Ask the Expert: The Use of Antiepileptic Drugs During Pregnancy

Did you know that more than a million women with epilepsy take anticonvulsant drugs to prevent seizures? While the vast majority of women who become pregnant while taking these medications deliver healthy babies, new research is showing that some anticonvulsants increase the risk of major malformations (including heart, spinal cord and cleft lip/cleft palate abnormalities) in infants exposed to them during the mother's pregnancy.

I'm feeling that Topamax and other medications which I used during epilepsy affected my memory. So what is the solution? Or, how do I make my memory and mind active? By the way, nowadays, I'm on Keppra, Epival & Frisium. Are these good for me or is there any new medication better than these? I still have my seizures sometimes.

All antiepileptic medications have the potential to affect cognition because they affect the brain. Some seizure disorders such as temporal lobe epilepsy are also associated with memory decline independent of the drugs. Of the drugs you are on both topamax and frisium are associated with memory problems. If you associate the memory problems with the introduction of a specific drug then this should be discussed with your neurologist. The solution is to take as little medication as needed to control seizures. Sometimes different antiepileptic medications need to be tried to determine which medication is best for you. The best medication is the one that works for you! If you are still having seizures, some of your memory problems may be from the seizures and not only the medications. You can try keeping a calendar with your appointments and notes about important issues that you need to remember.

You are currently on three drugs and have failed others in the past. Patients with refractory epilepsy often benefit from an evaluation at a comprehensive epilepsy center. This will identify the options available for your specific epilepsy, potentially including surgery, and you can then make an informed decision on how to proceed.

Do antiepileptic drugs affect your sexual life at all? The reason I ask is because I have no sexual drive at all. I'm 20 years old and I used to have the desire for sexual activity but within the last year or so I've lost it and I've had more frequent seizures within the last year or so. Could the medications be the reason? I've had epilepsy since I was 6 years old.

It is unusual for antiepileptic medications alone to affect your sexual drive, although medications can play a part. In one recent study of women with epilepsy, sexual dysfunction was more common in women with focal epilepsy, those with low hormone levels and those with mild depression. Epilepsy in men is known to be associated with reduced sexual function and reduced testosterone. Blood tests can be performed to check for low hormone levels, which is a treatable condition. Medications can also be adjusted.

Finally it is very unusual to lose sexual drive after many years unless other factors such as medical illness or depression are involved. You should not simply accept this as part of your epilepsy. I would recommend that you discuss this problem with your health care provider so that a proper evaluation can be performed.

I know that there is a 4 to 6 percent chance that a woman with epilepsy will have a baby with birth defects. Does that include women that do take folic acid and vitamins prior to and during pregnancy? Is the medication or seizure what causes birth defects?

You are correct. Children who are born to women with epilepsy are at a slightly higher risk of birth defects. This is due partly to the use of antiepileptic medication but there is an increased risk even in women with epilepsy who are not taking AEDs. The risk is also increased if seizures, particularly tonic clonic (grand mal) seizures, occur in pregnancy so taking medication to control seizures is important. The risk can be reduced by using only one antiepileptic drug, at a low, but effective, dose.

In women who do not have epilepsy folic acid deficiency is associated with birth defects. Many of our antiseizure drugs are either associated with similar birth defects or are folic acid antagonists (make folic acid less effective). For this reason, it is recommended that all women with epilepsy take folic acid. However, there is no data that the risks you mention are in fact less. It makes good sense to take folic acid but there is still an increased risk.

Is it safe to give Depo-Provera to a woman on Carbamazepine or will the CBZ decrease the level of Depo-Provera. I have heard that Depo-Provera should be given every 10 weeks in these situations, but is there evidence that the Depo-Provera is just as effective while it is in the system? I am an Epilepsy Fellow at the BWH and we cannot find good information on this subject.

Carbamazepine causes a more rapid metabolism of the progestin or estrogen component of combined oral contraceptives. The metabolism of levonorgestrel is also increased, so Norplant is not recommended either. Depo-Provera is considered an appropriate method of birth control but its efficacy is probably somewhat reduced if taking carbamazepine.

