Many people with epilepsy and their families worry how epilepsy will affect various aspects of 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.
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.
Looking After Yourself
If you have just been diagnosed with epilepsy, you might feel many things – shock, confusion, anger, fear or sadness. Some people may even feel relieved with a diagnosis after a long-time of not knowing how to manage their health.
Everyone’s reaction is different, but they’re all completely normal.
It can be difficult to come to terms with a diagnosis of epilepsy, but it’s important to remember that generally most people with epilepsy can lead a full and active life. Even though seizures can be disruptive and impact on many areas in life, the majority of people with epilepsy achieve good seizure control with regular medications and a sensible lifestyle.
Epilepsy should not define who you are and what goals you would like to achieve.
Take the time to adjust to your diagnosis. A chronic or new health condition usually means having to adjust, getting used to taking medications and maybe changing the way you live and work. This can add extra stress, and sometimes change the way you see yourself and relate to others.
It can be difficult to maintain an emotional balance and cope with negative feelings and certainly living with epilepsy can open the door to depression and anxiety. So be aware of the symptoms of these conditions as well as they can creep up on you. See Epilepsy, Anxiety and Depression.
Realistically, you will have ‘good’ days and ‘bad’ days and you can be affected not only physically, but emotionally, socially and sometimes financially. When you need help, ask for it.
Try to learn as much as you can about epilepsy, ask for support when you need it, and actively involve yourself in your treatment and management of the condition.
Maintain your social relationships and don’t isolate yourself. Family and friends are a source of support for most people.
Above all, look after yourself. Try and eat healthy, sleep enough and keep active. That not only goes for those with epilepsy but for the parents of children with epilepsy or those who care for a relative or loved one with the condition.
Epilepsy is a health condition, it is not a lifestyle. It doesn’t mean that you can’t pursue your dreams and enjoy life just like everyone else.
There’s no time limit on adjusting to having epilepsy. In fact, most people will find that emotions surface sometimes, depending on what’s happening in their life, especially when experiencing any setbacks or having a bad day. Even if your seizures are controlled, it’s natural to feel sad or worried from time to time.
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:
Adjusting to Life with Epilepsy
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.
- As much as possible 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, then things might need to change.
- Try not to isolate yourself. Have at least one person you can talk to.
- Learn about epilepsy and the type of epilepsy you have. It can really help you feel a sense of control and will allow you to make informed decision about your medication and health.
- Seek help if you are feeling depressed or anxious all the time. It is quite normal to have these feelings after a diagnosis of epilepsy or any other health condition.
- Speak to your doctor if you feel your medication is giving you too many side effects, or ones that are negatively and significantly affecting your life.
- Find some support. 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.
For more information
People often find that making some minor changes to lifestyle can reduce seizures. There are a few things you can do to avoid seizure triggers that can not only improve your life but give you a sense of control. These can include:
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 reduce the effectiveness of antiepileptic medications, and disrupt sleep.
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 they are more likely to increase the risk of seizures. It is recommended that the average person drink (or eat) less than 600 mg per day – around four cups of strong coffee, or five or six cups of tea. For someone with epilepsy the recommended amount should be less – around two or three caffeine drinks at most.
High energy drinks. There are reports of seizures induced by energy drinks. These drinks contain more caffeine than a strong cup of coffee, and the caffeine combined with other ingredients such as guarana, amino acid taurine, green tea and other herbs, vitamins and minerals, may interact.
The combination of the stimulant and sugar can also be dehydrating and when consumed with alcohol may affect heart rates, blood pressure and even mental state. More than one energy drink can lead to side effects which include nervousness, irritability, frequent urination, and arrhythmia.
Avoid these drinks if you can.
Grapefruit and Seville Oranges
Grapefruit 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 at all times if you taking this medication.
Get Enough Sleep
Lack of sleep is a common reported trigger for seizures for many people with epilepsy. The amount of sleep a person needs will differ, 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 should 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, excessive daytime sleepiness or over-tiredness, discuss this with your doctor.
