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Epilepsy
A guide for patients and carers
How will life be affected?
Driving
Having epilepsy does affect the right to hold a UK driving license and you must inform the Driving and Vehicle Licensing Authority (DVLA) if you have been diagnosed with epilepsy. It is the DVLA, not your doctor that decides on an individual's eligibility to hold a driving license. The DVLA can obtain medical details from the doctors who are treating you (with your consent). People with epilepsy are barred from driving unless the following conditions are met:
Group 1 license
To hold a Group 1 license, which is for private cars and motorcycles, you must:
1. Have had one year of freedom from any epileptic fits up to the time when the license is granted OR
2. For people that have fits only during sleep, there has to have been a sleep-only pattern for three or more years, without fits whilst awake.
3. It must be confirmed that driving a car or motorcycle would not be a source of danger to the public. The DVLA will decide this based on your GP or consultant’s recommendation.
The regulations about driving apply whatever the type of epilepsy. Even minor attacks will be counted. The requirement for a year of freedom from seizures applies whether or not a person is taking AEDs. The regulations also deal with any unexplained loss of consciousness where no cause has been found. In this situation, the one year ban from driving also applies. One year after the last fit, you can obtain a three year license. A license that is valid to the age of 70 may be restored if you have been both free of fits and AEDs for ten years. Insurance companies may increase premiums for people with a past history of epilepsy.
Epileptic fits linked to misuse of alcohol or misuse of drugs whether prescribed or illicit also carry a one year ban and a medical review is required before the license can be reinstated. This is because some drugs, particularly those used to treat certain mental illnesses, have side effects that can affect a person's ability to drive safely.
Group 2 licence
To hold a Group 2 license, which is for heavy goods vehicles (HGVs) and passenger carrying vehicles that are more than 7.5 tonnes or carrying more than nine individuals you must:
1. Have been free from epileptic fits of any sort for the past 10 years and have had no anti-epileptic drugs during this 10 year period.
2. There is no likelihood of epileptic fits occurring. This mainly applies to people who have conditions that may cause epilepsy, such as severe head injury or complicated brain surgery.
If a specific cause for a one-off fit is known and there is no likelihood of further fits occurring, then these driving restrictions do not apply. Your doctor will provide advice but it is up to individuals to inform the DVLA and not the doctor. The responsibility for obeying the law rests with the individual, not the doctor. Your doctor's advice about driving will be recorded in your medical notes.
Women with epilepsy
Some women find that their fits are more likely to occur around the time of their menstrual period. Others find that this happens during the time just before their periods start, or around the time of ovulation. If this is the case then additional advice can be provided by your doctor or specialist nurse. Changing or adding other medication may help.
During the menopause some women find hormone replacement therapy (HRT) helpful and the effects are the same as for women without epilepsy. For women who have developed osteoporosis partly as a result of taking AEDs such as phenobarbitone and phenytoin, HRT may help. However, some AEDs affect the liver and cause the HRT to be processed more quickly so that higher doses of oestrogen hormone are required. Combination HRT may be more effective for some women with epilepsy. HRT itself does not seem to affect either epilepsy or the use of AEDs.
Becoming pregnant
Up to one in six couples in general may experience some difficulty in conceiving. Some of the rarer types of epilepsy and some AEDs may be linked to difficulties in conceiving. However having epilepsy is not a bar to having children. It is a good idea to have a discussion with your doctor before getting pregnant so that issues such as the dose of AEDs, monitoring the pregnancy, breast feeding and looking after the baby can all be considered.
Effects of AEDs on the baby
Usually women are advised not to take any drug during the first 12 weeks of pregnancy. However, having epilepsy makes an exception to that rule. This is because if AEDs are withdrawn altogether, there is a possibility of fits or even status epilepticus occurring, which could put both mother and baby at risk. To reduce the risks of any possible harm caused to the baby by AEDs, a single drug is usually used during pregnancy at the lowest possible dose, although the dose may need to be slightly increased in the later stages of pregnancy to take account of the increase in body size. The dose can usually be decreased again a month or so after birth. Folic acid supplements are also recommended for women who are trying to become pregnant.
Established AEDs (phenobarbitone, phenytoin, sodium valproate and carbamazepine) do increase the risk of birth defects. The risk has been estimated at 7-8% when a single drug is used. Potential problems with the pregnancy can usually be detected early during monitoring and can be discussed with the obstetrician or other doctor in charge of the care.
Labour
Having epilepsy does not interfere with normal labour and delivery. Women with epilepsy are usually advised to have their labour in hospital where the midwives and doctors are aware of the situation. AED use is continued throughout labour and additional drugs are not usually needed if the epilepsy is under control. Pain relief during labour is the same as for other mothers, however the use of pethidine is generally avoided. There may be a small increased risk of fits occurring in the first few days after giving birth.
Breast feeding
Mothers with epilepsy can breast feed their babies. A very small amount of any AED is secreted in the milk but this has not been shown to be harmful to the baby. For very young babies, breast feeding has to take place during the day and the night. As going without sleep can trigger fits, if the epilepsy control is incomplete, it may be a good idea for your partner or other family member to give some of the baby's feeds by bottle to allow you to catch some sleep.
Caring for your baby
Most women with epilepsy have normal pregnancies, births and cope well with their babies. If the epilepsy control is incomplete then some precautions are sensible. Feeding the baby while sitting on the floor with cushions around is a good idea to avoid dropping the baby if a fit does occur. Another good idea is to have someone around when you are bathing the baby.