I've only had four tonic clonic seizures in my life (I'm 29 years old). One of those while I was in labor with my son, but I didn't have any others during the pregnancy. The other three seizures were during the night. I wasn't diagnosed until after my pregnancy. I now take 750 mg of Keppra twice a day and have been seizure free since I started the medication--over a year ago. I want to have another child, but don't want to risk birth defects. I would like to go off the medication long enough to conceive and then have a scheduled C-section--or at least for the first three months of pregnancy? I also would like to nurse. The only answer I get about Keppra and pregnancy is that there just isn't enough information to know for sure

You have had excellent seizure control while on Keppra, and have never been taken off of medication since being started on it. There are several approaches that can be used. Many health care providers would give you a trial off of medication after having been seizure free for two years. There is a substantial portion of people with epilepsy who become seizure free off of medication after having been seizure free for 2 years on medication. You did not specify what epilepsy syndrome you have, but your health care provider can give you an estimate of whether you may become seizure free based upon syndrome. Another approach would be to come off of medication for several months. This approach is used, rarely, because we believe that having a tonic-clonic seizure may be as dangerous or even more dangerous to the fetus than taking medication during pregnancy. The third option is to remain on Keppra at the lowest dose needed to control seizures. Finally you may choose to switch to another drug with more data on safety in pregnancy but this would be done well before you get pregnant as you do not know if it will work for you and/or if it will have side effects. You need to speak with an epileptologist regarding the risks and benefits of each of these approached as they relate to your situation.

I am currently on Dilantin. I am not pregnant and do not plan to be for a little while. I am wondering does Dilantin cause problems when pregnant. Is there a period in which after I come off Dilantin that I should avoid becoming pregnant? Is there lasting affects to me from Dilantin? Compared to other seizure medications what is your opinion of Dilantin?

>Dilantin has been known to cause birth defects in the fetus. Unfortunately all antiepileptic medications have teratogenic effects (adverse effects to the fetus) and we don’t have a lot of information about which antiepileptic medications are best to use during pregnancy. The use of Dilantin in pregnancy is made difficult by the way it works in the blood stream (blood level). There are other drugs that would be more appropriate to use in pregnancy.

Dilantin is one of the oldest medications that we use in epilepsy today. It does have side effects such as hirtuism (coarse features, facial hair), gum hypertrophy (thickening of the gums) and bone density problems. There are some newer medications that may have less side effects than Dilantin. It is important to look at all of the risks and benefits of each medication before changing from Dilantin to something else.

Having read how some people have more seizures while still on medication, I decided to come off Tegretol and have not had one seizure. About the same time I became pregnant. I am approximately eight weeks pregnant and am not sure if I had stopped taking the medication or continued it for the first week after conception. Today I received a phone call from my healthcare provider to say I will need a specific scan at 20 weeks to see if the baby has any malformations specifically spinal defects. How likely is it the baby will have any birth defects? Would it still be possible even if I stopped my medication the week of conception?

Any woman can have a baby with birth defects whether or not they are taking antiepileptic medication. The risk of birth defects in women who are taking medications is about 4 percent as compared to women not taking medication (2 percent). It is common for pregnant women to have an ultrasound and blood test at 20 weeks to check for neural tube defects. Tegretol in particular is associated with spinal defects (about 1.5 percent). As it would persist in your blood for several days after stopping it and you are not sure exactly when you stopped it in relation to conception, your physician is being prudent by assuming that your fetus may have been exposed to low doses.

I would like to know about the use of Polytherapy (Carbamazepine 400 CR and Clonazepam 0.25mg per day) during pregnancy. What are the risks to the baby?

There is an increased risk to the fetus when on antiepileptic drugs during pregnancy. The risk is higher for those on more than one medication (polytherapy) 6 to 18 percent). Risks include major malformations including neural tube defects. In general we try and avoid polytherapy in pregnancy. However, seizures also have adverse events on the fetus so if someone can not be controlled with monotherapy, polytherapy may still be indicated. You are however on relatively low doses of 2 drugs and should therefore discuss with your health care provider whether or not monotherapy trial is reasonable for you.

