SUDEP Action

Making every epilepsy death count
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Controlling your seizures

Why not make an appointment to discuss this and the ways in which you can reduce risk? Ask to see a specialist if you have not yet had the opportunity or you feel your epilepsy is not very well controlled. Together, you can draw up a plan to cut down the number of seizures you have and ideally become seizure-free.

Health professionals can give you a plan which includes informing others what to do when you have a seizure and advise others on when to call the emergency services. If you experience convulsive status this plan may include epilepsy rescue medications which are used to prevent status epilepticus developing.

In some areas of the UK, there may be a specialist epilepsy nurse as part of the local team, who can play a role in informing your family and friends about first aid.

Other points you may wish to consider in your plan are:

  • The importance of getting your medication right

Anti-epileptic drug (AED) treatment is recognised as the most effective way to control seizures.  Your medical team will need to have precise information about the number, frequency and type of seizures you have, in order to prescribe the correct drug at the appropriate dose.  If you continue to have seizures, ask to be referred again to an epilepsy specialist for a review of your diagnosis and treatment options.

  • Dealing with side effects

A common reason that some people continue to have seizures is that they do no’t take their medication as prescribed.  Sometimes this may be due to the side effects they experience.  Before you take a decision to stop taking your medicine, it is important to talk to a specialist to see if there is a possibility of making a change or looking at other treatment options.  Your medical team will help you balance control of seizures and the avoidance of side effects.

If you are a woman, you may have particular concerns about contraception and taking medication whilst pregnant.  Ask for pre-conception counselling to consider how to reduce any risk from seizures and side-effects of medications to both you and your unborn child.

  • Avoiding triggers for seizures
  • Regular check-ups.  Do not forget to attend your annual review, even if you are not experiencing seizures at the time.