Seizure Information
Epilepsy is a spectrum disorder, which means it includes a whole range of syndromes and seizure types which will impact each person very differently.
For some people, seizures can evolve and escalate, but most will experience the same type, with similar symptoms, each time.
Getting to know your body, your triggers and your seizures – and educating trusted people around you – is an important part of staying safe and living well with epilepsy.
Seizure Presentations
The symptoms you experience will vary depending on the type of seizure, and the part of the brain affected. Some people experience a warning ‘aura’, others will have no idea it’s about to happen; some people lose consciousness, others remain aware throughout.
Contrary to popular belief, there isn’t a textbook seizure. TV and an enduring lack of knowledge about what epilepsy is and is not, has meant that most people only recognise seizures as falling to the floor, with jerking arms and legs. In reality, seizures can also manifest as:
- Momentary confusion
- The appearance of daydreaming or staring
- Dizziness or tingling
- Visual disturbances like flashing lights or hallucinations
- Repetitive movements like plucking at clothes, walking in circles, swallowing or lip-smacking
- Rocking or high-pitched screaming
- Stiffening of your body
- Feelings of anxiety, fear or déjà vu
- Jerking of a body part, like your head, leg or arm
- Behavioural changes
Regardless of how a seizure presents, and whether or not you are aware throughout, the experience can be distressing, confusing and exhausting.
Seizure Safety
The key to staying safe is being prepared. That means understanding your condition and ensuring the people around you know what to do and when. With those foundations in place, you can get on with living life to the full.
Next steps
Create your Epilepsy Management Plan
What to Include in Your EMP
A detailed EMP should include all the information an everyday person and a first responder needs to know if you’re having a seizure:
- Your medical history, including epilepsy diagnosis
- Current medications
- Seizure type/s and presentation/s
- Seizure triggers
- Seizure first aid measures
- Post-seizure needs
- Any emergency measures, including whether emergency medication is required and when/if to call 000.
We recommend that you share your plan with your doctor and review it annually, or if anything changes, to ensure it remains up to date.
When emergency medication is required, a separate Emergency Medication Management Plan (EMMP) should be developed and signed by your prescribing doctor. It is best to keep this attached to your Epilepsy Management Plan.
Contact Epilepsy Queensland’s Living Well team for one-to-one support with creating your tailored Epilepsy Management Plan. This is a completely free service.
Call 1300 852 853 or email livingwell@epilepsyqueensland.com.au
Download a template Epilepsy Management Plan.
Learn Seizure First-Aid
Build the skills and confidence to help people with epilepsy stay safe with our online and in-person epilepsy first-aid training. Our courses, run by experienced trainers, are packed full of information on the fundamentals of epilepsy, seizure recognition and management, triggers and treatment, as well as practical learnings around seizure first aid, emergency situations and the administration of Midazolam.
Your Safety Checklist
If your seizures, or those of someone you care for, are not well controlled, it’s important to be aware of the everyday things that could pose a safety risk. Everyone is different, and everyone’s experience of epilepsy is different – the goal is to strike a healthy balance between managing that risk and unnecessarily restricting your life.
Aids and Equipments
Epilepsy alarms and monitors, or seizure alert systems, are designed to detect seizure activity – usually tonic clonic, because they involve movement. The goal is to give families and carers peace of mind and support the person with epilepsy to achieve greater independence.
Other aids include atomisers for the administration of Midazolam, fall alarms, protective headgear, medication reminders, cooling vests.
To discuss your needs, and find out more about the types of equipment available, contact the Living Well team on 1300 852 853.
Seizure Classification
Seizures are classified as either focal or generalised, based on how and where within the brain the activity causing the seizure begins.
When seizures appear to result from activity in just one area of the brain, they’re called focal seizures. These seizures fall into two categories:
Focal seizures without loss of consciousness
Can include motor symptoms (like jerking movements or twitching in a specific body part), sensory symptoms (unusual sensations like numbness or altered perceptions of taste, smell, or sound), changes in heart rate, sweating or nausea as well as experiences of déjà vu, hallucinations or sudden intense emotions.
Focal seizures with impaired awareness
Altered awareness or consciousness can mean you seem confused, dazed, or unresponsive – staring into space- and may not remember the event afterwards. Symptoms can include repetitive movements such as chewing, blinking or hand rubbing and unusual, uncoordinated behaviours.
Find out more about the different Seizures Types.
Seizure Triggers
Seizure triggers are factors or conditions that can increase your likelihood of having a seizure. Identifying and managing them (where possible) is an important part of reducing seizure frequency and improving overall seizure control.
