There are no rigid guidelines for living with epilepsy, as everyone's condition is different. However, there are some general points that can help.
Know your triggers
The more you know about the things that trigger your seizures and how to avoid them, the less debilitating your epilepsy will be. Keep a seizure diary to help you work out if you have any triggers.
Take your medication
Anti-epilepsy medication controls seizures in around 70% of people. Working with your specialist to find the medication that suits you best, and taking it exactly as prescribed, is probably the most effective way to live well with epilepsy.
You will have regular reviews of your epilepsy and treatment. This is usually carried out by your GP, but sometimes by your neurologist and their team. If your epilepsy is not well controlled, you may have more frequent reviews.
Self-care is an integral part of daily life. It involves taking responsibility for your health and wellbeing with support from those involved in your care. Self-care includes what you do every day to stay fit and maintain good physical and mental health, prevent illness or accidents and care more effectively for minor ailments and long-term conditions. People with long-term conditions can benefit enormously from being supported to self care. They can live longer, experience less pain, anxiety, depression and fatigue, have a better quality of life and be more active and independent
Regular exercise and a healthy diet are recommended for everyone, not just people with epilepsy. They can help prevent many conditions, including heart disease and many forms of cancer. Try to eat a balanced diet, containing all the food groups, to give your body the nutrition it needs. Exercising regularly can increase the strength of your bones, relieve stress and reduce fatigue.
Heavy drinking can cause seizures, as well as interact with anti-epileptic drugs (AEDs), making them less effective. AEDs can heighten the affects of alcohol, while alcohol can make the side effects of AEDs worse.
Heavy drinking is also associated with disrupted sleep patterns, and this can increase the risk of having a seizure. Drinking no more than the recommended limits will reduce any potential side effects.
The recommended limits for alcohol consumption are 17 standard drinks for men and 11 for women. A standard drink of alcohol is equal to about half a pint of beer, a small glass of wine or a pub measure of spirits.
Women and epilepsy
Some anti-epileptic drugs (AEDs) can reduce the effectiveness of some types of contraception, including:
If you are sexually active and you want to avoid pregnancy, ask your GP or epilepsy specialist whether your AEDs could affect any of these methods of contraception.
You may need to use another form of contraception such as a condom or coil.
Some AEDs have also been known to make the emergency contraceptive pill less effective. If you require emergency contraception, you may need an IUD. Your GP, family planning clinic or pharmacist should be able to advise you.
There is no reason why women with epilepsy cannot have a healthy pregnancy. However, it is always preferable if the pregnancy is planned. This is because there is a slightly higher risk of complications developing during pregnancy. However, with forward planning, these risks can be minimised.
The main risk is that some AEDs are known to increase the chances of a serious birth defect occurring, such as spina bifida, cleft lip or a hole in the heart. The risks depend on the type of AED and the dosage you are taking.
The Irish Epilepsy and Pregnancy Register can provide more information and advice about the use of AEDs during pregnancy. It can also be contacted at Freephone 1800 320 820.
If you are planning a pregnancy, talk to your epilepsy specialist. It may be possible to change the AED you are taking to minimise any risks. Taking 5mg of a folic acid supplement a day can also help reduce risks of birth defects.
If you discover you are pregnant, do not stop taking your medicine. The risks to your baby from uncontrolled seizures are far higher than any risks associated with your medicines.
There are no risks associated with breastfeeding while taking an AED if the baby had been exposd in utero.
Children and epilepsy
Many children with well-controlled epilepsy can learn and participate in their school's activities completely unaffected by their condition. Others may need some extra support to get the most out of their time at school. Make sure your child's teachers know about their condition and the medication they need to control it.
Epilepsy is more common among children with learning disabilities and special educational needs. These children are entitled to extra help to overcome their difficulties. Each school will have at least one member of staff with responsibility for children with special educational needs. The law says that all state schools must do their best to meet special educational needs, sometimes with the help of outside specialists.
If your child needs a lot of extra help, the local education authority may carry out an assessment. This will outline the help your child needs, set a number of long-term goals, and ensure that your child is regularly reviewed.
Talk to others
If you have any questions, your GP or nurse may be able to reassure you. You may also find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your GP surgery will have information on these.
Some people find it helpful to talk to other people who have epilepsy, either at a local support group or in an internet chat room.
If you have a seizure, you have a legal responsibility to inform the Road Safety Authority
New Irish driving regulations have come into effect since December 2010 which brings us in line with wider European regulations through the implementation of a European directive.
Full details of the regulations may be seen on the Road safety Authority website www.rsa.ie under the heading Medical Aspects of Driver Licencing.
A summary of the main points of the regulations in respect of epilepsy are as follows:-
Group 1: Cars, Light Vans and Motorcycles
The main seizure freedom period for personal driving in categories A1, A, B, EB, M or W (car light van or motorcycle) remains the same at one year of seizure freedom.
