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www.epinet.org.au/content.asp?contentid=619

For women with epilepsy, many issues arise over the lifespan. For the emerging woman you may have concerns regarding menstruation and seizure control, and as you discover your sexuality there may be concerns about forming relationships and whether your epilepsy will affect sexual function and your ability to have children. As the prospect of being a parent approaches you may have concerns about passing your epilepsy on to your future children, being a mother with epilepsy and caring for your child. And as your biological clock ticks over and menopause approaches you may have concerns about the effect it may have on your epilepsy.

Many of these concerns are dealt with here, however it is important that at all stages of your life you discuss emerging issues with your neurologist, gynaecologist or obstetrician. And always there will be assistance and guidance available from your Epilepsy Australia affiliate.

Menstruation

Yes. Menstruation usually begins between the ages of 8 and 18. Physical changes occur within our body throughout our life. There is no evidence to support that epilepsy interferes with the onset of menstruation.

 

At the onset of menstruation seizures in some girls may increase. However, in both sexes epilepsy can disappear at puberty. There are no clear reasons why this happens. Other people develop epilepsy in adolescence. Some women find that their seizures seem to occur just before their period or during it.

When seizure patterns are linked to the menstrual cycle this is known as catamenial epilepsy. Those women who experience catamenial epilepsy also find they experience seizures at any time but their seizures are more likely to occur around the time of menstruation. There is still no clear explanation of why this happens. It may be due to changes in hormone levels and antiepileptic medication levels, fluid retention and possible premenstrual tension. Premenstrual Syndrome [PMS] occurs in some women with symptoms such as irritability, tiredness, depression, hostility and aches and pains.

Keeping a record of your seizures may help identify a relationship between seizure frequency and menstruation and assist your neurologist in formulating a suitable treatment plan. Some women may benefit from taking additional medication in the week before their menstrual period and this option should be discussed.

Intimate Relationships

Epilepsy should not stop a person from having an intimate relationship and enjoying sexual intercourse. There is some evidence to suggest that the sex drive [libido] is reduced in a minority of people with epilepsy and also that some medications reduce sex drive. If you are concerned about reduced libido or are experiencing sexual difficulties talk to your doctor. Your epilepsy association counsellor should also be able to help, or get you the help that you could need.

The answer is that it is unlikely to do so, yet feeling anxious during such intimate moments is understandable. Seizures often involve the same areas of the brain that are important to maintaining healthy sexual function, and some of the sensations felt during lovemaking can be similar to those experienced during auras or simple partial seizures Confide in your partner how you feel and why you may seem apprehensive about taking the relationship to a more intimate level. An understanding partner will reassure you that everything will be OK. An active and fulfilling sex life is an important part of all loving relationships

Women with epilepsy may use all the usual methods of contraception. Your neurologist, gynaecologist or general practitioner can help you decide what is the best form of contraception for you. The most popular form of contraception is the contraceptive pill.

Some antiepileptic medication can affect the metabolism of the pill and make it less effective. These drugs are known as 'enzyme inducers'. Antiepileptic drugs which are enzyme-inducers include: carbamazepine [Tegretol], phenobarbitone, phenytoin [Dilantin], primidone [Mysoline] and topiramate [Topamax]. For women who are taking any of these antiepileptic medications and wish to use the pill, it is recommended that they start on a pill that contains 50 micrograms of oestrogen.

Antiepileptic drugs, which are not enzyme-inducers, include: clobazam [Frisium], ethosuximide [Zarontin], gabapentin [Neurontin], lamotrigine [Lamictal], sodium valproate [Epilim], tiagabine [Gabitril] and vigabatrin [Sabril]. A low dose pill may be effectively used with these drugs.

Breakthrough bleeding between periods may occur in women who are taking enzyme-inducing drugs. This may indicate that the oestrogen dose is not high enough. Other contraceptive precautions should be used and your neurologist notified as he may need to increase your oestrogen dose. As your body eliminates the pill quickly, there will be no increased risk of side effects from the higher dose. Your neurologist will also take into account other factors that may influence you taking the pill such as age, obesity, and the heavy use of tobacco products.

