Doctor Q&A Archive

What is an add-on therapy for epilepsy?

An add-on therapy or treatment simply means introducing an additional antiepileptic drug (AED) to a medication regimen that already includes one or more AEDs. It's also known as combination, or adjunctive, therapy. It is often recommended for people who are diagnosed with refractory, or drug resistant, epilepsy.

So what is refractory epilepsy?

It sounds scary, but refractory epilepsy simply means that your seizures aren’t being controlled even though you’re taking the right AEDs. Personally, I don’t like the term because it implies that there’s no chance your epilepsy will be controlled in the future—which may not be the case. The International League Against Epilepsy recently issued a report to the medical community recommending using the term drug-resistant epilepsy. I think that’s a much better way to describe hard-to-treat epilepsy because it helps people with epilepsy and their doctors understand that newer options can improve seizure control for many people with epilepsy.

Who can benefit from add-on treatment?

Anyone who has disabling seizures despite treatment with at least one AED that’s appropriate for his or her seizure type. An epilepsy specialist will want to rule out issues that could be affecting how well your current drug works and, if appropriate, tailor a combination AED regimen for you.

Should I be concerned about adding another drug? Won't more medications just mean more side effects?

You’re right to be concerned about taking additional medications, but some newer AEDs cause fewer side effects, particularly those that affect cognitive abilities such as memory. Compared with older drugs, these AEDs are also less likely to interact in a way that causes other side effects. If combination therapy controls seizures, it can be continued, or the original AED can be slowly withdrawn, depending on side effects and the patient’s preference.

Is there any way to know if the add-on antiepilepsy drug (AED) is the right treatment for me epilepsy?

The best thing you can do is seek evaluation from an epileptologist, a doctor who specializes in the diagnosis and treatment of epilepsy. Most people with epilepsy respond to the first or second AED they try, so continued seizures or intolerable side effects can be a sign that their epilepsy is drug-resistant. A specialist can rule out issues with a patient’s lifestyle, do further testing to confirm the diagnosis of epilepsy and its underlying cause, and tailor appropriate combination therapy.

I take one AED and have almost no side effects, but I still have one or two seizures a year. Should I consider add-on therapy?

The ultimate goal of epilepsy treatment should be complete freedom from seizures with minimal or no side effects. If you’re still having seizures—even just one a year—you may be able to reduce or eliminate them with add-on therapy. Having zero seizures is not possible for everyone with epilepsy, but for many there is a gap between their current treatment—which may seem “good enough”’—and optimal care. You’re doing great, but add-on therapy is something you should discuss with your doctor.

What should I consider before trying add-on therapy?

Before considering making any change to your medication, you and your doctor must determine whether your current AED is right for your type of epilepsy, whether the dosage is correct and whether there are issues with your diagnosis or lifestyle that may keep your medication from working effectively.

What are the reasons why an AED might not control my seizures?

There are a number of factors to be considered in the success or failure of any treatment. First, the diagnosis must be correct. One of the most common reasons for apparent drug resistance is that some types of epilepsy can be difficult for doctors to classify. Choosing the wrong drug not only can fail to control epilepsy but can increase seizure frequency or severity. On the other hand, patients must take AEDs correctly without missing any doses. They should also avoid drinking alcohol, getting inadequate sleep and using other drugs that may interfere with their AED.

What else can people with epilepsy and their caregivers do to get the best treatment?

If you’re having seizures, you should keep a good seizure diary. Note when seizures occur and anything that may have triggered the seizure. Also list any side effects you experience after taking an AED. A detailed description of what happens before, during and after a person’s typical seizure is the most important information a doctor can have to classify seizure type correctly and to choose the most appropriate tests and medications. An eyewitness account can also be extremely helpful, and even essential in some cases. Ask a family member to record your seizures with a cell phone or a camera and play it for your doctor, because that can provide valuable clues for more accurate diagnosis and treatment.

Of course, you should also take your AEDs as prescribed. And tell your doctor if you’re taking any other medications, including over-the-counter drugs and health supplements, because they may affect your AEDs. Finally, be proactive and learn more about your epilepsy and AEDs from reliable sources.

How can patients set goals for themselves and their doctors to ensure that they’re getting the best care possible?