For more information
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
- 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
- do something positive every day.
If stress is having a significant impact on you, discuss your concerns with a professional such as a psychologist or counsellor.
For more information
This Way Up – a free online course to manage stress. There are many other online courses or apps to help with stress.
Be Aware of Seizure Triggers and Keep a Seizure Diary
Identifying seizure triggers and learning how to avoid them is important for seizure management. Common reported seizure triggers include missed medications, sleep deprivation and stress. There are many other individual triggers.
Avoiding seizure triggers can be difficult at times. Weigh up the risks and look at the quality of life issues. Don’t restrict yourself to the point of not enjoying life any more.
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.
For more information
Dr Dan McLaughlin Seizure Anxiety
Drugs and Alcohol
In small amounts, alcohol should not cause seizures, but some people with epilepsy are more affected than others. 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:
- Most people with epilepsy can enjoy a social drink; however, some antiepileptic medications do not mix well with alcohol.
- Heavy or binge drinking is certainly not recommended. Not only can this increase the risk of seizures but the associated late nights, missed meals, forgetting medications and poor sleep, can trigger seizures as well.
- Antiepileptic medication can lower your tolerance for alcohol, so the immediate effects of alcohol are greater. In other words, you will get drunk faster.
- The side effects of antiepileptic medication may be enhanced by alcohol.
- Some substances, such as alcohol, caffeine, nicotine and various prescribed and over-the-counter medications, when taken incorrectly or in large amounts may increase the risk of seizures.
- Many illicit 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 illicit drugs, may have with your prescription medications. There is no certainty about 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.
- Avoid binge drinking. This can often trigger seizures several hours later after the drinking has stopped.
- 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.
- 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.
- If you know it’s going to be a late night, the try and catch a nap in the afternoon before heading out.
- Keep yourself hydrated with non-alcoholic drinks during the night.
- 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
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 taking control over one’s life and choices.
A common concern for people with poorly controlled seizures living alone is what if a seizure occurs causing injury, and nobody knows?
There are many alarms and devices available that can help people who live alone, ranging from telephone alarms, personal alarms, fall alarms, and daily calls. These products can notify emergency assistance or nominated people should a seizure occur. There are many of options available and costs and service types vary considerably.
Whilst the monitors and alarms don’t guarantee 100% protection, the can provide peace of mind.
Epilepsy Action Australia will have information on these products.
Some people may have a routine with family or neighbours to either call, drop in or notice abnormal behaviour (such as the blind not being raised, lights not on).
Seizures causing loss of awareness (even if brief and subtle) or loss of motor control impair someone’s ability to control a vehicle.
When you have your first seizure, the doctor will inform you that you cannot drive and for the period you are to abstain from driving. This period will depend on many things including; what has caused the seizure, what type of seizure you had, if it is epilepsy, and what type of epilepsy.
It is important to remember that you will be advised not to drive and, if you have met certain criteria, you will be able to drive again – safely and legally.
Unfortunately, not everyone will get their licence renewed, and others may be issued a conditional license. Ultimately the decision to suspend or renew a driver’s licence rests with the Driving License Authority.
It is also important that you feel confident that you can drive safely.
For more information
Self-management is when someone with a condition or disease takes an active role to help 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.
Learn About Your Condition
Try to find out as much as you can about your type of epilepsy 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 recognise 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 your medication as prescribed is essential to moving towards 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 your phone, watch or some type of alarm as a reminder.
- Use a pillbox.
- Place the medications in a visible position as a reminder.
- Use a chart or calendar and tick when the dose is taken.
- Ask someone in the household to remind you.
Check Before Taking Other Medications or Supplements
Other medications, including over-the-counter medications, may react with antiepileptic medications – either increasing the risk of seizures or toxic side effects
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 especially ones such as Gingko Biloba, St Johns Wort and Evening Primrose Oil. These may affect seizure control for some people.
Read more about using complementary therapies for people with epilepsy.
Brands and Generic Medications
There are many different brands and generic epilepsy medications on the market and your pharmacist may offer you an alternative to the one you usually take.
