Ask the Expert (May 2003):
Seizures and Women over the Life Span

Featuring: Martha J. Morrell, MD.

Introduction:

Just as seizures affect each individual with epilepsy differently, seizures affect women at different stages of the life span in various ways.

During puberty, the time when the body changes and a girl becomes a woman, the dose of seizure medicine that worked before may not be enough for a girl’s new body size. The doctor may order more frequent lab tests to check the level of medication in the blood, to be sure medicine is keeping seizures controlled. There are even certain kinds of seizures that may be outgrown in teenage years.

Some girls may wonder if their monthly periods will make seizures worse. Usually, there is no change in seizure pattern. However, some girls may have more seizures just before or at the beginning of their periods. Although this is not completely understood, it seems to be related to hormonal changes.

At some point in young adulthood, women may start thinking about marriage and pregnancy. During pregnancy, most women will see no change in their seizures. One quarter to one third of women with epilepsy who become pregnant will have increased seizures during their pregnancy despite continued use of antiepileptic medication.

What does the change of life, or menopause, have to do with seizure disorders? Menopause is the time in a woman’s life when her ovaries stop working, her menstrual periods stop and the level of sex hormones in her body decreases. We know that because hormones have an effect on brain function, seizure patterns may change in some women as they go through menopause, just as they may at other times of hormonal change.

Overall, careful discussion with her doctor during her entire life cycle will help a woman better manage her epilepsy.

Questions and Answers.

I have read that most petit mal seizures start with children, mostly females, but mine started in my late 40's at the same time as menopause started. I take medications for my seizures and ever since my doctor took me off estrogen therapy, I have started having seizures again. How is this possible?

The term "petit mal" seizure is one that most neurologists are trying to avoid since the term is used for several different types of seizures. Petit mal means "little evil" and has been used to describe both complex partial seizures arising from localization related epilepsy (also known as partial epilepsy) and for absence seizures which are part of a primary generalized epilepsy. These are two different kinds of epilepsy. While it is true that absence seizures rarely occur after puberty, complex partial seizures arise most often before age 10 and then again after age 50. An EEG and a history taken by your doctor will help differentiate which type of seizure you are having. Partial seizures (which can be simple partial or complex partial) often arise in the years around menopause. Hormone changes begin several years before the menstrual cycle stops. During this time, the brain is exposed to dramatic swings in the amount of estrogen and progesterone - the two main female sex hormones. Estrogen increases brain excitability and makes seizures more likely to occur, whereas progesterone has antiseizure effects. However, the effects of estrogen and progesterone depend on the amount of each and the rate at which these hormones rise and fall. We believe that some women develop epilepsy around the menopause and others experience a worsening in epilepsy because of these hormone fluctuations. Some women find that hormone stabilization (in addition to standard antiepileptic drug therapy) helps. This hormone stabilization can be accomplished with hormone replacement therapy or even with birth control pills. Ask your doctor if either of these options is possible for you. The good news is that hormone therapy only needs to continue until you are past menopause.

I'm 52 years old and have been experiencing increased seizures. I had a hysterectomy 17 years ago; can the increase still be hormonal?

There are several possible explanations for your increased seizures. Not all hysterectomies include the ovaries. An oophorectomy is the term used for a surgery that removes the ovaries and a TAHBSO (total abdominal hysterectomy and bilateral salpingoophorectomy) is the term used for a procedure that removes both the uterus and both ovaries. If only your uterus was removed, then you may be going through the menopause with the typical ovarian hormone changes. If both ovaries were removed, then it is hard to explain your more frequent seizures as caused by hormone changes. Your doctor should check to make certain there are no changes in your blood levels of your antiepileptic medication and that there are no other reasons for worsened seizures, such as poor sleep, changes in alcohol intake, or new prescription or over the counter medications. Supplements such as St John's Wort can also make seizures worse. Rarely, seizures simply become worse with time. If that is the case then changing medication or considering other therapies may be appropriate.

Will menopause increase the onset of seizures?

We don't have all the information we would like about this topic. It seems that some women find that seizures become more frequent and/or more severe at menopause. Menopause begins about three years before menses stop and continues for about two years afterwards. After menopause, some studies suggest that epilepsy gets better for women who have had menstrual cycle associated seizure patterns (catamenial seizures). Certainly more research is needed to be able to predict what might happen to an individual's seizures after menopause.

My daughter, 15, was diagnosed with juvenile myoclonic epilepsy more than two years ago. She is on 200 mg Lamictal two times a day and has had no seizures for the past two years. Her neurologist would like to start tapering her off her meds this November. This is especially scary since she's excited about the possibility of getting her driver's license when she turns 16. What are some things that may happen (hormones, etc.) or we should look for, other than seizures, when tapering off the medication?

