimulant effect.

Any substance that is considered a stimulant should be avoided or taken with care and moderation, as stimulants are more likely to increase the risk of seizures. It’s hard to know exactly how much caffeine is a problem, as its effects on the body vary from person to person. The rough guideline for the average person is to drink (or eat) less than 600mg per day – around four cups of strong coffee, or five or six cups of tea. This would be less for someone with epilepsy. So limit your intake to two or three drinks at most.
 
Grapefruit and Seville oranges

There are chemicals in grapefruit that can interfere with the way the body absorbs and breaks down (metabolises) certain medications, increasing or decreasing its levels in the bloodstream. One of these medications is Tegretol (carbamazepine). Avoid grapefruit or Seville oranges if you are on this medication.
 
Get Enough Sleep

Lack of sleep is a common trigger for seizures in people with epilepsy.

The amount of sleep a person needs will differ between individuals, but it is recommended that people with epilepsy stick to a regular bedtime and try to get a full night’s sleep (7-8 hours) as often as possible.

People with epilepsy do not need an excessive amount of sleep. Constant tiredness and sleepiness may be a sign that medications may need adjusting. If you suffer from sleeplessness or overtiredness, discuss this with your doctor.
 
Recognise and Respond to Stress

Stress can’t always be avoided, but you can reduce its impact by changing the way you respond. It is important to identify the cause of stress and find practical solutions.

Some known stress busters are:

  • Muscle relaxation exercises
  • Breathing techniques, meditation
  • Yoga
  • Effective time management
  • Music, reading
  • Good support networks
  • Exercise and sport
  • Avoiding stressful situations and people when you can

To deal with stress more effectively, think about what stresses you and how you react to it. Try to:

  • Understand what situations make you feel stressed
  • Understand what situations you can and can’t control
  • Prepare for stressful events in advance, by thinking about the future
  • Keep yourself healthy with good nutrition, exercise, and regular relaxation
  • Try to do something positive every day.

Don’t forget to be diligent about taking your seizure medication

If stress is having a significant impact, discuss concerns with a professional such as a psychologist or counselor.
 
Be Aware of Seizure Triggers

Identifying seizure triggers and learning how to avoid them is important for seizure control. Avoiding seizure triggers can be very difficult at times. Weigh up the risks and look at the quality of life issues.

LIVE LIFE THE BEST YOU CAN!
 
Common seizure triggers include missed medications, sleep deprivation and stress.

More individual seizure triggers can also include:

  • Hormonal changes in females
  • Low blood sugar
  • Extreme heat or cold
  • Startle such as a loud noise
  • Depression, boredom or overexcitement
  • Alcohol and drugs
  • Flashing lights and geometric patterns

Keeping a seizure diary may be helpful in identifying your seizure triggers.

Be aware that vomiting and diarrhoea can also cause seizures because antiepileptic medications may not be absorbed properly and fluid and electrolyte imbalances can occur due to dehydration.

Most people with epilepsy agree that taking their medication regularly and simply being careful with their lifestyle minimises the chances of having a seizure.
 
Drugs and alcohol

There are individual differences in the effect that alcohol has on seizures. Some people with epilepsy are more affected than others. In small amounts, alcohol should not cause seizures. Alcohol and recreational drugs can interfere with the metabolism of antiepileptic medication and excessive alcohol intake is known to increase a person’s risk of seizures.

These are a few important points regarding drugs and alcohol:

  1. Most people with epilepsy can enjoy a social drink; however some antiepileptic medications do not mix well with alcohol.
  2. Heavy or binge drinking is not recommended. Not only the drinking can increase the risk of seizures but also late nights, missed meals, forgetting medications and poor sleep, can trigger seizures as well.
  3. Antiepileptic medication can lower your tolerance for alcohol, so the immediate effects of alcohol are greater. In other words, you will get drunk faster.
  4. Both alcohol and many antiepileptic medications are metabolised by the liver. Chronic and excessive consumption of alcohol can cause liver problems that may change the effectiveness of antiepileptic medications.
  5. Some drugs or substances, such as alcohol, caffeine, nicotine and various prescribed and over-the-counter medications, are legal. Taken incorrectly or in large amounts may increase the risk of seizures.
  6. Many illicit recreational drugs, especially stimulants such as cocaine, ‘crack’, ecstasy and speed (amphetamines) plus illicit synthetic drugs have the potential to cause seizures and it is uncertain what interactions these, or any illegal drugs, may have with any prescription medications. A person using illegal drugs can never be sure of how strong the drug is, or what is actually in it. It is very risky for someone with epilepsy to take these drugs.

 
How you can manage alcohol

A few pointers if you still like to have a drink.

  1. Avoid binge drinking. This can often trigger seizures several hours later after the drinking has stopped.
  2. When you are drinking alcohol, drink slowly, stick to low alcohol drinks or have a non-alcoholic drink in-between drinks. Don’t keep up with your friends if they are drinking heavily.
  3. If you are at a party keep your drink in your hand and drink it slowly. That way people won’t harass you to have another drink if they see you already have one.
  4. If you know it’s going to be a late night, the try and catch a power nap in the afternoon.
  5. Keep yourself hydrated with non-alcoholic drinks (not beer).
  6. Don’t abuse alcohol. This can cause different types of seizures called alcohol withdrawal seizures, and it will make your epilepsy worse.

If you have concerns regarding alcohol or other drugs that you think are affecting your seizure control, discuss these with your doctor.

For more information about alcohol and drug and epilepsy click here.
 
Keep a seizure diary

Seizure diaries can help to identify seizure triggers, and provide a good picture of seizure patterns.
Your seizure diary needs to include:

  • Date and time of seizures
  • If you were asleep or awake
  • Description or type of seizure
  • What happened before, during and after the seizure, if known
    Medication taken and missed that day, including medication for other conditions
  • Any possible seizure triggers
  • General health and energy level leading up to the seizures
  • Menstrual cycle for women
    Keeping a seizure diary is a good way to identify possible triggers. To use our online seizure diary click here.

Join a program

A variety of programs encourage self-management through:

  • Techniques to deal with issues such as frustration, fatigue, pain and isolation
  • Appropriate exercise for maintaining and improving strength, flexibility, and endurance
  • Appropriate use of medications
  • Communicating effectively with family, friends, and health professionals
  • Nutrition
  • How to evaluate new treatments

Self-management is now encouraged in many areas of healthcare, and with ready access to so much information people are now more likely to be involved in their own health decisions.
 
