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Epilepsy

Long-term management of recurrent seizures with treatment tailored to seizure type and individual needs

What is epilepsy?

A seizure is a burst of disordered electrical activity in the brain. What it looks like depends on where it starts and how far it spreads: a few seconds of blankness, a strange smell or a rising feeling in the stomach, jerking of one limb, or a convulsion with loss of consciousness. Epilepsy is the diagnosis given when the brain has a lasting tendency to produce them, which in practice usually means two unprovoked seizures more than a day apart.

About half the time a cause is found: scarring in the temporal lobe, an old head injury, a stroke, an injury around birth, an infection such as meningitis or neurocysticercosis, an area where the brain's wiring formed abnormally, or a genetic tendency that runs in the family. In the other half the scans and the blood tests are normal and no cause is identified, and that group often responds particularly well to medication.

Most people with epilepsy stop having seizures on tablets. Roughly half are controlled by the first medicine they are given and a further group by the second, so around seven in ten settle on one drug taken daily and carry on driving, working and having children. Seizures that continue after two well-chosen medicines have each been taken at a full dose for long enough are called drug resistant, and it is that smaller group for whom an operation becomes a serious question.

What you might notice

  • Episodes of jerking or lost awareness that keep happening
  • A child who blanks out and stops responding for moments
  • A child who has had a fit during a fever
  • Dizzy spells or near-blackouts

How it is diagnosed

The history carries more weight here than any scan. Your doctor asks exactly what happened before, during and after the event, and asks whoever was watching, since you cannot describe the part where you were unconscious. Bring a phone video if anyone took one. What they are separating out is a seizure from a faint, from a disturbance of heart rhythm, and from the non-epileptic events that look similar and are treated in an entirely different way. Triggers count too: sleep lost, alcohol, a missed dose, a long stretch in front of a flickering screen.

An EEG records the brain's electrical activity through electrodes on the scalp for about half an hour, usually with a spell of deep breathing and a flashing light to bring out abnormal patterns. It supports the diagnosis and it points to which type of epilepsy you have, and the type is what decides which medicine suits you. A normal EEG does not rule epilepsy out, so a sleep-deprived recording or a longer one over days is arranged when the first is unhelpful.

MRI of the brain looks for the causes worth finding: a scarred hippocampus, an area of malformed cortex, an old injury, a tumour. Blood tests and an ECG are done alongside to exclude the conditions that imitate seizures. Where seizures later prove resistant to medication, the MRI is read again against an epilepsy protocol, which is a more detailed reading than a routine scan of the head.

Recovery

Control is what getting better looks like. A medicine is started low and built up over a few weeks to keep the drowsiness manageable, and judging it then takes time measured against your own pattern: if your seizures came monthly, three months without one says something, and if they came once a year it takes far longer. Your neurologist will usually let a drug reach a full dose before calling it a failure. Keeping a diary of every event, every missed dose and every bad night of sleep is what makes the next appointment useful.

Driving is governed by a seizure-free period set by the licensing rules and counted from your last seizure, and it is worth asking your neurologist to write down the date you become eligible. Swimming alone, working at height and cooking over an open flame are handled the same way, by how long you have been free of seizures.

After a long spell without one, often taken as two to three years, coming off medication can be discussed. It is done one drug at a time over months, with a plan agreed in advance for what to do if a seizure happens during the reduction. Many people stay free of seizures afterwards; some find they return and go back on the tablet that was working. Where two medicines have already failed, the referral for surgical assessment is made early, since years of uncontrolled seizures cost memory, schooling and work.

If it is left untreated

A single seizure with a normal EEG and a normal MRI is often watched instead of treated, since a good number of people never have a second one, and holding off is a reasonable decision to take with your neurologist. Treatment starts once the tendency to recur is established.

Seizures that go on untreated accumulate risk. Falls cause fractures and head injuries, burns and drowning happen in ordinary kitchens and bathrooms, and driving, employment and living alone are often lost along the way. Memory and attention decline faster in uncontrolled temporal lobe epilepsy than in epilepsy that is controlled. Uncontrolled convulsive seizures also carry a small annual risk of sudden unexpected death, and that risk falls as control improves. Stopping tablets abruptly is one of the commonest reasons a controlled epilepsy stops being controlled.

A convulsion lasting more than five minutes, or a second seizure starting before the person has recovered from the first, is status epilepticus and needs an ambulance. So does a first-ever seizure, a seizure with a head injury, one that happens in water, or one followed by weakness that does not clear.

Questions about epilepsy

Does epilepsy mean I will end up needing brain surgery?

Almost certainly not. Around seven in ten people with epilepsy stop having seizures on one daily medicine, most of them on the first or the second drug tried, and they need nothing beyond regular review. Surgery is considered for the minority whose seizures continue after two well-chosen medicines have each been taken at a full dose for long enough, and even within that group an operation is only possible when the seizures always begin in one place that can be removed or switched off safely. Reaching that point takes an admission for video EEG, imaging read specifically for epilepsy, and formal memory and language testing, all discussed by a team before anything is offered to you. If you have just been diagnosed, the realistic next step is a tablet and a follow-up appointment to see whether it works.

What should someone do while I am having a seizure?

Tell the people you live and work with, because the right response is mostly to keep you safe and let the seizure finish. They should note the time it starts, move hard or hot objects out of the way, and put something soft under your head. Nothing goes in your mouth and you should not be held down. Once the jerking stops you are rolled onto your side and stayed with until you are properly awake, which can take twenty minutes or more and often includes a spell of confusion you will not remember. An ambulance is needed if the convulsion lasts more than five minutes, if a second one starts before you have come round, if you are injured or in water, or if it is your first seizure.

Can I take these medicines if I want to become pregnant?

Most women with epilepsy have straightforward pregnancies and healthy babies, and planning is what makes the difference, so raise it with your neurologist before you start trying. Some anti-seizure medicines carry a far higher risk of malformation and developmental problems than others, sodium valproate most of all, and a drug can usually be changed to a safer one and settled at a stable dose well before conception. A higher dose of folic acid is started in advance. Several of these medicines also make hormonal contraception less reliable, and some contraceptives lower the level of the medicine in your blood, so the two are checked together. Never stop or reduce a tablet on your own when you find out you are pregnant, since an uncontrolled convulsion puts the baby at more risk than the medicine does.

Other neurology treatments

Diagnosis and treatment of recurring headaches with features such as throbbing pain, nausea or sensitivity to light and sound

Day Care

Treatment and supportive care aimed at managing movement symptoms and maintaining independence

Day Care

Talk to a care coordinator about epilepsy

Leave a number and a care coordinator calls you back with what the treatment involves and which hospital it would be at. They book a consult only if you want one

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