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.
Read about Switching Brands
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. Don’t restrict your life to having no enjoyment.
Common reported seizure triggers include missed medications, sleep deprivation and stress.
More individual seizure triggers can also include:
- Physical fatigue or exhaustion
- Emotional upsets, over-excitement
- Hormonal changes in females
- Low blood sugar
- Heat or weather changes
- Alcohol and drug use
- 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 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 lessens the chances of having a seizure.
Make any necessary lifestyle changes as discussed previously.
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 events or circumstances that may have triggered the seizure
- General health and energy level leading up to the seizures
- Menstrual cycle for women
To use our online seizure diary click here.
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:
This Way Up – a free online course to manage stress
Self Management Programs Australia
Some health funds may offer programs as well. Click here to see examples.
Risks and Safety
See our Epilepsy and Risk section
Many people need to make some minor lifestyle changes to have a positive effect on managing seizures. You can take control and play an active role in your seizure and trigger management.
These are a few aspects of your life that may need changes.
Women with epilepsy face some different issues to men with epilepsy. Many women find that their seizures are affected by hormonal changes.
The following general information aims to make it easier to ask questions when visiting your GP, neurologist, gynaecologist or obstetrician.
Seizures and hormones
What does that have to do with epilepsy?
Both oestrogen and progesterone interact with brain cells. Oestrogen makes brain cells more excitable whereas progesterone, calms the brain cells down. So, most of the time there is a balance between these hormones. However, when the oestrogen level is higher, seizures are more likely to occur. These times are during ovulation and menstruation.
The female reproductive hormones, oestrogen and progesterone, have an influence on 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.
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.
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.
Puberty is a time of complex physical, hormonal and emotional changes. These physical changes happen so quickly that your body may need a higher dose of medication. The dose of antiepileptic 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.
Many women with epilepsy have a tendency to have more seizures at certain times of the menstrual cycle, particularly ovulation and just before or during menstruation.
This may be due to:
- hormonal fluctuations,
- fluid retention,
- reduced blood levels of antiepileptic 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 in relation to their menstrual cycle – 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 your menstrual cycle and when seizures happen to see if you have a pattern in relation to your hormonal changes.
Some women with epilepsy have a slightly lower fertility rate than the general population. This means that they may find it more difficult to become pregnant. There are many different causes of this reduced fertility. These can include having epilepsy itself, or taking certain or multiple antiepileptic drugs, an absence of or irregular menstruation, or other associated conditions such as polycystic ovary disease.
Polycystic Ovary Syndrome
There are two conditions: Polycystic Ovaries (PCO), and Polycystic Ovary Syndrome (PCOS)
- Polycystic ovaries (PCO) means multiple ovarian cysts are seen on ultrasound.
- PCOS is a metabolic condition that may or may not come with having polycystic ovaries.
Polycystic ovary syndrome (PCOS) is a reproductive disorder that results in lower fertility. Women with epilepsy can have features of PCOS at a higher rate, and polycystic ovaries (PCO) also are also present at high rates in this population. An ovarian cyst is a fluid filled sac that occurs in or on an ovary.
The symptoms for PCOS. These include:
- Excessive hair growth on the face, chest, abdomen
- Hair loss, in a classic “male baldness” pattern
- Polycystic ovaries (seen on ultrasound)
- Obesity, particularly central obesity (being apple-shaped)
- Infertility or reduced fertility
- Irregular or absent menstrual periods
Sodium valproate (Epilim) is associated with weight gain and increased testosterone levels, which are two features of PCOS.
Speak to your doctor if you have concerns about these symptoms. For more about PCOS
Some women report that hormonal contraception can influence their seizures.