For more information:

Lack of sleep and epilepsy 

Is it safe to use generics?

EAA Seizure Smart Factsheet – Switching Brands

Stress Basics

This Way Up – a free online course to manage stress

Book: Complementary and Alternative Therapies for Epilepsy.

Expert Patients UK

Some health funds may offer programs as well. Click here to see examples.

Risks and Safety

People take risks every day, but people who have seizures may have to deal with different risks. By becoming aware of potential risks and ways these can be lessened, activities can be safer and most people with epilepsy can live full and active lives.

Safety precautions should be sensible and relevant to the particular person involved, with a balance between risk and restrictions. Enjoy life as much as you can and don’t restrict activities to a point where your interests and fun are excluded.
 
Risks

Not everyone has the same risks and what may affect someone may not affect you. The risk of injury varies greatly and can depend on:

  • Type of seizures – people who have more severe seizures, clusters of seizures or frequent falls are at higher risk
  • Frequency of seizures – someone who has many seizures a day is more at risk.
  • Age – infants, children and older persons are more susceptible to injuries and accidents
  • Medications – people on multiple medications or very high doses may suffer side effects such as drowsiness, double vision, poor coordination
  • Participation in high risk activities – such as certain sports (eg. rock-climbing) with poor seizure control, drinking alcohol, taking drugs
  • Any other physical or neurological problems

Common accidents seen and ways to lessen the likelihood of accidents are listed below. It is important to remember this list is not exhaustive and some suggestions are not relevant to all people with epilepsy.
 
Safety at home

To reduce likelihood of cuts, bruises and abrasions

  • Reduce clutter, sharp or jutting edges and corners.
  • Use a shower curtain rather than a glass screen. You can also have Safety Glass . Also use a shower chair if necessary.
  • Reinforced glass doors are preferable or apply safety film to existing glass.
  • Use slip resistant flooring in wet areas such as the bathroom and laundry
  • Wear rubber gloves when washing dishes. When loading a dishwasher, position sharp edges downwards.
  • Use non-breakable crockery and cordless electrical appliances with automatic switch off.
  • Minimise the use of knives by buying pre-sliced food when possible.

 
To prevent burns

  • Hot water system and heaters need to be temperature controlled.
  • Avoid lightweight and free standing heaters. Wall mounted heaters are best. Place fixed safety guards around the fireplace.
  • Where possible use a hand held shower and always turn the cold water tap on first and off last.
  • It is preferable to use a microwave than a stove or oven. If using a stove, use the back elements and turn pot handles away when cooking.
  • Avoid carrying hot dishes of food or liquid by serving meals from the kitchen bench.
  • Do not light candles or fires when alone.

 
To prevent drowning

  • Never swim alone.
  • In spas, ensure that the water is not too hot.
  • Wear an approved life jacket for water activities, including boating and fishing.
  • Avoid water sports such as scuba and high board diving.
  • Showers pose less of a risk than a bath. If you only have a bath, use a hand-held shower attachment.
  • Do not shower or bathe whilst alone in the house if possible.
  • Shower at a time when seizures are less likely to happen.
  • Preferably have outward opening doors, sliding doors, half doors or doors that are easily removable fitted to the bathrooms.
  • Keep bathroom doors unlocked or have a Rescue Door installed.

 
To minimise serious injuries

  • Avoid high-risk activities like using a ladder, rock climbing without a harness or flying foxes.
  • Wear helmets when riding a bicycle, scooter, horse, or when roller-blading or skateboarding.
  • Choose a low bed and avoid sleeping on a top bunk.
  • Stand well back from the road or platform edge when waiting for a bus or train.
  • Bathroom floors may be less hazardous if rubber-backed mats or non-slip flooring are used.
  • Avoid living in accommodation with stairs.

 
To avoid suffocation

  • Try to sleep without a pillow or use a firm porous pillow. Anti-suffocation pillows  are also available.
  • Choose a low wide bed that has a firm mattress with a tightly fitted sheet.
  • An alarm may help alert parents or carers to seizures at night. Baby monitors or intercoms may work for some, but there are also many seizure alarms on the market.

 
Avoiding accidental overdose of antiepileptic medication

  • All medications should be stored away out of reach of children and not be left in pockets and handbags.
  • If a dose of medication is missed, the next dose should be taken as normal. Do not double the dose.
  • Discuss possible reactions with your pharmacist and doctor before taking any other prescribed medications or over the counter medications.
  • Consult the doctor before altering the prescribed medication regime.

 
Seizures during sleep

Many families are concerned with the safety of their loved ones while they are asleep. This is of particular concern to parents of young children who have seizures and families of people living alone.

Family or parents should not stay awake watching for seizures. Everyone needs sleep, and this practice creates tiredness and dysfunction in the whole household.

Some suggestions to help overcome this concern are to:

  • Place a baby monitor in the child’s bedroom so parents can hear any abnormal noises (monitors available from most stores)
  • Try a monitor that detects movement when a child has a tonic clonic seizure (ring Epilepsy Action Australia – 1300 37 45 37 – or click here for more details)

 
Living alone

Living alone may or may not be a lifestyle choice. Many people who live alone enjoy their independence, which is important in maintaining self-esteem and control over one’s life.

A common concern for people with poorly controlled seizures living alone is what if a seizure occurs, causing injury, and nobody knows?

There are a number of alarms available that can help people who live alone, ranging from telephone alarms, personal alarms, fall alarms, and daily calls. These products are able to notify emergency assistance or family members should a seizure occur. There are a large variety of options available to suit most people. Costs and service types vary considerably.

Epilepsy Action Australia or your local council will have information on these kinds of services.

Some people may have worked out a routine with family or neighbours to either call, drop in or notice abnormal behaviour (eg. the blind not being raised, lights not on).
 
Medical identification

In the event of a seizure happening at a time when you are in public or with strangers, a medical ID bracelet or pendant will alert people to the fact you have epilepsy. This can reduce panic, make it more likely for appropriate help to occur and prevent unnecessary ambulance call-outs.

There are a number of reasons why we recommend wearing a medical ID bracelet if seizures are not fully controlled.

