Ask the Expert: Questions for Dr. Kimford Meador

Introduction

This month's expert, Kimford J. Meador, M.D., will answer your questions relating to health issues and concerns faced by women living with epilepsy like pregnancy, menopause, anticonvulsants, dating, hormones, stress and mood disorders.

More than one million women and girls in the United States are living with seizure disorders. They face many unique challenges, from changes during the monthly cycle which may trigger seizures to concerns regarding pregnancy. Social factors leave them vulnerable to discrimination and abuse. Yet their plight and the manner in which they are affected has been largely ignored.

As an important part of the Epilepsy Foundation's role in advocating for all people with epilepsy, we are committed to addressing the unique health issues of women with epilepsy.

Please note that the opinions expressed are those of the participating expert. Always consult with your physician before making any changes to your treatment.

I am currently on Keppra but because I would like to have kids in the next year or two my doctor decided to switch me to Tegretol. Is it true that Tegretol is one of the safest drugs to take during pregnancy? Can I breastfeed while taking it?

Tegretol (carbamazepine) does appear to be one of the safest antiepileptic drugs for the unborn child based on our current information. However, no antiepileptic drug can be stated to be completely safe. Tegretol can cause some birth defects, and it can interfere with vitamin K mechanisms increasing the risk of bleeding in the child right after birth. This can be very dangerous, but can be prevented by an injection of vitamin K to the child at the time of birth. I also recommend that the mother take a vitamin K pill (10mg) each day during the last month of pregnancy.

I actually can't tell you if levetiracetam (Keppra) is more or less safe than Tegretol. We need more information on Keppra and on most of the other AEDs. I strongly recommend that any woman who becomes pregnant while on these drugs join a pregnancy registry. In North American, the AED Pregnancy Registry has a toll free number (1-888-AED-AED4); in Europe and other continents, patients should ask their physician about enrolling in the EURAP Registry (http://www.eurapinternational.org).

The vast majority of children born to women with epilepsy are normal, but they are at increased risk for poor outcomes. The risk of the seizures and the drugs both need to be consider. Each woman is different and should consult with her physician to determine her best choice. Please also see responses below.

Breastfeeding is another area where we need more information. However based on current data, I recommend that women with epilepsy breastfeed with the exception of phenobarbital or primidone which can be sedating to the child. There is clear evidence that breastfeeding is good for the child, and we have no definite evidence that breastfeeding when taking AEDs is bad for the child. Further, the child has already been exposed during higher blood levels during the pregnancy than they would be exposed during breastfeeding.

Is it true that Osteoporosis is more common in women with Epilepsy?

Yes, osteoporosis is increased in both women and men with epilepsy. The problem is emphasized in women because they have an especially increased risk after menopause. However, I have seen marked osteoporosis in men with epilepsy. The risk has been linked to several antiepileptic drugs including carbamazepine (Tegretol, Carbatrol), phenytoin (Dilantin, Phenetyk), Phenobarbital, primidone (Mysoline) and valproate (Depakote). The risk does not appear to occur with lamotrigine (Lamictal), but long-term studies are not available. Several of the other new drugs may not cause osteoporosis, but we don't have enough information to be sure. I recommend that anyone who has been on antiepileptic drugs chronically should have their bone density checked. This is especially important for those drugs known to cause osteoporosis.

I was recently diagnosed with Epilepsy after suffering my first grand-mal seizure. It was really scary. Prior to my seizure, I was a pretty normal and healthy 20-year-old college student. I wasn't used to hospitals, and doctors, etc. How will I know if I'm about to have a seizure? Are there any warning signs? I'm sure they are different for each person but just before my last seizure all I remember is having a headache and feeling "weird".

Some people with epilepsy get a warning before their seizures and some do not. Even in those who have a warning, it frequently does not occur with every seizure. The warnings are different for different patients. The warning is usually an "aura," which actually a small seizure and is usually a "weird" feeling just as you described. Other patients describe a warning which is more like a prodrome describe as feeling "bad" or "off" for hours before the seizure. It is not clear what causes this prodrome.

Is weight-gain a common side effect of most anti-epileptic drugs? I am currently on Lamictal and have noticed significant weight gain.

Lamictal (lamotrigine) does not increase weight based on formal studies. The worse antiepileptic drug to cause weight gain is valproate (Depakote). Weight gain has also been reported with gabapentin (Neurontin), pregabalin (Lyrica), and carbamazepine (Tegretol, Carbatrol). Weight loss has been reported with topiramate (Topamax) and zonisamide (Zonogran). Note that other medicines used by patients with epilepsy can cause weight gain (e.g., antidepressants).