For epilepsy treatment, there should be clear goals: freedom from seizures and freedom from the side effects of their medications. Eliminating side effects or, at the very least, keeping them to a bare minimum is key to your quality of life.

Too often people feel that unpleasant side effects are the price they have to pay for good seizure control. They think, "I used to have more seizures, and now I have fewer, so it's okay," or "I'm used to feeling this way, and I have to put up with it to be seizure-free." This kind of thinking is not good enough! The ultimate goals for people with epilepsy should be freedom from seizures and from side effects.

Even though complete freedom from seizures isn't possible for everyone, should it still be the goal for all care?

It should be. I’m not naive enough to say I can control each seizure for every patient, but that is exactly the goal that patients and their doctors need to keep aiming for.

Many people become seizure-free with their first medication. For those who don’t, the next step is to look at what’s out there. A large number of people can become seizure-free or reduce their seizures significantly if they and their doctors consider other treatment options. This might mean new medicines, a combination of medications or surgery.

What if your doctor says she has done all she can for you?

Then you need to ask her to send you to someone who can offer other options. Be active in your own care. Both patients and their caregivers have to be willing to say, "This is not enough. We need more." I've been part of a number of drug trials, and in every single trial there have been patients who have become seizure-free—and no one knows who those people are going to be. People need to stand up for themselves and keep trying. If a patient isn't comfortable speaking up, a caregiver needs to be an advocate for him or her. That's important, because seizures have an impact on caregivers as well as the person with epilepsy.

What about side effects—are there goals we should set?

Yes. People must be able to function and feel well to live their lives fully. That means eliminating both seizures and side effects. Antiepileptic drugs (AEDs) can produce different effects, so doctors should look at their patients as a whole and choose medications that may produce the fewest side effects for each individual. Patients should let their doctors know up front if they are prone to conditions such as insomnia, depression, osteoporosis or high cholesterol, all of which can be made worse by certain drugs.

What if I find I'm struggling with the side effects of my medication? What should my first steps be?

If you try a new medication and find it makes you miserable, speak up right away. Don't wait for an office visit. You may be able to lower a dosage or change medications over the phone. Sometimes people feel they shouldn't "bother" their doctor, but that's the wrong attitude; you are paying for a service and must feel free to express yourself. If there's any reason you feel you're not getting a proper amount of attention or are being asked to settle for less than you need, consider trying another doctor. Open communication between patient and doctor always makes for the best care.

Anything else I should share with my doctor to attain and maintain optimal care?

Patients need to let their doctors know when they're taking new medications, so their treatment can integrate with their total medical picture. For instance, certain seizure medications can lower the effectiveness of birth control pills, so a prescription of stronger oral contraceptives may be needed.

Even the herbal supplements you take should be part of the conversation. Black cohosh, which is sometimes taken for menopausal symptoms, may interfere with certain AEDs. So tell your doctor whenever you consider adding any supplements or medications. What may seem like a small change can cause big problems, which can often be avoided through good patient-doctor communication.

Once I've hit my treatment goal, am I home free? If not, what are the next steps?

You and your doctor should both remain alert to any changes in your overall medical picture. For instance, taking new drugs for other conditions or simply getting older can call for changes in antiepileptic drug regimens. Older people may need lower doses to keep side effects at bay.

Why is having a good relationship with your physician so important?

Well, from my perspective as an epilepsy-specialized neurologist, my patients and I are making a commitment—usually one that lasts many years—to work with each other. And over that time we'll need to be able to talk about many things, including the long-term aspects of epilepsy that have nothing to do with seizures but have to do with living life with epilepsy—things like planning a family or getting through a tough class in college.

How do you build a relationship that encourages trust and communication?

My patients and I talk, really talk. That's what we do. I let my patients know how I think about seizures and how I think about life with epilepsy, so we're having a conversation, and it's about sharing and asking questions. I want to know them as people because it's going to help me learn what's most important to them, what their goals are, and what they're comfortable with as far as treatment. We enter into a dialogue, and that involves give-and-take and mutual respect.

What can patients do to add to this dialogue?