Juvenile myoclonic epilepsy (JME) is relatively common genetic epilepsy that arises around puberty and is more likely to affect women. Persons with JME have myoclonic seizures (quick muscular jerks) and usually have infrequent generalized tonic clonic seizures. Some also have absence seizures. These seizures do not cause brain injury or neurological problems but do need to be controlled in order to prevent seizure-associated injury (such as in a motor vehicle accident). JME can generally be diagnosed by an EEG and by the neurological history. Fortunately, JME is usually quite easy to control with one antiepileptic medication at a relatively modest dose. However, this condition does not remit (go away). That means that even though there have been no seizures for a long time, I would suspect that means that the medication has been working well, and not that the epilepsy has gone away. Check with your doctor to see if the epilepsy diagnosis is certain. Also, if you ever feel uncomfortable with a physician's recommendations, it is completely reasonable to ask for a second opinion. Most physicians will be happy to provide you with a name of an epilepsy specialist nearby.

My daughter just turned 18. At the age of 15 she had her first seizure. She has had four more since. The first couple of seizures she had took place the second day of her period. The next three were during break through bleeding from the birth control pill. Her last seizure was seven months ago. Since then, her doctor has increased her seizure medication (tegretol) and has increased her birth control by a little bit. My question to you is: Due to the fact that her period is always involved, would you feel she is possibly having hormonal seizures and if so is there a chance she can grow out of these? It just seems awful coincidental. Also, I know tegretol and birth control do not like each other and knock the strength of each other and that is probably what caused the breakthrough bleeding. But I get the feeling from her neurologist that they really don't believe in hormonal seizures.

Menstrual associated seizures (catamenial seizures) affect at least 30 percent (and maybe as many as 50 percent) of women with epilepsy. A woman with catamenial seizures has at least 80 percent of her seizures during the three days preceding menstrual flow continuing until menstrual flow stops, and/or at ovulation. Ovulation for most women is around day 14 of the cycle (Day 1 is the first day of menstrual flow). The catamenial pattern will only be seen during menstrual cycles in which ovulation occurs. Recent studies suggest that as many as one out of three cycles for women with epilepsy is anovulatory. That means that the pattern may only be evident two out of three cycles. It seems to me that your daughter has shown a hormonal pattern to her seizures. Once seizures persist after puberty, she is unlikely to outgrow them. However, she can continue to work with her neurologist to find the best antiepileptic medication. Sometimes hormone therapy can be considered. This may include birth control pills or treatment with a natural progesterone (in addition to more typical antiepileptic medications). I would be concerned about the breakthrough bleeding. As you correctly state, some antiepileptic medications increase the breakdown (metabolism) of the hormones contained within birth control pills and other forms of birth control that rely on hormones. This has the effect of reducing the hormone so that it is no longer able to prevent pregnancy. The medications that are most likely to have this interaction with birth control pills are Tegretol or Carbatrol, Dilantin and Phenobarbital. Breakthrough bleeding usually means that the birth control pill is not working. I would talk to your daughter's gynecologist about changing to a birth control pill that contains a higher dose of hormone, or about changing to another type of birth control. Another option is to change to an antiepileptic medication that does not have this interaction.

My daughter began having grand mal seizures in August 2002, coinciding with her first period. Her seizures seem to be exacerbated around her cycle. Is it possible to regulate her hormones to help control seizure activity?

The first line of treatment for all types of epilepsy is an antiepileptic medication. Fortunately, there are many excellent medications available so that most persons can find a medication that controls seizures without causing side effects. If seizures continue despite the antiepileptic medication, and if there is a relationship to the menstrual cycle or to menopause, then hormones can be used as add-on therapy. More research needs to be done concerning the hormone treatments that might be effective in epilepsy. Without scientific studies, some physicians will try hormones and observe the woman's response. One approach is to use birth control pills. Another is to use birth control pills continuously skipping the placebo phase and going directly to the next cycle of pills. This approach keeps hormone levels more stable but stops menstruation. Some OB/GYN's feel comfortable letting a woman menstruate every three cycles; others feel comfortable going for as long as a year. Dr Andrew Herzog has published articles showing that natural progesterone (given as lozenges) may suppress seizures in about half of the women treated. Some physicians are now using a natural progesterone (Prometrium) tablet, which is taken every day. Any treatment with hormones should be monitored not only by the neurologist but also by the gynecologist.

I began having seizure-like activity after the birth of my only son. I remain conscious, but have severe motor activity and my speech is often impaired. The activity lasts from seconds to 25 minutes. I have yet to be formally diagnosed. Is there a trend or condition where women begin having seizures after childbirth? I did have an epidural.

I doubt that the epidural had anything to do with your seizures but the pregnancy possibly did. The first step is to get a firm diagnosis. This generally involves seeing a neurologist and getting an EEG and an MRI. You may be having epileptic seizures or even nonepileptic seizures. Nonepileptic seizures can arise with heart rhythm disturbances, hypoglycemia, as a symptom of severe stress or from other causes. If these are epileptic seizures, it is possible that the hormone changes in epilepsy set off an underlying epilepsy predisposition. Also, you must be checked with an MRI of the brain to see if there was any bleeding or other events during pregnancy that might account for the seizures.

