Managing Epilepsy

Drug Resistant Epilepsy

In Australia, approximately 14,000 people are diagnosed with epilepsy each year and around 250,000 people are currently living with epilepsy. What many people don’t know is that about 1 in 3 people with epilepsy continue to have seizures despite treatment. This is called medication or drug-resistant epilepsy (DRE).

What is drug resistant epilepsy?

DRE is when seizures are not fully controlled after trying two appropriately prescribed anti-seizure medications and used for an amount of time as determined by the specialist.

Living with drug-resistant epilepsy can be a significant burden and can greatly impact quality of life.

The effects of drug resistant epilepsy

It may not be drug resistant. If your seizures are continuing despite taking anti-seizure medication, it does not always mean you have drug resistant epilepsy. Sometimes there are other reasons for poor seizure control.

Medication is the first step

When you are diagnosed with epilepsy, medication is the first treatment. The aim of anti-seizure medication is to get the best seizure control with the lowest dose and the least amount of unwanted side effects. The neurologist will choose a medication that is appropriate for your type of epilepsy.

When seizures don’t respond to medication, what’s next?

People with drug resistant epilepsy often experience:

• Frequent medication changes,
• Taking two or more medications at the same time,
• Unwanted medication side-effects,
• More frequent visits to the doctor, emergency department or hospital

Studies show that adding more medication is not likely to control this kind of epilepsy.

What to do if your seizures don’t respond to medication

Firstly, if you haven’t already done so, get a referral to a specialist epilepsy centre

There you will see an epilepsy specialist who may be able to:

• Suggest a more appropriate medication or trial a newer epilepsy medication
• Investigate if epilepsy surgery is a possible option. Some epilepsy types are suitable for surgery to help control or stop seizures
• Find out if vagal nerve therapy is an option. Vagus nerve stimulation (VNS) is a pacemaker-like device implanted in the chest to manage seizures that do not respond to medication or when surgery is not possible
• Consider dietary therapies. Examples of diets currently being used are the ketogenic diet, Modified Atkins Diet, or low glycemic diet.
• Discuss any lifestyle changes that may help.

There is no single treatment that works for everyone. Individuals can respond differently to medications and various treatment strategies.

If you have trouble with seizure control, seeing an epilepsy specialist is a good step to finding out what other treatment options may be suitable for your type of epilepsy.

Medication alone isn’t the answer for 1 in 3 people with epilepsy.

Other treatment options after medication failure

Epilepsy Surgery

Epilepsy surgery offers a chance to be seizure-free or have fewer seizures. Surgery may also allow antiseizure medications to be reduced – although ongoing medication is often necessary. This will depend on your circumstances. Only a small number of people are suitable for epilepsy surgery.

Listen here to neurosurgeon Dr Erica Jacobsen answer questions about epilepsy surgery.

Speak with your doctor about surgery as an option for you.

Vagus Nerve Stimulation (VNS Therapy™)

VNS Therapy™ is used for children and adults with focal and generalised seizures with DRE. It is a form of neuromodulation that offers another way to manage seizures and has been proven to be safe and effective.

The VNS Therapy™ System includes a pulse generator that is implanted under the skin and connected via leads to the left vagus nerve in the neck. The generator sends mild pulses through the vagus nerve to the brain.

VNS Therapy™ can lead to fewer and shorter seizures and better recovery after seizures. It can also lead to improvement in alertness, mood, memory, energy levels and general quality of life.

For more information go to What is VNS Therapy™

Dietary Therapies

Dietary therapies have long been used to control seizures in people with severe epilepsies and DRE. The dietary therapies used today are all low in carbohydrates and high in fat.

The classic ketogenic diet was the original epilepsy diet developed for children however it is also used in adults. The modified Atkins diet is a less restrictive diet that helps with seizure control in adults and children. Other diets include the Low Glycemic Index Treatment & Medium-Chain Triglyceride diet

Always speak to your doctor about any treatment changes you are considering & do not start any dietary treatment for epilepsy without advice. These diets are to be closely monitored & you need medical supervision.

DRE poses many challenges and despite the introduction of many new antiseizure medications over the last 30 years, the number of people with DRE has not lessened.

Poor seizure control has been associated with, increased risk of injury and death, difficulties with education and gaining employment, social isolation, anxiety and depression and consequently poor quality of life.

It is important to explore other approaches to treatment if antiseizure medication does not work. Speak to your specialist about this.

