Online Chat Transcript: Women and Epilepsy with Jacqueline A. French, M.D.

This event took place on May 20, 2004.

Posted: June 2, 2004

More than one million women and girls in the United States are living with seizure disorders. A number of individuals joined us online Thursday, May 20, 2004, for the chance to ask a top expert about issues facing women with epilepsy.

Moderator: Welcome to this morning's chat event on women and epilepsy. Our expert is Jacqueline French, M.D., a professor in the Department of Neurology at the University of Pennsylvania. She is co-director of the Penn Epilepsy Center and director of clinical drug trials. French trained in neurology at Mount Sinai Hospital in New York City, and did her fellowship training in EEG and epilepsy at Mount Sinai Hospital and Yale University. She is also a member of the Foundation's professional advisory board.

Question (Jenny B): How does epilepsy affect memory?

French: There are several ways in which people who have epilepsy have their memory affected. Firstly, whatever caused the epilepsy could have produced an injury to the brain affecting the part of the brain involving memory. Secondly, medications for epilepsy can affect memory. Finally, seizures may arise from the area of the brain where memory is processed, and each seizure can cause memory impairment. Some of these problems can be corrected, where as others cannot be. Ask your doctor whether a change in medication might be helpful, and of course the best possible seizure control will give the best chance for memory improvement.

Question (Lori): Recently, I learned women with epilepsy have a higher likelihood of getting bone diseases. Please explain why and what we can do to lessen our risk.

French: Epilepsy itself does not cause a problem with bones. However, there is increasing evidence that some epilepsy meds will cause a disturbance. The best evidence exists for the drug phenytoin (Dilantin). This drug may interfere with vitamin D. Vitamin D is important for calcium in bones. Recent research has indicated that people who have been on Dilantin for a long period of time may have an increased risk of decreased bone density. This can be evaluated with a test known as a dexascan. It is now recommended that a dexascan be performed every one to two years for people on Dilantin. Other medications may also affect bone health, but there is less firm information. It is recommended that individuals who are taking seizure medication should receive dietary supplements of vitamin D with calcium. This will reduce the impact of the medication on the bones. Talk to your doctor about the whether there is impact on bone health from the medication you are taking.

Question (Sarah): My seizures were controlled for years. Recently, I started having seizures once a month. Can stress, diet or sleep patterns cause this?

French: Yes, several of those things can have an influence on the occurrence of seizures. Lack of sleep is often a trigger for seizures. In addition, more seizures may occur during a stressful period, though this is not a trigger for everyone. People with epilepsy should try and have as regular sleep patterns as possible. You should also know there are several other possible triggers for seizure breakthroughs, including some over the counter medications.

Question (Crissi): Is there a connection between mood swings and seizures?

French: There may be several connections between mood swings and seizures. Firstly, again medication may be a factor. Some medications are associated with an increase in mood swings. You can ask your doctor whether the medication that you were on is one of them. Also, people with epilepsy have an increased risk of depression. If depression is an issue, antidepressants work very well. Another factor may be the seizures themselves. Sometimes, people will have a change in mood around the time of the seizure or seizure cluster. In these cases, the best seizure control will produce the best likelihood of mood stability.

Question (Linda): Would a PET scan help to determine where my seizure activity is coming from and identify surgical options and better medications?

French: A PET scan is a very specialized test that is usually only available in epilepsy centers. The purpose of the PET scan, as you have indicated in your question, is to identify seizure onset zone in individuals who may be candidates for epilepsy surgery. However, there is no evidence that a PET scan is useful to determine the medicine that is most likely to give the best seizure control. Unfortunately, this still must be done by trial and error.

Question (Betty Anne): What is your opinion on "kindling,"[that "seizures beget seizures"]?