Some of these include:

  • Many members of public do not know the correct first aid for a seizure.
  • Incorrect first aid such as putting something in someone’s mouth or restraining them can cause injury to either party.
  • A large number of people would call an ambulance if they witnessed a seizure.

This is not always necessary and can prove an inconvenience for the person with epilepsy, mainly due to long waits in casualty and ambulance bills.

  • Some seizures may present as if the person is intoxicated or on drugs and they may be poorly managed in the community.
    • Some people have found themselves being questioned by police or taken to the local station.
    • Others are either confronted or avoided by members of the public.

We can give you advice about the different products available. Your pharmacist is also able to provide this information.

Safety begins with you!
 
For more information:

EAA Seizure Smart Safety Factsheet

Epilepsy Products

Seizure Precautions, safeguarding your home

Lifestyle Issues

Some minor changes to your lifestyle can have a positive effect on the management of seizures. Find out about the aspects of your life that may require changes and practical ways to do this.

Womens Issues

Many women with epilepsy find that their seizures are affected by hormonal changes. Understanding the facts about this can help to improve seizure control. The following general information aims to make it easier to ask questions when visiting your GP, neurologist, gynaecologist or obstetrician.
 
Seizures and hormones

A number of different hormones in a woman’s body control bone and muscle growth, heart rate, hunger, emotions and menstrual cycle. The female reproductive hormones, oestrogen and progesterone, have a clearly established link with seizures. When seizures have a strong connection with hormones and are exacerbated or occur exclusively during ovulation or just prior to or during menstruation it is termed catamenial epilepsy.

Although hormones generally do not cause seizures, they can influence their occurrence. This is why some women have seizures or changes in seizure patterns more frequently at times of hormonal fluctuations such as puberty, ovulation, menstruation or menopause.

Keeping a diary of your menstrual cycle and seizures is a good way of identifying if hormones trigger them. Try our online seizure diary, My Epilepsy Diary.
 
Puberty 

Puberty is a time of complex physical and emotional changes. These physical changes happen so quickly that your body may need a higher dose of medication. a dose of anti-epileptic medication that worked previously may no longer do so. This may be a good time to have the blood levels checked and the dose may need to be increased or changed.
 
Menstruation 

Many women with epilepsy have a tendency to have more seizures at certain times of the menstrual cycle.

This may be due to:

  • hormonal fluctuations,
  • fluid retention,
  • reduced blood levels of anti-epileptic medications before menstruation,
  • sleep disruption
  • and possibly pre-menstrual tension or stress.

Menstrual changes have been identified in 30-50% of women with temporal lobe epilepsy as compared to 7% of women without epilepsy. These can include irregular menstrual cycles, an absence of menstruation or prolonged or shortened menstrual cycles.

Catamenial epilepsy means that seizures are exacerbated or occur exclusively at ovulation or just prior to or during menstruation.

Identifying hormonal influences on seizure frequency is important and can influence treatment. Keep a record of both the menstrual cycle and when seizures occur as this may help to predict when seizures are likely to happen.
 
Fertility

Fertility can be reduced in women with epilepsy. This means that women with epilepsy may find it more difficult to become pregnant. There are many different causes of reduced fertility. These can include having epilepsy itself, or taking certain or multiple antiepileptic drugs or other associated conditions such as polycystic ovary disease.
 
Polycystic Ovary Syndrome

There are two conditions: Polycystic Ovaries (PCO), and Polycystic Ovary Syndrome (PCOS)

An ovarian cyst is a fluid filled sac that occurs in or on an ovary.

  1. Polycystic ovaries (PCO) means multiple ovarian cysts are seen on ultrasound.
  2. PCOS is a metabolic condition that may or may not come with having polycystic ovaries.

Although there may be some similarities in the names, the risks and medical treatments are very different for these two conditions. PCO is a normal variant of a woman’s ovary, whereas PCOS is a diagnosed condition with short and long-term consequences.

Women with epilepsy have features of PCOS at a higher than expected rate, and PCO also are present at high rates in this population. No clear reason has been established for this. It is important for women with epilepsy to be aware of the symptoms for PCOS. These include:

  • Excessive hair growth on the face, chest, abdomen
  • Hair loss, in a classic “male baldness” pattern
  • Acne
  • Polycystic ovaries (seen on ultrasound)
  • Obesity, particularly central obesity (being apple-shaped)
  • Infertility or reduced fertility
  • Irregular or absent menstrual periods

Speak to your doctor if you have concerns about these symptoms.
 
Contraception

Oral contraception (contraceptive pill)

There are anecdotal reports but no scientific evidence to suggest hormonal contraception (the Pill) can influence epilepsy. However, the Pill is used to regulate the oestrogen levels and the menstrual cycle and therefore may influence seizure frequency in some women.

Some antiepileptic medications and hormonal contraceptives may affect each other’s metabolism, making it less effective, leading to either loss of seizure control, medication toxicity or unplanned pregnancy. This does not mean that women with epilepsy cannot use hormonal contraception it means that they may need use one that is suited to their antiepileptic medication.
 
Antiepileptic drugs that can interfere with oral and subdermal implant contraceptives*

  • Carbamazepine (Tegretol, Tegretol CR, Teril, Caramazepine Sandoz)
  • Lamotrigine (Lamictal, Elmendos, Lamidus, Lamogine, Lamotrust, Seaze)
  • Oxcarbazepine (Trileptal)
  • Phenobarbitone
  • Phenytoin (Dilantin)
  • Primidone (Mysoline)
  • Topiramate (Topamax, Tamate, Epiramax)

 
Antiepileptic drugs that do not interfere with oral and subdermal implant contraceptives*

  • Acetazolamide (Diamox)
  • Clobazam (Frisium)
  • Clonazepam (Rivotril, Paxam)
  • Diazepam (Valium, Antenex, Diazepam-GA, Ranzepam, Valpam)
  • Ethosuximide (Zarontin)
  • Gabapentin (Neurontin, Nupentin, Pendine, Gantin, Gabatine, Gabaran)
  • Lacosamide (Vimpat)
  • Levetiracetam (Keppra, Kepcet, Kevtam, Levecetam, Levitam)
  • Pregabalin (Lyrica)
  • Sulthiame (Ospolot)
  • Tiagabine (Gabitril)
  • Vigabatrin (Sabril)
  • Zonisamide (Zonegran)

 
Antiepileptic drugs that may have a limited clinical interaction and in some people may require additional contraceptive measures to be discussed with your prescribing doctor*

  • Sodium Valproate (Epilim, Valprease, Valpro)

* Source: NSW Medicines Information Centre – Drug Information Pharmacist 16 Feb 2011
 
Morning after pill

As like the oral contraceptive women taking enzyme inducing antiepileptic drugs will require a higher dose of the morning after pill than other women. It is not recommended to use this medication as a routine contraceptive method.
 