Epilepsy Clinics

Fortunately for Australians, there are comprehensive epilepsy centres in nearly every state, allowing for people with drug-resistant epilepsy to be referred to optimise their treatment plan.

It is recommended that Australians with drug-resistant epilepsy should be referred to a comprehensive epilepsy centre to gain a clearer diagnosis, review of their epilepsy and targeted management as soon as possible to improve their seizure control.

If you continue to have seizures, ask for a referral to a comprehensive epilepsy centre for review of your epilepsy as soon as possible.

To find an epilepsy centre in your state, search your state, or contact us on 1300 37 45 37 or email epilepsy@epilepsy.org.au

For more information:

Drug Resistant Epilepsy Factsheet

Listen to epilepsy experts answer your questions about drug resistant epilepsy

• Professor Terry O’Brien
• Professor Patrick Kwan

Funded by LivaNova Australia. Many thanks for their contribution and advice with this material.

Treatment

The first line of treatment for epilepsy in most cases is medication. Approximately 2 in 3 people with epilepsy can get seizure control with antiseizure medication.

For people who do not gain seizure control despite trying different medications, there are other treatment options available.

Medical Management

With regular medication and a sensible lifestyle there is a 70% chance of gaining seizure control.

Surgery for Epilepsy

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

Vagus Nerve Stimulation (VNS) Therapy™

VNS uses a pacemaker-like device to stimulate the vagus nerve in the neck to reduce the frequency and intensity of seizures.

Dietary Therapies – Ketogenic and Modified Atkins Diet

Dietary therapies for epilepsy can be used in adults and children, but have been historically used primarily in children. These are are strict, medically supervised diets and offer positive results for some specific epilepsy syndromes.

Deep Brain Stimulation (DBS)

DBS uses a pacemaker-like device connected to electrodes implanted in the brain. This sends a pulse stimulus to help manage seizures.

Complementary Therapies

Complementary therapies can help improve health and wellbeing. This can help with seizure control. Lifestyle changes can also help with seizure control.

Medical Cannabis

Diagnosis

How do you know you have epilepsy and how can it be diagnosed?

Epilepsy diagnosis is not always straightforward because seizures tend to happen randomly and are only short lived. In-between, tests may be normal.

Signs and symptoms of seizures may include:

• Temporary confusion
• Loss of time
• A staring spell
• Jerking movements of the body, arms and legs
• Loss of consciousness or awareness
• Not responding appropriately
• Sudden feelings of fear, anxiety or deja vu
• Tiredness afterwards

Symptoms vary depending on the type of seizure, but mostly, people tend to have the same type of seizure, so the symptoms will be similar from episode to episode.

Tests for epilepsy

If you have had a seizure and been to the doctor or accident and emergency, it is most likely you will have a referral for an EEG and a neurologist appointment. Sometimes you may be referred to other specialists or appointments to rule out other medical conditions that can mimic or cause seizures.

History

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

Many people try and capture a video of a seizure. Sometimes this can be helpful.

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

The doctor may do routine physical and neurological examination which may include blood tests. If epilepsy is suspected, there are some tests that may help to diagnose the condition and possibly establish a cause.

This is a brief guide to the tests that help diagnose epilepsy. Not everyone will need every test. If you are unsure why your doctor has suggested certain tests and not others, then it is best to ask.

Sometimes, all or many tests for epilepsy can return normal.

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

Procedures to help diagnose epilepsy:

• 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
• Neuropsychological tests – Look at how your brain is working and how the epilepsy affects your day to day functioning

EEG (Electroencephalogram)

Routine EEG

An electroencephalogram (EEG) is a test done to look at the electrical activity of the brain – that is, how the brain is functioning. Brain cells communicate by producing tiny electrical impulses and seizures are a result of abnormal electrical activity, so it is logical to have an EEG.

If a person is thought to be having seizures, they will be referred to have an electroencephalogram (EEG). It is a simple, painless test and involves no needles or injections.

An example EEG

During the test, small discs called electrodes are placed on the scalp with a cap, glue or paste. The EEG machine then records the electrical activity of the brain. This usually takes less than an hour. It is important to be relaxed because movement can affect results.

Most of the test is done with the eyes closed, and sometimes you will be asked to open them briefly. It is routine to be asked to breathe deeply (hyperventilate) for a 2-3 minutes and later have a flickering strobe light, flickering at various speeds. These forms of stimulus can provoke EEG changes in some forms of epilepsy.