Some antiepileptic medications and hormonal contraceptives may affect each other’s metabolism, reducing effectiveness and 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 reduce the effectiveness of oral and subdermal implant contraceptives*
- Carbamazepine (Tegretol)
- Lamotrigine (Lamictal)
- Oxcarbazepine (Trileptal)
- Phenytoin (Dilantin)
- Primidone (Mysoline)
- Topiramate (Topamax)
Antiepileptic drugs that do not interfere with oral and subdermal implant contraceptives*
- Acetazolamide (Diamox)
- Clobazam (Frisium)
- Clonazepam (Rivotril, Paxam)
- Diazepam (Valium)
- Ethosuximide (Zarontin)
- Gabapentin (Neurontin)
- Lacosamide (Vimpat)
- Levetiracetam (Keppra)
- 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)
* Source: NSW Medicines Information Centre – Drug Information Pharmacist 16 Feb 2011 and The Treatment of Women with Epilepsy
It may be worth considering long acting reversible contraceptives such as Depo Provera® injection, intrauterine device (IUDs), and Mirena® in women with epilepsy taking certain antiepileptic drugs. This is something you should discuss with your specialist.
Morning after pill
Women taking enzyme inducing antiepileptic drugs (the four main ones being carbamazepine, phenytoin, phenobarbital and primidone) 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 condoms.
If you are thinking about a future pregnancy it is best to be well informed and prepared. This gives you time make plans such as medication changes, lifestyle changes, work changes and try and get the seizures controlled as best as possible.
People worry about having seizures during pregnancy, but in two-thirds of women the frequency of seizures stays the same during pregnancy, in 17% there is an increase in seizures, and in 16% seizure frequency decreases.
A few points
- Over 93% of women with epilepsy can expect to have normal healthy babies.
- Less than 20% 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 get the best possible seizure control before falling pregnant. Wait until any medication changes are stable before trying to conceive
- There is no evidence that focal seizures or absence seizures are a risk to the foetus. However, tonic-clonic seizures are potentially harmful to both mother and baby.
- It is preferable, but not always possible, to be taking only one antiepileptic medication during this period. Both the neurologist and obstetrician will be involved in reviewing your 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 at least one month before conception.
- Monitoring of medication levels may be necessary because of altered metabolism of the antiepileptic drugs during pregnancy.
A note about Sodium Valproate (Epilim):
Sodium Valproate a medication known to increase the risk of birth defects and developmental disorders for an unborn baby. This is a commonly used medication for epilepsy and provides effective seizure control for many people. It is recommended that valproate should not be used in pregnancy unless the woman has a form of epilepsy that is unresponsive to other anti-epileptic medications. If you are taking this medication before pregnancy, it is best to change medication, however if no other medication controls your seizures well, then your neurologist will advise you about the safest dose for your baby.
The Australian Pregnancy Register for women on antiepileptic medication is conducting continuing research on the incidence of birth defects from pregnancies of women taking these medications.
To register phone 1800 069 722.
Pre-pregnancy counselling is very important as your epilepsy treatment should 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 lessen any risks to you and your baby. This is an important time to ask questions.
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 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 other impacts it can 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 antiepileptic medication as this can pose an even greater risk to both mother and baby.
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 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 someone close to you or a counsellor. Talking about feelings, both positive and negative, can be enormously helpful.
- Look after yourself, avoid alcohol, don’t smoke or take unnecessary or illegal drugs
- Look 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
Watch this short video about epilepsy and pregnancy
Read about Seizures in the Womb
A woman goes through menopause when the ovaries stop releasing eggs, causing the body to stop making natural hormones. 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 have an increase in seizures, many women have no change in seizure frequency.
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 antiepileptic drugs 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 antiepileptic drugs. 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, as well as regular exercise.
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 factsheet – Seizure Smart – Parenting with epilepsy
Historically, when it comes to health, men have not been very good advocates for their own cause.
Epilepsy can be associated with unique, gender specific challenges related to sexual health, mood and self image. This differs from person to person, but certainly gender can be a factor on how epilepsy affects someone.
