Living with Epilepsy

General paediatrics, Neurology

Driving

In UK, driving is forbidden after a single epileptic seizure.  If seizure happens after age of 5, permanent ban on driving HGV, passenger service vehicles, racing.

Reinstatement of license depends on seizure free period, and whether seizures have occurred only during sleep or not.  You can reapply if you haven’t had an attack for at least a year.  If you had a seizure because your doctor changed or reduced your anti-epilepsy medicine, you can reapply when:

  • the seizure was more than 6 months ago
  • you’ve been back on your previous medication for 6 months
  • you haven’t had another seizure in that time

If your seizures have only been during sleep, you need at least 12 months seizure free.  If seizures have been when awake as well as in sleep, then must have been 3 years with only seizures in sleep.

If however generalized spike and wave activity on EEG, then reinstatement cannot occur.  DVLA seem to retain the right to decide on individual basis.

Death and Accidents

SUDEP (sudden unexpected death in epilepsy) should be discussed at or around the time of diagnosis.  There is a tendency for professionals to avoid talking about it.  Evidence from review of cases is that deteriorating seizure control in preceding 3-6 months common, as is lack of regular clinic review.

Discuss safety esp bathing, swimming, cycling.

There are numerous devices and tools available.  Unfortunately, no single type of monitor (movement, breathing, ECG, EEG) likely to be sensitive.  But important to have balanced approach – consider risk of events, likelihood of false alarms, and the fact that no device can guarantee that SUDEP will not occur.

The best way to prevent SUDEP is to stop seizures occurring in the first place!

BMJ safety checklist

EpSMon is a patient app.

Another useful source of objective information is the latest Cochrane Review on SUDEP interventions.

Other things to consider:

  • Medical ID cards or Jewellery
  • Seizure alert dogs
  • Seizure alarms – phone app, else local authority may be able to provide, else charities
  • Anti-suffocation pillows
  • protective headgear

In a UK review of epilepsy deaths.  15% related to status epilepticus, 15% SUDEP.  Majority due to co-existing morbidities.  24% considered preventable, usually related to fragmentation of care, support for families in responding to emergencies, and hospital response to acutely unwell child (incl status). [BPS poster]

Contraception

Women taking anticonvulsants and oral contraceptives have 25 times the risk of pill failure as normally expected, due to action of some anticonvulsants (eg phenytoin, phenobarbitone, primidone, carbamazepine, and ethosuximide) on the hepatic microsomal enzyme system, resulting in a dramatic decrease of circulating oestrogens.  Discuss with pharmacist, as complicated!

Contraception also important if potential teratogenic effect esp valproate.

Family Support