Epilepsy Awareness – Everything You Need to Know

Epilepsy is a neurological disorder that affects how the brain’s electrical signals function. Under normal circumstances, brain cells communicate through controlled electrical impulses. When these signals become irregular, excessive, or fail to stop as they should, they can trigger a seizure. A diagnosis of epilepsy is made when a person has a tendency to experience seizures that originate in the brain.

In this Epilepsy Awareness Guide, we’ll give a clear overview of the condition, including its possible causes, different types of seizures, important safety considerations such as SUDEP (Sudden Unexpected Death in Epilepsy), and practical advice for managing seizures confidently and safely.

Understanding Seizures and Diagnosis

A seizure is a temporary change in brain function caused by abnormal electrical activity. 

When someone experiences a first seizure, they are usually seen in A&E or referred to their GP, who may then direct them to a neurologist or epilepsy clinic for specialist assessment.

Diagnosis generally involves several key steps:

• A full medical history – including previous health conditions, medications, and family history.
• A detailed description of the seizure – noting what happened before, during, and after the event.
• Tests to rule out other conditions – such as fainting, migraines, or heart-related episodes that can mimic seizures.
• Capturing a clear account or video footage – with consent, this can significantly help specialists in confirming the type of seizure and planning treatment.

For family members, caregivers, or anyone looking to build their epilepsy awareness, completing an online epilepsy training course can provide essential guidance on seizure recognition, first aid and effective support strategies.

SUDEP: Sudden Unexpected Death in Epilepsy

Sudden Unexpected Death in Epilepsy (SUDEP) refers to a rare situation in which a person with epilepsy dies unexpectedly and no other cause can be found. In most cases, it is thought to occur during or shortly after a seizure, often during sleep.

Although SUDEP is uncommon, it is an important topic to be aware of as part of understanding epilepsy. For adults, it is estimated to affect around 1 in 1,000 people with epilepsy each year, and the risk is higher in those whose seizures, particularly tonic-clonic seizures, are not well controlled.

Key facts:

• SUDEP affects around 1 in 1,000 adults with epilepsy each year
• It is more common in people with uncontrolled seizures, especially tonic-clonic seizures

Risk Factors

Some factors are known to increase the likelihood of SUDEP, most of which relate to seizure control. The most significant risk factor is having frequent or uncontrolled tonic-clonic seizures. 

Seizures that occur during sleep may also increase risk, as they are less likely to be noticed straight away. Missing doses of prescribed anti-seizure medication can make seizures more likely, which in turn may increase overall risk. 

Understanding these factors helps people with epilepsy and their families focus on practical steps that support better seizure management and long-term wellbeing.

Factors believed to increase the risk of SUDEP include:

• Frequent or uncontrolled tonic-clonic seizures
• Seizures occurring during sleep
• Not taking anti-seizure medication regularly

Reducing SUDEP Risk

The positive is that good seizure control significantly reduces the risk of SUDEP. 

Many of the steps that support overall epilepsy management also help lower risk. Staying consistent with medication, keeping track of seizures, and having regular reviews with a healthcare professional can all make a meaningful difference. 

For people who experience seizures at night, additional monitoring tools may provide extra reassurance. 

People can lower their risk by:

• Taking medication consistently and as prescribed
• Monitoring seizures with a diary or digital tracker
• Reviewing treatment regularly with a specialist
• Using nighttime seizure alarms if nocturnal seizures are common
• Avoiding known seizure triggers

Common Seizure Triggers

While triggers do not cause epilepsy itself, they can increase the likelihood of a seizure occurring in someone who already has the condition. 

Triggers are highly individual. What affects one person may not affect another, but recognising personal patterns can play an important role in seizure management. Everyday factors such as changes in routine, physical wellbeing, or environment can sometimes make an individual more likely to have a seizure.

By understanding and reducing exposure to known triggers, many people are able to improve seizure control and feel more confident in managing their condition.

Possible triggers can include:

• Missing medication
• Tiredness or poor sleep
• Stress
• Alcohol or recreational drugs
• Flashing or bright lights
• Missing meals
• Heat or overheating

Keeping a seizure diary or using a digital tracking app can be especially helpful in identifying patterns over time. Recording when seizures occur, along with possible contributing factors, can help spot trends and make informed adjustments to treatment or lifestyle where needed.

Types of Seizures

The International League Against Epilepsy (ILAE) classifies seizures according to where they begin in the brain and how they affect awareness or consciousness. This approach helps specialists choose the most appropriate treatment and gives individuals a clearer understanding of their seizure type. 

Seizures are generally grouped into focal seizures, generalised seizures, and unknown or unclassified seizures.

Focal Seizures

Focal seizures start in one specific area of the brain. They may remain limited to that area or spread to involve both sides of the brain. 

These seizures are further described based on how they affect consciousness:

• Focal preserved consciousness seizures: The individual will remain aware of what is going on around them. They will remember the experience once the seizure has finished, but may find it difficult to describe how they felt.
• Focal impaired consciousness seizures: Consciousness or responsiveness is reduced, and the person may be confused or have no memory of the seizure afterward.

In a focal to bilateral tonic-clonic seizure, the seizure starts in one side of the brain and then spreads until it affects both sides. Individuals may experience symptoms of a focal seizure before the tonic-clonic seizure starts, and they lose consciousness. Symptoms of the focal seizure typically include a rising feeling in the stomach, a change in vision, sudden and intense emotions, and unusual or unpleasant smells or tastes.

Individuals may recognise these symptoms as a warning that they are about to have a tonic-clonic seizure. However, sometimes focal seizures spread so quickly that the individual may not be aware that their tonic-clonic seizure started as a focal seizure.

