Regular checks and public awareness can reduce its impact, says Dr Mel Wynne-Jones
Over half a million people in the UK (one in every 100)have epilepsy, a neurological condition that triggers recurrent seizures.
These are caused by sudden abnormal electrical activity in brain cells, which spreads rapidly, causing part or all of the body to malfunction temporarily.
It commonly starts in childhood and may affect other relatives.
It can also be a feature of about 200 genetic conditions, including learning disability.
But epilepsy can also start in later life, as a result of a head injury, stroke, brain tumour, meningitis or drug/alcohol misuse – or for no obvious reason.
Seizures usually follow their own usual pattern. Simple partial or focal seizures can produce odd sensations (taste, smell, tingling) or emotions, including déjà vu (a feeling that events are repeating themselves).
Complex seizures also trigger abnormal movements and affect awareness, so they are not remembered.
Partial seizures may be a ‘warning’ (aura) before a generalised seizure. This may include ‘absences’ (petit mal – common in children), single muscle jerking, sudden overall muscle weakness or a full convulsion (muscle rigidity and unconsciousness, followed by rhythmic jerks).
The person may bite their tongue, injure or wet themselves, breathe erratically, wake up confused, or have several fits in a row. Sadly, up to 1,000 people a year die suddenly from SUDEP (sudden unexplained death in epilepsy).
It’s more common in younger people or those who have linked conditions, night-time or frequent fits.
An eyewitness account or video recording can really help your doctor, as many conditions can resemble or trigger seizures, including simple faints, heart problems, migraine, mini-strokes and metabolic disorders.
You may need blood tests, a heart tracing, an EEG (electroencephalogram – that records brain electrical patterns) and/or a CT or MR brain scan. But epilepsy isn’t usually diagnosed unless you’ve had more than one seizure – many people never have another.
Living with epilepsy
Knowing and avoiding possible triggers such as stress, lack of sleep, missed medication, alcohol and relevant drugs (prescribed or street) and flashing lights may lower your risk of having a fit (and of SUDEP).
So keep a diary, and tell your doctor if you think your hormones or menstrual cycle may be relevant.
Around 70% of people need medication. Your diary will help you to work with your neurologist (consultant) and GP to minimise the number of fits and side effects.
Tell them if you’re planning a baby, as some drugs are harmful. Depending on how your epilepsy affects you, you may need to tell your employer (so people know how to help) and the DVLA (driving may eventually be allowed).
The keys to good control are self-care, including a healthy lifestyle, and regular medical reviews.
You may find the Expert Patients Programme helpful.
Call Epilepsy Action’s helpline on 0808 800 5050 or the Epilepsy Society on 01494 601 400.
8 things to do that can help
1 Note the time and monitor how long the seizure lasts.
2 Check/remove hazards to the person or yourself, for example traffic or electricity.
3 If the person is unconscious/jerking, remove sharp, solid or hot items that could injure them but don’t put anything (including fingers) in their mouth.
4 Loosen tight clothing at their neck, and cushion their head, for example with a coat.
5 When the fit stops, if they don’t come round, turn them into the recovery position (only if you know how to do this).
6 Keep talking quietly and reassuringly, even if they don’t seem to hear.
7 If the fit lasts more than five minutes, recurs, the person is injured or confused, or it’s their first seizure, call 999.
8 Visit epilepsy.org.uk now to watch a helpful video.