It is not uncommon for people with epilepsy to have a normal EEG in-between seizures.

An EEG recorded during sleep may also give extra information. This may sometimes be needed if your first EEG returns normal.

Other types of EEG recordings

EEG video monitoring / VEEG

This is a method of recording the EEG over a few days, which records both EEG and video simultaneously.

VEEG aims to record the seizures (by video) and the brains electrical activity (EEG) at the same time. This combined information is a valuable tool for diagnosing epilepsy. The advantage over routine EEG is the doctor is able to study exactly what happens during any episodes on the video and match this up with the EEG recording.

This monitoring may be needed for a few hours or several days, depending on the frequency of symptoms and seizures.

This monitoring is also used in the lead-up to epilepsy surgery for suitable candidates.

Sleep deprived EEG / video EEG

Some people may be asked to have a sleep-deprived EEG or video EEG to record sleep which can increase the chance of detecting abnormal brain activity. If your routine EEG has been normal or has shown features which are not clear enough to make a clear diagnosis, the doctor may ask for a sleep EEG.

Sometimes abnormalities associated with epilepsy can become more apparent in EEG during sleep. The EEG changes a lot during sleep and sometimes these changes can trigger abnormal EEG changes seen with epilepsy.

For this test you will be asked to have less sleep the night before.  It is not a disaster if you do not sleep during the test, because even if you just become drowsy, there is still the chance of detecting abnormal activity.

The test can be performed in the same way as for a routine EEG or video telemetry, depending on the unit, but the person is asked to sleep during the test.

EEG ambulatory monitoring

Sometimes abnormalities, events, or seizures are not picked up on the above tests. The hospital setting is far from normal, and often you are not under the everyday stressors that can trigger events.

If the doctor would like something more, or wants to record a seizure or event, an ambulatory recording may be needed. This can be done at home.

Ambulatory EEG allows EEG to be recorded over a much longer period – for several days if need be in a home setting.  A compact portable EEG recorder may be worn while the person carries out usual daytime activities, and also during sleep. The person will also be asked to keep a diary of symptoms and there is usually a button you can press to mark an event on the device. Some systems also have a video camera you can move from room to room.

Ambulatory EEG increases the chances of finding abnormalities or recording an event, which may allow doctors to decide whether the events are seizures or not. The recording may also give a clear picture of any patterns and how often they are occurring.

It is a very useful and cost effective tool to help in the diagnosis of epilepsy or other events.

For more information about ambulatory EEG click here

Neuroimaging – MRI, CT, SPECT and PET scans

When used for epilepsy, neuroimaging is images (pictures) taken of the brain, or a brain scan. It can be done to look at the structure or function of the brain. These scans may further help when diagnosing and treating epilepsy.

Pictures are taken of the brain that may show changes in brain tissue and how the brain is working. Changes may show for example:

• the presence of scar tissue from an injury
• a lesion or tumour
• degeneration or shrinking of brain tissue
• changes in blood flow in the brain
• changes to how some areas are functioning

Common brain imaging tests include:

MRI Scanning

Functional MRI (fMRI).

A functional MRI measures the changes in blood flow that happens when specific parts of the brain are working. Doctors may use an fMRI before surgery to identify the exact locations of critical functions, such as speech and movement, so that surgeons can avoid injuring those places while operating. Click here to see more.

SPECT Scanning

SPECT uses a computer to generate pictures of the blood flow within the brain.  Blood flow in the area of the brain causing seizures should be lower in-between seizures and higher during a seizure. This test is often used as part of the workup for surgery for epilepsy. For more information on SPECT click here 

PET Scanning

CT Scan

Computed Tomography (CT) is a procedure that uses x-rays to take pictures of the brain. It is not commonly done when trying to diagnose epilepsy. CT scans can show abnormalities in the brain that might be causing seizures, such as tumours, bleeding, and cysts. For more information on CT scans Click Here

Other Tests

Neuropsychological tests

Although these tests don’t diagnose epilepsy, they assess a range of learning domains including thinking, memory and speech skills. This gives your doctor an overall picture of how well your brain works and if there are any areas that aren’t working well, which may be the area the seizures are being generated.

It can also help find out how the epilepsy is affecting your ability to reason, concentrate, solve problems, or remember.

