Epilepsy & Seizures

What is a seizure?

The brain is made up of millions of nerve cells called neurons, which generate electrical impulses and messages to produce thoughts, feelings and control body functions.

Consider a seizure like a short circuit. It happens when there are sudden discharges of abnormal electrical activity which fire rapidly and excessively, disrupting the normal communication between brain cells and the body. The seizure is the body's response to this.

There are many different types of seizures and they vary greatly. What a seizure looks like will depend on where its location is in the brain. Seizures can cause changes in:

• Sensation and feeling

• Awareness and consciousness

• Behaviour or

• Movement

Most seizures are over in less than two minutes. Some seizures are severe and some are very subtle.

Some seizures can be a "one-off" event and not diagnosed as epilepsy.

For more information about seizures click here.

What can trigger seizures in people with epilepsy?

Some people may find that there are patterns to their seizures, or the seizures are more likely to happen in certain circumstances. Factors that can provoke a seizure are called seizure triggers.

Knowing, managing or avoiding seizure triggers is important for people with epilepsy because this can reduce the risk of having a seizure. Some commonly reported seizure triggers include:

• Missed medication

• Sleep deprivation

• Stress

• Illness and fever, including vomiting and diarrhea, colds and flu or viral illnesses

• Hormonal influences

• Alcohol and drugs especially with bingeing and stimulant drugs

• Heat

• Metaboic changes wth illness or dehydration. Examples include renal failure, low blood sugars

• Flashing lights or geometric patterns - this is a specific typoe of epilepsy known as photosensitive epilepsy and only about 5% of people with epilepsy have these seizures

A good way to establish what your seizure triggers may be is to keep a diary of your seizures and what is happening around the times of the seizures. An example of a seizure diary can be found here.

What is epilepsy?

Epilepsy is a common disease of the brain that cause seizures. Someone with epilepsy has a tendency to have recurrent seizures.

Approximately 1 in 30 Australians will experience epilepsy at some point in their lives and over 250,000 Australians currently live with epilepsy.

Epilepsy can start at any age although it is more likely to be diagnosed in childhood or senior years.

There are many different types of epilepsies and people's experiences differ greatly. Some types of epilepsy are age-related and last for a limited time while for others, epilepsy is a life-long condition.

Seizures are mostly managed with medication. Approximately two thirds of people with epilepsy become seizure free with medication. This means that 1 in 3 people with epilepsy will still continue to have seizures. 

What causes epilepsy?

Epilepsy does not discriminate. Anyone can get epilepsy - any age, gender, race or social circumstance. There are many different causes of epilepsy, but not everyone will find out the cause of their epilepsy. Many people with epilepsy have no known cause of their seizures.

Known causes include:

• Head injury

• Stroke

• Lack of oxygen to brain (such as drowning, drug overdose, cardiac arrest or birth difficulties)

• Brain tumours

• Brain abnormalities (present at birth)

• Genetic factors are involved with some types of epilepsy

• Drug and alcohol use can lead to brain damage and seizures. Sometimes this can be due to head injuries, accidents or brain damage and health issues caused by the substances

• Alzheimer’s Disease

For more information about epilepsy click here.

Getting diagnosed

If you have had a seizure it is likely you will be referred for a test called an EEG (electroencephalogram) and possibly a neurologist appointment. Sometimes you may be referred to other specialists or appointments to out-rule other medical conditions that can cause seizures.

The neurologist appointment

An important part of epilepsy diagnosis is an eyewitness account – a good description of the seizure(s) and your symptoms. If possible, take someone who has seen the seizure(s) or events when visiting the doctor, so they can also be asked questions.

A video recording can sometimes be helpful, other times it is not because it is very important to capture the beginning of a seizure and this rarely happens, usually only by chance.

Try to find out if anyone in the family has ever had seizures before.

Questions to ask your doctor click here.

Tests for epilepsy

What tests are ordered for you depend on the circumstances of your seizure(s). Not everyone will need every test.

