Friendly Print preview
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
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.
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
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
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.
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
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
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
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
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
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
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
The two main factors that may cause epilepsy to develop are:
a person's seizure threshold or level of resistance
to seizures, and the occurrence of some sort of
brain damage or injury.
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
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.
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
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
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
During your pregnancy it is advisable to:
get enough rest and sleep [lack of sleep can trigger
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
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
Make sure you get enough sleep try to have naps
during the day as lack of sleep can trigger
To avoid interruptions turn the phone volume down,
put a note on the front door, turn on the answering
Your partner may be able to help with feeding,
bathing and changing nappies or you could do them
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
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 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
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
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.
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
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.