Most of the tests done include answering questions or performing tasks. You may do some on a computer, using pencil and paper, or using other objects. The tests are meant to test your limits, so don’t be disheartened if they seem hard.

For more information about neuropsychological tests click here

Just diagnosed?

For further information go to:

Dr Dan McLaughlin Video: Brain Imaging

Factsheet – Diagnosing Epilepsy

Epilepsy Care Pathway

FLOWCHART EXAMPLE: 

For more information go to: Paediatric Epilepsy Network

Epilepsy Care Pathway after diagnosis eg:

Events that aren’t epilepsy

Seizures usually involve temporary changes in behaviour and movement. They are mostly unpredictable. This means the doctor will rarely see their patient’s seizure and sometimes epilepsy can be difficult to diagnose.

There are also a number of common events that can mimic or be confused with seizures, and vice versa.

Here we discuss some common medical events that can be mistaken for seizures.

Fainting

This is a sudden and short-lived loss of consciousness due to a sudden decrease in blood flow to the brain.

Fainting is most commonly confused with seizures when the person has brief muscle jerks, twitching or convulsive movements associated with the faint. This is because of the lack of blood supply to the brain at the time, and can happen in over 10% of people who faint.

Fainting is common – up to 6% of the general population have had a faint. Fainting has many possible causes such as trauma, pain, illness, heat, prolonged standing or crowded spaces, so can often be easily diagnosed from an eyewitness description.

When someone has muscle jerks, or what seems to be a seizure immediately following a faint, it is often called convulsive syncope. While convulsive syncope can be difficult to differentiate from a seizure, it is usually very easy to treat. It may happen again with future faints, but it is not linked with epilepsy.

For more: Fainting

Migraine

About 1 in 7 people get migraine. Just like seizures, there are different types of migraine, and some present with an “aura” which can be mistaken as other conditions like seizures or stroke. Some migraine sufferers don’t even have a headache associated with their migraine. Migraine symptoms can include:

• visual disturbances or hallucinations
• blind spots
• numbness or tingling sensations in the limbs
• one sided paralysis
• nausea and/or vomiting
• extreme sensitivity to light and sound
• the person may feel tired, irritable, depressed and have difficulty concentrating

Other reasons why migraine attacks may be confused with epileptic seizures:

• Migraine can have similar triggers to seizures
• Fainting may occur during the migraine
• Some types of migraine may begin with loss of consciousness and other symptoms, and then be followed by headache
• Visual or sensory changes may be mistaken for focal seizures.

However, migraine usually last a lot longer than seizures. It should also be noted that EEG changes may be seen in people who have migraine.

For more information: Migraine

Transient ischaemic attacks (TIA’s)

These are often called ‘mini strokes’ and as the name suggests, are only temporary. They occur because of a brief period of insufficient blood supply to part of the brain, and it usually resolves within 24 hours.

The person can experience weakness and sensory changes, such as numbness and tingling, and often these symptoms are what may be confused with seizures. TIA’s usually last longer than seizures and loss of consciousness is rare. TIA’s can be a pre-warning for impending stroke so it is important to have this diagnosed properly.

For more information: TIAs

Sleep disorders

Like seizures, sleep disorders can be characterised by confusion, unusual behaviour and abnormal movements.

Sleep disorders that may be confused with epilepsy include night terrors, sleep walking, movement disorders, bed wetting, sleep apnoea, REM sleep behaviour disorders and narcolepsy.

For more information:

Sleep Disorders

Sleep

Baby twitches in sleep

Drop attacks

These are sudden falls to the ground without warning while walking or standing. They occur during tonic or atonic seizures, however they also can happen with other conditions such as:

• Meniere’s Disease – which affects the inner ear and balance
• Narcolepsy – a sleep disorder
• Cardiac conditions, blood pressure drops or fainting

Dizzy spells

Dizzy spells can be caused by any number of circumstances, including the conditions listed in ‘drop attacks’ section above.

For more: Dizziness

Movement disorders

This describes a group of neurological disorders that involve the muscles and movement systems of the body.

Tics and involuntary movements may sometimes be confused with myoclonic seizures or focal seizures where awareness is retained. Movement disorders do not cause loss of consciousness or EEG changes, although the condition often responds to antiseizure medication.

There are many different causes of movement disorders including Parkinson’s Disease, Huntington’s Chorea, Tourette’s Syndrome, sleep disorders and essential tremor.