I encourage patients to think in advance, about what they want to accomplish in a visit and bring in a list of thoughts and questions. Being organized can help them get down to what they want to talk about. Otherwise, the doctor may spend the time asking standard things when the patient wants to talk about birth control or something else that's not normally on the doctor's radar. I love it when patients bring in a comprehensive list of medicines. I love it when they can say, in an organized manner, I've had this many seizures, here's when they happened, and here's how they affected me. If something out of the ordinary has happened with their health since I saw them—if they've been to the emergency room or something—then it's helpful for them to be able to describe it and to bring any relevant information.

What strategies can people use to make these conversations easier and more productive?

I always love it when the patient's friend or a family member comes along—because if he or she has seen problems firsthand and can share what they know about the condition and talk about how it affects their daily lives that can give me a lot of good information.

What if a patient is worried about questioning their doctor's plan of care?

You've got to bring up the hard questions. Don't be afraid of hurting the doctor's feelings! It can help to rehearse questions before your visit with a friend or family member. You can fax questions prior to your appointment. That gives the doctor time to think about them and will help ensure that they're addressed at your visit. The boss in the doctor-patient relationship is the patient. As doctors we are lucky to have people seek our help and ask our opinion, we're working for that person; they're not working for us.

Is there anything else patients can do if they've tried these strategies but still feel their doctor isn't hearing their concerns?

I think you can communicate through some alternative methods. When things aren't going the way you'd like, try writing a letter—it's a great invention! Ask your doctor about other ways you can communicate before or between visits and find something that works for you both. And sometimes there's someone else in the doctor's office with whom you feel a relationship—a nurse, for example. Ask that person to advocate for you.

What's the most important aspect of the patient-doctor relationship?

The idea of mutual respect is very important. Just as I respect and listen to my patients, I like them to respect my time and to understand that there are other people waiting. I'm going to give my patients as much time as possible, but sometimes we can't get to everything in one visit. But we will get to it. One of the true delights of my career is that I've got patients I've known for decades. It's a special relationship.

What's an example of a hard question that a patient should bring up to a doctor?

One of the most sensitive topics of discussion when treating epilepsy is talking about sudden unexplained death in epilepsy (SUDEP). Among doctors, it's a controversial topic of whether to talk about it with patients, so you know it's difficult for patients to bring up. It's hard to know what's best. I've had families who've lost a loved one to SUDEP become angry because we didn't discuss it ahead of time. And I've had others, with whom I did bring it up, say, "This is very frightening. Why are you telling me if you can't do anything?" Having a good relationship with your doctor makes these conversations easier.

You went through medical school, an internship, and a residency while having occasional seizures. Did you discuss your epilepsy with your colleagues?

In medical school, I didn't talk about my epilepsy, even though I was having some issues during my first year that I thought were seizure-related. When I began medical school rotations, I again chose not to discuss my epilepsy. Rotations are short. I didn't tell anyone, “I have a history of epilepsy but am well controlled now.” It wasn't until I was an intern and a resident seeing patients and working long hours that I talked to senior faculty. I remember sitting down with my residency director and saying, “I'm not trying to alter my call schedule, but in case something happens, this is my history.” They understood. I stayed on a normal call schedule and had no issues. Being in medicine made these conversations easier—my supervisors and colleagues understood my condition, which isn't the typical scenario.

I'm already employed, and I'm afraid my supervisor might make an issue of my epilepsy.

Explaining the facts about epilepsy to your employer will help. Ask your boss to imagine you have a condition such as diabetes. Would she be having the same reaction? No—despite the fact that people with diabetes can have problems similar to those of people with seizures. If you're uncomfortable talking to your boss, consider telling a colleague you trust and making a confidential agreement that if you ever have an issue at work, that person will intervene to get you the help you need. That way your condition doesn't become a workplace discussion but someone there knows what to do.

What if I don't feel comfortable talking about my epilepsy?

The choice is yours, but you shouldn't overlook your safety. You could put yourself in a potentially dangerous situation if you have a seizure and no one in your workplace has a way to figure out what's happened. If you decide not to disclose your epilepsy, you should wear a medical ID bracelet or add an “in case of emergency” (ICE) contact to your cell phone, which allows the first responders to call your family or friends.

Should I disclose my epilepsy before I'm hired?

No. Legally it is not required. And you run the risk that the hiring manager might fixate on the potential risks of a medical condition with rare events instead of your résumé. Then, unfortunately, instead of having the opportunity to show how well you can perform a job and benefit the company, the door may not be appropriately opened.