The oral contraceptive pill will be suitable for most women with epilepsy. In a very small minority of women however, it may make seizures worse. Remember you have a wide range of options available to you. Please discuss these with your neurologist.

Folate or folic acid is a B group vitamin that has been proven to reduce the risk of neural tube defects in babies. Neural tube defects occur when the two edges of a plate of neural tissue in the embryo fail to meet to form the tube from which the brain and spine develop. This closure happens in the first 4 to 6 weeks of pregnancy when most women are not yet aware that they have conceived. Perhaps the neural tube defect that most of us have heard about is spina bifida.

It has been estimated that 1 in every 600 pregnancies in Australia is in some way affected by a neural tube defect. When you think about the fact that women taking antiepileptic medications may be decreasing their absorption of folate and the fact that something like half of all pregnancies aren’t planned, it is an important consideration for sexually active women to supplement with folate.

Research indicates that 7 out of 10 neural tube defect cases could be prevented by an increased intake of folate. Women who are able to get pregnant and who are sexually active should consider taking a folate supplement of 4mg ?5mg a day. Folate is both cheap and readily available from your supermarket, health food store, or pharmacy, or even over the internet. You cannot consume ‘too much?folate and using folate supplements over many years is safe and non-addictive.

Pre-pregnancy Counselling

Pre-pregnancy counselling is very important. If you are planning to become pregnant it is important that you discuss this with your neurologist. A successful pregnancy will depend on several factors:

• a clear understanding of your seizure pattern
• well controlled seizures
• the most appropriate medication to suit you and your future baby
• folate supplement, a vitamin that protects against spina bifida and neural tube defects.

By working with your neurologist you will minimise any risks to your future child. You will have many questions to ask about your epilepsy and future pregnancy. The most common questions asked at this time are:

Most women with epilepsy can bear children. If you've been trying to become pregnant for a year or more without success you should contact your neurologist or gynaecologist. Your treatment may need to be reviewed or you and your partner may need to have some routine investigations.

Most types of epilepsy are not inherited, therefore the risk of your child having epilepsy is small. It will depend on your epilepsy syndrome and your and your partner's seizure threshold.

The two main factors that may cause epilepsy to develop are:

1.  a person's seizure threshold or level of resistance to seizures, and the occurrence of some sort of brain damage or injury.
2.  if one parent has epilepsy the risk of passing it on to a child is small, in fact it is only slightly higher than anyone in the general population developing epilepsy. However if both parents have epilepsy it may indicate that they will have low seizure thresholds and the risk to the child becomes greater.

In certain circumstances we are all capable of having seizures. If a person has a very low seizure threshold seizures may occur spontaneously. In most people however seizure threshold is high and an environmental trigger may cause seizures to start. Some people can tolerate extreme stress without having a seizure, whereas other people may have a seizure when subjected to much less stress. The seizure threshold cannot be measured and is different from person to person. It is thought to be part of the person's genetic make-up and may be passed on to any children. Epilepsy occurs frequently in some families, while in others may appear in only one member. In these cases if the epilepsy cannot be attributed to any obvious damage or injury genetics may be a contributing factor.

Most inherited epilepsies are benign [outgrown at adolescence] such as Benign Rolandic Epilepsy and are easily treated. Some types of epilepsy that are hereditary include absence epilepsy, juvenile myoclonic epilepsy and primary generalised tonic clonic seizures.

A child may inherit a genetic condition from a parent, a symptom of which is epilepsy. These conditions are rare such as neurofibromatosis and tuberous sclerosis. It must be remembered that if the only cause of epilepsy is a head injury the condition will not be inherited just as you cannot inherit a broken arm. So, there is no easy answer to this question: it depends on the cause of your epilepsy. An accurate diagnosis of your epilepsy may give some indication of the risk of your child inheriting epilepsy however in most instances the risk is low.