What kind of effects do AED's have on the fetus?

AEDs can cause major congenital malformations including orofacial clefts, heart defects, genito-urological abnormalities defects, and bone formation problems. Neural tube defects have been reported with valproate and possibly carbamazepine. AEDs may also cause cognitive and behavioral problems in the fetus.

I am a woman living with epilepsy who is trying to conceive in the next few months. Which medications should I avoid?

Several studies in the last few years have clearly demonstrated that valproate (Depakote) poses the greatest risk to the fetus. I recommend that it not be used as a drug of first choice in women of childbearing potential. For some women, valproate may be the most appropriate drug if her problem cannot be controlled by other drugs. Phenobarbital and primidone (Mysoline) also appear to pose an increased risk to the fetus. The evidence for other antiepileptic drugs is not complete especially for most of the newer drugs. As I stated above, I strongly recommend that women who become pregnant on these drugs join the AED pregnancy registries so that we can continue to obtain new information.

I have been seizure free for three years and I am trying to gradually wean off my meds. I was diagnosed with JME and had one grand-mal seizure over three years ago. Before my grand-mal seizure I had periodic jerks in the morning but no other seizures. I have been on Depakote ever since. I want to get off of this medicine because I've heard that it causes bone loss and has other long-term side effects. Since I have been seizure free for so long do you think it's wise for me to wean off my meds?

Unfortunately, patients with JME almost always will eventually experience recurrent seizures if they come off their antiepileptic drug. Thus, I would recommend that you continue some antiepileptic drug which is effective against your seizure type. There are other choices for JME (e.g., lamotrigine, levetiracetam, topiramate, zonisamide); note that not all of these drugs are approved by the FDA for this seizure type even though there is evidence that they work for JME. You should discuss your options with your physician. I would especially consider a switch from valproate if you have had problems with weight gain or if you are a woman who is considering childbearing.

I have an IUD as my doctor ordered, and so does a good friend of mine (only hers didn't work). I'm concerned because I don't want and can't afford a surprise pregnancy. Which birth control options do you recommend for me if I am already taking Tegretol and Lamictal for my epilepsy?

No contraceptive method is 100%. IUD is a good option as the drugs do not interfere with its effect. Some antiepileptic drugs do interfere with birth control pills (e.g., carbamazepine, phenytoin, phenobarbital, primidone, and at high dosages oxcarbazepine and topiramate). If you are particularly concerned about becoming pregnant, you may consider supplementing the IUD with barrier contraception.

My sister was diagnosed with Epilepsy about six years ago. She averaged about one seizure a year until a year ago when she suddenly began to have a lot more. As a result, the doctor reduced her medication (depacote) because he didn't want her to become addicted to it. Since her dosages were reduced: she began to have more seizures, she lost her job, she can no longer drive an automobile (until she goes a whole year without having a seizure), she applied for welfare and was denied, and she is currently waiting to hear back regarding receiving Social Security benefits. I get so frustrated that she has to go through this with no insurance, and therefore, no medication. Do you know of any programs that might help my sister? Also, do think she should have her medication switched or her dosages increased?

I definitely think that your sister's medication and treatment plan need to be reassessed. I would recommend that she see a specialist in epilepsy. You can go directly to /drsearch.cfm or search "find a doctor" at the Epilepsy Foundation website / . This will allow you to find an expert in your area. Another option would be to inquire at the nearest medical university.

Do women with epilepsy have urinary tract infections more often than other women? I've had about four urinary tract infections in the last year or less. Is your immune system lowered because of seizure medications? I have been given antibiotics each time but after three months the infections seem to come back.

To my knowledge, women with epilepsy do not have an increased risk for urinary tract infections. Immune suppression is not a common effect of antiepileptic drugs. I would recommend that you talk with you physician about possible evaluations and treatment options. You could consider seeing a specialist in this area (i.e., urologist).

I experienced my first-ever seizure occurrence following the birth of my son. Does this mean I have epilepsy?

No, a single seizure does not mean that you have epilepsy. Any brain can seize if subjected to certain conditions (e.g., very low blood sugar). Epilepsy is a disorder of recurrent unprovoked seizures. A decision to treat would depend on other factors. For example, if the exam, MRI and EEG are all normal after a single seizure, patients are not treated unless there is some other risk factor.

