Epilepsy safety

Managing seizures

Managing seizures

I’m seizure free.
What do I need to know?

    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:

  • There are no changes to your epilepsy, health or wellbeing
  • You are on the medication that is still right for you
  • Whether you still need to be on epilepsy medication

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)

Managing seizures

Cluster Convulsive Seizures and Status Epilepticus

    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.

  • 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.

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

 

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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.

Call our support team

If you are in the UK or Ireland we can talk with you by email or telephone. Our support team will do its best to give you what you need.

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