Unplanned pregnancy

In the event of an unplanned pregnancy, you should continue taking your medication and speak to your doctor as soon as you can. Ongoing medical supervision will ensure the best outcome for you and your child. Please discuss all these issues with your doctor who will give you further advice and information.

I'm pregnant!

Yes. The dangers of not taking your medication and increasing your risk of having a seizure is considered greater than the risks associated with taking antiepileptic medication. It is understandable that taking medication throughout your pregnancy may cause concern, however if the pregnancy is planned in consultation with your neurologist all factors will be taken into account to ensure the best possible outcome for you and your future child.

While the risk of something being wrong with your baby is slightly higher than for women who don't have epilepsy, 95% of women with epilepsy have healthy babies.

It must be stressed that this figure includes minor problems such as change in shape of earlobes or shorter toes. The risk of more serious abnormalities like spina bifida, congenital heart disease, cleft palate, or harelip, occurring is very small. Folic acid supplements will reduce the risk of neural tube defects that cause spina bifida. In general, fear of malformations has been exaggerated.

In most cases taking antiepileptic medication during pregnancy appears to have no lasting effect on the growth or intellectual development of the child. The safest course for women needing antiepileptic drug treatment during pregnancy appears to be to take a single drug at the lowest possible dose to prevent seizures from occurring. There is some evidence that sodium valproate may adversely affect intellectual development. Pregnancies can be well monitored these days to detect the presence of any abnormality by blood tests and scanning.

A maternal serum blood test is now available for pregnant mothers to find out if they may be at increased risk of having a baby with neural tube defects. This test will help identify four out of five with neural tube defects.

Ask your doctor about Vitamin K towards the end of your pregnancy as some antiepileptic medications can affect the metabolism of Vitamin K in the newborn that may lead to bleeding.

It's not possible to predict what will happen to your seizure pattern. For some, seizure control remains unchanged during pregnancy. There will be women who will experience fewer seizures, while others may find their seizures more difficult to control. It is important to advise your doctor of any seizures during pregnancy. Status epilepticus and prolonged seizures in pregnancy are considered a medical emergency.

During your pregnancy it is advisable to:

• get enough rest and sleep [lack of sleep can trigger seizures]
• continue to take medication as prescribed.
• look after you, find time to pamper yourself. This is sometimes hard for a busy person.
• maintain a healthy diet
• exercise sensibly and regularly
• abstaining from alcohol and tobacco will assist in minimising risks
• avoid stressful situations

It is recommended that you have your baby in hospital. Home births are not an option. You will still have the same choices for labour and delivery as any other woman.

I'm a mum!

Motherhood is a big step for any woman. If you have fears about becoming a parent you should discuss your feelings frankly and honestly with your partner, family and doctor. Parenting may be more difficult if your seizures are less well controlled. This will depend on the type of seizures you experience and how frequently they occur.

All antiepileptic medications are excreted in breast milk but only in low concentrations and much less than the baby would have been exposed to during pregnancy Breastfeeding therefore should not be a problem. If your baby continually appears drowsy seek specialist advice. Breastfeeding can be a tiring process and lack of sleep may trigger seizures in some mothers.

• Make sure you get enough sleep try to have naps during the day as lack of sleep can trigger seizures.
• To avoid interruptions turn the phone volume down, put a note on the front door, turn on the answering machine.
• Your partner may be able to help with feeding, bathing and changing nappies or you could do them together.
• When feeding the baby, sit on the floor with your back to the wall and a cushion on either side to give yourself adequate support.
• It's safer and easier to change nappies on the floor rather than on a table
• If you are having frequent seizures avoid carrying the baby in your arms.
• If you are alone sponge rather than bathe the baby.
• Always use a safety harness when the baby is in a pram or stroller. If you are out consider tying a length of cord from your wrist or waist so that the pram will not run away if you have a seizure.
• Should you have a seizure the usual fireguards, playpens and stair gates will protect the child from dangers in the home.
• Consider attaching toddler reins to your wrist until your child understands the importance of staying near you should a seizure occur when you are out. Small children should carry identification just in case they do wander away.
• Be sure your garden is well fenced and ensure that swimming pools have a childproof gate.
• Children love to mimic adults. Store medications in childproof containers safely out of reach at all times.
• Employ all the usual child safety precautions which any parent with a child should adopt.
• Don't feel guilty about asking for and accepting help. Your needs are important at this time.
   