I am a woman with epilepsy and menopause. How might my epilepsy medication be affected by hormones and the medication used to treat my menopause?

Lamotrigine (Lamictal) is lowered by hormones, and several antiepileptic drugs can lower hormones (e.g., carbamazepine, phenytoin, phenobarbital, primidone, and at high dosages oxcarbazepine and topiramate). Estrogens can lower seizure threshold and progesterone can raise seizure threshold. I have seen women at menopause who were treated with unopposed estrogen who have experienced an increase in their seizures.

I take Tegretol and I've been seizure free for many years. Recently, I've had sudden jerks in my arms and legs. I've had these all of my life, usually when I'm in bed, but now I have them all day long. Before I would have no more than one or two a night and now I have 20-40 (sometimes more) per day. Why the increase now? Could it be stress related? Is it connected to my Epilepsy?

It is possible that you may have a primary generalized epilepsy (e.g., Juvenile Myoclonic Epilepsy). Tegretol (carbamazepine) does not work well for primary generalized epilepsies. Your doctor may reconsider the diagnosis of your epilepsy type and switch to a medicine that is effective for primary generalized epilepsy. A regular EEG or video EEG monitoring may help clarify the underlying cause of the muscle jerks.

I have been suffering with seizures for two years now. Last year they became significantly worse. I recently read about catamenial epilepsy on your website and the symptoms of catamenial epilepsy sound very similar to the condition I have been suffering with. I have seizures a few days before my menstrual cycle every month. It's been really hard to keep a job and I can't drive. I average about 6 or 7 seizures in a 4 day span every month. I've also been told that I can't receive Social Security and MEDICARE because my seizures aren't frequent enough. Luckily, the hospital I visit provides me with medication. Can you give me any advice?

Many women with epilepsy can have a catamenial pattern to their seizures which means that the seizures occur or increase in relation to the menstrual cycle. Estrogens can lower seizure threshold and progesterone can raise seizure threshold. The catamenial seizures are thought to occur when the ratio of estrogen to progesterone change to favor estrogen, thus increasing the risk of seizures. This actually occurs twice in a menstrual cycle: midcycle at ovulation and at the beginning of menses. However, it won’t occur if there is an anovulatory cycle, which can occur frequently in some women with epilepsy.

There are several options for the treatment of catamenial seizures although none is completely effective in all women. These options include increasing antiepileptic drug dose, changing antiepileptic drug, adding a drug at the critical time period (e.g., Diamox, benzodiazepines), or treatment with progesterone agents.

I am taking 600 mg of Lamictal per day for my epilepsy. I am planning to get pregnant soon and I'm nervous about the risks associated with getting pregnant and carrying the baby to term. Should I be concerned?

Unlike valproate (Depakote) and phenobarbital, the overall risk of malformations is not increased for Lamictal (lamotrigine). However, the North American Pregnancy Registry recently reported an increased risk for cleft lip or cleft palate in children exposed to lamotrigine (Lamictal) in the first trimester of pregnancy. The risk of either defect was 0.89% (8.9/1000) for lamotrigine compared to 0.037% for children not exposed to any drug. Note that this risk has not been confirmed by other pregnancy registries at this point. As mentioned previously, our information on risks to the fetus is incomplete for most antiepileptic drugs. Remember that the large majority of children born to women with epilepsy are normal. Talk with your doctor about your particular situation and options to maximize your changes of a healthy baby. Never change your medicines without consulting your doctor because the seizures may pose a greater risk to you and your child than the medications.

Is depression a more common side effect when taking Primidone than when taking other medications such as Trileptal, Lamictal, etc.?

Barbituates (e.g., phenobarbital, primidone) pose an increased risk for depression compared to other antiepileptic drugs. Several of the antiepileptic drugs have mood stabilization effects; the evidence is best for carbamazepine (Tegretol), lamotrigine (Lamictal), and valproate (Depakote). Lamotrigine can improve a patient's perception of their quality of life, and it appears to actually possess some antidepressant effects.

I recently had a hysterectomy. How might that affect my epilepsy?

There is no evidence that hysterectomy definitely affects epilepsy even in women with catamenial epilepsy. However, if hormonal supplementation is given post hysterectomy, be aware that it might affect seizure frequency. See my comments to a previous question.

This event was posted in September 2006.