Ask the Expert (July 2003):
Choosing an Effective Therapy for Women and Girls

Featuring: Jacqueline A. French, MD

Introduction

The most common form of therapy for epilepsy is daily antiepileptic medication. The choice of antiepileptic medication is based on seizure type, the EEG pattern, how well the medicine controls seizures and medication tolerance. Some types of epilepsy respond better to certain medications than others. Seizure patterns can change and the doctor may need to alter medication. Choosing the appropriate medication is very individual. An antiepileptic drug may work well for one person, and not for another.

If a woman or girl wants better seizure control, or feels she is having unpleasant side effects from the medication, she should talk to her physician about other options, like a newer medicine. Sometimes, there is no perfect solution and she will have to choose between some side effects and total seizure control, or no side effects and some seizures. Remember, however, any change in medication may put a woman or girl at risk for break-through seizures and require some temporary limitations in lifestyle (not driving a car, for instance) until the effects of the medication are clear. If medications don’t work, other options like surgery or an implantable device called the vagus nerve stimulator may be discussed.

Women who take birth control pills may wonder if they interact with seizure medication. There may be complex interactions between the hormones in birth control pills and some of the medications used to control seizures. Some of these medications increase the breakdown of contraceptive hormones in the body, making them less effective in preventing pregnancy. It is very important that all of a woman’s health care providers be aware of all the medicine she takes.

Questions and Answers

I've been taking meds for 15 years. What kind of treatment is available for epilepsy in addition to medication?

Many individuals feel the way you do, after they have taken antiepileptic medications for a number of years. Unfortunately, often antiepileptic medications have side effects that impact on quality of life, whether or not seizures are controlled. It has been estimated that up to 50 percent of individuals experience chronic side effects from their seizure medications. Yet, antiepileptic medications remain the mainstay of therapy for epilepsy. Several nonpharmacologic options do exist. One of these is vagus nerve stimulation therapy, which consists of an implantable device like a pacemaker. The device is connected to a nerve in the neck. It stimulates the nerve every five minutes, and in addition a magnet is provided, which can be used to stop a seizure, if there is some kind of warning. The VNS does not work for everyone. It provides substantial seizure relief to approximately one third of patients who try it. However, antiepileptic medications can rarely be stopped , even if the VNS has been successful. Another non-medication option is surgery. The most common surgery is anterior temporal lobectomy. This would only be an option for patients who have focal seizures arising from the temporal lobe. For these patients, removing the site of seizure onset can be a "cure" in approximately 70 percent of people. Even in these cases, medication is often continued for several years after a successful operation. However, it can often be reduced to a more comfortable level. Another option is the ketogenic diet. This is a very strict diet that changes body chemistry. It is primarily used in children. If any of these options interest you, I suggest that you speak to your doctor, and ask him/her to refer you to an Epilepsy Center for more information.

Our daughter has just had her first seizure. She is 11 years old. What should we expect from a first visit to the doctor? Will she be referred to a specialist? What types of questions should we ask? What type of treatment will she start?

This is a very good question. You can get a great deal more out of your doctor's visit, if you are prepared. Since your daughter is a child, she will most likely be referred to a pediatric neurologist. Pediatric neurologists typically see a large number of patients with seizure disorders, and therefore are usually quite knowledgeable about seizure treatment. You should expect that the doctor will take a complete history, including detailed questions about what might have caused the seizure, including any illnesses that might have occurred as far back as infancy and birth. The doctor will also do a detailed examination, and will order an electroencephalogram (a brainwave test) if one has not already been done. If your daughter has truly had only one seizure, it is possible that no treatment at all will be recommended, as many children who have a single seizure will never have another one. The decision whether to provide treatment after a single seizure will depend on the information that the doctor has gained from the history, physical examination and electroencephalogram. You should ask the doctor whether treatment is recommended in your daughter's case, and if not, what the likelihood is that another seizure will occur. If treatment is recommended, you should ask what the common side effects are, both long and short term, and whether there are any significant safety concerns. You should also ask what specific things you should look out for to determine if the drug is causing problems. Also, it would be important to find out whether the doctor believes that he or she knows the cause of the seizure disorder. You should know that after a single seizure your daughter has a very good chance of doing extremely well. Even if treatment is needed, many children outgrow their seizures, and no longer need medication by adulthood. If, however, the seizures continue, you might ask whether your doctor is an epilepsy specialist, and if not, you might ask for a referral. Good luck.