In 2003, I had a lobectomy because my seizures could not be controlled. I have told my neurologist that I felt that my seizures had returned so he put me in the hospital EEG monitoring unit. I didn’t have any seizures but did have epiliiform spikes (he put me back on meds the day after I was admitted). He continues to taper the meds and last week I had a grand mal seizure (new for me, I always had partial complex seizures before). I can feel them still coming and start to shake, but do not have a full blown seizure (which I am told was severe and lasted a long time). I do not see my neurologist until the middle of September but my medication is still being reduced. I have not had a blood level taken since May. Once I have another seizure, especially a strong one, what are the chances I will have another? Why would meds continue to be tapered off even after all this?

It sounds like you have begun to have seizures again. The feelings that you are having may be simple partial seizures or auras. Your doctor may want to wait to see if you have another definite seizure before he begins medications – that may be why he continues to taper your medication. If you do have another tonic-clonic or partial seizure your chances of having another are high and medications should be restarted to control them. If in doubt call your neurologist and discuss now before making further changes.

I have had grand mal seizures since the age 9 but they are controlled with medication. I have not had a seizure in five years, and now I want to start a family. I was told by one doctor that I should quit taking my seizure medication (Topamax) for the first trimester since that is when all the major organs are developing, but my neurologist says that it is one of the safer drugs and that I can take it throughout my entire pregnancy. I want to do what is best for my baby, should I go off it for the first trimester or not? I'm on a very low dosage--50 mg once a day.

Studies have shown that the majority of patients with childhood onset seizures who are seizure free for two or more years on medications can successfully come off medication without seizure recurrence. Most neurologists recommend at least one attempt to come off medications in patients such as you especially if you wish to become pregnant. However, these decisions must be individualized to your specific case.

There is not much known about topamax and pregnancy. Its safety has not been established. Certainly, if possible, it would be safer to be on no medication during pregnancy but this is assuming there were no seizures as seizures also have potential adverse effects on the fetus.

Why is it that antiepileptic drugs decrease the effectiveness of birth control? I took birth control and still got pregnant!

Some antiepileptic medications increase the metabolism in the liver. Birth control pills are metabolized by the liver – so they are broken down very quickly and do not work as well as they normally would. But they remain an effective method. In addition, only some antiepileptic drugs, those that are called enzyme inducers have this effect. Many of the newer drugs do not affect birth control pills. Finally, other options such as Depo-Provera can also be very effective.

I had a seizure that went something like this: There is a black image that is sort of shaped like the woman on the women's restroom sign, with a round head and a dress. It gets big and small and close and far. It also looks like it is in a tunnel with black and white stripes around it. Sometimes it jumps around and moves back and forth so that it appears blurry. When I see this I get a waxy taste in my mouth. Also, I have loud thoughts in my head. Every thing I think is loud in my head and seems like it is yelling at me. I feel very hyper and nervous when this happens. I also feel like I want to do things fast and make loud noises so that I can hear the loudness in my head. The longer this happens, the louder my thoughts become until they hurt my ears. I try to think "Calm down and just stop thinking so it will be quieter," but that thought is just said loudly in my head. This sometimes happened for a period of up to 10 minutes. I feel scared and hyper when this happens to me. While all of this is going on I am completely aware and can walk and talk. I also stare a lot and zone out to try to make it stop. I feel sort of like I am yelling at myself in my head. I looked online and saw a type of seizure called secondarily generalized seizure that seemed some what similar to mine. I was wondering if you think that this is something other than a seizure and if so what should I do about it? I take the medicine Trileptal and it seems to work good if I never miss a dose. I also take Focalin for ADD. I looked up Depression and bipolar disorder online and both seemed to be some what relative to my situation. I was diagnosed with depression before and took medicine but it really seemed to do nothing for me. I also have a very hard time in school and concentrating on things. My doctor told me that what is happening could be a type of migraine. What do you think?

