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This leaflet is aimed especially at those recently diagnosed as having epilepsy or who have had a first fit. Although brief, we have tried to address the most common questions asked by patients and their families and friends. Further sources of information are listed at the end, together with details of the Sapphire Nurse specialist. Most importantly, if you have any concerns or unanswered questions, let us know.
The words seizure and fit mean the same thing – an episode of abnormal electrical activity in the brain. More detail is given in the appendix, but in simple terms these episodes may be convulsive (when the body shows involuntary movements such as shaking and stiffness) or non-convulsive (when the person shows altered awareness). Family, friends and work colleagues need to know how to respond. They should be advised of the following simple measures:
Do not (for any seizure type)
When to get medical help (999)
General safety advice
* For further useful safety information look at: www.epilepsynse.org.uk
Everybody who has had a fit must inform the DVLA, who will advise about any driving restrictions. Your insurance company should also be informed. We strongly advise you not to drive until you have had a ruling from the DVLA. Restrictions placed upon driving depend upon the nature and frequency of attacks and in all cases only the DVLA can give legal guidance.
Most people with recurrent attacks will be advised to take drug treatment to reduce the risk of further attacks. In some cases it might be appropriate to treat patients who have had only a single seizure, if your doctor feels that there is a very high risk of another seizure occurring. It is vitally important that the medication is taken exactly as prescribed. Not doing so increases the risk of having further attacks, including the rare possibility of SUDEP (see below). Other drugs (legal and illegal) and alcohol can affect epilepsy medications and seizure control. Your GP may not have sufficient knowledge about your drugs, even though they prescribe them for you – if in doubt, speak to your epilepsy specialist or Sapphire Nurse.
Very rarely, people may die during the course of a seizure. That can be due to physical consequences of the fit (eg falling under a car or drowning) but can also occur due to presumed heart or breathing problems caused by the fit itself (called Sudden Unexpected Death in Epilepsy). The most important protective factor is to make certain that you take your medication as prescribed, and avoid substances that can provoke fits, such as alcohol and illicit drugs.
Women need to be aware of issues relating to:
Contraception – hormonal methods (the pill, depot injections, implants) can be affected by some of the drugs used to treat fits. The major potential problem is unexpected pregnancy (see the next section), but also some hormones can affect the anti-epileptic drugs and increase the risk of fits. Effective contraceptive options are available and must be discussed. You are encouraged to be pro-active in discussing effective options (unprotected sex is not advisable) and do let your health care professional know if you are considering a planned pregnancy.
Pregnancy – the drugs used to treat fits can affect the baby in the womb, and babies may be born with physical or developmental problems. The risks are in general small, and have to be balanced against the benefits to the mother of stopping her fits. Detailed discussions before pregnancy are essential. Breast feeding is usually not a problem. Sodium Valproate has a potential 10% risk of physical abnormalities in babies who have been exposed through their mother during pregnancy. You should inform your health care professional as soon as you find out you are pregnant and are taking any anti-epileptic medication. Do not stop your medication prior to medical advice however.
Menopause – epilepsy may be affected by hormonal changes, and HRT hormones may affect some anti-epileptic drugs. Discuss potential interactions and your options with the prescribing doctor.
Appendix: Names, meanings and definitions
The word seizure means an episode of abnormal electrical activity in the brain. It may be restricted to just one part of the brain (partial seizure) or affect the whole brain (generalised seizure). Depending upon which part of the brain is affected, partial seizures may cause abnormal sensations or involuntary movements in parts of the body, an odd sense of smell, distorted memory (eg déjà vu), or disturbed vision. Sometimes these episodes occur without any alteration of consciousness or awareness (simple partial seizures), but often there is impairment, but not loss, of consciousness (complex partial seizures) – the individual seems confused and distant and may not be able to speak coherently.
When the abnormal electrical activity affects the whole brain it is called a generalised seizure and that takes two main forms. In an absence seizure (previously termed petit mal), which is most common in childhood, the person looks vacant and is unresponsive, and their eyes and eyelids may flicker, but they don’t fall. In a convulsive or tonic-clonic seizure (previously termed grand mal) the person loses consciousness, falls and has stiffness and shaking of the limbs. They may bite their tongue due to spasm of the jaw muscles. On recovery they may be very confused or sleepy.
The word epilepsy simply means that an individual has had two or more seizures during their lifetime, but doesn’t describe what type of attacks they have had or why they have had them. Primary epilepsy means that there is no underlying structural abnormality of the brain to explain the problem. Secondary epilepsy indicates that there is an identifiable abnormality causing the seizures – that may include brain damage from a stroke or head injury, brain tumour, or abnormal development of the brain.
Sapphire Nurse Specialist
Alison Taylor, Sapphire Nurse Specialist, Neurological Clinical Specialist Team, Bletchley Community Hospital, Whalley Drive, Bletchley, Milton Keynes, MK3 6EN.
Monday – Thursday – 0800-1800hrs; Telephone: 01908 378229 or mobile: 07876 791455; 01908 660033 Ask to bleep 1684; email: [email protected]
*Telephone Advice Line 01908 378229; Monday and Wednesday; 0800-1000 hrs; *This is not an emergency service. If you have an urgent medical problem, please contact emergency/out of hours services.