For more information: Movement Disorders

What are movement disorders

Breath holding attacks

These are common in children aged 18 months to six years. They usually occur after the child has become frightened or upset. The child may cry for a short time then subsequently lose their breath. They can then become limp, faint, arch their back or jerk their limbs.

Sometimes breath-holding can lead to a seizure, but this is not considered epilepsy.

For more information: Breath holding attacks.

Daydreaming

Daydreamers can appear vacant, stare unintentionally and not respond for a short time. In children this is common and can be confused with absence seizures. The difference is that daydreamers will respond to touch or loud noises while someone having an absence seizure will not.

Cardiac events

These occur when the heart isn’t functioning properly. Examples are when a person has an irregular heart rate or clogging of the arteries which can cause dizziness or blackouts, depending on the severity of the condition.

Febrile convulsions

A febrile convulsion is seizure that happens in babies, toddlers and children when they have a fever. This is because the developing brain of a toddler or child is more sensitive to fever than an adult brain. There also appears to be a tendency for these seizures to run in families.

Between 2-4% of children have one or more febrile convulsions by the age of five years. Approximately two thirds of these children will only have the one seizure, while others will have a seizure with following fevers. They tend to grow out of febrile convulsions by age 6.

For most children the risk of developing epilepsy is no different from that of the general population and their  development is not affected. A very small proportion of febrile seizures are more complicated – that is, if the seizures last longer than 15 minutes, multiple seizures in a short period, or if the seizures have focal features. In this group the risk of developing epilepsy is higher but still low.

For more: Febrile Seizures

Concussion (impact convulsions)

Very occasionally, seizures can occur within seconds of a head impact. These seizures are not considered epilepsy and occur as a direct result of the impact at the time. Depending on the circumstances, the person may be prescribed short term antiseizure medication and they are managed as you would for someone with concussion.

For more: Concussion

Panic attacks

These are also known as anxiety attacks. Common symptoms include:

• Increased heart rate
• Sweating
• Feeling faint, nausea
• Dizziness
• Difficulty in breathing
• Smothering sensation, chest pain
• Feelings of anxiety, impending doom
• Sense of unreality
• Fear of loss of control

Some people genuinely believe they’re having a heart attack, are losing their mind, or on the verge of death. Panic attacks can occur at any time. An attack generally peaks within 10 minutes, but some symptoms may last much longer.

Usually it is possible to identify these attacks from the person’s descriptions of what happened. Occasionally focal seizures may cause similar symptoms.

For more: Panic Attack

Rage attacks (episodic dyscontrol syndrome)

These are sudden explosive outbursts that appear often and without warning, are out of control and totally out of context to any triggering event in the environment. The events seem out of character and are sometimes attributed to epilepsy.

There can be many different reasons why someone these outbursts. In practice, rage that occurs with, before or after an epileptic seizure is unprovoked and usually not directed at anyone in particular.

For more information: Rage Attacks

Psychogenic Non Epileptic Seizures (PNES)

These are characterised by a change in a person’s behaviour, perception, thinking or feeling which can resemble, or be mistaken for, a seizure. However, these episodes do not have the EEG changes that accompany an epileptic seizure.

PNES have an emotional or psychological cause rather than a physiological one and can be seen in people with or without epilepsy. Around 1 in every 6 people who go to a specialist epilepsy centre for investigation of poorly controlled seizures have PNES. It is also called Functional Neurological Disorder.

For more information:

Factsheet – Psychogenic Non-epileptic Seizures

Functional Neurological Disorder

Getting diagnosed

The best way to find out if any event is a seizure is to have a test called VEEG or  video electroencephalogram. Unfortunately capturing an event can be difficult, as seizures are often sporadic, short-lived and unpredictable, and many people don’t have access to these services.

Therefore, a careful description of what happened is extremely valuable. Diagnosis is more difficult without this eyewitness description. Sometimes a home video of the event can also help.

It is important to obtain a correct diagnosis to avoid being treated with medication unnecessarily. Unfortunately, sometimes this does happen. In these cases, the chosen treatment does not work mainly because it is not the right one for the condition.

If a person does not respond to antiseizure medications, further tests may be needed to explore other possible diagnoses. Sometimes a doctor may decide to wait and see if a similar event occurs again before undertaking further testing.