Sometimes, all or many tests for epilepsy can return normal. This does not mean you didn’t have a seizure or don’t have epilepsy. These tests are done over a short period, and because seizures are short-lived, the tests can be normal in-between seizures. Tests you may have to diagnose epilepsy include:

• EEG – This is a non-invasive test used to look at the electrical activity of the brain

• Neuroimaging – These are brain scans and include MRI, SPECT, PET and CT scans. You are most likely to have an MRI or CT

• Neuropsychological tests – Are a set of tasks to assess how your brain is working in a number of areas and if there are any parts that aren’t working as they should

For more information about diagnosis click here.

For more information about episodes that could be misdiagnosed or confused with seizures click here.

Treatments for epilepsy

Medication

Epilepsy is initially managed with medication. Up to 70% of people with epilepsy will gain seizure control with antiepileptic medication treatment. For people who don’t gain seizure control, depending on the type of epilepsy, there are other treatment options. These include:

Surgery

Epilepsy surgery can offer some a chance to be seizure free or considerably reduce the number of seizures. Only certain types of epilepsy are suitable for this treatment.

Vagus Nerve Stimulation (VNS)

VNS uses a pacemaker-like device to periodically stimulate the vagus nerve in the neck to reduce the frequency and intensity of seizures. Only a small percentage become seizure free but the response to this treatment improves over time. Most people report seizures become less severe, they have improved alertness and quality of life.

Deep Brain Stimulation (DBS)

DBS uses a pacemaker-like device connected to electrodes implanted in the brain. This sends a pulse stimulus from a pacemaker-like device implanted in the chest to help manage seizures. For many people, deep brain stimulation doesn’t completely stop the seizures, but it can significantly reduce them. Again, response to this treatment improves over time.

Dietary Therapies – Ketogenic and Modified Atkins Diet

The ketogenic diet was developed for controlling seizures, particularly in children with poorly controlled epilepsy. The modified Atkins diet is a less restrictive diet that also seems to help with seizure control in adults and children.

What can I do to help?

You can make changes in your life to take control of your health, help manage seizures and the impact they can have. By simply:

• Learning more about your type of epilepsy. This can really help you understand about your seizures and how to manage them. It can also assist communication with your doctor and knowing what questions to ask

• Taking your medications as prescribed and be familiar with their side effects. It is important to take the medication regularly to keep constant medication blood levels, and it is also valuable for you to understand your medication side effects because sometimes the effects of seizures and medication side effects can be confused

• Checking before taking other medications or supplements. Many other substances can interact or mix poorly with your medication

• Understanding your seizure patterns and what can trigger your seizures. By having this knowledge, you can try to avoid or manage your triggers to lessen the likelihood of seizures

• Managing stress and mental health. Stress and poor mental health can increase the risk of seizures. Seizures and mental health can also worsen stress and mental health

• Avoid large amounts of caffeine, alcohol or drugs as these substances can interact with anti-epileptic medication and can impact on seizures. Caffeine and alcohol can be taken in moderation but you should avoid other drugs or discuss their use with your doctor to understand the impact they may have on your seizures

• Sticking to a healthy diet and regular exercise can have positive effects on seizures and physical and mental health

Take action:

Go to the EAA website for more information

Resources and online tools

Or do an online course

Keep a seizure diary

Call the Epilepsy Nurse Line on 1300 37 45 37, to discuss your epilepsy

Epilepsy, like other long-term conditions such as asthma or diabetes comes with certain risks which include accidents, injuries and occasionally death. Another condition which affects people with epilepsy is SUDEP. Sudden Unexpected Death in Epilepsy (SUDEP) is an uncommon condition where a person with epilepsy dies suddenly and prematurely, and no reason for death can be found.

Anyone having seizures, whether one or two a year or several a week, is considered to have ‘active epilepsy’. Having active seizures can slightly raise the risk of seizure or epilepsy related death. The risk is not equal for all people with epilepsy. Some people will have a very low risk due to their seizure type and how often they are happening, whilst others may be considered to have a higher risk.

There are also certain types of seizures which may increase your risk. These are:

• Tonic clonic seizures

        These seizures are what most people picture when they think of a seizure. It is when a person loses consciousness, becomes stiff (falls if standing) and then the muscles begin to jerk rhythmically. They mostly last less than 2 minutes. The risk of seizure related injury or death is highest in people who have these seizures.

• Nocturnal seizures

        Nocturnal seizures are seizures that happen during sleep. They are a risk factor for seizure related death.

