Managing seizures
Be seizure aware
Being seizure aware may help you control them. Although seizures are spontaneous and unpredictable, there are often triggers that you come to recognise, for example, stress, changes in routine or forgetting to take epilepsy medication (also known as antiepileptic drugs or AEDs).
Managing seizures
I’m seizure free.
What do I need to know?
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There are no changes to your epilepsy, health or wellbeing
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You are on the medication that is still right for you
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Whether you still need to be on epilepsy medication
If you’re currently seizure free your risks may be lower, but it’s important you continue to look after yourself and have regular reviews to check:
If you are seizure free but you notice any changes to your health, speak with your clinician in case it is related to your epilepsy or your medication.
Managing seizures
I’m not seizure free.
What do I need to know?
Anyone having seizures, whether one a year or many a day, is considered to have active seizures. If this is you, have regular reviews with your clinician. This may be a GP, neurologist, epilepsy specialist nurse or learning disability nurse.
Clinical guidelines such as the NICE Guidelines (UK) recommend that people with epilepsy have regular reviews of their epilepsy yearly, and that they are given information about risk. This is not law but you should ask for a review if one isn’t offered to you.
Not taking prescribed medication, even for a short time, can increase your risks of seizure and injury / death. If you are experiencing side effects from medication or have any concerns, talk to your clinician asap.
Available Guidelines
Clinical Guidelines
Some countries produce clinical guidelines to support clinicians in providing care for people with epilepsy.
You can find a list of clinican guidelines noted below:
NICE Guidelines into the management and diagnosis of the epilepsies (England & Wales)
SIGN Guidelines into the diagnosis and management of epilepsy (Scotland)
AAN / AES Guidelines on Sudden Unexpected Death in Epilepsy; SUDEP (America)
Guidelines into the investigation of deaths associated with epilepsy – (this document is currently being updated by the Royal College of Pathology)
There are 40+ different types of seizures
Clinicians group different types of seizures together into classifications, to help them identify the best methods for treating them. These include:
Managing seizures
Cluster Convulsive Seizures and Status Epilepticus
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Status epilepticus refers to continuous seizure activity for 30 minutes or longer. This type of seizure has a high risk of death, so guidelines recommend early intervention (such as emergency medication) after five minutes of generalised tonic-clonic seizure activity.
Some people with epilepsy have very long seizures (prolonged’ seizures). All seizure types can become prolonged, but convulsive seizures (eg: tonic-clonic seizures) require urgent treatment and emergency medication may be needed to stop them. These seizures may be called cluster seizures – where seizures occur one after the other without recovery in between.
Guidelines from NICE, UK or SIGN (Scotland) recommend that emergency medication is started five minutes after a person first goes into a prolonged convulsive seizure or if they have three or more convulsive seizures in an hour.
During your review
Your clinician will need to know all about your seizures.
You may want to:
Ask people
Ask people who observe your seizures to describe them
Keep a record or diary
Keep a record or diary of your seizures and the circumstances surrounding them
Invite someone
Invite someone who has seen you having a seizure to the appointment
Also see
Safety in your pocket, download the EpSMon app
More than 1,700 clinicians regularly use our Checklist
Check out our learning disability resources
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.