Will my antiepilepsy drug (AED) affect my ability to perform a sport?

Antiepilepsy medications can have side effects that may indirectly influence a person’s ability to perform a sport. “Many antiepileptic medications are associated with fatigue, for example,” says Vazquez. Those on higher dosages of AEDs may experience dizziness and may want to avoid exercise at that time. “Another consideration is that some antiepilepsy medicines can cause joint pain, which may affect performance of a sport,” she says.

What types of exercise are most recommended? Why?

“Any type of cardiovascular exercise, such as walking, running or bicycling, can be beneficial, but no one type of exercise has been proven to be more beneficial than any other for people with epilepsy,” Ardeshna says. He cautions against activities that involve heights, as well as exercises that have the potential for head injury, collisions or falls since resulting injuries may lead to an increase in seizures.

Are there any special precautions that should be taken when exercising?

“General precautions should be taken, including all the necessary protective gear specific to a sport, such as wearing a helmet, elbow, and knee pads for bicycling or roller blading,” Ardeshna says. Water sports involve another level of protection. “Always use the buddy system and swim with another person,” he cautions. In addition, Ardeshna advises wearing a life vest and avoiding swimming in open water, such as oceans, rivers or lakes. You may also want to inform lifeguards that you have epilepsy, especially if your seizures are not under control, and you should avoid diving to protect against head injury.

Is there one seizure type that is more common than others?

“Seizure types may vary with age,” Elizabeth Thiele says. “Adults are more apt to have partial complex seizures.” Partial complex seizures can result in a specific disruption of brain activity, such as head trauma, stroke, or brain tumor. Generalized seizures, however, seem to be the result of genetic disorders, and are not as common by comparison. While there are several generalized epilepsies, fewer adults have these types of seizures. In children, however, generalized epilepsies, including myoclonic seizure types and complex-partial seizures, are more common.

Do the causes of seizures differ by type?

“The causes of epilepsy can range from tumors or infection to damage to the brain due to head injury,” says Thiele. Many different causes can result in similar-looking seizure types. Likewise, a single cause can result in many different types of seizures. For example, she says, patients experiencing early-onset seizures-such as infantile spasms-can later develop generalized or other seizure types.

If my seizures last longer than usual should I change my medication?

“If your seizures consistently last longer than usual, you should see your neurologist (or primary care physician),” Nikesh Ardeshna says. “This difference does not necessarily mean a change in medications is needed. A patient with epilepsy may just require a change in their medication dosage. Never make changes to your dosage on your own. Always talk with your doctor and take the prescribed amount of your medication. The physician will inquire about and look into causes that might have contributed to the increased duration of seizures such as antiepilepsy drug level, or illness, such as the flu.”

Should a medication that didn’t work in the past be tried again?

“In general, even though seizure symptoms may change, the root cause is likely the same,” Thiele says. “Most of the time, we try new medications in the hopes of achieving better control. But with refractory epilepsy that proves difficult to control, we look at all possible options.” If, for example, the patient has undergone some change or developmental maturation, a medication not previously effective may be more effective, and worth a second try. A previously tried medication may also be useful in combination with other medications.

Is epilepsy a hereditary condition?

“While epilepsy may be caused by individual events such as a head injury, cardiovascular abnormality or stroke, the more we learn about the pathophysiology of epilepsy and its causes, the more we realize that many types do run in families,” Thiele says. Some forms with especially strong ties to heredity include juvenile myoclonic epilepsy, which is characterized by seizures that create quick jerking of the arms, shoulders and, sometimes, legs as well as generalized tonic-clonic seizures; benign rolandic epilepsy (a condition most children outgrow), and benign nocturnal frontal lobe epilepsy (seizure occurring most often during sleep). “There are also many genetic disorders, such as tuberous sclerosis complex, of which epilepsy is a symptom,” Thiele adds.

What is the difference between an epileptologist and a neurologist?

Neurologists treat a wide array of brain disorders, including epilepsy. Epileptologists are neurologists with extra training in epilepsy, and treat only that condition. “I have 1,200 patients and they all have epilepsy,” says Thiele. But that doesn’t mean you need an epileptologist, she adds. “Most neurologists are extremely competent at treating epilepsy because they’ve seen so many cases and because epilepsy is so common.” In most cases, a neurologist can help you find the proper medication and treatment to control seizures. When cases are particularly complex or resistant to medication, or if surgery may be indicated, a neurologist often will refer the patient to an epileptologist for evaluation.