• Prolonged or cluster seizures, or status epilepticus

        These situations are considered seizure emergencies and early treatment is vital to stop them.

When there is a risk of these seizure types, a seizure management plan or seizure emergency plan is usually prepared.

Emergency medication can be given outside the hospital setting to stop these seizures.

Knowing about risks means you can take action against them

The best steps you can take to reduce seizure related risks, injury or death are:

1. Get the best seizure control possiblea.

    a.Take your medications as prescribed

    b. Speak to your doctor if you are not happy with your current medication or side effects

    c. Have regular reviews with your doctor

    d. Ask your doctor to go through the SUDEP and Seizure safety Checklist with you

2. Be involved in managing your epilepsy

    a. Avoid any known seizure triggers for you

    b. Avoid drinking too much alcohol

    c. Know when your seizures are most likely to occur

    d. Get enough sleep

    e. Be healthy

    f. Manage stress

3. Make sure those close to you know what to do in case of a seizure

For more information about epilepsy and risk click here.

Your doctor can go through the SUDEP and Seizure Safety Checklist with you. For more information click here.

Seizures, medications, and even other health conditions bear potential risks for many people. So, if you have seizures it’s worth thinking about risks that may potentially arise for you. Learning to reduce risks is a critical part of living safely with seizures.

Just imagine, one minute you are carrying out your usual daily activities, and then next, you are temporarily unaware of what is happening around you. It’s hard to imagine, but this is what many people with epilepsy have to live with. Depending on what you are doing or where you are, this loss of awareness can pose significant risks to safety, especially if falls are also associated with seizures.

People have different experiences

• Some people have enough warning that their seizures are going to happen to get themselves to a safe place

• Some people have identifiable seizure patterns for example, seizures only happen first thing in the morning. This means they are more predictable and can give more flexibility to work around safety issues

• Some women can have hormonal related seizures, so take more precautions at this time

Click here for a factsheet about safety information and ideas about how to safeguard your home.

Click here to learn more about safety products, alarms and monitors that are currently on the market.

Not everyone has to follow strict safety measures, and it is all relative to your situation. Do not put restrictions on yourself that reduces your quality of life or the things you enjoy.

First aid

It is important that people close to you understand how to manage your seizures.

Seizures mostly run their own course but there are a few things that can help.

Animated Seizure First-Aid video

Animated Seizure First-Aid video for Children

Follow this link to download and print first aid for seizures posters and to watch more video animations about seizure first aid.

Is epilepsy common?

An estimated 65 million people worldwide have epilepsy. In Australia, over 12,000 people a year are diagnosed with epilepsy. Approximately 1 in 30 people will experience epilepsy at some point in their lives and over 250,000 Australians are currently living with epilepsy.

What does a seizure look like?

What you may see will depend on the seizure type. Some signs of seizures include confusion, loss of awareness, staring, changes in behaviour, changes in muscle tone, muscle twitches or jerking movements, repetitive behaviours, unsteadiness, and convulsions.

Different seizure types have a wide array of symptoms including hallucinations (visual, taste, smell), difficulties with speech, abnormal sensations such as numbness or tingling, nausea or butterflies in the stomach. Although seizures vary greatly from person to person, usually the features are consistent and predictable for each individual. Seizures can be very brief, a few seconds or may last a few minutes. Most seizures are over in less than two minutes.

After most seizures the person will be temporarily confused and tired.

If I have a seizure does that mean I have epilepsy?

Having a seizure doesn't necessarily mean you have epilepsy. Many seizures can be a “once-off” and only happen in specific circumstances such as fever, injury, anaesthesia or illness. These seizures do not usually recur and are not diagnosed as epilepsy. They can include febrile convulsions (seizure in an infant or child with a fever), concussive convulsions (a seizure immediately following a concussion or head knock), convulsive syncope (jerky movements associated with fainting), and seizures with brain infections such as meningitis and encephalitis.

Is epilepsy life-long?

Some types of epilepsy last for a limited time or are 'age-related' and the person eventually stops having seizures. For others, epilepsy is a life-long condition. However more than two thirds of people with epilepsy become seizure free with medication.

Pregnancy raises special issues for women with epilepsy. While most women with epilepsy deliver healthy babies, it is important to have an awareness of any possible risks so you and your doctor can work together to manage and minimise those risks.