Men and Epilepsy
Male and female sex hormones can influence the excitability of nerve cells in the brain and thus influence seizure control. Hormones not only affect seizures they can also play a role in:
- Energy levels
- Drive and motivation
- Sexual function
- Bone density
The impact of epilepsy can differ between genders across the ages. For instance:
- Males quote driving, physical activity limitations and financial worries as their main concern compared to females who worry more about pregnancy and fatigue
- Both men and women with epilepsy tend to have slightly different problems with reproduction
- Males pursue epilepsy surgery more actively
- Males have a higher rate of status epilepticus, sudden unexpected death in epilepsy (SUDEP) and death compared to females.
Changes because of epilepsy
Men and women have different social roles and men often stress about different things to women. This can sometimes translate to different seizure triggers as well.
Being diagnosed with epilepsy will no doubt change a number of aspects in life. Sometimes this will be short term, sometimes longer. Some life changes that you may have to adapt to include:
- Change in role – possibly within the family and/or the workplace. This is particularly relevant especially if you are the family bread winner. This can be a challenge if you are no longer able to work or drive. Major role changes can affect self-esteem, cause anxiety, and/or depression, marital and relationship problems, and higher degrees of personal stress. This may cause difficulties in planning a future.
- Change in employment – Seizures may force someone with epilepsy to have to change jobs or reconsider their work role significantly. This can lead to financial hardship, unhappiness, depression or mood changes.
- Unemployment – appears to be at least two to three times that of the general population and can often happen suddenly if there are significant safety concerns if a seizure occurs in the workplace.
- 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 can perform – providing less income and less self-assurance.
- Change in income – financial struggles increase stress and ultimately affect health. A diagnosis of epilepsy can not only cause employment changes, it can lead to increased costs related to medical tests, doctors’ visits medications and possibly transport.
- Loss of drivers licence – this can have an enormous impact on role, employment, social life and most aspects of lifestyle. It can cause social isolation and dependence on others.
- Social life – Drinking habits and late nights usually need to be modified – which can impact on social activities and peer acceptance, particularly in young men. 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.
These changes don’t apply to everyone and aren’t necessarily long term, they may be temporary until you have your seizures well managed.
- Sex drive – Many people with epilepsy report some change in sexual desire (libido), 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. Many factors can be involved in loss of libido including depression, anxiety, seizures and medications.
- Impotence – some medications may cause erectile dysfunction in men. This can be discussed with the specialist and medications can be changed if this is found to be the cause.
All of the above points can impact on your self-worth and self-esteem.
Some people with epilepsy can have difficulties with self-esteem. They can feel self conscious about having epilepsy and worry about having seizures in public. Other things that can affect self esteem include a fear of being judged or discriminated against, and the loss of independence.
The effects of low self esteem can include:
- General life dissatisfaction
- Depression, anxiety
- Loss of confidence
- Sexual problems
There are ways you can improve your quality of life and self esteem. Don’t focus on what you can’t change, look at what you can change.
- Seizure control
It is important to take your medications as prescribed and make some lifestyle changes to improve your chances of good seizure control.
- Identify seizure triggers
Try to identify what circumstances can bring on a seizure. Common reported triggers are missing medication, stress, lack of sleep or over-tiredness, certain drugs or medications, alcohol, sickness, or you may have your own specific triggers. Keep a diary of your seizures and the circumstances in which they happen. Sometimes this can identify patterns and things that may be setting off your seizures. When you understand this, it is a good start to avoiding situations that may cause your seizures.
- Go through the motions
It’s normal to go through feeling shocked, angry and devastated that you have epilepsy. A range of emotions, mood swings, turmoil and confusion are a part of accepting the condition. It can be a difficult condition to predict and know what is going to happen. 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 us for advice and guidance.
- Be active
Exercise and being active is good for your mental and physical health, reduces stress and improves sexual function. 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.
- 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 your body should adjust to this, but try not to keep too many late nights and avoid too much alcohol.
- Be safe
Especially if seizures are not under control. Think about potential situations around the home, workplace or during activities. Try to avoid situations that could be catastrophic if a seizure occurs – such as swimming alone, surfing, scuba diving, working at heights or with machinery. See our Seizure Smart Safety Fact Sheet for more information.
