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What is your occupation and position?
I am a professor of Neurology at Columbia University and I am the Director of the Columbia Comprehensive Epilepsy Center. I am also on the Board of Directors of the National Epilepsy Foundation.
What are some of your major professional accomplishments? For example: positions, publications or awards?
The International League Against Epilepsy has elected me the International Ambassador for Epilepsy and I have been on the board of the American Epilepsy Society. I am also the immediate past chair of the Epilepsy Foundation. My focus has been on caring for people with epilepsy and doing research, particularly into how epilepsy affects reproductive health, health of women and of young people.
Is epilepsy just as common in females as in males, and are there any seizure disorders that are more common in females?
Epilepsy is generally equally common in both men and women. There are within epilepsy a number of types of epilepsy. So epilepsy is not one condition, but it’s a number of conditions that are all associated with seizures. There are some types of epilepsy that are genetic or inherited that appear to be more common in girls whereas epilepsy occurring after a head trauma is found more often in men and boys.
Is there any effect of female hormones on epilepsy? Specifically, what effects do estrogen or progesterone have on seizures?
Girls and women with epilepsy are very much affected by changes in female type hormones estrogen and progesterone and we know that boys and girls may experience changes in their seizures when they go through puberty, for girls when they begin to menstruate. Women will continue to often times experience changes in their seizures over the course of the menstrual cycle. In fact, more often women with epilepsy have very clear-cut menstrual associated seizure patterns. We know that this is related to the hormones estrogen and progesterone in girls and women.
We recognize that estrogen increases brain excitability and therefore increases the likelihood that a seizure will occur whereas progesterone reduces brain excitability and therefore reduces the chances of a seizure occurring. So women and girls may see that they are more likely to have their seizure around the time of their menstruation, beginning about 3 days before menstrual flow and extending into the time of menstrual flow. This is important to know because many physicians are not aware of this. It’s also important to know because we can sometimes use hormones to treat the seizures in addition to using standard anti-epileptic medications. Finally some girls and women will find that their seizures get worse when they start taking hormones for birth control or other reasons. This association between hormones and seizures is important for the doctor to recognize.
Do menstrual disturbances affect epilepsy and if so how?
We recognize that many women with epilepsy have irregular menstrual cycles. In fact probably 40% of women with epilepsy have frequently irregular menstrual cycles and we would only expect that to happen in about 10% of women without epilepsy. So we believe that having seizures and taking anti-epileptic medications in some women and girls may disrupt the menstrual cycle. A seizure is an abnormal electrical discharge in the brain and we have research that shows that the abnormal electrical discharge may alter the brain’s release of hormones that regulate the menstrual cycle and in addition some anti-epileptic drugs change levels of hormones in the body and that also causes a disruption of the menstrual cycle.
Practically speaking we also know that many physicians do not know about this so we feel it is important for girls or women with epilepsy and who are taking anti-epileptic drugs to pay attention to their menstrual cycle and if their cycle is shorter than 23 days or longer 35 days in length this is something that their physician should know about.
Does epilepsy or the medications used to treat it affect the ability to enjoy sexual activity?
Sexuality is very complicated and obviously there are psychological factors and social factors, but there are also biological factors that support having appropriate sexual desire and being able to respond in sexual activity. We know that for men and women with epilepsy that more people with epilepsy than we expect have less interest in sexuality. More men have problems achieving and maintaining an erection and more women find it is difficult for them to become physically aroused. We believe that some of this is a side affect of some of the medications used to treat epilepsy.
There are some anti-epileptic medications, Phenobarbital and Byseline we know for sure depress sexual interest and arousal and we believe that all the anti-epileptic medications are capable of having this side affect in some people. Also having seizures probably affects sexuality again by changing hormones and by causing a disruption in areas of the brain that are important to be a normal sexual person.
So this is yet another area that many physicians are not knowledgeable about and it’s important for people with epilepsy that are taking anti-epileptic drugs to ask themselves “Am I happy with my sex life?” and if the answer is “no” then this needs to be brought to the attention of the physician and a hormone study should be done and then finally if there is no other cause identified it is often times helpful to change the anti-epileptic medicine to another medicine that may not cause this side affect.
Do oral contraceptives have an effect on epilepsy and if so, how? And, can oral contraceptives be taken with seizure medications?
Occasionally a woman will find that her seizures get worse when she starts birth control pills, this is very rare though. A bigger concern is that using some anti-epileptic drugs may cause birth control pills to fail. This is because some anti-epileptic drugs increase the rate at which the body breaks down the birth control pill so that there is not sufficient hormone in the blood stream from the birth control pill to keep the woman from ovulating. The anti-epileptic medications that can make birth control pills fail include Dilantin, Tegretol, Carbatrol, Phenobarbital, Mysoline, these are the medications that are the biggest problem if a woman is also using a birth control pill.
Does epilepsy or the medications taken for epilepsy have any effect upon the ability to have children?