Planning ahead

For women with epilepsy it is especially important to pre-plan pregnancy to ensure the best outcome for you and your baby. There are many things you can do to plan for a healthy pregnancy such as:

• Discuss any necessary changes with your neurologist;

• Seeking an obstetrician you would like to see;

• Making healthy lifestyle choices and understand any lifestyle risk factors that need to be addressed such as diet, drugs, alcohol or cigarettes and travel to areas with known diseases that may increase pregnancy risks;

• Increasing your intake of folate rich foods and taking a recommended supplement at least 3 months pre-pregnancy and for the first trimester of pregnancy.

Your neurologist will discuss your treatment plan and ideally aim to use one medication at the lowest possible dose to achieve the best seizure control for you, and with the most favourable profile for women during pregnancy and breastfeeding.

The neurologist may also discuss generic counselling if there is a strong history of epilepsy, other health conditions or major congential malformations through your family.

What if I have an unplanned pregnancy?

Women of childbearing age are always in a position of potential pregnancy if they are in a sexual relationship. It may help to bring up the possibility with your treating doctor. A simple question to ask may be as follows:

"Doctor, if I were to become pregnant, what changes in my medication would be necessary?"

This may make your doctor think about changes in your current medication, especially if you are taking sodium valproate - or consider explanations about lamotrigine dose adjustments in pregnancy.

The most important advice for any women with epilepsy taking antiseizure medications, who find themselves with an unexpected pregnancy, is to not panic and do not stop taking your medications. Contact your doctor to discuss your options.

Do seizures change during pregnancy?

Many changes that happen during pregnancy can affect medication absorption or clearance from the body, cause sleep disturbances, as well as add new stressors which can change seizure frequency during pregnancy.

• For most pregnant women with epilepsy, seizures remain the same;

• For some, seizures become less frequent;

• Women with catamenial epilepsy may have improved seizure control during pregnancy;

• For others, particularly women whose sleep or medications are affected by the pregnancy may notice an increase in seizures;

• For someone who hasn’t had a seizure for several months before conception, there is less risk of having a seizure during pregnancy.

There are some medications that may deplete during pregnancy. Your doctor may need to monitor and increase these medications regardless of whether seizures are occurring or not.

Women with poorly controlled epilepsy should be aware that an increase in medication dose may be needed during pregnancy.

How can seizures affect pregnancy or the baby?

The type of seizures you usually experience may influence the effect on the baby. Tonic clonic seizures during pregnancy can cause:

• A brief reduction in oxygen supply to the foetus; focal or non-convulsive seizures have no known effect on the foetus;

• A brief slowing of the unborn child’s heart rate;

• Injury to the foetus if the mother has a severe fall or serious injury.

If a seizure happens during pregnancy, report it to your neurologist. They may need to check your medication levels or make adjustments to your medication. Your obstetrician may want to check baby if there are any concerns.

The Australian Pregnancy Register

The Australian Pregnancy Register for Women on Antiseizure Medication (APR) is an ongoing nationwide study enrolling women who are currently pregnant or who have given birth recently (infants up to 12 months of age).

The APR has identified specific antiseizure medications (or combination of) that lead to higher than expected birth defects. They are now seeing a change in prescribing patterns because of their findings.

For more information Register Here and a research nurse from the Australian Pregnancy Register will contact you.

What about medication?

From previous research it is known that women who are taking an antiseizure medication may have a slightly higher risk (4-6%) of having babies with birth defects than the general population (2-3%), which means there is a 94% chance of your baby not having a birth defect.¹ This risk varies depending on the medication, number and dose of your medication(s).

Note about sodium valproate²

Babies born from women taking sodium valproate during pregnancy, especially at higher doses, develop a higher rate of birth defects, and a high rate of problems with baby’s development. Epilim is not prescribed for girls or women of childbearing age unless other anti-seizure medications are not effective for their seizures or cause intolerable side effects.

Someone who has been seizure free for over two years, may consider discussing weaning off medication with the neurologist. This will depend on your epilepsy type and the risk of having a seizure without medication.