Preventing pregnancy – oral contraception
Women with epilepsy can safely use the pill for contraception. Because some AEDs cause the liver to speed up the processing of various substances including the pill, it may be necessary to use the standard, rather than the mini dose pill. However if pregnancy is to be completely avoided the additional use of a barrier method such as the cap is usually recommended. A coil (intrauterine device) is another possibility, but there is a small risk of triggering a fit during insertion of the coil.
Daily activities at home
As with any one else, a person with epilepsy is responsible for his or her own safety. The amount of precautions you need to take depends on the severity of the epilepsy. It is a good idea to explain the situation to neighbours if you live on your own or to flatmates if you are sharing accommodation. It is also a good idea to let your family and friends know what to do if you have a fit (refer to earlier section entitled 'First aid for a person who has a fit'). People with epilepsy should be allowed and supported to lead as full and active a life as possible.
Cooking
If possible, try to avoid gas fires, but even electric cookers can burn. Useful tips are to turn the handles of saucepan away from the edge and try to avoid carrying containers of hot liquid by bringing plates and mugs to the cooker and kettle rather than carrying hot fluid across the kitchen.
Bathing
Showers are preferable to baths. It is a good idea to have a shallow bath if there is no shower. Let someone in the house know that you are having a bath especially if your epilepsy is partially controlled. If possible, avoid locking the bathroom door and if it is practical, have a door fitted that opens outward so that if you do have a fit, you don't prevent the door from being opened.
Stairs
When seizures are partially controlled, stairs can be dangerous. If at all possible it is a good idea to use the stairs as little as possible. For some people it may be necessary to move to a single storey home.
Work
Having epilepsy does not prevent anyone from working. However, some jobs such as those involving flying, deep sea diving, train driving and employment in the services are prohibited. People with active epilepsy are generally advised not to work at heights or with revolving machinery. Some employers may hesitate to employ a person with epilepsy simply because they do not have a full understanding of the condition and often wrongly believe that it will affect the person's ability to do their job.
Employers' insurance companies may sometimes impose specific clauses in insurance contracts that will need to be discussed with the occupational health
officer. Every person will need to look at a prospective job and assess whether the epilepsy may lead to some difficulties for themselves or for work colleagues. You might wish to consider informing close work colleagues of the possibility of epilepsy to avoid alarm if a fit occurs out of the blue and so that they know how to give the correct first aid if necessary.
For people who develop epilepsy later in life, losing a job, for instance because of loss of their driving license, can be hard to accept. However, doctors do have a responsibility to protect their patients and society in general where a condition such as epilepsy is known to affect the ability to drive safely.
Leisure
Almost all leisure, social and sporting activities are open to people with epilepsy. Some activities however do carry an increased risk for people with epilepsy and should therefore be avoided. Examples include deep sea diving, para-gliding, deep caving, sky diving and mountaineering. Swimming is fine provided that you are accompanied by someone who knows about the possibility of a fit occurring and you have informed the lifeguards in public swimming pools. Youngsters can go on camping and cycling trips and other outdoor activities as long as their instructors are aware of their condition.
As far as possible, it is a good idea to avoid too much exposure to potential trigger factors such as alcohol, sleep shortage and stress. People with photosensitive epilepsy should consider limiting the time they spend watching TV or computer monitors. Sometimes, changing the frequency setting of the equipment or using blue tinted filters over the screen can reduce the likelihood of fits being triggered.
Relationships
Some people with epilepsy find that it can be difficult to accept being slightly different and having to take certain precautions regarding driving and regular intake of AEDs. Having epilepsy need not limit friendships or sexual relations. As far as possible, it is a good idea not to let epilepsy rule your life. When someone with epilepsy has difficulties, it may be their career who needs support to help them with their long-term caring role.
Support
Many people, when they are first diagnosed as having epilepsy, will turn to family and friends to discuss the diagnosis and the effect it may have on their life. After what may be an initial shock, there is often a period of adjustment to the new situation and the need to change some parts of their lifestyle. To some extent, this happens to everyone with epilepsy, but the effects and extent vary depending on the age of person with epilepsy.
If the person with epilepsy is a school-age child, their teachers will need to be informed so that they can manage the situation and monitor the effects of the condition on schoolwork. Sometimes special arrangements will need to be made to reduce the risk of fits occurring in times of increased stress, such as during exams.
Parents often face major decisions about their affected children and important decisions about plans for the family will have to be made. Doctors can help to some extent, but the time needed to discuss issues in detail may be lacking in the usual consultation in a GP's surgery or hospital visit.
There are a number of organisations with experience of the condition and its effects on people's lives and these are detailed on page 29 of this booklet. Social workers and community nurses can be very helpful. Epilepsy Nurse Specialists, who are hospital or community based, are available in many parts of the UK. They are experienced in offering advice and information to people with epilepsy and their families. Your local neurological centre may have contact details for epilepsy nurses in your area.
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Contents
- Introduction
- How do fits happen?
- What causes epilepsy?
- Are there different types of fit?
- How is epilepsy diagnosed?
- What drugs are used to treat epilepsy?
- Surgery and other treatment for epilepsy
- First aid for a person who had a fit
- How will life be affected?
- Other organisations that may be able to help
