E-Women

Epilepsy, especially if uncontrolled, impacts many aspects of a person’s life raising many concerns. A woman with epilepsy has the joy and burden of childbearing and nurturing and worries about her capacity to do the same. (Men on the other hand are traditionally the bread earners and if epilepsy hampers that aspect of their lives, they feel the greater burden.) Lack of knowledge and understanding about these life events increases tension and worry.

Hormones

Some women with epilepsy experience seizures more often or only when they have their periods. This is referred to as ‘Catamenial Epilepsy’ and occurs at specific times in the menstrual cycle, typically at ovulation or during the period itself. There are certain treatments that help this kind of epilepsy so inform your doctor if you think this is the case with you. Keep a calendar of your menstrual cycle and days that seizures occur, also monitor other factors like loss of sleep, missed dose of medication, tiredness or increase in physical activity and any stress or illness that may affect seizure activity. This will immensely help your doctor to make a right diagnosis.

Sexual Development

Effects of repeated childhood seizures together with effects of medication may delay the onset of puberty. Women with epilepsy can have satisfying sexual lives; however there are reports of lack of sexual arousal. This could be due to a low self esteem / self image. Women may also fear getting a seizure during sex. Talk about your fears to your doctor and counsellor. If the AEDs are contributing to sexual difficulties by altering hormone levels your doctor would be able to suggest alternative medication. On the other hand your counselor would help with increasing acceptance of yourself and your epilepsy. Reassurance from your spouse would also be helpful.

The incidence of polycystic ovary syndrome is higher in women with epilepsy than in women in the general population. This incidence is thought to be higher in women taking sodium valproate. This may lead to problems with fertility.

Marriage

“Should I tell my spouse-to-be of my epilepsy status?” is a question that weighs heavily on those of marriageable age. It is advisable to do so, after deciding that the person is suitable but before the marriage takes place. It is also advisable to take the person to meet your doctor before the marriage, to clarify all doubts.

Contraception

Some anti-epileptic drugs speed up the way the liver breaks down estrogen and progesterone. These are called ‘enzyme-inducing drugs’ and include carbamazepne, phenytoin, topiramate, felbamate, phenobarbital, oxcarbazepine and primidone. This reduces the effectiveness of the Pill. Therefore doctors may prescribe a higher dose of the Pill or suggest use of a barrier method such as a condom or cap as well as the Pill or an intrauterine device (IUD). There is a small risk of having a reflex seizure when the IUD is inserted. Make sure the person fitting the device knows of your epilepsy.

Starting a Family

Visit your doctor and inform him/her of your intention to start a family to ensure your general health and seizure control is as good as possible and that your baby is born as healthy as possible. Many doctors would prescribe folic acid supplements of 5mg a day, to be started before conception as this reduces birth defects. Do not stop taking your anti epileptic medication or reduce the dose without the advice and supervision of the doctor who is treating the epilepsy. The chance of having a normal, healthy child are excellent: greater than 90%.

If you are pregnant or intend to start a family, consider registering with The Kerala Registry of Epilepsy & Pregnancy. This is a program to monitor the reproductive function in patients with epilepsy and offer optimal care – a first of its kind in India. The Registry is located in the Department of Neurology, Sree Chitra Thirunal Institute for Medical Sciences and Technology, Trivandrum 695 011. Contact Person: Dr. Sanjeev Thomas, Phone: 0471 524468 (8 a.m. to 5 p.m.), 0471 446895 (after office hours), Fax: 0471 446433, email: sanjeev@giasmd01.vsnl.net.in.

The attending doctor, or the person with epilepsy or family members could contact the Registry. All information would be confidential.

The Registry is beneficial to the public and medical fraternity in a number of ways:

• It provides state of the art medical services to pregnant women with epilepsy in liaison with their attending doctors.
• It provides preconception counseling to couples with epilepsy in order to facilitate safe pregnancy and healthy children.
• The programme has indirect benefits in terms of continuing medical education to Neurologists, Physicians and Gynaecologists in the peripheral centers.
• The Registry would provide scientific information that would improve the quality of life of patients.

Coping with Labour

It is better to have the delivery in a hospital where any emergencies can be taken care of. Epilepsy per se does not prevent one from having a normal labour and delivery. However remind the hospital staff that you have epilepsy and the timings at which your medication needs to be taken. And make sure that your medication is given to you, even if it is during labour.

Breastfeeding & Caring

Women with epilepsy are encouraged to breastfeed. The amount of AEDs consumed by the baby from breast milk is small compared to what it received when in the womb. However as drug elimination mechanisms are not fully developed in the newborn, the baby will have to be monitored for excessive sleepiness or irritability.

Another problem related to breastfeeding is that sleep gets disturbed. If seizures increase due to lack of sleep, a family member might need to help feed the child with a bottle at night (breastmilk can be pumped and kept in a bottle before the mother goes to bed).

It is better to breastfeed on the floor surrounded with cushions. Stay away from open fires or hot vessels. Make sure someone is around when you bathe the baby and don’t be afraid to ask for help.

Inheritance

There is a 0.5-1% chance that any person can get epilepsy. Epilepsy itself is only inherited in a few rare instances. If the parent has epilepsy caused due to infections or trauma, there is no risk of the baby inheriting the same. However if there is no known cause for the epilepsy, the epilepsy could be due to a low seizure threshold. When one parent is healthy and the other has epilepsy due to a low seizure threshold, the chances of the child inheriting a similar threshold is 2-6%. However a low seizure threshold does not necessarily mean the child will get epilepsy. When both parents have a low seizure threshold the risk increases to 25%.

Some diseases like tuberous sclerosis and neurofibromatosis have a 1 in 2 chance of being passed on to the offspring. These could result in epilepsy

For further information on epilepsy inheritance, consult with your doctor.

Menopause

Menopause is a time of hormonal and physical change. As hormones have an effect on the brain function, changes in these may cause seizure patterns to change. Some women may have more seizures; others may experience less whilst still others may experience no change at all. As age alters our metabolism, medication doses may need to be altered.

It is normal to experience some amount of bone loss as one ages. However some anti epileptic medication may result in thinning of bones. Check with your doctor to see if your treatment has this effect and if so ask him/her to address the same.