For most women, it’s best to continue treatment during pregnancy. To reduce the risks for you and your baby, your doctor will prescribe the safest medication and dose that’s effective for your type of seizures. Your blood levels may be monitored throughout your pregnancy.³

A recent review of the antiseizure medication and dangers to the unborn child has advised doctors to:

1. Avoid sodium valproate if an equally effective antiseizure medication is available
2. Aim to use one medication only (monotherapy)
3. Take the lowest effective dose whenever possible, avoid sodium valproate doses of 650 mg or above, daily (if possible)⁴
4. Avoid withdrawal or changes of antiseizure medications if you are already pregnant

What about labour and delivery?

Most pregnant women with epilepsy deliver without complications.

If someone has had frequent seizures during pregnancy, especially during the third trimester, there is an increased risk of having a seizure during delivery. More frequent appointments will be needed with both the obstetrician and neurologist, and the safest delivery method will need to be discussed.

Seizures don’t commonly occur during labour but if a seizure does happen, it may be stopped with intravenous medication.⁵ If the seizure is lengthy, the obstetrician may choose to deliver the baby by caesarean.

Choice of methods of pain relief during labour and delivery should be no different to other pregnant women.

If the antiseizure medication dose is changed for pregnancy, the dose is most likely to be returned to pre-pregnancy levels shortly after delivery to continue keeping seizures under control and the medication at effective levels.

 Is breastfeeding possible?

Women with epilepsy can safely choose to breastfeed and taking antiseizure medications while breastfeeding does not pose significant additional risks.⁶

Antiseizure medications are excreted in breast milk, but for most, only in low to very low concentrations, so there is no reason why you should not breast feed. Breastfeeding is associated with positive health benefits for baby and mother, but if you experience breast feeding challenges, sleep deprivation and exhaustion it may become problematic.

The neurologist, obstetrician or midwife will explain more detail in relation to breastfeeding and antiseizure medications.

MotherSafe is a good resource for this information http://www.mothersafe.org.au/

Summary

Before trying to conceive, talk to your neurologist, GP and/or an obstetrician. They will want to monitor you closely throughout.

Fortunately, most women with epilepsy give birth to normal, healthy babies. With proper planning and precautions the chances of having a healthy child is 94% or higher. No pregnancy is completely risk free however working closely with your doctor you can help reduce many risks.

References

1 Meador, K. J., & Loring, D. W. (2016). Developmental effects of antiseizure drugs and the need for improved regulations. Neurology, 86(3), 297–306. https://doi.org/10.1212/WNL.0000000000002119

2 Tomson, T., & Battino, D. (2009). Teratogenic effects of antiseizure medications. Neurologic clinics, 27(4), 993–1002. https://doi.org/10.1016/j.ncl.2009.06.006

3 Eadie M. J. (2014). Treating epilepsy in pregnant women. Expert opinion on pharmacotherapy, 15(6), 841–850. https://doi.org/10.1517/14656566.2014.896902

4 Tomson, T., Battino, D., Bonizzoni, E., Craig, J., Lindhout, D., Perucca, E., Sabers, A., Thomas, S. V., Vajda, F., & EURAP Study Group (2018). Comparative risk of major congenital malformations with eight different antiepileptic drugs: a prospective cohort study of the EURAP registry. The Lancet. Neurology, 17(6), 530–538. https://doi.org/10.1016/S1474-4422(18)30107-8

5 Mayo Clinic. (Oct 2020) Epilepsy and pregnancy: What you need to know. Accessed Dec 2020. https://www.mayoclinic.org/healthy-lifestyle/pregnancy-week-by-week/in-depth/pregnancy/art-20048417

6 Veiby, G., Bjørk, M., Engelsen, B. A., & Gilhus, N. E. (2015). Epilepsy and recommendations for breastfeeding. Seizure, 28, 57–65. https://doi.org/10.1016/j.seizure.2015.02.013

Special thanks to Professor Frank Vajda, Associate Professor Piero Perucca, Professor Terry O’Brien, and APR Research Coordinators Alison Hitchcock and Janet Graham for their contribution and advice.

A key priority for Epilepsy Action Australia is delivering the very best education and training nationwide to people with epilepsy, their families, caregivers and the wider network of people involved. We have an extensive number of online tools and resources to deliver flexible, user-friendly education and training options.

Find out more about our National Epilepsy Education.