The risk of a seizure related injury is often raised as a concern.  You can minimise potential risks by assessing your home environment and putting some measures in place to keep you or someone you look after safe and well.

An understanding of potential seizure triggers can help you make more informed decisions about your safety.  So, for example, if you have forgotten to take your medication, you may want to avoid riskier activities for the day as this can increase the risk of a seizure.

Every person’s circumstances and needs are unique and need to be considered when assessing risks and benefits of activities and daily living.  

If you have good seizure control, some of the following information may not apply to you:

Assessment of care needs 

  • You can request a formal assessment of your home environment via your local social work department.  This is called a community care assessment for adults, or a section 23 assessment for children.  This assessment will identify potential safety concerns and will make recommendations about adaptations to your home and any other support you may need.  The assessment could, for example, result in you having a wet room or shower installed, or receiving a few hours of support a week to help with chores or shopping. 

 

Taking medication exactly as prescribed 

  • This will give you the best possible chance to get your seizures under control and help reduce seizure related risks.  Set a reminder on your phone or smart speaker to take your medication at a certain time.  Use a dossette box, and/or link medication time with a certain routine, such as with breakfast.   

 

Safety around the house 

  • Risks of injury during or following a seizure will depend on the type of seizure(s) you have and whether you get a warning.  Your epilepsy specialist nurse or an occupational therapist may be able to help with identifying risks and making suggestions to reduce potential risks.  For example, a stair gate at an appropriate height at the top or bottom of internal stairs may stop you from falling downstairs during a seizure, or stop you from climbing stairs during a focal seizure with impaired awareness (previously known as complex partial seizure).  Shaped plastic covers which go over sharp furniture edges, and soft floor coverings especially in the bedroom, could also reduce risks of injury.  There is more information like this in our Staying safe with epilepsy publication.

 

Seizure warning 

  • If you get a warning before a seizure, you can sometimes use that time to put yourself in a safer position away from possible danger.  Not every person gets a seizure warning, but if you do, it may take you a while to get to know your own seizure warning.  You may feel a certain way, or experience a smell or other unexpected sensation, which may then allow you to act on it.

 

Epilepsy alarms 

  • A community care assessment will be able to assess you for a community care alarm.  If you know you are going into a seizure, you can pull a cord or push a button to alert a designated person or call centre to you having a seizure.  It will also allow you to call for help after a seizure, for example if you have been injured.  Different types of epilepsy alarms suit different types of seizures.  Before you choose an alarm, make sure this is suitable for your type of seizures and discuss this with your epilepsy specialist nurse.  More information on alarms can be found in our Epilepsy alarms publication.

 

Bath or shower

  • Taking an unsupervised bath is considered to be high risk because of the risk of drowning during a seizure.  This is a particular concern if you live on your own.  A shower with level access or wet room tends to be safer as this stops water from being trapped at the bottom.  Avoid using very hot water to reduce the risk of burns.  Using a shower chair can reduce risks of a fall injury if your seizures mean you suddenly drop to the floor.  You can also help prevent possible injuries by replacing a glass screen with a plastic shower screen or fabric curtain.  For some people, especially those with a learning disability and/or other complex needs, having a bath, however, often meets a sensory need.  This sensory need should be taken into account in the overall assessment.

 

Sleep seizures 

  • These are often referred to as nocturnal seizures but they can happen at any time when a person sleeps.  Sleep seizures can have their own risks. For example, the force of a tonic-clonic seizure can sometimes turn a person onto their stomach burying their head into a pillow.  This could restrict breathing.  A special safety pillow with holes can reduce the small risk of suffocation.  Make your bedroom environment as safe as possible by keeping it clutter free, covering sharp furniture edges or adding something soft to land on should you fall out of bed during a seizure. 

 

Prolonged seizures and status epilepticus 

  • Most seizures are short, stop on their own and do not require any intervention.  On rare occasions, a seizure may go on for longer than what is usual.  This can lead to status epilepticus, which is defined as a seizure which will not stop on its own.  As a rule of thumb, a medical emergency arises if a seizure goes on for two minutes longer than what is normal for that person, or five minutes in total if you are not aware of a seizure pattern.  Prolonged seizures and status epilepticus always require some kind of intervention.  A person who has had one prolonged seizure may be prescribed emergency medication which can be given by a nominated family member or carer.  It will come with a detailed care plan which tells you what to look out for, when to give emergency medication, and when to call an ambulance.  If this is a first prolonged seizure, always call an ambulance.

 

Epilepsy related deaths and Sudden Unexpected Death in Epilepsy (SUDEP) 

  • Although rare, sadly, people can die from epilepsy.  This can be caused by prolonged seizures, or seizures which will not stop on their own, known as status epilepticus.  It could be the result of an injury or accident during or after a seizure, or as a result of drowning.  People can also suddenly and unexpectedly die, where the cause is unknown but may be linked to a suspected seizure.  This is called SUDEP. 

 

  • This is never an easy subject to talk about. It is important to have that conversation though, as there are certain factors that can increase the risk of SUDEP. These include having uncontrolled seizures, particularly tonic-clonic seizures, living alone, having seizures during sleep, and skipping or sudden/abrupt unsupervised changes to medication.  Your epilepsy specialist nurse or neurologist will be able to explain these risks to you, and advise on what you can do to reduce the risk of SUDEP. For more information on SUDEP, read our Sudden Unexpected Death in Epilepsy (SUDEP) publication. You can also contact our helpline for support and general information about SUDEP.

Publications

If you or someone you look after has been diagnosed with epilepsy, our staying safe with epilepsy publication provides more detailed information and may help identify, assess and minimise possible risks.

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