SUDEP Action

Making every epilepsy death count
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Seizure Awareness

As someone with epilepsy, you may well be aware that seizures bring a number of risks. They can affect your awareness or judgement, for instance, or lead to a fall. Less well known is that the seizures themselves can be risky too though, particularly if they last a long time, occur in a cluster or interfere with your breathing or heart rhythm.

You should be particularly aware of the following types of seizures:

  • Generalised tonic-clonic seizures (sometimes called ‘grand mal’).
  • Seizures that take place during sleep.
  • Convulsive seizures that last a long time (called status epilepticus or just ‘status’).
  • Convulsive seizures that occur in a cluster.

If you are not seizure-free you may want to make an appointment with your doctor.  If you do not know ask your doctor: 

  • Which type(s) of seizures you experience.
  • For a care plan which takes account of the risks from your seizures.

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

  • Ask people to tell you about your seizures.
  • Keep a record or diary of your seizures.
  • Invite someone who has seen your seizures to a medical appointment.

Being seizure aware can help in controlling  them.  Although seizures are spontaneous and unpredictable, there may often be triggers that you come to recognise.  These may include getting anxious, stressed or excited.  Sometimes people are affected by lack of sleep, too much alcohol or the fact that they ha’ve taken recreational drugs.  Seizures can also be triggered by rapid changes in medication or if you forget to take your tablets.