"We want to make it very clear that most people with epilepsy whose seizures are well controlled are not considered to be at risk of S.U.D.E.P" (Jane Hanna, Director of Epilepsy Bereaved)

• Epilepsy is a condition about which there are still many misconceptions and, though it is accepted that an asthma attack or a diabetic coma can be fatal, it is a little known fact that a person can die from epilepsy itself.

• Every year in the U.K. around 500 people with epilepsy die from an accident, such as drowning, that occurs during a seizure or from a condition known as status epilepticus where one seizure follows another without a person regaining consciousness. However, another 500 people with epilepsy die from a little known syndrome called Sudden Unexpected Death in Epilepsy (SUDEP). In SUDEP no specific cause of death is found and research to date indicates that deaths of this nature typically occur in healthy, young adults, particularly male, who experience tonic-clonic (grand mal) seizures.

• Risk factors of SUDEP include poor seizure control, night-time seizures, un-witnessed seizures, abrupt and frequent changes in medication, not taking medication as prescribed and alcohol. It does not mean that because a person experiences one or more of these factors that they will die from SUDEP.
  

• As far back as 1864, the Medical Journal called 'The Lancet' recognised the risk of death in epilepsy and reported that 2406 people had died due to the condition. Today, largely due to the impetus of a charity called Epilepsy Bereaved, awareness of epilepsy deaths has once again been raised through the media, other epilepsy organisations, conferences, and through an official Audit into Epilepsy Deaths in the U.K. published in May 2002.

• It is crucial that everyone with epilepsy has information about SUDEP and knows the risks involved in failing to take control of their seizures. It is then up to the person concerned to make their own decisions. Sometimes, however, the Medical Profession keeps quiet about the risks of epilepsy and the decision to withhold information, though possibly based on a desire not to cause undue alarm, may be viewed as patronising in the assumption that people with epilepsy and their families will not be able to handle it.

• Asthma and Diabetes risks are known, and Cancer patients these days are also told the full facts about their condition.
  

• Most people with epilepsy whose seizures are well controlled are not at risk of dying from a seizure. Risks are reduced by regular medical monitoring, appropriate medication, measures to minimise the risks of seizures, safety during and after a seizure, and a life-style that is beneficial for the control of seizures.

• If a Doctor suspects that a seizure may be epilepsy, a referral to a Neurologist should be made as soon as possible for (painless) tests and diagnosis.

• When medication is first prescribed, some trial and error may be involved before the right treatment is found. It is vital to take the right dose at the right time, as prescribed by the doctor in order to achieve the best level of seizure control. Regular reviews of medication, side-effects, seizure control, and impact on lifestyle are very important. A lower than needed (sub-therapeutic) level of medication may actually cause a seizure. Avoid abrupt and frequent changes in medication. Once settled on medical treatment for epilepsy always consult the doctor if more seizures than usual are experienced or medication cannot be taken for any reason, for example, sickness, before starting a family, and if pregnant.

• A 'seizure diary' is useful to help identify factors that may affect or cause a seizure e.g. whether a seizure occurred at night-time or during the day, how severe it was and what triggers may have been responsible. Seizures often occur without warning but there are certain triggers that may set them off. Late nights, too much stress, skipping meals, excess alcohol, illness, drugs are all common triggers for a seizure. Sensible living means being responsible and learning what does and doesn't trigger a seizure.

• There are safety first measures that can be followed in order to make surroundings as safe as possible and to minimise any risks during leisure and sporting activities. However, any potential risk depends very much on the individual nature of a person's epilepsy, for example, how frequently seizures occur, their severity, and whether they happen during the day or night.

• Knowing First Aid makes everyone feel more confident. A person having a seizure should never be left alone and have someone to say with them for 15-20 minutes after the seizure is over to ensure that they are breathing easily. An ambulance should be called if a tonic-clonic seizure lasts more than a few minutes or one follows the other without the person regaining consciousness (status epilepticus), it is a person's first seizure, a person is badly injured during a seizure or has inhaled water, or the person having the seizure is pregnant.

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Published on: 2007-05-14 (3529 reads)