Non hormonal contraception

Epilepsy and antiepileptic medications do not hinder the effectiveness of the intrauterine contraceptive device (IUD), cervical cap, diaphragm or condom.
 
Pregnancy 

If a future pregnancy is planned it is advisable to be well informed. In brief:

  • Over 93% of women with epilepsy can expect to have normal healthy babies.
  • Approximately 25-30% of women with epilepsy will have an increase in the number of seizures during pregnancy. Most women will not notice any change in their seizures.
  • It is desirable to establish the best possible seizure control prior to conception.
  • There is no evidence that focal seizures or absence seizures result in increased risk to the foetus. However, generalised tonic-clonic seizures are potentially harmful to both mother and foetus.
  • It is preferable, but not always possible, to be taking only one anti-epileptic medication. Both the neurologist and obstetrician will be involved in reviewing the medications.
  • Because folic acid is thought to reduce the risk of birth defects it is wise to start taking a recommended dose and be in good general health well before conception.
  • Monitoring of drug levels may be necessary because of altered metabolism of the anti-epileptic drugs during pregnancy.

The Australian Pregnancy Register for Women on Anti-epileptic medication is conducting research on the incidence of birth defects from pregnancies of women taking these medications.

To register phone 1800 069 722.

It is advisable to be well informed prior to falling pregnant and plan your pregnancy well in advance.
 
Pre-pregnancy counselling

Pre-pregnancy counselling is very important as epilepsy management may need to be reviewed well before pregnancy to have the best seizure control on the lowest but effective dose of suitable medication. By working with your doctor you can minimise any risks to you and your baby.

This is an important time to ask questions.
 
Unplanned Pregnancy

Pregnancy can be a very emotional time in a woman’s life. If the pregnancy is not planned, it can raise many different feelings and emotions. Women with epilepsy taking antiepileptic medication may be worried about the effects the medication may have on the baby, or how they will cope with the extra stress of having a baby, and the financial impact it may have.

Given that most women do not find out that they are pregnant until 5-11 weeks into the pregnancy when the most sensitive period of development has occurred, it is important not to stop taking AED’s as this can pose an even greater risk to both mother and child.

If you find that you are unexpectedly pregnant, DO NOT stop taking your antiepileptic medication, consult your doctor immediately.
 
What to do:

  • Do not panic and stop taking or change your dose of antiepileptic medication – speak to your doctor
  • Have your pregnancy confirmed
  • Count the number of weeks since the first day of your last period to calculate how many weeks pregnant you are
  • Speak with your doctor – and discuss your options
  • Get support from a trusted partner, friend, family member, health care provider or specially trained counsellor. Talking about feelings, both positive and negative, with trusted friends and family members can be enormously helpful.
  • Look after yourself, avoid alcohol, stop smoking, don’t take unnecessary or illegal drugs
  • Become well informed by looking into your options and seek unbiased advice as soon as possible. Do not rush into a decision, but long delays may mean you have less options available to you
  • Deciding to continue or end the pregnancy is a very personal decision based upon your individual situation, religious or cultural beliefs. Explore all possible scenarios and imagine yourself in each situation before making a final decision.
  • Making a well informed decision can help reduce stress and the emotional impact in a difficult situation
  • Record any seizure activity and attend follow up appointments with your doctor

 
Menopause

A woman goes through menopause when the ovaries stop releasing eggs, causing the body to stop making natural hormones. During menopause, because there are changes in the hormones produced by the ovaries, oestrogen and progesterone, it is likely this will affect seizures in some way. For some women seizures may stop while others may experience an increase in seizures, many women have no change in seizure frequency. One study has shown that women who have catamenial epilepsy tend to have more seizures in the peri-menopausal period and then fewer seizures post-menopause.

Menopause can bring about symptoms such as hot flushes and mood swings which are sometimes managed with hormone replacement therapy (HRT). HRT contains either oestrogen or a combination of oestrogen and progestogen.

Epilepsy is known to be hormone sensitive, and oestrogen is known to affect seizures for some women. The amount of oestrogen HRT contains is small and often not enough to trigger seizures, however many women with epilepsy do report an increase in seizures once commencing HRT.

If you take HRT and find you are having more seizures than usual, it may be related and you will need to discuss this with your neurologist to consider possible alternatives or different combination of HRT oestrogen and progestogen. Also bear in mind that some anticonvulsant levels may be lowered by the HRT.

Menopause can create sleep problems and quality of sleep, especially in women with hot flushes. Sleep problems increase significantly as women move from pre-menopause to peri-menopause. This can also affect seizures.

Menopausal women with epilepsy have an increased risk of osteoporosis.

The role of HRT in preventing osteoporosis is particularly important for women with epilepsy. Some AEDs can reduce bone density and some people with epilepsy are at risk of falls, and therefore at higher risk of bone fractures. Bone density testing may be recommended if you are on certain types of AEDs. Women with epilepsy who are menopausal have an additional risk factor for osteoporosis as some antiepileptic drugs are known to be associated with osteoporosis and similar problems.

Osteoporosis can be treated but preventative measures are better. High calcium diet, calcium supplements and vitamin D have all been shown to assist with maintaining bone health.

Discuss these options with the doctor to ensure they do not interfere with your antiepileptic medication.
 
For more information:

EAA factsheet – Seizure Smart – Women

EAA smartclips – Dr Cecilie Lander – Epilepsy and planning pregnancy, Epilepsy and unexpected pregnancy

EAA factsheet – Seizure Smart – Parenting with epilepsy

Epilepsy and your changing hormones 

Birth control for women with epilepsy 

Epilepsy and pregnancy

Men’s Issues

Men’s Health

Historically, men’s health has been given low priority because men have not been very good advocates for their own cause. Men don’t seek medical help as often as women – only when they’re feeling very sick or are unable to work. Male poor health, both physical and emotional, can affect families, relationships, communities and the workplace.
 
