Epilepsy: what general practice nurses need to know

With around 1% of the population being treated for epilepsy it is important for general practice nurses to know enough about the condition and the medications used to be able to support patients, as well as how to respond in an emergency

Accounts of epilepsy go back to before the time of Hippocrates, who termed it ‘The Sacred Disease’. He suggested treating epilepsy with a combination of herbs and dietary adjustment. At one time it was not uncommon for people with epilepsy to be locked away in a lunatic asylum, partly because of the alarm caused by a seizure to bystanders, and partly because of fears that epilepsy may be contagious. People with epilepsy are not necessarily disabled: historical figures who had epilepsy include Alexander the Great, Julius Caesar, Handel and George Gershwin. The patron saint of people with epilepsy is St Valentine.

According to the Joint Epilepsy Council, there are about 600,000 people in the UK who take medication for epilepsy, or around 1% of the population.¹ An average general practice with a list of 5,000 patients can expect to have about 50 people coded with epilepsy. Nationally there are over 30,000 new diagnoses a year. The most common ages of onset are in childhood, and after the age of 60 (the younger group will tend to have epilepsy where no underlying cause can be identified; over 60 there is more chance of the epilepsy being the result of another illness such as stroke).

In addition, it is estimated that epilepsy has a ‘misdiagnosis rate’ of up to 30%: these are the people with the diagnosis who do not in fact have epilepsy. The differential diagnosis of epilepsy includes faints, breath-holding, transient ischaemic attacks (TIA), hypoglycaemia and complex migraine. Some people even fabricate seizures – ‘pseudoseizures’.

As far as the Quality and Outcomes Framework (QOF) is concerned, the slimmed-down version for this year has only 1 point – for having a register of patients with epilepsy. This compares with the 15 points on offer in 2008-09, when there were additional requirements for a record of seizure frequency, a record of medication review, and a record of those who had been seizure-free for 12 months. Many general practice nurses will have become used to doing formal reviews for epilepsy. The fact that they are no longer required by the QOF does not mean that keeping a proper eye on people with epilepsy has become irrelevant, just that the Government has chosen to hope that practices will still do the work but without getting paid for it.

DIAGNOSIS

The epilepsies are a group of conditions and there are at least 40 different types.¹ A detailed report of what exactly happened during the seizure event will go a long way to establishing a diagnosis, so that the information given by a witness is most valuable.

NICE Clinical Knowledge Summaries (CKS)² recommend that the following features of a seizure be enquired after:

• Risk factors: Did anything trigger the event (e.g. on waking, sleep deprivation, flashing lights)?; is there a family history of epilepsy?; is there any known brain injury (trauma, stroke, toxin such as alcohol abuse)?; anything to suggest something other than epilepsy? Only about 3% of people with epilepsy are sensitive to flashing lights.¹
• Was there any warning of the seizure (aura) such as: unexpected tastes; smells; paraesthesia; or a rising abdominal sensation?
• The character of the seizure? Typical features include:
  • Impairment of consciousness and stiffening (tonic) – the trunk may be straight or bent at the waist
  • Clonic seizures cause impaired consciousness and jerking
  • Tonic-clonic seizure, alternating stiffness and jerking with impaired consciousness
  • Absence seizure (usually starting in childhood) – the child stops and stares for usually 5 to 10 seconds, possibly with slight flickering movements of eyelids and fingers. May occur up to hundreds of times a day
  • Myoclonic – brief spasms of the limbs with no loss of consciousness
  • Atonic – sudden loss of muscle tone causing a fall, usually with some loss of consciousness
  • Focal seizure – jerking movements that start in just one area (typically one side of the face or one hand) and then spread to involve other limbs. Sometimes the seizure does not cause any physical movement, but a temporary change in sensation, emotion or thinking.
  • Post-ictal – when the seizure is over there are often some residual symptoms: drowsiness; memory loss; injury (typically a bitten tongue); aches in limbs or head.