Generalised Seizures

Generalised seizures involve both sides of the brain. Because they affect wider brain networks, consciousness is usually impaired. 

There are several types of generalised seizures, each with distinct features:

• Absence seizures – Brief seizures that cause a short period of staring or ‘blanking out’, often lasting only a few seconds, during which the person may be unresponsive and unaware it has happened.
• Tonic-clonic seizures – Seizures that involve a combination of muscle stiffening (tonic phase) followed by rhythmic jerking movements (clonic phase), with a loss of consciousness.
• Myoclonic seizures – Sudden, brief jerking movements of a muscle or group of muscles, often described as quick ‘jumps’ or twitches.
• Negative myoclonic seizures – Seizures that cause a sudden, brief loss of muscle tone, leading to dropping objects or momentary head nodding.
• Clonic seizures – Seizures characterised by repeated, rhythmic jerking movements of muscles.
• Tonic seizures – Seizures that cause sudden muscle stiffening, which may affect the arms, legs, or entire body and can lead to falls.
• Atonic seizures – Seizures that cause a sudden loss of muscle strength or tone, often resulting in a collapse or head drop.

Unknown or Unclassified Seizures

If doctors are unable to determine where a seizure begins, it may be described as unknown (whether focal or generalised). A seizure may also be labelled unclassified if a doctor is certain that an individual’s seizure is an epileptic seizure, but they don’t have enough information to classify it. For example, if no one witnessed the event or diagnostic results are inconclusive. 

As more information becomes available, the seizure type can often be reclassified more precisely.

Seizure First Aid: Essential Do’s and Don’ts

Knowing how to respond calmly and confidently during a seizure can make a significant difference to someone’s safety and recovery.

While seizures can look frightening, most are brief and stop on their own. The priority is to protect the person from injury, monitor what is happening, provide reassurance as they recover, and seek medical assistance where necessary.

Understanding a few simple first aid steps, as well as what to avoid, helps ensure the situation is handled safely and respectfully.

Do:

• Move hazards away from the person
• Gently guide them from danger if they are standing
• Time the seizure accurately
• Stay with them until they have fully recovered
• Reassure them and explain what happened
• Check for injuries afterward

Don’t:

• Put anything in their mouth
• Hold them down or restrain them
• Move them unless necessary
• Shout or try to shock them awake
• Give food or drink until they are fully alert
• Assume they are aware of their surroundings

Status Epilepticus

Status Epilepticus is a term used when a seizure lasts significantly longer than usual, or when seizures occur repeatedly without the person fully recovering in between. 

Because ongoing seizure activity places considerable stress on the brain and body, it is considered a medical emergency. Prompt treatment is important to stop the seizure and reduce the risk of complications.

Convulsive Status Epilepticus

Convulsive Status Epilepticus involves prolonged tonic-clonic seizure activity.

Emergency medical help is required if a tonic-clonic seizure lasts longer than five minutes, or if multiple seizures occur without the person regaining consciousness between them. 

Prolonged convulsive seizures can affect breathing, circulation, and brain function, and without urgent treatment may lead to long-term injury or, in rare cases, be life-threatening. Acting quickly can significantly improve outcomes.

Non-Convulsive Status Epilepticus

Non-Convulsive Status Epilepticus involves prolonged seizure activity without the convulsive movements seen in tonic-clonic seizures. 

Although it can be less obvious, it is still a serious condition that requires urgent medical assessment and treatment.

Emergency Medication

For some people with epilepsy, healthcare providers may prescribe emergency medication to quickly stop prolonged or repeated seizures. These medications are designed to be used in urgent situations and can help prevent complications such as Status Epilepticus. 

Common emergency medications include:

• Buccal Midazolam – administered in the mouth between the gum and cheek, this medication works quickly to stop ongoing seizures.
• Rectal Diazepam – given rectally, it is another effective option for halting prolonged or repeated seizures when rapid action is needed.

These should only be given by someone who has received the appropriate training and should always be used according to the individual’s personalised epilepsy care plan and emergency medication protocol. 

Emergency services should be contacted if:

• It’s the first time the emergency medication has been administered to an individual
• The seizure hasn’t stopped within five minutes of the emergency medication being administered
• You are unable to administer it or give the individual the full dose
• The individual shows signs of breathing difficulties

The Importance of an Epilepsy Care Plan

Every person living with epilepsy benefits from having a personalised, up-to-date care plan developed with their specialist. 

A care plan provides a clear reference for managing the condition and ensures that everyone involved, from the individual to family members or caregivers, knows the best way to respond in different situations. 

Key elements typically include:

• Seizure types – a record of the kinds of seizures the individual experiences, helping predict and manage episodes.
• Medication – details on current prescriptions, dosages, and timing to ensure consistent treatment.
• Known triggers – information on factors that may increase seizure risk, allowing for proactive management.
• Emergency procedures – step-by-step instructions for what to do if a seizure occurs, including when to administer emergency medication.
• When to seek medical help – guidance on recognising situations that require urgent attention, such as prolonged seizures or signs of complications.

Having a personalised epilepsy care plan supports informed decision-making, improves safety, and gives individuals and their support networks confidence in managing epilepsy effectively.

How Building Epilepsy Awareness Can Help

Raising awareness about epilepsy plays a vital role in creating understanding, reducing stigma, and improving safety for those living with the condition. 

When friends, family, colleagues, and the wider community are informed about seizures, triggers, and first aid, they are better equipped to respond calmly and appropriately in an emergency.

Awareness also encourages open conversations, develops empathy, and ensures that people with epilepsy feel supported in their daily lives. 

By sharing knowledge and resources, we can empower individuals to manage their condition confidently, advocate for their needs, and create safer, more inclusive environments for everyone affected by epilepsy.