Men and epilepsy

Epilepsy affects men and women comparatively equally. Being diagnosed with epilepsy can mean minor or major modifications to lifestyle, depending on your current situation and lifestyle.

Apart from biological differences between the genders, there are also different social roles and men often have different stressors, such as work or financial worries, to women. This can translate to different seizure triggers as well.

The impact of epilepsy can differ between genders across the ages. For instance: [1]

  • Males have a higher rate of status epilepticus, sudden unexpected death in epilepsy (SUDEP) and death compared to females
  • Males pursue epilepsy surgery quoting driving, physical activity limitations and financial worries as their main concern compared to females who more so worry about pregnancy and fatigue
  • Both men and women with epilepsy tend to have slightly different problems with reproduction.

 
Changes because of epilepsy

How epilepsy affects someone is very individual and dependent upon their current situation. There are a number of lifestyle changes that can be made to help maintain a healthy lifestyle – and in the case of epilepsy – help gain seizure control.

Some life changes that may occur include:

  • Change in role – family, friends and workplace. If the role changes are significant, particularly gender role conflicts, men often have low self-esteem, anxiety problems with intimacy, marital and relationship problems, and higher degrees of personal stress. This may cause difficulties in planning a future.
  • Change in employment – many men define themselves by their jobs. Their primary focus is on their jobs because that’s where their identity is. The employment problems of people with epilepsy cannot be reduced to just seizures. They are a combined result of seizures and a number of other factors such as:
    • stigma, negative attitudes and lack of understanding about epilepsy by employers,
    • lack of education or experience and difficulties with learning and memory,
    • safety concerns, sometimes unfounded,
    • social isolation and difficulties with transport.
  • Unemployment – appears to be at least two to three times that of the general population
  • Underemployment – because of safety concerns or undue concerns about seizures, or difficulty finding employment, people are often employed in a position lower than what they are capable of performing – providing less income and less self-assurance.
  • Change in income – economic factors can affect men’s health. Loss in or reduction of income can lead to issues such as stress – relationship, financial, work, poor nutrition and lifestyle, and people become less able to practice better health behaviours. A diagnosis of epilepsy can lead to increased costs of transport, medical tests, doctors’ visits and medications.
  • Loss of drivers licence – impacts on role, employment, social activities and most aspects of lifestyle. It can cause isolation dependence.
  • Social life – Drinking habits and late nights often need to be modified – which can impact on ‘boys’ activities and peer acceptance. This may cause feelings of anger, resentment, denial and social isolation – which can also lead to non-compliance with a healthy lifestyle and taking medications as prescribed
  • Relationships
  • Sex drive – Many people with epilepsy report some change in sexual desire, behaviour, or activity as a result of their epilepsy. The most common change is a general lessening of sexual interest and activity, sometimes called hyposexuality.
  • Impotence – some medications may cause erectile dysfunction in men. This can be discussed with the specialist and medications can be changed.
  • Self esteem – all of the above issues can impact on self-worth and self-esteem and cause:
    • Loss of confidence
    • Depression and anxiety
    • Withdrawal from society
  • Taking medication – Men, especially young men are keen to stop medication when seizures are under control. Stopping medication suddenly can cause more seizures and more severe seizures. Any changes in medication should be done in conjunction with your doctor. Always talk to your doctor before changing or stopping medications.

The impact these changes have can vary from person to person.

 

Coping strategies

  1. Gain Knowledge

Learning about epilepsy is the first step to taking control, moving on, improving and managing your disease effectively. The more you know the easier it will be to put the fears and misconceptions of having epilepsy into perspective.

Make a list of questions and keep a diary of your seizures. These will help you learn more about your epilepsy and what triggers your seizures. It also aids the neurologist in deciding appropriate management.

  1. Identify Seizure Triggers

Try to identify what can bring on a seizure for you. Common triggers are stress, over-tiredness, certain drugs or medications, alcohol, sickness, or you may have your own specific triggers. A common reason for having a breakthrough seizure (a seizure that occurs when you are controlled on medication) is missing medication.

  1. Grieve

It’s normal to go through feeling shocked and devastated that you have epilepsy. A range of emotions, mood swings, turmoil and confusion are a part of accepting the condition. Find someone to talk to, a support group or online community, share it with your partner or close friends or find a professional. You can also call on us for advice and guidance.

  1. Be Active

Keep busy and continue your normal activities (unless your doctor suggests it’s unsafe, or find other activities that you can enjoy. Keeping active takes the focus off worrying about your seizures and is good for your overall health.

  1. Keep Healthy

Eat well and get enough sleep. People report they have fewer seizures when they lead a healthy lifestyle. When you first start taking medication it may make you feel tired. This is common and you should adjust to this, but try not to keep too many late nights and avoid too much alcohol.

  1. Be Safe

Especially if seizures are not under control – Have a shower rather than bath, and turn the cold water tap on first to prevent burns, in case you have a seizure. If your house water has a temperature control adjust it to a lower temperature. Leave the bathroom doors unlocked. If possible cook using a microwave. Check your house and workplace to see if there are changes that can be made to make it safer. See our Seizure Smart Safety Fact Sheet for more information.

  1. Find Available Assistance and Support Services

There are a lot of resources to learn more about epilepsy, what support services there are and what you can do to help yourself. Seek available support resources that can help you. Call or email us for further information.
 
For more information:

EAA Seizure Smart Factsheet – Men and Epilepsy

Men’s health 

Depression and men

Issues for men with epilepsy 

Young People

We have resources specifically directed at youth with epilepsy.
 
Equip is a self-paced online tool to assist young people with epilepsy cope with the possible psychological, social and lifestyle changes of living with epilepsy. It has information about issues that may arise for young people with epilepsy. Things such as drugs and alcohol, dating and relationships, telling others about it, and more.