- Learn about epilepsy
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.
For more information:
Epilepsy can bring about many difficult challenges and affect people in many different ways – physically, socially, emotionally and also have cognitive effects. It is not just about seizures.
The nature of epilepsy, it is unpredictable and often ongoing, and the fact that it is a disease that affects the brain, means it can certainly have an impact on behaviour, thoughts and emotions.
We have resources specifically designed for young people with epilepsy.
Equip is a self-paced online tool to help young people with epilepsy cope with the psychological, social and lifestyle changes of living with epilepsy.
There is information about issues such as drugs and alcohol, dating and relationships, telling others about it, and more.
- Comprehensive source of information – with a voice-over 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
You will need to create a login first.
Epilepsy Action Australia have a Facebook group specifically for young people. It is a private group so you will need to contact us [email protected] to find out more.
For more information:
This age is the most common time in life to develop epilepsy
In people over 65, epilepsy is one of the most common neurological disorders. It is the most likely time to be diagnosed with epilepsy.
However in this age group it sometimes takes longer to diagnose and therefore not recognised or 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
- Dementia or Alzheimer’s Disease
- Trauma causing head injuries or a brain haemorrhage
- Brain tumours
- Seizures can also occur in relation to some medications, illnesses and infections but these are not considered epilepsy
Up to one third of people in this age group have no known cause for their epilepsy
Difficulties diagnosing in this age group
Older people are more likely to have focal seizures. These seizures have less prominent features and are more subtle. This can make diagnosis more challenging, particularly if the seizures are subtle, such as focal seizures, because they are often not recognised as seizures or misinterpreted as something else. The period of confusion after a seizure can last much longer compared to younger people.
Some other diagnostic challenges that may come up include:
- Other medical conditions and medications
- Seizures or seizure like activity may be due to or confused with other causes such as; cardiac conditions, diabetes, fainting, migraine, mild strokes, blocked arteries leading to the brain, or vertigo (dizziness with sensation of movement) or medication side effects.
- Older people often have 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.
- Confused 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 episodes or seizures 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 older people, and are far less obvious than tonic-clonic seizures, they often go unrecognised as seizures and can be attributed to or confused with 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 safety concern. Good observation, diarising and description of events are important to help with diagnosis.
Antiepileptic drugs are usually quite effective in controlling seizures in people over the age of 65. People may have a greater sensitivity to medications as they age, so they may be more likely to experience unwanted side effects. Generally a low dose is usually all that is needed to control seizures.
Other health conditions and medications influence what antiepileptic drug will be chosen. If you are taking medications for other health problems, there is a risk that the antiepileptic medication may interact with them. So, it is important to tell the doctor and pharmacists about existing health conditions and medications.
Older people may be more sensitive to medication side effects which can include tiredness, dizziness, unsteadiness, tremor, visual disturbances, changes in mood or behaviour, depression or stomach upsets. It may be possible to lessen these by adjusting or changing medications.
Should these side effects occur and you find them unsettling or intolerable, speak to your doctor or specialist.
Some people have difficulty taking medications regularly. Forgetfulness, confusion over taking a number of 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 easy. 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 or change doses of antiepileptic medications without consulting the doctor. This is dangerous and can trigger more severe seizures that could be life threatening.
Epilepsy can 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 can contribute 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.
Older people are often more vulnerable to medication side effects, risk of injury and isolation
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.
Some issues that may arise for someone diagnosed with epilepsy in their senior years:
Medications for epilepsy can affect 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 pharmacist about possible side effects and medication combinations.
- The after effects of seizures are occasionally lengthy, and rarely can last a few days, with confusion and tiredness. If this happens, it is important to have a plan, rest and seek support from family, friends or neighbours during this time.
- 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.
- Poor memory can mean forgetting to take medication. Use a calendar, pillbox, set an alarm or take medications with meals, as reminders.
- Many seniors live alone in the community. We can provide information about fall detectors, emergency response services and respite agencies.