About 60% of people with epilepsy have the tonic-clonic seizures that most people associate with epilepsy, and under 5% have absence seizures or myoclonic seizures.¹ For the rest, the pattern is often complex with a mixture of different types of seizure (a person with epilepsy may have more than one type of seizure), which requires a specialist to sort out: for these patients the task of primary care is to be suspicious and refer and advise accordingly.

CKS recommends that all people suspected of having epilepsy should be referred for specialist assessment.² Epilepsy is confirmed by abnormal brain electrical activity, so that anyone with suspected epilepsy should have an electro-encephalogram (EEG). If you are involved with triaging patients, any suspected first seizure should be seen by one of your medical colleagues. You will not be making a diagnosis of epilepsy on your own.

ONGOING SUPPORT NEEDS

Developing epilepsy has lifelong implications, and it may well be that the practice nurse will be called upon by patients for support after the diagnosis has been made, and at other times. The Epilepsy Society³ has produced a free ‘Just Diagnosed’ pack dealing with the sort of issues that concern patients who have recently received the diagnosis (see Box 1). Life will probably not be the same again. The seizures may not be fully controlled. Any medication required may have side effects. There may be effects on work, and especially driving. The recently diagnosed may carry the same prejudices about epilepsy as others in the population, and feel stigmatised. In many respects the adjustment process can be seen as a loss reaction: loss of health; loss of employment and life opportunities; loss of control; loss of self-image.

FIRST AID

Primary care workers and the family and friends of people with epilepsy should make themselves aware of what to do if a seizure is witnessed. A seizure lasting less than 5 minutes can usually be managed without needing medication. NICE/CKS recommendations are given in Box 2.

In the immediate aftermath of a seizure the next consideration is whether your patient needs to be sent to hospital. Seizures that occur in public places, particularly if there is post-ictal confusion, will often result in an ambulance being called. For many this is a reasonable management strategy. However, some patients will resent such an intrusion and fuss, having come to terms with their epilepsy and decided that they are well enough to be at home and do not want their medication to be tinkered with.

Epilepsy carries a risk of death. In the UK, over 1,000 people a year die because of epilepsy, and in a tenth of these, the patient is under 25 years. Nearly half of deaths are, in retrospect, probably avoidable. It is estimated that the years of life lost for each epilepsy death is more than 30 years.¹

MEDICATION

People with confirmed epilepsy are usually offered medication. Even when the epilepsy has been provoked by a stroke, a brain tumour or a head injury, medication is usually used as an adjunct to any other treatment. People with epilepsy are exempt from payment of prescription charges, not only for their epilepsy drugs but for all prescribed medication.

In about 70% of people with epilepsy the seizures can be stopped with medication.³ The drug or drug combination recommended will depend on the type of epilepsy. For example, for tonic-clonic seizures (the commonest type) NICE4 recommends using carbamazepine, lamotrigine, oxcarbazeoine or sodium valproate. For all these drugs it is recommended that the same manufacturer’s product be used every time2 – this is one of those rare situations when the generic is not as good as the branded product. Different manufacturer’s products have different bio-availabilities, depending on what the drug is mixed with to bulk out the tablet, and how the tablet is held together. Getting the dosage right is important in order to get the benefits of treatment but without causing drug toxicity. The gap between a dose too low to be effective and one high enough to cause toxicity may be very small – the drugs have a small therapeutic window – so even small variations in effective dose can cause problems.

Side effects.