  • Comprehensive source of information – with voiceover if needed
  • Addresses issues faced by youth living with epilepsy
  • Provide strategies to tackle issues during transition from childhood to adulthood
  • Hear others share their experiences

To go to Equip click here

rEaction is an online resource targeted at youth, with and without epilepsy, understand the condition. It is a good one to refer friends to to better realise the impact it can have. Issues covered include epilepsy and:

  • alcohol and drugs
  • fatigue, lack of sleep, stress
  • bullying
  • dating
  • puberty
  • birth control
  • playing sport, driving
  • study and school

Go to rEaction click here.
 
For more information:

Young Epilepsy UK

Teen epilepsy forums 

Youth Health Talk – Young People with Epilepsy

Seniors Issues

In people over 65, epilepsy is the fourth most common neurological disorder after migraine, dementia and stroke. It is more likely to develop in later life than in any other age group. Despite this, it often difficult to diagnose and consequently not treated.
 
Causes of epilepsy

The most common causes of epilepsy in older people are:

  • Disease of the blood vessels in the brain such as stroke or brain aneurysms
  • Dementia or Alzheimer’s
  • Trauma causing head injuries or brain haemorrhage
  • Brain tumours
  • Alcoholism
  • Seizures can also occur in relation to some medications, illnesses and infections but these are not considered epilepsy

Up to one third of people have unknown causes for their epilepsy
 
Difficulties diagnosing [2],[3]

Diagnosing epilepsy in this age group can be more challenging, particularly if the seizures are subtle, such as focal seizures, and not recognised as seizures. Some other diagnostic challenges that may arise include:

  • Multiple medical conditions and medications – Seizures or seizure like activity may be due to or confused with other causes such as; cardiac conditions, kidney or liver failure, diabetes, fainting, migraine, mild strokes, blocked arteries leading to the brain, or vertigo (dizziness with sensation of movement) or medication side effects.
  • Many elderly people are often seeing more than one doctor, and sometimes there is poor communication between specialists meaning important health information can be overlooked. It is best to have a GP who can be the central point and coordinator to keep all the health information together.
  • Confusional states may be due to seizure or post-seizure activity but may also be due to dementia, psychiatric illness, medication, high fever (infections), urinary tract infections or dehydration.
  • Clear descriptions of the attack or seizure are not always possible, especially if the person is living alone, or there are no witnesses.

 
Types of seizures

Because focal seizures are commonly seen in seniors, and are less dramatic than tonic-clonic seizures, they often go unrecognised as epilepsy and are attributed to ageing or dementia.

Episodic blackouts, ‘faints’, ‘funny turns’ and falls are all good reasons to see the doctor as they may be epilepsy. Undetected epileptic seizures in older people are a significant safety concern. Good observation, documentation and description of an event are important to diagnosis.
 
Medical management

Antiepileptic drugs are very effective in controlling seizures in people over the age of 65. People may experience greater sensitivity to medications as they age, so a low dose is usually all that is needed.

If you are taking medications for other health problems, there is a risk that the antiepileptic medication may interact with those other drugs. So it is especially important to tell your doctor and pharmacists about all medications you are taking because this will influence the doctor’s choice in antiepileptic medication.
 
Side effects

Older people may be more sensitive to drug side effects which can include tiredness, unsteadiness, tremor, visual disturbances, changes in mood or behaviour, depression or stomach upsets. It may be possible to completely eliminate these by adjusting or changing medications.

Should these occur and you find them unsettling or intolerable, speak to your doctor or specialist.
 
Taking medication

Some people have difficulty taking medications regularly. Forgetfulness, confusion over taking multiple medications, or simple problems such as difficulty opening pill bottles may all be involved. It is important for spouses, families and caretakers to be alert for these problems and provide help when necessary.

A weekly pill box may be helpful and can be easily used. These can be obtained from most chemists. You can also get medications pre-packed into similar monthly (disposable) packs, but will need to speak to the pharmacist about costs. See Living with Multiple Medicines.

Never stop taking anti-epileptic drugs without consulting the doctor. This is dangerous and can trigger more severe seizures that could be life threatening.
 
Lifestyle management

Epilepsy can substantially affect lifestyle and quality of life at any age, but older people are often more vulnerable to medication side effects, risk of injury and isolation. Having epilepsy at this age undoubtedly contributes to social isolation, withdrawal, anxiety and depression and living alone may make the unpredictable nature of epilepsy more problematic. It is not surprising that a new diagnosis of epilepsy in older people is potentially life changing and may result in many life changes.

Self-management is just as important in this age group as any other. If the person is able, it is important to learn about epilepsy to enable taking an active role in managing the disease. Self-management includes making healthy lifestyle choices and informed decisions about treatment, and actively monitoring and managing symptoms. It can give the person more control over their disease and life. Adequate sleep, good diet, stress control limitation of alcohol, plenty of exercise and stimulating activities often help in seizure management.
 
Issues

Some issues that may arise for someone diagnosed with epilepsy in their senior years:
 
Medical

Medications for epilepsy can mix poorly with other medications taken for other conditions or change how either medication acts. Your doctor should be aware of this, but always check with the doctor and chemist about possible side effects and medication combinations.

After effects of seizures are occasionally prolonged, lasting up to one week, with confusion and extreme tiredness. If this occurs, it is important to have a plan, rest and seek support from family, friends or neighbours during this time.

Poor memory can mean forgetting to take medication. Use a calendar, pillbox, set an alarm or take medications with meals, as reminders.

Seizures are more likely to lead to falls, fractures or injury at this age. To reduce the likelihood of injury during seizures, see our Safety fact sheet for more information.

Many seniors live alone in the community. We can provide information about fall detectors, emergency response services and respite agencies.
 
Social

Developing epilepsy later in life can be difficult to understand, accept and adjust to. However many older people cope relatively well with epilepsy and other chronic illnesses. This acceptance may simply reflect a population who has already begun coping and adapting to other illnesses.

Safety concerns in the home and community. Keeping safe is vital for everyone and sometimes personal monitors or alarms are recommended.

Forgetfulness, poor concentration, memory lapses and mental confusion can be problems for some older people on medication. Regular reminders and medication reviews with the doctor may help.

The fear of injury, falling in public, the problems of taking a longer time to recover from a seizure may contribute to social isolation difficulties and anxiety. Having good supports and keeping in touch with family, friends and community groups is vital.
 