As your child gets older it is important to discuss your seizures and your medications. Story books and videos are available from your Epilepsy Association that may help you explain your epilepsy to your children. Ensure that your children are clear about what to do if a seizure occurs.

It can be a very distressing experience for young children to make sense of their mother's seizures. It can be a temporary role reversal where the mother is helpless and the child becomes the 'carer'. It may be helpful to put positive coping strategies in place. Give the child a simple task to do like getting a cloth to place under your face to protect from abrasions and absorb saliva, or stroking your face to offer words of comfort. And above all, always answer their questions in a positive and simple manner when they arise.

Menopause

Menopause generally has little influence on seizure frequency. Some women may experience an increase in seizure frequency due to hormonal changes. Others may find that their seizures improve or disappear at this time, particularly if their seizures coincided with the premenstrual period and sometimes with pregnancy. Epilepsy can develop at any stage of life and some women will develop epilepsy at this time.

Natural menopause occurs most commonly between the ages of 45 and 55 years but it may occur earlier or later. The most common symptoms associated with menopause are hot flushes, sweating, palpitations, depression, fatigue, headache and sleeping difficulties.

Hormone Replacement Therapy [HRT] containing the sex hormone oestrogen may be recommended to relieve some of these symptoms. For most women with epilepsy HRT may be very beneficial, it can however make seizures worse for a small minority of people. If this occurs contact your doctor for advice.

Supplementary oestrogen may also be prescribed to prevent loss of calcium, which causes thinning of the bones and is called osteoporosis. The bones become increasingly brittle and liable to break more easily, if seizures are a problem this can then be a hazard. Contact your neurologist, gynaecologist or general practitioner for further information to help you through this time.

Australian Antiepileptic Drug Pregnancy Register

For women with epilepsy the absolute risk of birth abnormalities is 4-6% ?double the risk of 2-3% that exists in the general population. Is this increased risk caused by the effects of their seizures; the drugs or combinations of drugs they have to take; their genetic background or environmental factors?

In May 2000 a group of researchers launched a national register for pregnant women with epilepsy. This register will allow them to follow, in large numbers, women throughout their pregnancy and help determine the real factors for this increased risk in birth abnormalities.

Do not stop taking your medication/s without first consulting your doctor as this may result in uncontrolled epileptic seizures with potentially serious consequences for both you and your unborn baby.

The Australian Pregnancy register is a voluntary Australia wide registry of patients who become pregnant while taking an antiepileptic drug.

It is seeking
?women with epilepsy who become pregnant whether or not they are taking an antiepileptic medication, and
?women taking an antiepileptic medication for an indication other than epilepsy.

All it takes is a phone call to the Australian Antiepileptic Drug Pregnancy register. Your call will be answered by a Research Coordinator [a registered nurse] who will provide information about the registry and ask question as to your eligibility.

If you agree to participate, a written information sheet and consent form will be posted to you to sign. Once consent has been received there will be four telephone interviews: enrolment, seven months gestation, following the end of the pregnancy and a one-year follow up.

At each interview you will be asked questions regarding your epilepsy, medication, pregnancy and the baby.

Permission will be sought to contact your neurologist, obstetrician, paediatrician or family practitioner for information about your treatment and diagnosis. It may also be necessary to request from you permission to view your hospital medical records.

Call 1800 069 722 now to register

For further information visit www.victorianepilepsycentre.org.au and go to Australian Pregnancy Register page.