Seizures and Risk

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There are over 40 different type of seizures, and they affect people in different ways. Clinicians group different types of seizures together (into groups called classifications), to help them identify seizures and the best methods for treating them.

Find out more about these classifications here.

Being seizure aware may help you control them. Although seizures are spontaneous and unpredictable, there may often be triggers that you come to recognise eg: stress, changes in routine or forgetting to take epilepsy medication (also known as antiepileptic drugs or AEDs).

Seizures can lead to injuries or falls; but they can also be much more serious; in some cases contributing to, or causing death. Different types of seizures carry different risks, which are mentioned below.

Talking with your clinician, taking action to reduce seizures, and knowing how to minimise the risks linked to having seizures are positive steps you can take to stay safer.

Take a look at our sections below to find out what you need to know about seizures and staying safe:

I’m Seizure free – what do I need to know? 

If you’re currently seizure free your risks may be lower, but if you are still prescribed epilepsy medication it is really important you continue to take it until your clinician suggests any changes. You should also still have regular reviews, to check:

  • there are no changes to your epilepsy
  • that your medication 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.

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’. Regular epiepsy reviews with your clinician are recommended. This clinician may be a GP, Neurologist,Epileptologist, Paediatrician or Epilepsy Specialist Nurse.

If you have epilepsy and are unsure what type of epilepsy or seizures you have, ask your clinician to explain them at your next appointment. They can also give you specific information on how to minimise your risks for your specific type of seizure. 

Clinical guidelines (information for clinicians about how to diagnoses, treat and manage health conditions) such as SIGN (Scotland) and the NICE Guidelines (UK) recommend that people with epilepsy have regular reviews of their epilepsy yearly, and that they are given information about risk.

See here for SIGN guidelines and NICE Guidelines

 

During your review, your clinician will need to know all about your seizures. To help with this you may want to:

  • ask people who observe your seizures to desribe them
  • keep a record or diary of your seizures and the circumstances surrounding them
  • invite someone who has seen your seizures to a medical appointment.

Whether you have active seizures – or are seizure free (but still prescribed medication), it is important that you take your medication regularly, reliably and as prescribed, even if you are worried about doing so. Not taking your medication, even for a short time can cause more seizures and increase your risk of injury, or in some cases can cause people with epilepsy to die. If you are having side-effects, or are worried about this, speak with your clinician for advice on the best treatment for you.

Having active seizures puts you at risk, and there are certain types of seizure which research has shown increase a person’s risk level further:

Generalised Tonic-Clonic Seizures (GTCS)

  • these seizures are what most people picture when they think of a seizure
  • it is when a person loses consciousness, becomes stiff (often falling to the ground) and then starts to shake or convulse. This type of seizure puts people at a higher risk of injury and death
    compared to other seizure types
  • these seizures often last between 1-3 minutes. Should the seizure last longer, the person may need additional emergency care. The clinician may suggest the need for a
    personal emergency care plan, or emergency medication where there is a risk of future prolonged seizures.

There are positive actions you can take to reduce your risks if you have this type of seizure. Read more here.

Nocturnal Seizures (& seizures which happen during sleep)

  • nocturnal seizures happen when a person is asleep, or shortly after waking. This type of seizure puts people at a higher risk of death compared to other seizure types
  • some people may have seizures if they sleep during the day eg: during a nap or if they work shift-work
  • people with nocturnal seizures may not know they are having seizures unless they are witnessed by someone, or if they have a monitoring device such as a monitor or alarm which may alert that they are happening
  • if you have epilepsy and you notice or suspect anything unusual in the morning eg: bruises, bite marks on your tongue, incontinence, extra tiredness, headache, stiffness, speak to your clinician about this.

There are positive actions you can take to reduce your risks if you have this type of seizure. Read more here. Read more about nocturnal seizures here.

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 – 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 rescue or emergency medication) after 5 minutes of generalised tonic-clonic seizure activity

Guidelines (NICE, UK) recommend that emergency medication is started 5 minutes after a person first goes into a prolonged convulsive seizure or if they have 3 or more convulsive seizures in an hour.

Early treatment can stop a long run of seizures. If you have these types of seizures, your clinician can help to develop a first aid or seizure management plan which may include:

  1. the use of rescue or emergency medications to prevent prolonged seizures developing
  2. advising others how to help when you have a seizure, and when to call emergency services

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