French: That is an interesting question. First, I should explain what kindling is for those who are not familiar with the term. In animal models of epilepsy, one can "kindle" a seizure focus by repeatedly stimulating a part of the brain electrically. This has led some investigators to believe that seizures in humans might do the same thing. In other words, the more seizures that occur, the more likely that future seizures will occur. If this is true, then finding a medication that would control seizures for some period of time, might produce "dekindling" and eventually the seizure disorder would go away on its own. Then, the medication might be able to be removed without a return of seizures. However, at the present time, there really is no data from humans to support the theory that kindling occurs. This continues to be an area of active research.

Question (Solo): I've read that menopause can either increase or eliminate seizures. Any way of predicting which way I'll go?

French: Solo, you're reading is exactly correct. Menopause affects different women in different ways. This is also true of pregnancy. In both pregnancy and menopause, some women's seizures will worsen, whereas others will improve. There really is no way at the present time to predict which way any one individual will go.

Question (Deborah): Why does my daughter have seizures at night rather than during the day?

French: Deborah, there are different physiological processes going on when people are sleeping than when they are awake. These processes affect the likelihood of a seizure. People tend to have a relatively consistent pattern whereby seizures occur only at night, or in some people only during the day, or in other people during both the day and the night. Having seizures only at night is a very beneficial thing for most people, because there is less chance of injury, and less likelihood that a seizure will occur in public. Sometimes, these patterns can change, when medication is changed, or after surgery.

Question (guest 260): How much stress on the body do seizures cause?

French: The stress from a seizure is very dependent on the seizure type. As you probably know, seizures can vary from brief staring spells, all the way to major convulsions. The smaller types of seizures are unlikely to produce any stress on the body. Convulsions are another matter. They certainly do cause physiological changes, and usually it takes some time before the individual completely recovers. However, as long as the seizures are self-limited, lasting less than three minutes, there is no evidence that these changes are cumulative, or that a person can come to harm from having seizures. There is a condition called status epilepticus, where seizures are very prolonged, or occur repeatedly without a break. This is a very serious condition, which can produce a great deal of stress on the body, and may produce permanent harm. Anybody who is experiencing a prolonged seizure, or repeated seizures, should be brought to medical attention as quickly as possible.

Question (Wendy): Is depression common in women with epilepsy? Do you recommend counseling?

French: Yes, there is an increased incidence of depression in individuals with epilepsy. This may be biological, but also certainly may be related to the stress of having a serious medical condition, and the social dysfunction that may be related. Counseling is very useful, and antidepressants may also be helpful, if indicated. Physicians often fail to recognize depression, or fail to ask about it. If you think you might be depressed, it's a good idea to take the initiative and bring it up with your physician.

Question (Amy): Do hormones or hormonal cycles have anything to do with seizures?

French: Amy, there is very good evidence that some women have increased susceptibility to seizures either immediately before or during menses. This is probably because estrogen is somewhat epileptogenic, whereas progesterone may protect against seizures. During the cycle, there are changes in the balance of estrogen and progesterone. At this very moment, clinical trials are underway to determine whether treatment with progesterone may help women whose seizures are associated with the menstrual cycle. Hopefully, in the next several years, we will have good answers as to the best way to address this problem.

Question (Solo): Follow up to bone loss -- What if you took it [Dilantin] for a long period of time, but have been off it for longer? Still bone loss?

French: Solo, the bone loss that may have occurred during the time they took Dilantin might still be a problem, even years later. Bone loss may be cumulative, and women are at risk even when they don't take medication. To find out if it's a problem, the best idea would be to ask your doctor to get a dexascan. If this is normal, you can be reassured that the Dilantin did not have any negative effect.

Question (SCVaughn): How can you differentiate between memory loss caused by seizures and that lost by meds?

French: Sometimes it can be very difficult to figure this out. One clue would be if the memory is worse right after a seizure or a cluster of seizures. This would be a good indication that the seizures are a greater problem than the medication. However, I have seen waxing and waning memory problems that are related to medication. As a physician, I usually try to attack one problem at a time, to see how I can improve my patients memory to be the best that it can be. This may involve trying to change to a medication that is less likely to affect cognitive function, and also trying to get the seizures under the best control.

Question (guest 260): Can a change in medication change your menstrual cycle?

