SUDEP - Safety Information

How to reduce risks of SUDEP and other causes of epilepsy death.

The most effective way of reducing the risk of SUDEP is to achieve complete control of seizures. There are precautions that can be taken to reduce seizures and the risks from seizures. These measures should be discussed with the GP and/or specialists involved in the treatment of epilepsy.

Click Here to see side 1 of the "Be safe – Reduce risk" leaflet.

Click Here to see side 2 of the "Be safe – Reduce risk" leaflet.

The following is a guide to the appropriate areas for discussion:

	Prompt diagnosis and treatment by a specialist with an interest in epilepsy.
	Avoid triggers for seizures where possible. Common triggers are lack of sleep, too much alcohol or forgetting medication, but triggers are very individual to each person. Keeping a diary of seizures is a good way of getting vital reliable information for yourself and the doctors and nurses involved in the management of the epilepsy. Avoid sudden changes in the taking of medication.
	Getting the medication right. Specialists can provide information on the range of treatment options available.
	No matter how often or severe your seizures are there are nearly always options that can be built into a care plan to at least reduce seizures. Brain surgery is sometimes an option and successful surgery can reduce a person’s risk from sudden death to the same as anyone in the general population.
	Understanding your epilepsy. List what you want to know about and ask your GP for a consultation to discuss the issues that affect you with a health professional who has a good knowledge and understanding of epilepsy. This may be with an epilepsy specialist nurse or with a GP with an interest who work in a team with your consultant. Helpful websites can be accessed at www.jointepilepsycouncil.org.uk
	If seizures continue to occur go back to the specialist and ask for a review of your diagnosis and a discussion about other treatment options for your epilepsy.
	Regardless of whether you are continuing to have seizures or not ask for a regular review. The frequency of review needs to be discussed with your GP but ought to be at least once a year. A yearly review allows for discussion of lifestyle issues e.g. whether to withdraw medication once a person is seizure free for a significant amount of time or the planning of preconception counselling.
	If you have a difficult to control epilepsy you may be entitled to a referral to a specialist centre. (See two-page summary of NICE guidance for more information about when you should be referred to a specialist centre).

Safety Measures for Seizures

Epilepsy is a very individual condition. A person’s seizure or types of seizure, including frequency, duration and severity can vary enormously from one person to another. It will depend on what happens during your seizures as to the necessary safety precautions you will need to consider.

You may already be aware of common safety measures to avoid accidents with seizures. There are a number of safety measures relevant to seizures:

Some simple safety measures

	Showering rather than bathing or having a shallow bath and fitting a thermostat so that the water does not get too hot.
	Using an occupied notice on the door to the bathroom rather than locking doors.
	Using fireguards, smoke alarms and fire retardant materials and power breakers with electrical tools. In the kitchen use of a microwave cooker reduces the risk of burns from direct sources of cooking heat.
	Avoiding high-risk situations e.g. heights, waterfronts.
	When swimming, ask the attendant at the pool to keep an eye out for you, or alternatively, go swimming with someone, rather than going alone.

Seizures at night

	It may be preferable to have a futon or other bed, which is low on the ground.
	Some people choose to use solid foam pillow with air holes , but there is no positive evidence that these reduce risk.
	Some people choose to use a sleep monitor. There has, as yet, been no published independent research on sleep monitors, but information about this is obtainable from epilepsy organisations.
	If you or a member of your family is in residential care or other institution whether they have a risk policy including responding to night seizures.

First aid

Carrying identification that gives information about your epilepsy, how it affects you and what someone needs to do if you have a seizure is a good idea. It may also be helpful to include details of the medication you are taking.

It is important that people know what to do when a convulsive seizure occurs. First Aid procedures are simple to follow:

	Keep calm. Let the seizure run its course and do not do anything to try to stop it.
	If possible, put something soft under the person’s head and move away objects to prevent injury.
	After a seizure lay the person on their side and stay with them for 15-20 minutes to ensure they are breathing easily and to check their colour is normal.
	It is not necessary to call an ambulance unless: the person is injured; the seizure does not stop after a few minutes; a seizure follows closely after another; they are having trouble breathing or if you don't know the types of seizure the person has and are anxious about what to do.

Resuscitation

Where risk factors of SUDEP are present carers may wish to find out from their doctor where they can receive a basic knowledge of resuscitation techniques.