Taking Stock: Asking About Side Effects

Studies show that a significant concern for people with epilepsy is side effects of seizures or treatments. The following is a review of some of the most prevalent side effects. For each, we have included a list of questions to discuss with your doctor.

Changes in Appearance

Some antiepileptic drugs may cause changes in how you look. These are sometimes called "cosmetic side effects." For example, some medications may produce more masculine features in women, extra facial and body hair, acne and, in susceptible people, overgrowth of gums. On the other hand, hormonal changes unrelated to the medications can produce some of these side effects.

If changes in your appearance are troubling you, let your doctor know. If the medication is causing the problem, there may be other options that would work better for you. Here are some questions that might be asked of your doctor:

• Are these cosmetic side effects the result of my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication's generic version eliminate this side effect?
• Would it be possible for me to try an entirely different medication that is not associated with this side effect?
• How do other people deal with this problem? What can I do if medication adjustments don’t work?

Clumsiness

Clumsiness may be a side effect of an antiepileptic drug. It is also possible that nerve damage or certain conditions in your brain related to the seizure disorders/epilepsy is affecting your control of movements and leading you to drop things. Dropping things because of a suddenly loosened grip might also be caused by very brief seizures. Check with your doctor about both possibilities if clumsiness is limiting your ability to lead an active life.
Questions for your physician might include:

• Is my clumsiness being caused by my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication's generic version eliminate this side effect?
• Are my seizures under control, or do I require testing for that answer?
• Are there any other conditions I might have, other than epilepsy, which might explain this problem?

Two different types of seizures are easily misconstrued as clumsiness: atonic seizures (also called drop attacks) and myoclonic seizures. An atonic seizure is when a person suddenly collapses, and after about 10 seconds, completely regains consciousness and is capable of walking around. A myoclonic seizure is a sudden brief, massive muscle jerk that may involve the whole body or parts of the body. It may cause a person to spill a drink or fall off a chair.

Depression

There are many types of depressed mood, some much more disabling than others. Everyone feels sad or unhappy sometimes; however, deep feelings of sadness or hopelessness for no apparent reason require treatment.

Depression is, unfortunately, quite common in people with epilepsy. Feeling depressed may be associated with certain medications, or may in some cases be related to the effects of seizures on the brain. Depression may also be related to quality of life and the impact of having epilepsy on your life. The important thing to remember is: Depression can be treated. If you feel overwhelmed, anxious and unhappy much of the time, don’t wait. Let your doctor know as soon as possible about how you are feeling and find out about how mood disorders can be treated. Sometimes seeing a counselor can help. Sometimes medications are needed to treat the problem.

Some questions you might ask your physician include:

• Is my depression being caused by my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication's generic version eliminate this side effect?
• Is it dangerous to mix epilepsy and depression medications? Are there any drugs that can treat both at the same time?
• Is there another form of treatment for depression in people with epilepsy other than medication?
• Can you recommend a counselor?

Depression, despite its high rate of occurrence in people with epilepsy, is still thought to be wildly under-diagnosed – in particular, for people who have complex partial seizures. The lifetime-to-date major depression rate in epilepsy, according to a study that was published in the medical journal Epilepsia, has been reported to be nearly 60 percent for patients with complex partial seizures. For all types of seizures, the rate was reported to be nearly 40 percent.

Difficulty Concentrating

If having difficulty concentrating is a relatively new concern, it may be associated with the medication you are taking. If it is something that has been constant since you began having seizures, it may be related to the same conditions in your brain that are causing the seizures. Check with your doctor to see if there is anything available that might help you focus on things that are important to you.
Here are some questions you might consider asking your physician:

• Is my lack of concentration being caused by my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication's generic version eliminate this side effect?
• Is it possible that I have attention deficit disorder or some type of mood disorder?

Treatment may improve your ability to concentrate. Sometimes, a more thorough evaluation of your ability to pay attention is needed and you may benefit from suggestions from health professionals such as psychologists or counselors or nurses on how to cope with it.

Dizziness

Feeling dizzy is a common symptom of many different problems and the cause is often hard to sort out. It is a fairly common side effect of several antiepileptic drugs. If you have just started a new drug and are experiencing dizziness, it is possible that the feeling will go away as you become more used to the medicine. Or, the amount of medicine you are taking may have to be changed. 

Dizziness that comes and goes quickly can be a symptom of a type of seizure. Keep track of when that kind of episode happens, what it feels like and how long it lasts, and let your doctor know. Sometimes other testing may be needed. Severe dizziness should always be reported to the doctor. 

Questions for your physician might include:

• Is my dizziness the result of my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication’s generic version eliminate this side effect?
• Is it possible that I have brain damage or a separate medical problem that is causing my dizziness?
• Is it necessary for me to reconsider certain activities, such as driving, until this problem is resolved?