All epilepsy medication is designed to reduce brain electrical activity, and so adverse effects are inevitable. A glance at the British National Formulary section on epilepsy will show long lists of side effects, many of which are termed ‘very common’.⁵ Adverse effects of anti-epilepsy drugs are a major cause of drug withdrawal. They include:²

• Drowsiness, lethargy, and loss of concentration. This lack of mental alertness is understandably greatly resented, even if the only alternative is to allow the seizures to continue unsuppressed.
• Nightmares, aggression, or agitation. Epilepsy is a problem for the person with epilepsy, and also for those around him.
• Suicidal thoughts and behaviour — this applies to all anti-epilepsy drugs and may be seen as early as one week after starting treatment.
• Headache, visual disturbances, tremor, and ataxia. Feeling unsteady and out of control can cause significant problems with confidence.
• Weight gain or loss, and hair loss or unwanted hair growth. Weight control for people with epilepsy can be a constant struggle.
• Menstrual disturbances. About half of women with epilepsy who have periods report an increase in seizure frequency around the time of menstruation. Also, polycystic ovary syndrome is more common in women with epilepsy, and this may cause oligomenorrhoea.³
• Gum enlargement or overgrowth – overgrowth can be reduced by meticulous daily oral hygiene
• Skin rashes — rashes can occur in up to 10% of people taking carbamazepine, phenytoin, or lamotrigine. Most rashes are mild and resolve on discontinuation of the drug.

Dealing with side effects.

Even though all drugs used to treat epilepsy have many of the same possible adverse effects, this does not mean that the side effects are identical and that it is not worth trying another drug if one drug is causing problems. Many people who have recently been diagnosed with epilepsy need regular adjustments to their drug regime anyway until an optimum balance is achieved between benefits and drawbacks. Generally people with epilepsy become more tolerant of their drugs with time, so sometimes a bit of watchful waiting is appropriate if finding the best treatment is causing a problem. It is usual to try different single drugs at first and only use combinations of drugs if good control and side effect tolerance is not achieved.

Some adverse effects, such as drowsiness, lethargy and ataxia, become more of a problem when the dose of drug is too high. In previous years it was normal to do ‘drug levels’ as a matter of periodic routine. Now this is not considered necessary unless there are concerns about toxicity (dose too high), or lack of benefit (dose too low).

Because of side effects, drug adherence can be a problem. However, side effects are not the only reason for non-adherence, and it is sensible to enquire about the reasons why your patient is not taking his or her tablets as prescribed – you might be surprised. Adherence can be improved by concordance: does your patient agree with the diagnosis; with the treatment being used; is he or she happy with the care he or she is receiving; are there other life issues which might be interfering with treatment (for example, drinking alcohol lowers the epilepsy threshold, making having a seizure more likely)?

Drug interactions

Many of the drugs used for epilepsy stimulate liver enzymes. Many other drugs are metabolised in the liver, and if the liver enzymes are more active this means that the effect of these other drugs is decreased (the drugs get metabolised quicker into inactive forms). Another glance at the interactions section of the BNF5 will confirm that this has an impact on a wide range of drugs, and this is particularly important when the other drug being used also has a small therapeutic window. For example, taking carbamazepine reduces the effect of some very important drugs such as warfarin, clopidogrel, cytotoxics and statins.

When someone is taking drugs for epilepsy, look carefully for the possibility of drug interactions – the practice software should alert you when you attempt to prescribe another drug.

THE WIDER CONTEXT

1. Disability. Over 10% of all people with epilepsy are receiving disability benefits.² There are some jobs that people with epilepsy cannot do. Many people with epilepsy are also financially deprived, and this brings with it another long list of medical consequences. Your patients may need support with such issues as housing, disability benefits, travel passes etc. Other support can be obtained through the local social services department, advice centres, or epilepsy charities. One in five people with a learning disability also has epilepsy.¹

2. Driving. As might be expected, driving is affected by epilepsy, and the rules and regulations are strict. Basically the person is not permitted to drive a car within a year of having a seizure. Like all legal rules it is not quite that simple, and anyone who tells the DVLA that they have had a seizure (and it is a legal requirement to do so) will suddenly be deluged with a mountain of forms requiring further information. Some people with epilepsy will need help filling in these forms.