Developing epilepsy later in life can be difficult to understand, accept and adjust to. However many older people cope relatively well with epilepsy. This acceptance may simply reflect a population who has already begun coping and adapting to other illnesses.
Loss of driving license and fears about injury during seizures can lead to staying at home instead of participating in usual activities.
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 Smartclip – Associate Professor Cecilie Lander – Epilepsy and Seniors
Information for Parents
Having a Child with Epilepsy
When your child is diagnosed with epilepsy, you may 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 epilepsy type, 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 usually 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 fear, grief and anger – and sometimes guilt, and many other emotions. There are many questions. You are not alone with these questions, and most parents experience these feelings at some stage. You are merely having a normal reaction to being given a diagnosis that creates uncertainty.
Sometimes, diagnosis can be a relief. Finally, you know what is happening with your child and can face the future with some understanding of what to do and expect.
Who Should We Tell?
How do I explain this to my child, my other children, my friends? Who needs to know? How will this affect their future?
Once you’ve got a better understanding of your childs epilepsy, then you may feel more prepared 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.
Speak with your child and see what he/she wants to know. Work through things slowly or as they arise. Epilepsy and Seizures
For younger children Ben and Sunitas big day out
Protecting Your Child
Wanting to protect your child is natural, and some parents find it difficult not to over-protect their child particularly when there are additional needs to consider. It is instinctive, to want 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 experience and mistakes.
How parents react and respond can influence the child’s response, feelings and behaviour. Keep open communication with your child and answer any questions about the epilepsy they may have, accepting epilepsy and treating your child as you treat your other children, will lead towards a positive effect on the child’s acceptance and self-esteem.
Talk to Someone
It’s best to discuss concerns with someone who understands. Someone who will not judge you for your worrying about the life of someone you love, small or big. 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, as KNOWLEDGE gives you CHOICE and CONTROL.
For more information:
Young Epilepsy video to explain epilepsy
If you are a parent with epilepsy
EAA factsheet – Seizure Smart – Parenting with epilepsy if you as a parent has epilepsy.
Information for Teachers
People can develop epilepsy at any age but a large number have their first seizure(s) during childhood or adolescence. Therefore, from time to time teachers may have students 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.
Seizures can be controlled with medication and even if they aren’t, a seizure is only temporary and they come and go. Most people with epilepsy can carry on as normal in between seizures.
For many children, epilepsy is easily controlled with medication and they can do what all the other kids can do, and perform as well at school. For others, it can be more challenging. Although overall intellectual ability in children with epilepsy is comparable to the general childhood population they are at greater risk for learning problems and academic under achievement.
This depends on many factors including:
- How often seizures happen
- The type and severity of seizures
- Medication unwanted side effects
- Difficulties with learning
- Social and psychological adjustment
- The level of understanding of epilepsy by school staff
- The attitudes and epilepsy knowledge of other students and peers
Certain circumstances or situations increase the risk of a seizure occurring. These are often called seizure ‘triggers’. There are some common triggers, and some individual triggers and it’s a good idea to be aware of the seizure triggers for any students with epilepsy.
The most common reported seizure triggers include:
- Missing medication
- Stress – physical or emotional
- Lack of sleep, overtiredness
- Hormonal changes (females)
- Growth spurts in children or youth
- Becoming overheated
- Flashing lights and geometric patterns
If you have any students with epilepsy, ask about their particular seizure triggers.
Parents or the child should also inform the teacher about their individual triggers. The school should be informed if at any time the student is at increased risk of seizures – for instance changes in medication.
Memory, attention 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:
Side effects of medications
Sometimes medications may affect the student’s learning ability. It is often related to the dose of the medication and side effects may be lessened by reducing the medication dose (unless there is a risk of losing seizure control, then a new medication may need to be considered).
There are many different antiepileptic medications, with a variety of unwanted side effects. Some people experience more side effects than others. Some may have few side effects at all.