I have problems with short-term memory loss. Is it possible to regain short-term memory function?

A lot depends on whether your memory loss is caused by your seizures or a related condition. If your memory loss is directly attributed to your epilepsy, as is frequently the case, gaining seizure control could help eliminate frustrating memory loss. Sometimes, though, the loss is caused by an accompanying condition, such as depression. People with depression frequently experience short-term memory loss, Patel says. If medication is unsuccessful at correcting the problem, non-medicine therapies such as exercises that teach the mind to focus and remember are often helpful.

What is the difference between complex partial and tonic-clonic seizures?

A complex partial seizure involves a person who shakes or jerks on one side of their body, without being aware of doing so. A generalized tonic-clonic seizure (formerly called a “grand mal” seizure) involves a person shaking both arms and both legs symmetrically, without awareness. “It’s very important for the doctor to know what type of seizure you’re having, because it will help dictate what treatment options are available,” Patel says. “Certain medications are best for each condition. It’s also important for people with epilepsy, and their families, to be aware of the types. For example, if a person who normally experiences complex partial seizures has a tonic-clonic, it’s important to be able to report the change to the physician,” Patel says.

What should I tell others about my epilepsy, or the epilepsy of my loved one?

“The most important thing for people to know is that epilepsy is a treatable condition that does not have to cause significant impairment in life,” says Patel. Even today, many people mistakenly associate epilepsy with impairment. The best thing to tell others is that you have a medical condition. And, as with anyone else dealing with a controllable medical condition, there’s no need for you to be seen as different or unusual. “People with epilepsy are just like anyone else,” Patel says. “That’s something patients, families, and acquaintances need to know.”

If my seizures are under control, why should I tell others about my epilepsy?

In some instances, such as getting a driver’s license, you are required to reveal your epilepsy (laws vary from state to state as to how long you must be seizure-free before being permitted to drive). And, though legally you are not bound to disclose your medical condition, it’s wise to tell your employer about your epilepsy if safety is a factor (for example, you operate heavy machinery). But there are other reasons to be open about your epilepsy with coworkers, extended family, and friends, Patel says. Explaining your condition to others helps reduce misperceptions others have about epilepsy, and helps create a support network for you. “It’s important to let people know how to respond if you have a seizure,” he says. “The more people you involve, the more chance somebody will be able to provide help if you need it.”

Whenever I tell friends or family members that I have epilepsy, they look at me as though I’m going to fall on the floor with a seizure at any moment. What can I say to put them at ease?

First, it’s important to put yourself at ease by realizing you are a normal person with a treatable medical condition. “You are still the same person you were before the diagnosis,” says Pellock. “Why should a name make you any different?” If you project confidence, others are likely to respond the same way.

Explain to people what sort of seizures you experience and how they are being controlled. They should know how to respond if necessary—for example, by placing a pillow or soft object under your head and not trying to pin you down. Holmes sometimes videotapes patients so they can see what their seizures look like. “Once they’ve seen themselves on tape, they usually say, ‘That’s not as bad as I thought.’” And they are better able to explain the condition to other people.

If I feel low, how can I tell if it’s epilepsy-related depression or just the blues?

While everybody feels down from time to time, there is a link between epilepsy and clinical depression, and it’s not known why. If your depression won’t go away or begins to get in the way of sleeping, eating or other daily activities, it’s important to speak with your doctor. “Don’t be afraid to use the term ‘depression,’” Holmes advises. “Not all physicians are aware of the link between epilepsy and depression.”

The good news is that depression related to epilepsy is quite similar to other forms of depression, so antidepressant medications often help. “Most of these are quite safe,” and they can be used along with epilepsy medications, Pellock says. But every patient responds differently to medications, so it’s important to work closely with your doctor to find the right mix.

My children are still very young. What happens if I’m alone with them when I have a seizure?

Until your seizures are reliably controlled through medication, you may want to avoid situations in which you are the only adult caring for small children. This is especially important if you are experiencing tonic-clonic seizures, which can leave you feeling disoriented for up to an hour. If your seizures are under control, taking a few steps may help prevent problems. “In any situation, ask yourself, ‘What would happen if I had a seizure right now?’” Holmes advises. Change diapers on the floor rather than on a changing table, bathe children with a sponge rather than in a tub, and don’t handle hot drinks or hot food while holding a child.