Men and women with epilepsy are more likely to have problems with fertility. We don’t know all the reasons for this, but it appears to be related to having seizures and also be a side affect of some of the anti-epileptic medications. The good news is that the kind of infertility problems can be easily treated, but again many physicians are not aware of the association between epilepsy and infertility. Those of us who are specialist in this area and the Epilepsy Foundation are trying to make sure that obgyn’s know about this so that men and women with epilepsy and problems with fertility are recognized early and treated appropriately.
Will epilepsy get worse during pregnancy?
About 30% of women with epilepsy have more frequent seizures during pregnancy, about 30% get better and 30% have no change in their seizures. We do not know how to predict who will get better and who will get worse, so it is very important that a woman with epilepsy remain on her anti-epileptic medication during pregnancy. Because having seizures during pregnancy of course puts her at risk for injury and it may also make her more likely to have a mis-carriage or pre-term delivery.
What is the chance that epilepsy will be passed on to the baby?
Epilepsy is a pretty common neurological disorder and 2 out of every 100 people have epilepsy. If a mother has epilepsy then the chance of the child developing epilepsy is anywhere between 5 and 15 % depending on the kind of epilepsy the mom has. There are some epilepsies that are genetic and we believe are more likely to be inherited and there are other epilepsies that really have a low rate of inheritance. It is important for a woman to ask the neurologist whether her type of epilepsy is one of those that might be passed on to the child.
Will epilepsy, or the medications taken for epilepsy, have any effect upon the baby and can the baby be breast-fed?
We know that many of the older anti-epileptic drugs slightly increase the risk of giving birth to a child with a birth defect, and those medications include Dilantin, Tegretol, Cabitrol, Phenobarbital and a medication called Depakote. There are 8 newer anti-epileptic medications and we don’t know a lot about those, but we do think that it is important to be conservative in making sure that all women with epilepsy get good pre-natal care during their pregnancy and get very good diagnostic testing that would include a special ultrasound between weeks 14 and 18 of the pregnancy to look at the baby’s heart, head, palette and spinal cord. This way we can know whether the baby has any problems.
For any woman, the risk of having a child with a significant birth defect is about 2-4 out of 100. For women with epilepsy taking the older anti-epileptic medications the risk is about 4-8 out of 100. We suspect that risk can be even further reduced if the woman is taking only one anti-epileptic medication rather than more than one and if she is also taking folic acid at the time of conception and through the pregnancy. Folic acid is a B vitamin that protects against many birth defects for all women; we believe it is especially important for women with epilepsy to get good amounts of folic acid because some anti-epileptic drugs can reduce the level of folic acid.
Anti-epileptic medications do cross into breast milk some of them to a very small extent and others can cross quite a bit. It is something to talk to the physician about, but in general we do encourage women to breast feed if they otherwise would choose to do so. Then the pediatrician and the neurologist will ask her to watch the baby and if there are any problems with irritability, trouble sleeping or trouble feeding it then may be recommended to discontinue breast-feeding, but if the baby is doing well she can just continue.
Should a woman with epilepsy avoid having children because she is on medications for the epilepsy?
More than 95% of women with epilepsy will have healthy children. Unfortunately many physicians over estimate the risks for a woman with epilepsy to have a child and in my experience caring for many women with epilepsy I find that a number of them have been told when they were children, teenagers or young adults by well meaning but misinformed physicians that it is very dangerous for them to have a child. We believe that women with epilepsy should have access to all usual life experiences and for many women that would include having a child.
I believe that women with epilepsy should make the decision whether they want a child based on all the other reasons and if the decision is to have a child then she should establish care with a neurologist before she becomes pregnant so that her anti-epileptic medication can be optimized, so that she can receive supplementation with vitamins such as folic acid and so that she can be followed closely throughout the pregnancy. This will increase the odds that she will have a healthy baby and an uneventful pregnancy.
Is there anything a teenager with epilepsy can do now to prepare for having health children in the future?
It is important for anyone with epilepsy to take ownership of his or her medical condition. For a teenager that means learning as much as possible about epilepsy, understanding why a particular medication has been chosen for them, taking the responsibility for taking that medication regularly as well as taking vitamin supplementation that is recommended by the neurologist. It is also important to establish a relationship with a neurologist and to follow through with the recommended follow-up.
I would recommend that every teenager go to the Epilepsy Foundation
website there is a lot of information about epilepsy in general, information specifically for women and for girls. There is also information on how to be a good self-advocate, meaning how to manage your own epilepsy. Teens can also learn how to be a public-advocate, they can find out about programs available for teens with epilepsy and how they can get involved. I think that if a teenager knows about epilepsy and commits to their own health care and gets involved with this as a social issue that is going to put the teen in the best situation to make good life choices and have a healthy family.
Where can a teen go to get more information about women’s issues and epilepsy?
I think the Epilepsy Foundation website is the best place to go for information.
This Interview was made possible by an educational grant from Ortho-McNeil Pharmaceutical, Inc.
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ed him so much. When he is older he he may be able to go off the medication completely.
wow... I never knew that hormones could cause seizures. Thats really fascinating, and a good piece of information to know. thanks!