For more information:

Conditions similar to epilepsy

Epilepsy Self Management

Self-management refers to taking an active role in managing your health. This involves learning strategies and skills to help you live a better life such as making healthy lifestyle choices and informed decisions about treatment, and actively monitoring and managing your symptoms.

Self management aims to increase knowledge, better self-care, adopt healthier behaviours, to have improved outcomes. Here are some things you can do to help manage your epilepsy.  

• Understand your epilepsy: Learn about your diagnosis, treatment, and the impact of epilepsy for you
• Take your medication as prescribed
• Monitor your seizures: Keep a seizure diary to identify seizure patterns and triggers
• Avoid your seizure triggers if you can
• Know what substances can affect seizures
• Get enough sleep: Keep a routine bedtime and awakening and try to get at least 7 to 8 hours of sleep each night
• Be healthy: Do some regular exercise, eat a well-balanced diet
• Recognise and manage stress
• Talk to your doctor or about any health concerns 

Here are some practical tips:

Medications

Remembering medication

Many people with epilepsy complain of memory problems to some degree, so to help you remember to take your medications every day, some practical tips are suggested below:

1. Try to make it part of your daily routine like taking your medications at meal times or when cleaning your teeth.
2. Put your medications in a visible, but safe place as a reminder. Carry an emergency supply with you when you go out, in case you forget to take them at your regular time.
3. Set a watch, phone or alarm clock to remind you. There are also medication apps with reminders.
4. Use a chart or calendar and tick when you have taken your medications.
5. Consider using a pillbox or ask your pharmacist to pack your medications into a pill pack. These usually have the day and time you are supposed to take the tablets so you can see if you’ve taken them.
6. Ask someone to remind you.

Taking other medication

Other medications, including over-the-counter medications may interfere with how antiseizure medications are absorbed, or make you more prone to having seizures.

• Speak to your doctor before taking any new medications or supplements.
• Check with your doctor or pharmacist before taking any other medications or supplements and always report unwanted side effects or medication reactions to your doctor or pharmacist immediately.
• You can speak to a pharmacist on Medicines Line on 1300 633 424
• Medsinfo also have some useful information

Different medication brands

There are many different brands and generic medications for epilepsy and your pharmacist may offer you one of these as an alternative. Be aware that a generic product may not be exactly the same as the original brand and the non-active ingredients may differ (these include fillers, binders, coating or colouring).

Whether you are changing from brand to generic, generic to brand or generic to a different generic, this may increase your risk of seizures. So if your medication is working, stick with it – do not switch brands without discussing with your neurologist or prescribing doctor. Generics sometimes have a different name, different packaging, different tablets, and can be slightly cheaper.

See Factsheet Switching Brands to read more about this. 

Food that can affect medication

Grapefruit and Seville (bitter) oranges may affect absorption of epilepsy medication. There are substances in grapefruit that can interfere with the way the body absorbs and breaks down certain medications, increasing or decreasing levels of the dose in the bloodstream. One of the medications affected is a common antiseizure medication Carbamazepine (Tegretol). To reduce the risk of this happening:

• DO NOT drink grapefruit juice or eat grapefruit in any form if you take Carbamazepine (Tegretol, Tegretol CR or Teril) until you have talked with your doctor or pharmacist.
• Avoid taking any medication with grapefruit juice until you discuss with your doctor or pharmacist.
• If the juice is drunk over several days the effects are long-lasting, so simply separating the dose of medication and the ingestion of grapefruit juice does not prevent the interaction.
• Read the labels on foods and natural health products to make sure they do not contain grapefruit or Seville oranges.

Read Things you probably didn’t know about medication

When you are sick

Sickness such as vomiting and diarrhoea (which may also be unwanted side effects of antiseizure medication) can reduce how much of your medication is absorbed, so may trigger seizures. Also, vomiting and diarrhoea can cause you to become dehydrated which can increase the chance of seizures due to imbalances in your body’s fluid and electrolytes. If you have vomiting and diarrhoea stay at home and rest, try to sip fluids and eat bland foods when you are able. Speak to your pharmacist about rehydrating fluids.

Other substances that can affect seizures

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. Caffeine may interfere with antiseizure medication, and affect sleep patterns.

Excessive amounts of caffeine may increase the risk of seizures in some people

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. Energy drinks frequently contain high doses of caffeine, combined with such other substances as taurine, guarana, and sugar.