The diagnoses that would be compatible with the event that you described could be seizure, migraine or psychological in origin. You don’t tell me how often these events occur. If you have them frequently it may be possible to capture them on an EEG in a video/EEG monitoring unit. That would tell you if the episode is indeed a seizure. If you take Trileptal without missing a dose and do not have these events they are probably seizures. Your doctor is correct this event could also be a migraine. The bottom line is that if you do not have any events when taking Trileptal, then you should take it.

My husband has been taking Lamictal for left temporal lobe seizures. He had his first grand mal a year ago ... he seems to be experiencing insomnia more and more. He also has Rheumatoid Arthritis. We are desperate for suggestions. He can take Lorazapan at night but it only works for a short time. He hates prescriptions and is open to natural options. I am struggling to help him. Please advise. God bless.

Unfortunately, natural options have not proven effective for seizures. Medications are needed. In some cases the medicines can make insomnia worse but this is uncommon for Lamictal. For insomnia, treatment depends on the cause. But there are natural options that may help. A sleep routine such as taking a relaxing bath or shower before going to bed, limiting eating after 7 p.m. and limiting any other type of stimulation before going to bed may help. Melatonin, a natural substance at a dose of 3 to 6 mg can be found in health food stores and is also safe and often effective. If that does not work, then an evaluation by a sleep specialist maybe helpful.

I was on a drug called Diamox for 20 years and only had mild staring seizures once in awhile that I was able to live with, then I had a seizure where I was not able to talk and sometimes would be out of it. At the hospital they gave me Dilantin until I became alert, which was quite a while I was told. Since then, I have been taking both Diamox and Dilantin except recently I had two seizures (lost two days of my life brut most of the time I was aware of what was happening but couldn't communicate) and they added Tegretol but I was very itchy so they are taking me off that and putting me on Dilantin, Diamox and now Keppra and I am told they want to get me just to take Keppra in time. I am very scared that meanwhile while they are taking me off these drugs I will have more seizures. Is there any way I can protect myself from this happening? Thanks

It can be very difficult for people like you who are changing medications and are fearful of having a seizure during this time. Diamox was not completely controlling your seizures and in general is not a very effective antiseizure medication so starting on something else is a good thing. The best way to protect against having a seizure during this time is to build up a good Keppra dosage before decreasing the Dilantin too much. Some people are admitted to an epilepsy unit in the hospital to make the change quickly while being observed by trained staff who can stop a seizure if it occurs. While change is scary and can be associated with seizures during the transition, in the long run the approach of trying a new drug in those who are not controlled by the older ones is a good approach.

My Husband and I are interested in trying to have a baby soon and we were wondering about the medications I am taking and how safe they are. I am presently on Keppra and Topamax. Is it better to just be on just one drug and risk a seizure? Thank you for the help.

It is better to be on one drug at the lowest dose that controls seizures. The risk of major malformation is 2 to 7 percent for those on monotherapy as compared to 6 to 18 percent for those on polytherapy. However, having a tonic-clonic seizure during pregnancy can cause harm to the fetus. Therefore, if one medication does not control your seizures it is better to be on two drugs than to have seizures. You should also be taking daily folic acid supplementation. Finally you should be followed in a high risk obstetrical program.

I am a female, 26 years old, who was born with epilepsy. I have Grand Mal seizures. I am concerned about my future... having kids and what effect it will have. I am currently taking Depakote E.R 1250mg. Can I have kids while taking this? How will it effect being pregnant?

Here are some answers to your questions. You can become pregnant while taking antiepileptic medications. There is an increased risk to the fetus when you are on AEDs. This is about a 4 percent risk. The risk is higher if you are on more than one drug. However, seizures during pregnancy can also harm the fetus. The goal of care during pregnancy is to control seizures with as little medication as needed. Depakote is a medication that can cause spinal defects in the fetus. You should consult with your epileptologist long before becoming pregnant to discuss whether a change in medication would be beneficial for you and the baby. It is recommended that all women with epilepsy take folic acid every day. Finally, should you become pregnant; you should be cared for in a high risk obstetrical program.

This event was posted in August 2005.