Some people with epilepsy experience an “aura,” which is a kind of warning that a seizure may begin, sometimes described as a “funny feeling.” If this happens, place the child in a crib, playpen or other secure place, call a neighbor of friend, and then make sure you are safe from a fall or other dangers.

My doctor and I agree that my current treatment isn’t working. He wants me to switch to a new medication, but I’m nervous. Any advice?

Being nervous is natural. One of the biggest fears is that stopping one drug and starting another will lead to seizures if the new medication doesn’t work. “What we do is switch gradually, starting the new medication while the patient is still on the old one,” Holmes says. So there’s never a time when you’re not getting at least one form of treatment.

Don’t let nerves prevent you from making the switch, Pellock advises. “We are fortunate that we have many choices,” he says, and your doctor may want to keep trying until you’re matched with the right medication. And don’t be afraid to suggest a new medication, even if your doctor hasn’t mentioned it. Says Pellock: “Ask your physician. Take control and become an active participant.” Finally, if you do make a switch, be sure to alert a spouse, partner or friend, asking them to be on the lookout for any changes in your behavior or moods that you may not be able to notice in yourself.

Will getting enough sleep and exercise help me avoid seizures?

It certainly can help. Though physicians don’t yet know why, there is a clear link between lack of sleep and seizures. In fact, epilepsy specialists sometimes use sleep deprivation as way to induce seizures under controlled circumstances in patients they are diagnosing. “Getting a good night’s sleep doesn’t necessarily mean you won’t have a seizure, but it does work in your favor,” says Gregory Holmes, M.D., chief of the neurology section at Dartmouth Medical School and president of the American Epilepsy Society. And sleeping on a regular schedule can be just as important as the number of hours you sleep, adds John Pellock, M.D., professor and chairman of the division of child neurology at Virginia Commonwealth University.

There’s less of a clear-cut connection between lack of exercise and seizures, but the feeling among physicians is that working out regularly may help reduce their frequency, according to Dr. Holmes.

What role do environmental triggers such as stress or flickering lights play in causing seizures?

Though stress is often mentioned as a cause of seizures—and while aiming to minimize stress is always a good idea—Dr. Holmes says the connection between stress and seizures is less common than many people think. In some cases, however, stress, as well as other triggers such as flickering lights and fever, can bring on a seizure.

The reality is that you can’t avoid all potential triggers, but if you know which tend to affect you, simple precautions may help you avoid problems. Dr. Pellock tells of a young patient with photosensitive epilepsy who experienced seizures whenever she rode in a car, because of the flickering effect of sunlight passing through trees. She learned that it helped to read while riding. Your doctor can help you identify tactics that may work for you. In most cases, though, taking medication as prescribed is the best way to minimize or eliminate seizures.

What’s the best way to let friends or colleagues know about my epilepsy?

Often, a matter-of-fact approach works best. If the people you tell seem concerned, it’s probably because their knowledge about epilepsy is limited. “It’s fear of the unknown that makes people worry,” says Dr. Holmes. “So explain that epilepsy is a medical condition, just like diabetes or high blood pressure, and that in most cases, it too can be controlled with medication.” If you are subject to tonic-clonic seizures, assure people that short of helping you avoid hitting your head, the best course is not to get physically involved.

Another way to make people more comfortable with your epilepsy is to remind them that many people have epilepsy and thrive. “Just about every profession has people who have had seizures,” Dr. Pellock says. “Athletes, politicians, physicians, lawyers, you name it. Alexander the Great had seizures.”

My doctor seems satisfied with my progress, but I’m not. How can I ask him to do more?

Your physician is trying hard to help, but you have every right to seek additional expertise, especially if you feel frustrated by a lack of improvement. Dr. Holmes suggests asking your physician for the location of the nearest epilepsy center. There are more than 110 such centers around the United States, each with a range of specialists focusing on specific aspects of epilepsy. “Patients should not be afraid to ask,” Dr. Holmes says. “You won’t offend your doctor. Most physicians realize these centers have a lot of individuals with expertise, from psychologists to neurosurgeons. It’s a team approach.”