I have found a lot of information about medicines which are used to treat epilepsy. I would like to know if it is possible for epilepsy to be treated with natural herbal vitamins? And, if so what types?

At this time, I cannot recommend treatment with natural herbal vitamins or other homeopathic remedies. These treatments are not given the same rigorous testing as is given to pharmaceutical medications. For this reason, it is impossible to determine how effective or safe they are. Epilepsy is a serious condition, and removal of standard medications has the potential to cause serious harm. Individuals who need seizure medication and do not receive it, can develop something called status epilepticus, where one seizure occurs right after another for a prolonged period of time. This can cause serious and irreversible brain damage. Therefore, I do not recommend that anyone stop seizure medication in order to try a natural herbal remedy. Adding standard vitamins to existing epilepsy therapy is usually safe, and may be beneficial. In fact, many doctors recommend taking a standard multivitamin, calcium, and vitamin D along with standard epilepsy medications. Any other homeopathic medication may be dangerous, and should be reviewed by your doctor before you take it. Many are quite safe, but some have been found to interfere with seizure medications, or even to worsen seizures. It's better to be safe than sorry.

I'm a little confused about what I've read about hormones and seizures. Is it really the estrogen or is it the switch in hormones that sets off the seizures? Since I'm almost 40 years old and have only one ovary, my doctor and I decided to start me on estrogen in hopes of stopping or slowing the cycle and at the same time have my body ready for menopause. The idea was actually mine and he was willing to give it a try. Are we going in the wrong direction with this treatment? Do you have other treatment suggestions for a woman entering menopause years?

Many women find that their seizure disorder undergoes a change at the time of menopause. These changes are not well understood, and research is ongoing as to the causes. Interestingly, some women find that seizures improve as they go through menopause, while others note that seizures worsen. Hopefully, you will find yourself in the former, and not the latter category. In any case, I would not recommend treatment with estrogen. It is now thought that estrogen lowers the seizure threshold, and therefore would make epilepsy worse. If hormonal treatment of epilepsy is attempted, it usually consists of progesterone. In your case, I would recommend that you see what changes occurred during menopause, before you decide to undergo any hormonal therapy.

I am 36 years old and have petit mal and temporal lobe seizures. I was diagnosed with epilepsy almost two years ago. Since my diagnosis, I have been switched from medication to medication countless times trying to get my seizures under control. Any time I call my doctor's office with a question or complaint about my condition, the first question from the staff there is, "When was your last period?" And my reply is usually, "right now." I've been told the hormonal imbalances cause triggers for seizures, and that is obviously true. So, why can't my doctor determine the hormonal levels and prescribe me whatever hormones I need to keep it all under control all month long? Would this work?

It is now fairly well understood that hormones do have an impact on seizures. Many women find that seizures worsen right before their period begins, or during the first week of menstruation. This is called "catamenial epilepsy" This being the case, it would seem relatively straightforward to find an effective way to "balance out the cycle" to control seizures. Unfortunately, it has not turned out to be that simple. Many different treatments have been tried, most involving use of progesterone, one of the steroid hormones normally present in your body. Progesterone is felt to have anticonvulsant (anti-seizure) properties, whereas estrogen, another naturally occurring hormone, is felt to be pro-convulsant (increases the chance of seizure). These two hormones ebb and flow in a cyclic fashion, associated with ovulation and menstruation. When estrogen levels are high in relation to progesterone, some women may be more prone to seizures. However, the impact of these hormones is not the only factor in causing a seizure. Even when women are given additional progesterone, seizures usually do not completely resolve, and they may not even lessen. Likewise, after menopause, when estrogen levels go down, seizures still occur in many women. In addition, hormone treatments have side effects, just like drugs do. A study is currently underway, funded by the National Institutes of Health, to determine whether progesterone therapy is beneficial enough to use it as a therapy in women with catamenial epilepsy. Once this study is completed, we will know a lot more about what the right treatment is. Even before that time, some doctors will try hormonal manipulation. Ask your doctor about it, and if he/she is not comfortable, perhaps you can be referred to someone who is.