My 21-year-old daughter was recently diagnosed with generalized epilepsy. She has only had two seizures - one at the age of 16 and the other at the age of 21. I am disturbed because of the medication that she now has to take three times a day, which in my opinion is excessive for someone who has only had two episodes. Anyway, she is very depressed and upset because now she feels that when she is ready to get married and have children that she will not be able to. No matter what I tell her or the articles that I have given her concerning successful pregnancies of epileptics she believes that she will not be able to have a family. Are there some hard facts that I can show her to prove otherwise?

You are absolutely right to be concerned about her response to this diagnosis. Please have her read the information contained within the Epilepsy Foundation Web site. You might also want to purchase the book "Epilepsy in Women: A Handbook of Health and Treatment Issues" which is available on the Epilepsy Foundation web site. I suspect however, that information won't be enough to make her feel all right. Tell your daughter's neurologist about her reaction to the diagnosis and have him or her talk to her about it. She may need some counseling to be able to understand her emotional response and to put this diagnosis in proper perspective. Epilepsy Foundation affiliates are often able to refer you to mental health professionals who are familiar with epilepsy. As far as her medication is concerned, each medication must be taken at certain time intervals to maintain a steady blood level. A medication that is taken three times has a shorter "life span" than a medication taken once daily. In other words, a three times daily medication is not stronger than a once a day medication. However, many people prefer a medication that can be taken once or twice a day. Taking that mid-day dose is hard to remember and is often awkward. Most antiepileptic medications do have once or twice daily preparations -- ask your doctor about this.

I have two questions. First, what are the chances of passing this to my future children? Genetically speaking. And secondly, could a pregnancy or childbirth worsen my epilepsy? Dumb questions but I have to ask. Thank you.

No question is dumb - ever. Never hesitate to ask your doctor any question you have about your epilepsy or your treatment. Your chance of passing epilepsy on to your child depends on the kind of epilepsy you have. Some epilepsies are genetic - meaning that the epilepsy arises because of epilepsy causing genes. Other epilepsies occur because of brain trauma or stroke or infection. Anyone has a one percent chance of having epilepsy. Children born to mothers with epilepsy caused by some type of brain injury are not significantly more likely to develop epilepsy. Children with mothers who have genetic epilepsy may have a seven to 10 percent chance of developing epilepsy. Pregnancy is not likely to cause any long-term change in epilepsy. However, about one third of women with epilepsy have more frequent seizures during the pregnancy itself. We believe that some women are sensitive to changes in hormones during pregnancy. Blood levels of antiepileptic drugs may drop below the optimal level because of increased breakdown and clearance from the body. Also, some women's seizures become worse because antiepileptic medication doses are reduced or even skipped out of concern that taking antiepileptic medication may harm the developing baby. Generally, ensuring adequate sleep and adjusting antiepileptic medication dosage can handle the worsening of seizures. As far as the other two-thirds of women are concerned, one third experience no change in seizures and another third have better control. I had one patient who had 6 children because that was the only time she was completely seizure free!

What preconceptional planning should a woman take if she has epilepsy? If I take AED's, can it affect my ability to conceive?

Some women with epilepsy have frequent cycles during which ovulation does not occur. The medication valproate (Depakote) seems to be more likely associated with anovulatory cycles than other medications. However, most cycles remain ovulatory so pregnancy may take a little longer but should be possible. If you want to know if you are ovulating regularly, keep track of your cycle length. If your cycle is between 25 and 33 days long (from the start of menstrual bleeding of one cycle to the start of bleeding for the next) then you are probably ovulating. However, if your cycles are shorter than 23 days or longer than 35, tell your doctor. You are probably not ovulating during these cycles and your physician may want to run some tests. It is never too early to consider preconceptional planning. You want to be certain that everything is in order before you become pregnant. Most of the baby's organs are formed in the first two months. That means that by the time a woman knows she is pregnant, much of the baby's critical developmental period is complete. The first step is to make certain that you are on the best AED for you. That means that seizures are as well controlled as possible and that the medication is well tolerated. If possible, treatment should be with one antiepileptic drug and at the lowest effective dose. All women should be taking additional folic acid prior to pregnancy and throughout pregnancy. No one knows the best dose so most doctors recommend that women take between 1 and 4 mg per day of additional folic acid. Find an obstetrician who is comfortable caring for women with epilepsy and ask that your neurologist and obstetrician make and maintain contact. Practice good prenatal care. That means no smoking, no alcohol and good nutrition and exercise. Several pregnancy registries have been established to follow pregnancy outcomes in women taking antiepileptic medications. Results from these registries are now becoming available. Ask your neurologist about the latest information from the registries concerning birth defects or contact the registries themselves (links are available on the Epilepsy Foundation web site). We hope that these registries will very soon identify the medications that are safest to use during pregnancy.