Contraception
Some anti-epileptic drugs (AEDs) can reduce the effectiveness of some types of contraception including:
- contraceptive injections,
- contraceptive patches,
- the combined oral contraceptive pill,
- the progesterone-only pill (POP) or mini pill, and
- contraceptive implants.
If you are sexually active and you want to avoid pregnancy, you should discuss with your GP or epilepsy specialist whether your AED could affect any of these methods of contraception.
You may need another form of contraception such as a condom or an intrauterine device (the 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.
Pregnancy
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, or a hole in the heart. The risks depend on the type of AED, and the dosage, that you are taking because the higher the dose, the greater the risk.
The UK Epilepsy and Pregnancy Register can provide more information and advice about the use of AEDs during pregnancy.
If you are planning a pregnancy, you should talk to your epilepsy specialist. It may be possible to change the AED that you are taking in order to minimise any risks. Taking 5g of a folic acid supplement a day can also help reduce risks of birth defects.
If you find that you are pregnant, and you are taking a 'high-risk' AED, 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.
Driving
If you have a seizure, you have a legal responsibility to inform the Driving and Vehicle Licence Authority (DVLA) or, if you live in Northern Ireland, the Driver and Vehicle Licensing Northern Ireland (DVLNI).
You will usually not be able to hold a group one driving licence, required for private cars and motorcycles, until:
- you have remained free from seizures for a year, or
- in the case of people who only have seizures during sleep, there has to be a sleep-only pattern of seizures for three or more years, with no history of seizures occurring during the day.
You will not usually be able to hold a group two driving licence, required for heavy good vehicles and passenger carrier vehicles that are more than 7.5 tonnes, until:
- you have been free from seizures for the past 10 years, and have not been taking AEDs during this period, and
- your epilepsy specialist confirms that there is no likelihood of seizures occurring.
You will need to apply to the DVLA for the return of your licence. They will only return your licence when they are satisfied that your epilepsy is under control. As part of this process they may wish to contact your GP or epilepsy specialist.
You do have the right to appeal against their decision at a magistrates' court.
Regulations regarding taxis are set by local authorities. The public information website 'Directgov' has contact details for all local councils in the UK.
If you ignore these regulations, you will be liable for prosecution. Your GP also has a legal responsibility to inform the DVLA, if it is felt that your driving is putting both you and other people at risk.
If you have epilepsy and you have seizures despite taking AED, you are eligible for a disabled persons’ railcard and bus pass, which allows you to get discounted rail travel and bus fares. See the useful links section for more details.
Status epilepticus
Status epilepticus is a seizure that lasts more than 30 minutes, or a series of repeated seizures, without the person regaining consciousness in between.
This can be dangerous as the body can struggle to circulate oxygen, which can eventually cause brain damage.
Status epilepticus can be treated by an injection of a medicine known as diazepam. This medicine can also be squirted from a tube into the person's anus (back passage), which is known as rectal diazepam.
An alternative treatment is a medication called buccal midazolam. This comes in liquid form and it is administered by trickling the liquid onto the inside of your cheek. It is then absorbed into your bloodstream.
If you have a child, other relative, or partner, with a previous history of status epilepticus, you may wish to be trained to administer rectal diazepam, or buccal midazolam.
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. What causes SUDEPs are unknown, but one theory is that seizures could affect the person's breathing and heart beat.
The risk factors for SUDEP are:
- poorly controlled epilepsy, and
- 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.
There is also a charity called Epilepsy Bereavement that can offer advice and support on SUDEP, as well as a helpline for people who have lost a loved one as a result of epilepsy.