While taking my AED daily, would the effectiveness of birth control pills be compromised? My gynecologist has prescribed birth control pills, although I have not yet started taking them. My neurologist says that the pills may not be effective for preventing pregnancy. Do different AEDs affect birth control pills differently? Are there other options you could recommend?

What a great question! Yes, some but not all antiepileptic medications interfere with the birth control pill. Unfortunately, many women are not aware of this fact, and this can lead to unwanted pregnancies. The group of medications that is most likely to reduce the effectiveness of birth control pills, are the older drugs such as phenytoin (Dilantin), carbamazepine, (Tegretal), phenobarbital, and primidone (Mysoline). In addition, two of the newer epilepsy drugs, oxcarbazepine (Trileptal) and topiramte (Topamax) also impact the effectiveness of birth control pills, to a lesser extent. The other newer antiepileptic drugs, namely gabapentin (Neurontin), lamotrigine(Lamictal), tiagabine (Gabitril), levetiracetam (Keppra), zonisamide (Zonegran) do not effect birth control at all. Unfortunately, Depo Provera (the birth control shot) is affected by the same AEDs that interfere with the pill. If you are on one of the AEDs that interfere with oral contraceptives, but you feel that they are the best means of birth control for you, your doctor can prescribe one with a higher dose of estrogen (50 mcg), which will counter-act the interference by AEDs. However, you should know that the higher dose might also increase the risk of side effects. Alternatively, you can use another form of birth control, such as a diaphragm or an intrauterine device (IUD).

I am so frustrated! I tell my doctors I know my seizures are caused by my period - years of tracking. They shrug their shoulders and say, "Yeah, you are probably right." But, they offer no solutions. I want my seizures to stop! My question is this, if I volunteer to have a hysterectomy, will it make my seizures go away?

You should check out the answer to the question above, which deals with the interactions between hormones, menstrual cycles and seizures. As discussed, changes in hormones don't cause seizures, although they influence their occurrence. Having a hysterectomy alone, without removal of the ovaries will have no effect at all. Even if the ovaries are removed, seizures probably won't stop, and may even increase in frequency. Moreover, removal of the ovaries would cause early menopause, which is not only uncomfortable, but can produce other health problems. I suggest that you continue to explore other ways to treat your seizure disorder. Don't give up!

I have so many side effects from my seizure medications. I wonder if it would help if I skipped a dose now and again to help reduce the side effects? Is there anything I can do to stop some of the side effects?

The last thing you should do is miss seizure medicine or take doses erratically. The purpose of taking antiepileptic medicine is to stop seizures. Missing doses can lead to breakthrough seizures. You could end up with the worst of both worlds, both side effects and seizures! If you are having too many side effects, you need to talk to your doctor, and discuss switching to another medication, which you might tolerate better. Side effects can be just as much of a reason to switch as lack of seizure control. There is no guarantee that another medication will be better tolerated, but most people can find a medicine that controls their seizures, yet doesn't interfere with their quality of life. Good luck!

I'm a 34-year-old woman and I have only had five seizures in my life – I'm on a very small amount of Depakote and Lamictal. I would like to know what other natural treatments could help in anyway. Is yoga an option? What about diet and exercise? I am especially interested in alternative treatments since I am planning on becoming pregnant in the next two years.

I would like to refer you to the question above, which deals with homeopathic treatments for epilepsy. A fit lifestyle is always a good idea, and certainly couldn't hurt in improving your overall health. However, this will not replace the need for medication. Planning for pregnancy is very important. One of the medications that you are taking, Depakote, has been found to be harmful to developing fetuses (teratogenic). Probably, your physician will want to discontinue that before you begin trying to become pregnant. The news is somewhat better for your other medication, Lamictal. So far, this medication appears to be safe, although research is ongoing. The American Academy of Neurology published guidelines on the treatment of women with epilepsy during childbearing years. Their recommendation is to remain on the medication that controls your seizures, as long as it is not known to cause serious problems. This is the safest plan for both you and the baby. The most important thing you can do is to have a good and open relationship with a physician that you trust.