Summary of the main relevant points
Provoked seizures: a person who has had a provoked epileptic seizure due to a recognizable provoking factor that is unlikely to recur at the wheel may be declared able to drive on an individual basis subject to neurological opinion. (Previously six months)
Sleep seizures: For persons who have seizures exclusively in sleep they may be declared fit to drive once this pattern has been established for no less than one year. (Previously 2 years). If a further occurrence of a seizure happens in waking a one year seizure freedom period is required.
Seizures without influence on consciousness or the ability to act - persons with who have never had any seizures other than seizures which have been demonstrated to affect neither consciousness nor cause any functional impairment can be declared fit to drive once this pattern has been established for no less than one year (was previously subject to neurological opinion). If there is an occurrence of any other kind of seizure then a one year seizure freedom period is required.
Initial or isolated seizures: a person who has had an initial seizure or loss of consciousness should be advised not to drive and a specialist report is required regarding the period of driving prohibition and follow up to be undertaken.
First or single unprovoked seizures: a person who has had a first unprovoked epileptic seizure may be declared fit to drive after a period of six months seizure freedom with an appropriate medical assessment preferably a Neurological assessment.
Seizures associated with a physician directed change or reduction of anti-epileptic therapy: in such cases the person may be advised not to drive from the beginning of the period of withdrawal and for six months after stopping of treatment. Seizures which occur during the physician advised change or withdrawal of medication require three months off driving if previously effective treatment is reinstated.
Surgery In cases where a person has had curative epilepsy surgery the seizure freedom period prior to licencing is the same as the main seizure freedom period for epilepsy i.e.1 year.
The new regulations provide definitions of epilepsy and provoked seizures:
- Epilepsy: common medical disorder characterised by recurrent seizures....as defined by having had 2 or more epileptic seizures less than five years apart.
- Provoked epileptic seizure: seizure which has a recognisable causative factor that is avoidable.
The new regulations state that all drivers with epilepsy should be under annual licence review until they have been seizure free for a period of at least five years.
Persons with epilepsy will not meet the criteria for unconditional licencing (10 year licence) and notification should be given to the licensing authority.
Group 2: Lorries, Buses, Heavy Goods Vehicles
In the case of applicants with epilepsy for licencing in respect of heavy goods vehicles C1, C, D1, D, EC1, EC, ED1 or ED the directive permits for persons to be licenced to drive in these categories provided 10 years of seizure freedom have been achieved without the aid of anti-epileptic drugs. A permit may be granted in less time in the case of those with good prognostic indicators and in similarly in cases of juvenile epilepsy. Appropriate medical follow up must be completed and satisfactory result on neurological investigations. All persons are to be under licence review until they have been seizure free for at least 5 years.
Persons who have had a provoked seizure due to a recognizable provoking factor that is unlikely to recur at the wheel may be declared eligible to drive on an individual basis subject to neurological opinion with appropriate assessments having been completed after the acute episode.
First or single unprovoked seizures: the person may be declared fit to drive in these categories once 5 years seizure freedom has been achieved without the aid of anti-epileptic drugs. Drivers with good prognostic indicators may drive sooner.
Seizures due to drug or alcohol misuse, sleep deprivation or structural abnormality are not considered provoked seizures for licensing purposes. Reports of seizures due to side effects of prescribed medication do not automatically imply that such events will be considered as provoked.
Seizures which may be considered provoked include eclamptic seizures, reflex anoxic seizures, immediate seizure seconds after head injury, seizure in the first week post head injury not associated with damage on CT or MRI nor with post amnesia of more than 30 minutes, seizures at time of stroke/TIA or within 24 hours of same, seizures during inter-cranial surgery or the ensuing 24 hours.
Seizures associated with acute exacerbation of Multiple Sclerosis or Migraine need to be assessed on an individual basis by a Neurologist.
For full details see: www.rsa.ie Medical Aspects of Driver Licensing - Epilepsy: Group 2
Sudden unexpected death in epilepsy (SUDEP)
When somebody with epilepsy dies and no apparent cause can be found, it is known as sudden unexpected death in epilepsy (SUDEP).
SUDEPs are rare, affecting only 0.5% of people with severe epilepsy. The causes of SUDEPs are unknown, but one theory is that seizures could affect the person's breathing and heartbeat.
The risk factors for SUDEP are:
- poorly controlled epilepsy
- having a history of seizures occurring during sleep
If you are worried that your epilepsy is poorly controlled, contact your epilepsy specialist. It may be possible to refer you to a specialist epilepsy centre for further treatment.
If you have been diagnosed with epilepsy you are entitled to a Long Term Illneses Card.