Seizures and Risk

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There are over 40 different types of seizures, and they affect people in differently.

Obviously the chance of seizure related risks will be higher when seizures are not controlled.

Although most seizures are spontaneous and unpredictable, there may be circumstances that trigger your seizures that you come to recognise. These can include: stress, sleep deprivation, changes in routine, changes in epilepsy medication or forgetting to take medication.

Recognising your seizure triggers will help you to avoid them as much as you can.

Seizures can sometimes lead to injuries or falls; but they can also occasionally be more serious, even contributing to, or causing death. Different types of seizures carry different risks, so your risk depends on the type of seizures you have, and also your activities and lifestyle. For instance, poorly controlled tonic clonic seizures pose the highest safety risk, and if you go mountain climbing, this risk is elevated.

Life will never be risk-free, but taking positive action to reduce your seizures, thinking about risks specific to you and discussing with your doctor are a start to reducing some of your seizure related risks.

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 taking epilepsy medication it is really important you continue to take it as prescribed unless your doctor 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 notice changes to your health, speak with your doctor 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 or two a year or several a week, is considered to have ‘active epilepsy’. Regular epilepsy reviews with your doctor are recommended. Later on we discuss ways to reduce your risk.

If you have epilepsy and are unsure what type of epilepsy or seizures you have, ask your doctor to explain them at your next appointment. You should also discuss how you could lessen your risks for your specific type of seizure.

Clinical guidelines recommend that people with epilepsy have annual reviews with their specialist, and that they are given information about risk.

See here for SIGN guidelines and NICE Guidelines

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

  • ask people who have seen your seizures to describe 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 taking medication), it is important that you take your medication as prescribed.

(Note: an accurate seizure diagnosis can mean the most appropriate management approach can be taken. Find out more about seizure classifications here).

Not taking your medication, even for a short time can cause more seizures and increase your risk of injury, or in some cases can contribute to seizure related death. If you are having side-effects, or are worried about other effects of your medication, speak with your doctor about the best treatment for you.

Most seizures stop on their own and don’t create a lot of concern but occasionally seizures dont stop and can become life-threatening. This can be called seizure clusters or status epilepticus and is considered a medical emergency.

Having active epilepsy puts you at risk, and there are certain types of seizures which may increase a person’s risk level further. These are:

Tonic-clonic seizures (TCS)

  • These seizures are what most people picture when they think of a seizure
  • It is when a person loses consciousness, becomes stiff and then the muscles begin to jerk rhythmically
  • These seizures usually last less than 2 minutes. However, should the seizure last longer, the person may need additional emergency care
  • When there is a risk of prolonged seizures, a seizure management plan or seizure emergency plan (with emergency medication) is usually prepared.
  • The risk of seizure related death or injury is highest in people who have these seizures.

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

Nocturnal seizures

  • Nocturnal seizures are seizures that happen during sleep. They are a risk factor for seizure related death.
  • People with nocturnal seizures may not know they are having seizures unless they are witnessed, or if they have been detected on a monitoring device
  • If you have epilepsy and you notice anything unusual in the morning such as bruises, a sore tongue, wet bed, tiredness, headache or stiffness, take note and speak to your doctor about this.
  • Some people with nocturnal seizures may have seizures during a daytime sleep or nap.

Read more about nocturnal seizures here.

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

Cluster seizures and status epilepticus

Occasionally, some people with epilepsy can have seizures that are longer than normal. This can happen with any seizure type, but prolonged tonic clonic seizures are  considered a medical emergency and require urgent treatment.

These seizure emergencies may be called:

  • Cluster seizures – where seizures occur one after the other without recovery in between, and can lead to status epilepticus
  • Status epilepticus  – is when the seizure doesn’t stop and there is continuous seizure activity for over
    • 5 minutes for tonic-clonic seizures
    • 10 minutes for focal seizures
    • 10 to 15 minutes for absence seizures
    •  This type of seizure can have serious consequences, even death, so guidelines recommend early intervention (such as  emergency medication) after 5 minutes of tonic-clonic seizure activity

These situations are considered seizure emergencies and early treatment is vital to stop the seizures.

Often in these situations, emergency medication is prescribed to give outside the hospital setting.

If you have these types of seizures, having a seizure management plan (SMP) in place will help ensure quick and appropriate seizure management is taken.

SMP’s may include:

1. The use of emergency medications to prevent status epilepticus developing

2. Advising others what to do when you have a seizure, and when to call emergency services

3. What to do if any contingencies may arise