For more information:

EAA factsheet – Seizure Smart Seniors

EAA Smartclip – Associate Professor Cecilie Lander – Epilepsy and Seniors

Information for seniors

Epilepsy and the seniors community 

Information for Parents

Having a Child with Epilepsy

When your child is diagnosed with epilepsy, you will experience a range of emotions. An epilepsy diagnosis may be confusing — there are many different types of epilepsy. Be sure to discuss with your child’s doctor about their particular circumstances, to start the learning process about how to help your child.

When a child has epilepsy, you feel there is less control over what happens to them – because seizures are unpredictable. We say “stay calm” but you see your child having a seizure and it is difficult to not feel anxious, upset and frightened.

You are probably asking “Why?…Why does my child have epilepsy?” “Why has this happening to us? ” What have we done to deserve this?”

The questions are endless. The fear, grief and anger – and sometimes guilt, causes unbearable emotional anguish. You are not alone with these questions, in fact most parents experience these feelings at some stage. You are merely experiencing a normal reaction to being given a diagnosis that creates uncertainty.

Sometimes, diagnosis is a relief. Finally, you know what is wrong with your child and can face the future with some understanding of what to do and expect.

Fortunately, for most, this expectation can be that their child will have a reasonably normal life, with a few restrictions. Most seizures will respond to medication and it is quite possible your child will grow out of their seizures.
 
Who Should We Tell?

Once you’ve got a better understanding of your childs epilepsy, then you may need to explain things to others. There are a number of resources available that can help you explain the condition to a child or other people.

Other issues will be “How do I explain this to my child, my other children, my friends”? Who needs to know? How will this affect their future?

Try not to answer all your questions at once. Speak with your child and see what he/she may want. Work through things slowly or as they arise.
 
Protecting Your Child

One of the most difficult areas parents speak about is not over-protecting their child. This is instinctive, to protect one’s children from ridicule, potential harm, or from taking risks. Yet, children take risks every day, as a normal part of growing up, a satisfying of their curiosity. It is important to let them lead as normal a life as possible and sometimes learn from mistakes.

How parents react and respond greatly influences the child’s response, feelings and possible behaviours. Learning about epilepsy, talking openly to your child, accepting the epilepsy and treating your child as you treat any other child, will lead towards a positive effect on the child’s acceptance and self-esteem.
 
Talk to Someone

It’s best to discuss these concerns with someone who understands. Someone who will not judge you for your worrying about the life of someone you love. This may be your doctor, a friend, a counsellor or one of our Nurse Educators.

The message here is TALK about it, LEARN as much as you can, KNOWLEDGE gives you CHOICE and CONTROL.
 
Questions you may have

There are countless questions & concerns that parents have expressed. You may want to add yours to the list, if so please email us.

  • Why us?
  • Is it normal to feel so angry?
  • Why isn’t there a cure?
  • Will my child be able to have a family?
  • Can they play sports?
  • Do I tell the teacher? Do I tell his friends?
  • How do I explain this to..?
  • How do I deal with their anger?
  • How do I deal with their refusal to take their medication?
  • What are the long term side-effects of the medication?
  • Can they drive?
  • Does it restrict their choice of employment?
  • Is it genetic? Will they outgrow it?
  • What can trigger a seizure?
  • What causes epilepsy?
  • What are the treatments?
  • Is there any alternative to taking medicines?
  • Can surgery help?
  • Do seizures cause brain damage?
  • Will it affect their learning?
  • Will their children have epilepsy?

Many of these questions can be directed to your specialist, or discussed with an educator from Epilepsy Action Australia.
 
If you are a parent with epilepsy

EAA factsheet – Seizure Smart – Parenting with epilepsy if you as a parent has epilepsy.

Storybooks to explain epilepsy to children
 
For more information:

EAA booklet When your child has epilepsy 

EAA factsheet – Seizure Smart – Epilepsy for Kids

Young Epilepsy video to explain epilepsy

Giving medications to children

Information for Teachers

In Australia, it is estimated that almost 60,000 people under the age of 20 years have epilepsy.

People can develop epilepsy at any stage of their lives but a large number have their first seizure(s) during childhood or adolescence. Therefore, from time to time teachers will have students with existing epilepsy or newly diagnosed epilepsy.

Seizures can be controlled in greater than 70 percent of people with antiepileptic medication, and a large number of children grow out of their epilepsy by adolescence.

For further information, to arrange an education session or develop a seizure management plan please call 1300 37 45 37 or contact us on epilepsy@epilepsy.org.au
 
Who is affected?

Students with epilepsy may face challenges unknown to other students. These may be major obstacles or minor inconveniences depending on factors such as:

  • How often seizures occur
  • The type and severity of seizures
  • Medications – type and dose
  • Associated issues with cognition or behaviour
  • Social and psychological adjustment
  • The level of understanding of epilepsy by school staff
  • The attitudes and level of knowledge of other students and peers

Negative reactions from peers, other students and school staff can negatively influence the person with epilepsy.

Epilepsy is not a condition to be feared. It is important for teachers to have a general understanding of the disease, its various forms, physical, psychological and treatment effects.

It is important to understand that seizures are often fully controlled with medication and even if they aren’t, a seizure is only a temporary interruption. People with epilepsy can carry on as normal in between seizures. Under certain circumstances, a seizure is likely to occur – often caused by ‘triggers’. There are some common triggers, and some individual triggers.
 
Likely seizure triggers

The most common seizure triggers reported by people with epilepsy include:

  • Missing medications
  • Stress – physical or emotional
  • Lack of sleep, overtiredness
  • Illness
  • Hormonal changes (females)
  • A very small percentage of people with epilepsy are sensitive to strobe lights and patterns – these can be caused by television, videos, computer screens, and flashing lights
  • Growth spurts in children or youth
  • Becoming overheated
  • Alcohol and drugs

Be aware of seizure triggers. Parents or the child should inform the school about their individual triggers.
 
Memory and concentration

Memory and concentration are crucial for learning, and sometimes people with epilepsy complain of difficulties in this area. There are a number of reasons why someone with epilepsy has difficulties with memory and concentration and some possible causes include:

  1. Side effects of medications

Sometimes medications may affect the student’s ability to learn. This is often related to the dose of the medication. Some common side effects of antiepileptic medications include:

  • Concentration, short term memory loss
  • Hyperactivity, drowsiness, fatigue
  • Hand, eye, balance, speech problems, unsteadiness, dizziness
  • Nausea, vomiting, weight gain/loss
  • Depression, aggressiveness, anti-social behaviours

If the student seems excessively sleepy or lacking in energy during the day, parents should be informed.