French: Yes, some medications can cause changes in menstrual cycling. Seizures in epilepsy can also cause changes. Recent studies have suggested that women with epilepsy may have more anovulatory cycles (a menstrual cycle where a normal period may happen, but there is no ovulation) than other women.

Question (Jessica): What are the risks of pregnancy with epilepsy? How do AEDs affect the fetus?

French: Some antiepileptic medications are known to increase the risk of birth defects. Usually, the risk is relatively minor. Women without epilepsy have an overall risk of birth defects of approximately 2 to 4 percent. Women taking antiepileptic drugs may increase that risk to approximately 4 to 6 percent. Some antiepileptic medications produce a higher risk than others. There is less known about the medications that have been recently approved. Some of them are thought to be safer, but more data is needed. Right now, there is an effort underway to find out more about the potential harmful effects of antiepileptic drugs. This is being done through a pregnancy registry. We are urging all women who become pregnant to sign up with the registry. Eventually, when there are enough women on the different medications, we will be able to compare the risks of one medication versus another. The phone number to sign up with the registry, which is run by Harvard, is (888) 233-2334. It is very important that women sign up before the birth of the baby, so that the registry is prospective.

Question (Pauline): I'm going through menopause. My seizures stopped when I went off birth control. Is there a connection?

French: Birth control may have no effect on seizures, but if it has any effect, it's usually a beneficial one. It may be coincidence that your seizures stopped when you went off birth control. I don't think that your chances of having a recurrence of seizures now that you've gone through menopause is any greater then anyone else's.

Question (Cindy): Can medications be stored in the body during periods of low appetite, then released when eating returns to normal?

French: Cindy, there isn't much effect of food intake on medication. Sometimes, the medication will get into the body faster with food, or in some cases when fasting. However, eventually the total amount of medication released should be the same whether you've eaten or not. This means that you may feel some greater early effect of the medicine either taking it with food, or taking it in a fasting state, depending on the medication that we were talking about. However, the medication will not build up in the body. Sometimes your overall need for medication may change depending on your body weight. If you have had a significant change in body weight, you should ask your doctor about whether the dosage should be changed.

Question (Therese): What specific precautions can a mother with epilepsy take with her newborn child? Also, what practices can help prevent seizures in the first few months when a mother is getting little sleep, the catalyst for many seizures?

French: Therese, that is an excellent question. As far as helping to prevent seizures when you're being sleep deprived, I would say that this is a circumstance when you have every right to ask for help if you need it. This means that you should allow your spouse or significant other to help with nighttime feedings. If this means giving a bottle instead of breast-feeding at night, it's probably more important that you get your sleep and function well during the day with the baby, then that all the feedings be breast milk. If you were having seizures during the first few months after the baby is born, there are some things you can do to ensure that the baby is safe. You should change the baby on the ground, rather than on the changing table so that if you have a seizure there is no chance of the baby falling off. You may want to consider buying a baby carrier rather then carrying the baby in your arms, again to prevent the baby falling to the ground. However, you should not do this if you fall yourself with the seizure, as then the baby might be injured. If you have no warning for your seizures and you fall frequently, it's probably a good idea to have somebody else around to help you during these critical months.

Question (Kate): Does caffeine have a bad effect on someone taking AEDs. Worse for women?

French: Kate, as of right now there is no evidence that caffeine worsens seizures unless it is keeping you up at night and preventing adequate sleep. In fact, sometimes medication can make people sleepy, and caffeine can provide the benefits of improving wakefulness.

French: Unfortunately, our time has come to an end. Thank you to all of the people who posted questions. This was really a wonderful opportunity to hear what is on your mind.

Moderator: Dr. French had to leave. She thanks you all for your participation and we will pass on your appreciation to her. A transcript of this event will be posted on the site within the next 10 days. The Foundation would also like to extend its thanks to GlaxoSmithKline who supported today's "Ask the Expert" live event with an unrestricted educational grant. On behalf of the Epilepsy Foundation staff and Dr. French, thank you very much for attending and have a good day!