While triggers can vary widely from person to person, there are some common themes:
- Feeling tired or being under-slept
- Not taking your epilepsy medication as prescribed
- Experiencing stress and anxiety
- Over-exertion or illness
- Hormonal fluctuations
- Consumption of alcohol and use of recreational drugs
- Flickering lights (for people with photosensitivity)
Keeping a record of what happened in the run-up to a seizure event can help you to identify patterns and get a handle on your triggers.
Recovering From A Seizure
The postictal state, or the period after a seizure, varies from person to person and can be influenced by the type of seizure. You might feel confused and disorientated, have gaps in your memory and feel irritable, sad or emotionally unstable. There can also be physical symptoms like fatigue, muscle soreness, headaches, nausea and difficulties with speech and coordination.
You may also have experienced an injury from falling, striking hard surfaces or biting your tongue. Not to mention the emotional aftershock, which can trigger anxiety and distress.
For some people, this postictal phase lasts only a few minutes while, for others, it can go on for hours and even days.
Get In Touch With Our Epilepsy Experts
For information and support, contact our Living Well team on 1300 852 853 or email livingwell@epilepsyqueensland.com.au.
Request for resources
FAQ’s
Prodrome: Specific behaviours or feelings that occur in the hours or days before a seizure
Aura: A feeling or sensation that can act as a warning that a seizure has begun
Ictus: The term used to describe the seizure itself
Postictal: The recovery period following a seizure
Status epilepticus is a serious medical condition characterised by a prolonged epileptic seizure or a series of seizures, without full recovery of consciousness in between, that lasts for more than five minutes.
It is considered a medical emergency because it can lead to complications such as brain damage, respiratory issues, and other serious health problems.
If a seizure, or cluster of seizures without regaining consciousness in between, lasts for more than 5 minutes, call an ambulance.
If you have been trained in how to administer emergency medication, refer to the Epilepsy Management Plan.
Many people may appear to stop breathing during a tonic-clonic seizure and sometimes do. If it is safe for the person and yourself, you can put them in the recovery position. When the movements stop and seizure is ending, you may need to deliver some rescue breaths until help arrives.
If someone always stops breathing when they have a seizure, it is good practice to call an ambulance as soon as possible. DON’T wait for the five-minute rule.
✔ The key seizure first aid steps are:
✔ Time the seizure
✔ Protect the person from injury
✔ Roll onto side if unconscious
✔ Support head if seated
✔ Redirect if confused
✔ Reassure and re-orientate
✔ Stay with the person
✘ DO NOT restrain the person
✘ DO NOT put anything in their mouth
✘ DO NOT give food or drink until they have recovered
For general information, please give the services team a call on 07 3435 5000. In the event of an emergency, or if you have concerns, always call Triple Zero.
Intranasal and Buccal Midazolam are used for the Emergency Management of prolonged seizures. Midazolam (Hypnovel) is a short acting benzodiazepine medication like Diazepam (Valium, Antenex, Ducene) and Clonazepam (Rivotril, Paxam). The prescribing doctor will write an emergency plan to be followed.
Midazolam used for:
- Emergency treatment/management of prolonged seizures
- Sedation during medical procedures
Midazolam may be prescribed for people with epilepsy who:
- Often have seizures that last longer than 5 minutes
- Have a cluster of seizures that recur close together
- Have a history of status epilepticus
- Live a long way from emergency services
- History of recurrent prolonged febrile convulsions
Midazolam can be given in the following ways:
- Buccal – Trickled inside the cheek between the lower gums and inner cheek area of the mouth
- Intranasal – Dripped slowly into the nasal passage or sprayed into the nose using a nasal atomiser device.
- Midazolam is absorbed rapidly via mucosal membranes in the nose or mouth and directly into the bloodstream. It does not need to be swallowed. If swallowed it will be less effective (swallowing is not harmful). Ambulance officers and medical practitioners are able to give midazolam intramuscularly (into the muscle) or intravenously (into the vein).
We would encourage anyone who may be required to administer Midazolam to undertake our training and access support from our team of epilepsy specialists.
‘Seizure’ is the term we use for an epileptic event. ‘Fit’ is an outdated term that some people may find offensive.
No. You should never restrain someone during a tonic-clonic seizure. Follow the basics of seizure first aid and:
- Time the seizure
- Protect the person from injury
- Roll onto side if unconscious
- Support head if seated
- Redirect if confused
- Reassure and re-orientate
- Stay with the person
To find out more about epilepsy and build confidence around responding to a seizure, check out our education and training options.
There is usually no need to call an ambulance unless:
- Stipulated within the person’s Epilepsy Management Plan
- The seizure has exceeded 5 minutes
- They have been injured
- It occurred while in water
- They are having trouble breathing
- There is food, fluid or vomit in their mouth – which they could have inhaled
- They are unresponsive 5 minutes after the seizure ends
To find out more about epilepsy and build confidence around responding to a seizure, check out our education and training options.
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