  1. Seizures

Seizures are brief, but the effects can be lasting. The after effects of seizures include tiredness, drowsiness, headaches, nausea, and mood changes. After a seizure, the person is unlikely to be able to concentrate well, and will most likely need a rest or short sleep. It will depend on the child if they need to go home or not.

Many people with epilepsy also have “subclinical” epileptiform activity in the brain in-between seizures. This is abnormal electrical activity, but not enough to generate a seizure, but this abnormal activity can also attribute to learning difficulties.

If seizures are causes by some underlying condition of the brain – even minor – this may involve the area of the brain associated with memory, or may change the way the brain handles information.

  1. Psychosocial issues

Epilepsy is a chronic disorder and may have similar effects on children as would other chronic diseases.

Seizures are unpredictable. Many people report that the most frightening thing about seizures is their unpredictability. Therefore, it may be even more difficult to adapt to epilepsy than to other more predictable chronic conditions.

Even a child whose epilepsy is controlled with medication may still be anxious about having another seizure, especially in the presence of peers.

Fear and anxiety can be quite common and can also lead to depression. It is important to observe the child for changes in behaviour and loss of interest in activities.

Overprotection and restrictions on activities can also affect a person’s self-esteem and make them feel ‘different’.

Independence and social acceptance are important – so it is important to let the student lead as normal life as possible – balancing safety and common sense vs risk.

Teacher attitudes may influence the extent to which students with epilepsy participate in sport and extra-curricular activities. A student with epilepsy must never swim alone and sports such as highboard, scuba diving and rock climbing are best avoided. The student who is denied the opportunity to participate may well have feelings of social isolation and rejection reinforced. Restrictions should be discussed with the student and family.

Historically epilepsy has been wrongly surrounded by myths and misunderstanding. People with epilepsy still sometimes face common misconceptions of insanity, intellectual disability and an inability to achieve.

Some of the history’s greatest achievers had epilepsy yet the myths still survive. They can be changed through education that encourages openness and an understanding of the disorder.

A child’s perception of their epilepsy largely depends on others reactions to it.
 
Suggested teaching strategies

  1. Co-operative Learning

Group work develops listening and talking skills, encourages interaction with peers in problem solving and allows students to ask questions and learn from each other.

  1. Task Analysis

The breaking down of specific tasks into their most basic steps establishes teaching and learning stages that will need to be achieved if the student is to succeed. Task analysis can be applied to any learning or social situation.

  1. Cueing

Proves effective especially with listening activities. Tell the student, ahead of time, of the purpose of the activity. Give a quick summary of the passage and ask comprehension questions before reading the passage. Knowing the purpose of the activity will help keep the student on task.

  1. Reviewing

A review of the processes used in solving a complex task can be very helpful for the student.

  1. Repetition

Leads to the consolidation of skills learnt in mastering a task. Unconsolidated skills are not likely to be generalised to other learning tasks.

  1. Mnemonics

Uses verbal, visual and symbolic techniques as memory aids. The acquisition of facts and procedural knowledge is governed by memory and the most effective measures for memory development are rehearsal related.
 
Unexpected disclosure in the classroom

In open classroom discussion of epilepsy, teachers may be faced with the unexpected disclosure by a student that they have epilepsy.

If this occurs, the teacher should guide the discussion to ensure that it is supportive. This can effectively illustrate that epilepsy is both real and manageable, and should not affect the judgements we make about people. The teacher should be careful not to encourage a level of disclosure that the student may, on reflection, regret.

If the disclosing student agrees, during a later session, they may wish to share with the group the type of epilepsy they have, the effect of medication and what they would like others to do if they see them having a seizure.

An educator may be able to visit the school for an education or question and answer session. There are also free short courses online for primary school students and resources for secondary school students.
 
Unexpected disclosure in private

In the event of an unexpected disclosure in private the teacher can invite the student to talk about it.

Ask the student if they feel the condition and/or medication is affecting their learning and, if so, ask what you can do to help. Discuss who else might need to know, such as teaching staff, coaches and friends, and explore reasons for and against disclosure.

Ask the student whether they would like the opportunity to talk to the class about epilepsy and what they would like you to do if a seizure occurs. Assess degree of coping and if necessary arrange counselling. Thank the student for the disclosure and offer further assistance at any time.
 
Things to remember

  • Children with epilepsy have the same range of intelligence and ability as other children.
  • Some neurological disorders that can cause epilepsy can also result in learning difficulties.
  • Seizures can create feelings such as anxiety and depression, poor self-image and social problems – all which can affect school performance.
  • Missed schooling can impact on learning and important peer socialising.
  • Medications may also impact on the student’s level of concentration, attention and memory function.
  • How the students seizure looks may have an effect on their self-perception and consequent behaviour. Some types of seizures may be frightening to the uninformed onlooker, others can be quite bizarre and not recognised as a seizure. Appropriate understanding and reactions from class mates and teachers can have a considerable positive effect on a student with epilepsy.
  • The time that teachers spend with students places them in a unique position to observe and provide information about a student’s seizures.
  • Seizures are not to be feared.
  • Most seizures last approximately 1- 3 minutes although there may be a period of confusion after the seizure.
  • Sometimes confusion after a seizure can be quite prolonged, from minutes up to several hours.
  • People are often exhausted and need rest or sleep after a seizure, especially a tonic clonic seizure.
  • Seizures cannot be stopped or slowed by restraint. The brain almost always stops the seizures naturally. Let the person have the seizure and then apply first aid if necessary.
  • It is physically impossible to swallow the tongue. There is no need to insert anything into the mouth. This is dangerous and fingers may be bitten or teeth broken.
  • Most people usually have no memory of all or most of the seizure.
  • You can make a difference!

For further information, to arrange an education session or develop a seizure management plan please call 1300 37 45 37 or email epilepsy@epilepsy.org.au
 
For more information:

EAA factsheet – Seizure Smart – Epilepsy and Education

Classroom problems and solutions – Epilepsy

Epilepsy and university experience

Thinking, memory and learning

Young Epilepsy