Driving while likely to have a seizure is regarded as a serious offence: the General Medical Council allows doctors to report to the DVLA anyone who they know is driving while having uncontrolled epilepsy.⁶

A lorry or bus driver who develops epilepsy is not allowed to do the job for 10 years, and then only if they have not had to take antiepileptic drugs for 10 years. After a single seizure (epilepsy is only diagnosed when there has been more than one seizure) then driving a bus or lorry is prohibited for 5 years.⁷

A driver who has had no seizures for years might be tempted to try a trial off treatment, particularly if the medication is causing significant side effects. After 2 years without seizures stopping treatment is worth a try, but not without talking it through with a neurologist.³ However, if then another seizure occurs, the clock starts again about fitness to drive. Some people with epilepsy continue their drugs just to avoid this scenario.

3. Travel. Flying is not usually a problem with epilepsy unless the seizures are provoked by tiredness. Letting the airline know beforehand is probably a good idea just in case there is a problem. Medication is best taken into the cabin. Patients may want a list of their medications on official-looking paper to confirm the nature of the tablets they are carrying when they go through Customs. Most practice software will be able to print off a list of regular medication, and this usually suffices.

For travellers to malarial areas, chloroquine and mefloquine should not be used as prophylaxis in people with a history of epilepsy.⁵ Doxycycline can be used, but because of liver enzyme induction the usual dose will have to be higher i.e. doubled.

Swapping time zones may require some juggling with the timing of anticonvulsant medication. Epilepsy is a significant condition as far as travel insurance companies are concerned, so failure to disclose will invalidate the insurance not just for epilepsy but for all medical problems. Vaccination requirements are not altered.

4. Fertile years. Women with epilepsy who are of an age when they may become pregnant pose their healthcare providers a particular set of issues. The induction of liver enzymes reduces the effectiveness of the combined oral contraceptive pill: a coil or a depot progestogen contraceptive are better choices. If a combined oral contraceptive pill is the only acceptable method of contraception, then it should contain at least 50 micrograms of oestrogen or it may not work. If pregnancy is being considered, then the woman should consult her neurologist.

If pregnancy has occurred then the woman should see her neurologist with some urgency, but not suddenly stop her epilepsy medication. Some epilepsy medications are worse than others at causing foetal abnormalities: sodium valprate is a particular culprit. There is a foetal anti-convulsant syndrome (FACS) which causes a range of physical and developmental problems.

The dose of folic acid needed to avoid spina bifida is higher than usually required: 5mg a day rather than the usual 400 micrograms. Seizures are more common in pregnancy, as are complications with the pregnancy itself and also labour. The risk of the baby developing epilepsy is about 10%.²

CONCLUSION

As long-term conditions go, epilepsy is relatively uncommon in primary care. However, individuals are usually stuck with the condition and its consequences for life. They become patients, and usually have to take medicines – with their attendant side effects – for years on end.

Treatments for epilepsy are so very much better than they were. There are several alternative drugs, and surgery can be curative in a limited number of situations. I could find no suggestion that unexplained epilepsy is getting more common. But as more people with epilepsy from brain trauma, brain surgery and stroke are ‘salvaged’ the prevalence of epilepsy is sure to rise.

REFERENCES

1. Joint Epilepsy Council. Epilepsy prevalence, incidence and other statistics. 2011

2. NICE CKS Epilepsy. cks.nice.org.uk/epilepsy

3. Epilepsy Society www.epilepsysociety.org.uk

4. NICE CG137.Epilepsies: diagnosis and management, 2012 (updated 2016). https://www.nice.org.uk/guidance/cg137

5. British National Formulary. No 70, September 2015

6. General Medical Council. Confidentiality: reporting concerns about patients to the DVLA or the DVA.

http://www.gmcuk.org/Confidentiality___reporting_concerns_to_the_DVLA_or_DVA.pdf_58821800.pdf

7. DVLA. At a glance guide to the current medical standards of seizureness to drive. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/457961/aagv1.pdf