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’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 600 mg per day – around four cups of strong coffee, or five or six cups of tea. This would probably be less for someone with epilepsy. So limit your intake to two or three caffeinated drinks at most.

Avoid large amounts of caffeine or switch to decaf. It is best to not drink energy drinks at all. 

Lifestyle and seizure triggers

Triggers are events or circumstances that make people with epilepsy more likely to have a seizure.

Identifying your seizure triggers and trying to avoid them will help with avoiding and gaining better control of your seizures. Avoiding seizure triggers can be difficult sometimes, so it is important to weigh up the risks and look at overall quality of life.

Common seizure triggers are;

• Missed medications,
• Fatigue or physical and emotional exhaustion,
• Hormonal fluctuations in females,
• Sleep deprivation and
• Stress.

Examples of some more individual and less common triggers include:

• Flashing lights or changes in geometrical patterns (photosensitive epilepsy)
• Illness or fever, colds or infections
• Extreme heat or cold, or sudden change in atmospheric temperature
• Low blood sugar and poor nutrition
• Change in sleep states (many people with epilepsy have only ever had seizures whilst asleep)
• Drug toxicity (too much antiseizure medication or other medication)
• Medication interactions, including over-the-counter medications
• Emotional stress or anxiety
• Boredom or over-excitement
• Dehydration and over-hydration
• Sudden shock or extreme pain
• Sudden loud noise

For more about Seizure Triggers

For further information

Read more about self management and lifestyle such as sleep, drugs and alcohol, stress and more click here

Take a look at our Epilepsy Products page for safety devices, monitors and seizure apps.

Seizure Emergencies

What are seizure emergencies?

Most seizures last less than two minutes and stop on their own. Although many people with epilepsy have good seizure control, one in three people with epilepsy do not, and they continue to have seizures despite taking medication. Some people only have occasional seizures, but others may have frequent seizures.

There are a small group of people with epilepsy who have severe and even life-threatening seizures. These seizures are considered a medical emergency because they can be longer than usual (prolonged seizures) or happen one after the other (cluster seizures) with little or no recovery in-between. Both of these situations can lead to a medical state called status epilepticus. All these situations are considered seizure emergencies and can lead to brain injury or even death if not treated quickly.

Status epilepticus is a seizure emergency and can lead to brain injury or even death if not treated quickly

What is status epilepticus?

Status epilepticus (SE) is a prolonged or continuous seizure lasting longer than 5 minutes or seizure clusters (seizures occurring repeatedly) without full recovery in-between.

Although any seizure type, convulsive or non-convulsive, can become status epilepticus, the convulsive (tonic-clonic) seizures are the most serious form and pose a greater risk of complications.

Whatever the seizure type, SE is regarded as a medical emergency and can be life threatening or have long term consequences if it is not treated quickly. Studies show that it is unlikely that a prolonged or cluster seizures will stop after 5-10 minutes (without giving medication) and the best outcome is when an emergency seizure medication can be given as soon as possible.

The sooner medication is given, the more likely the seizures are to stop and the better the outcome is for the person. This is why some people have medication prescribed to be given outside the hospital setting, by caregivers, before an ambulance arrives.

Causes of Status Epilepticus [i]

SE can happen in people with and without epilepsy. Sometimes it is the first seizure the person ever has, sometimes it is caused by a medical condition, or it may happen in someone with epilepsy or an epilepsy syndrome. Up to 5% of adults and 10-25% of children with epilepsy will have one episode of SE.

The main causes of SE are having epilepsy, febrile seizures, and stroke but there are many other causes, which include: [ii]

• Brain injury
• Low levels of anti-seizure medication or withdrawal or changes in anti-seizure medications
• Specific epilepsy syndromes
• Serious illness, infection or sepsis
• Disease – malaria, encephalitis, brain tumour, dementia
• Intoxication or alcohol withdrawal
• Unknown cause

Effects of Status Epilepticus

SE can happen with any seizure type, so it can be convulsive or non-convulsive. Symptoms will depend on the type of seizure and can range from appearing vague and confused (non-convulsive) to more serious muscle jerking (convulsive) and loss of consciousness.

Short term effects can cause bodily changes which worsen the longer the seizures continue. These include increased blood pressure and heart rate, irregular heartbeats, and changes in blood sugar levels.