Some common reported side effects of antiepileptic medications include:
- Drowsiness, dizziness
- Tiredness and fatigue
- Headaches, blurred or double vision
- Poor concentration, or “fogginess” and attention problems
- Memory difficulties
- Poor balance and coordination
- Nausea, vomiting, weight gain or loss
- Hyperactivity, sleep difficulties
- Mood changes
If the student seems excessively sleepy or lacking in energy during the day, or complaining of any above symptoms, parents should be informed.
Seizures are brief, but the after effects can be lasting. These can 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. Seizures during sleep are going to affect sleep patterns for the rest of the night, and most likely cause daytime sleepiness and difficulty learning.
Many people with epilepsy also have “subclinical” or epileptiform activity in the brain in-between seizures. This is abnormal electrical activity, but not enough to generate a seizure, but it can also have effects that contribute to learning difficulties.
If seizures are caused by some another condition of the brain, or are coming from the area of the brain associated with cognition functions, they may change the way the brain handles information.
Epilepsy is generally a long term condition and may have similar effects on children as would other chronic diseases.
Seizures are unpredictable. Many people with epilepsy report that one of the most frightening thing about seizures is not knowing when they are going to happen. Even a child whose epilepsy is controlled with medication may still be anxious about having a seizure, especially at school. Therefore, it may be even more difficult to adapt to epilepsy than to other more predictable chronic conditions.
A child’s perception of their epilepsy can be affected by others reactions to it.
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’. Concern for the child’s safety may lead to restriction of normal school activities, which most children take for granted. This increases the child’s sense of social isolation.
Independence and social acceptance are important – so it is important to let the student participate in the usual activities at school, as much as possible – balancing safety and common sense versus risk.
Concerns and limitations should be discussed with the student and family and put in the seizure management plan.
Negative reactions from peers, other students and school staff can negatively influence the person with epilepsy.
Suggested teaching strategies
These will depend on the level of difficulties the student is having.
- 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.
- 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.
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.
A review of the processes used in solving a complex task can be very helpful for the student.
Leads to the consolidation of skills learnt in mastering a task. Unconsolidated skills are not likely to be generalised to other learning tasks.
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. Even ask the student to contribute if they feel comfortable. This can effectively illustrate that epilepsy is both real and manageable, and not to be feared or judged.
If an unexpected seizure happens in front of the class or friends, then the teacher may need to have a discussion or debrief with the students. Witnessing a seizure can be very upsetting but it is also distressing for the student with epilepsy to know they have had a seizure in front of everyone, so it may need to be handled with care.
If the school are aware the student has epilepsy, then this scenario might need to be discussed with developing a management plan.
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. It is also good to discuss the seizure type(s) the student has and whether they are likely to occur at school. This is important so you can recognise a seizure and know what to do.
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. It doesn’t necessarily have to involve telling the class the student has epilepsy.
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
- Epilepsy medications may impact on concentration, attention and memory function
- How the student’s seizure looks, may have an effect on their feelings about their epilepsy. Some types of seizures may be frightening to observe, others can be quite unusual and not recognised as a seizure
- Appropriate understanding and reactions from class mates and teachers can have a 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 less than 2 minutes although there may be a short period of confusion, usually less than 5 minutes, after the seizure
- Occasionally confusion after a seizure can be quite lengthy, but usually only lasts a few minutes
- 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 with epilepsy usually have little or no memory of their seizure
Seizure Management Plans
A seizure management plan (SMP) is a document providing essential information to anyone who may be in a position to assist someone having a seizure – whether that be family, friends, carers, teachers, colleagues or other involved professionals. They are a practical tool that can be used by all caregivers in all settings to manage seizures and seizure emergencies, treatments and safety. School aged children have seizure management plans in place.
Every child’s experience of epilepsy is different and therefore supporting them at school will require an individualised approach
SMPS, can be developed online at Seizure Management Plans
For further information, to arrange an education session or develop a seizure management plan please call:
1300 37 45 37 or email [email protected]
For more information:
EAA factsheet – Seizure Smart – Epilepsy and Education
Classroom problems and solutions – Epilepsy