The long-term effects of SE depend on the cause and how long the seizures continue. Seizures lasting longer than 60 minutes and are convulsive are linked with poorer outcomes. Some long-term effects of SE can include:

• Memory and learning difficulties
• Permanent damage to the brain
• Continuing seizures

Medications for seizures outside the hospital setting

Emergency seizure medications are prescribed for people who have had, or likely to have episodes of SE or prolonged or cluster seizures. These medications can be given in the community setting in an easy to administer route and work quickly with the intention to stop a seizure early to prevent complications before it progresses to SE.[iii]

Outside the hospital setting, the medication is given either by drops or spray in the nose (intranasal), or in-between the teeth and cheek (buccal). When given this way, it is absorbed into the bloodstream through the mucous membranes. Because of the ease of administration, they can be given by family or caregivers in the community.

These medications are usually benzodiazepines – a group of medications known as sedatives which have a calming effect on the brain. They are administered in a way that:

• is easy to do outside the hospital setting
• is easily absorbed through the mucous membranes
• works quickly
• is very effective

The aim of these medications for seizures, is to:

• stop prolonged or cluster seizures
• prevent SE
• protect the brain by shortening the seizure time
• protect quality of life by preventing potential damage to the brain
• reduce disruption to daily life and long stints in hospital.

In many situations, early treatment outside the hospital setting can stop the seizures and prevent the progression into SE and the need for lengthy hospitalisation. [iv]

The longer a seizure lasts, the harder it can be to stop. Since most seizure emergencies occur in the community, effective pre-hospital treatment relies on the use of fast absorbing and easy to administer drugs. Growing evidence supports the use of non-intravenous benzodiazepines in the out-of-the-hospital  environment.

Emergency seizure medications are usually very effective, but if they don’t work and seizures continue or complications occur, then emergency medical treatment will be needed at hospital.

Having a plan for seizures and emergencies

There is often the need to have a more formalised plan in place if a seizure occurs outside the home environment such as at school or in the workplace. These are often referred to as seizure management plans (SMP).

A seizure management plan (SMP) is a document that provides essential information to anyone who may be able to assist someone having a seizure – whether that be family, friends, carers, teachers, colleagues or other involved professionals. It helps caregivers in all settings with quick access information about how to manage seizures and seizure emergencies, treatments, seizure first aid and safety specific to the person with epilepsy that they care for.  This can help to lessen the impact of seizures on the person’s daily life and the risk of injury.

A seizure management plan is to ensure the right people know what to do when a seizure happens. They give everyone a clear direction and peace of mind.

When someone is likely to have prolonged or cluster seizures, they will also have an emergency medication order and plan to accompany the seizure management plan. Your treating specialist will write up the emergency medication order, but if you need either of these documents – seizure management plan or an emergency medication plan – we can assist with this and offer the necessary training to caregivers or staff.

If you want to learn more about seizure management planning, seizures, seizure emergencies or the administration of emergency medication for epilepsy, go to:

Seizure Management Planning

Education and Training

References

[i] Trinka, E., Cock, H., Hesdorffer, D., Rossetti, A.O., Scheffer, I.E., Shinnar, S., Shorvon, S. and Lowenstein, D.H. (2015), A definition and classification of status epilepticus – Report of the ILAE Task Force on Classification of Status Epilepticus. Epilepsia, 56: 1515-1523. https://doi.org/10.1111/epi.13121

[ii] Sánchez, S., & Rincon, F. (2016). Status Epilepticus: Epidemiology and Public Health Needs. Journal of clinical medicine, 5(8), 71. https://doi.org/10.3390/jcm5080071

[iii] Fedak Romanowski, Erin M. et al.(2020) Seizure Rescue Medications for Out-Of-Hospital Use in Children

The Journal of Pediatrics, Volume 229, 19 – 25, Oct 2020 https://doi.org/10.1016/j.jpeds.2020.10.041

[iv] Arzimanoglou, A., Lagae, L., Cross, J.H. et al. (2014) The administration of rescue medication to children with prolonged acute convulsive seizures in a non-hospital setting: an exploratory survey of healthcare professionals’ perspectives. European Journal of Pediatrics 173, 773–779 (2014). https://doi.org/10.1007/s00431-013-2255-5

Shah, A., and Kelso, A. (2015) Treating status epilepticus in the community. Prescribing in practice. 5 September, pg 21-24. https://wchh.onlinelibrary.wiley.com/doi/pdf/10.1002/psb.1380 Accessed June 2021