 

Fatigue

There are many causes of fatigue and sleepiness in people with seizure disorders/epilepsy. If seizures are disrupting your sleep, or if you have other sleep problems such as sleep apnea (where breathing stops briefly several times a night), you may feel unusually tired during the day. 

Many epilepsy medications also produce feelings of fatigue, sometimes because of the dose, sometimes because of how individual people react to the drug. If fatigue is preventing you from enjoying activities and is affecting your life in unpleasant ways, here are some questions you

• Is my medication the cause of my fatigue?
• Should I see a specialist, or is adjusting my sleep schedule enough?
• Could this be a sign that I am depressed?
• Am I taking the appropriate dosage? Or could I be taking my medication incorrectly?
• What should I avoid so this won't happen?
• Is my fatigue at a level where I should reconsider certain activities, such as driving, until the problem is resolved?

According to study abstracts published in 2001 in the American Epilepsy Society Proceedings, epilepsy drugs can affect sleep and people with intractable seizures have a high prevalence of sleep disorders. Phenobarbital, phenytoin and carbamazepine may all decrease REM sleep, and gabapentin can increase slow wave sleep. A separate study that was published in the medical journal Neurology in 2000 reported that about 33 percent of adults with epilepsy have sleep apnea. 

It is possible that your doctor will be able to suggest some changes in treatment that will help, or suggest tests to determine the cause of your fatigue.

Headache

Headaches may occur as part of seizures or, more commonly, following seizures. Migraine headaches are also common in people who have seizure disorders/epilepsy. Painful headaches can limit your activities and well being in many ways.

On the other hand, many people develop headaches as symptoms of stress or other medical problems. If you have headaches, chart when they occur on your seizure calendar and share that information with your doctor. If your headaches are related to seizures, considering ways to improve your seizure control may be the best solution.

Here are some questions you might consider asking your doctor:

• Are my headaches being caused by my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication's generic version eliminate this side effect?
• Is it safe for me to take an over-the-counter drug to alleviate my headaches?
• Could this be a sign of brain damage or some other type of medical issue?

In a study published in the medical journal Neurology in 2001, it was reported that headaches related to seizures, either before or after, occur in 47 percent of people with partial seizures, including temporal lobe and extratemporal lobe seizures. Forty-four percent of the people reported headaches after the seizure, and three percent said the headaches came before.

Poor Memory

Memory difficulties can occur for many different reasons. In some people, memory problems may be related to use of certain medications, or to the effects of seizures. Having a seizure may result in memory gaps for the period immediately before it occurred. Having seizures over many years may also affect the memory area of the brain. 

If memory difficulties suddenly developed following a change in medication, let your doctor know. Questions for your doctor might include:

• Is my poor memory being caused by my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication's generic version eliminate this side effect?
• Could this be a sign of brain damage?
• Will my poor memory be permanent? Or might I experience lasting effects?

If it has been a concern for some time, it is more likely to be related to seizures. Check with your doctor. You may need memory testing to see what types of memory problems you are having. The results may help your doctor tailor your treatment and suggest ways to help you cope with memory difficulties.

Sexual Problems

Studies show that seizure disorders/epilepsy may be associated with reduced sexual activity and sexual satisfaction in both men and women. Seizures or medications may affect sex hormones.

If hormones are not working properly, sexual response, sexual arousal, and interest in sexual activity can be affected. At the same time, some epilepsy medicines can interfere with sexual response. If you are taking medicines to prevent seizures and are concerned about these issues, here are some questions that you can ask your doctor:

• Is my medication to blame for my sexual problems?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Would a supplement, like Viagra, safely cure this problem?
• Could my medication's generic version eliminate this side effect?
• Could I experience permanent effects?

 

Thinning Bones

Perhaps you have just had a bone scan that showed your bones to be thinning, or you may have had many broken bones over the years. Perhaps you have been taking antiepileptic medicines for several years and are concerned that they may be affecting your bones. Several of these medicines may affect bone health when used over an extended period of time.
Talk with your doctor about your drug’s potential to cause this effect to see whether you should have a bone scan.

Questions may include:

• Are my thinning bones the result of my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication’s generic version eliminate this side effect?
• Would calcium supplements and diet help avoid this problem?
• If I have osteoporosis, is there a treatment that might stop or even reverse this process?

This side effect, though possible in all ages, is of particular concern for elderly women with epilepsy. According to a study published in June 2004 in the medical journal Neurology, "Continuous antiepileptic drug use in elderly women is associated with increased rates of bone loss at the calcaneus and hip. If unabated, the rate of hip bone loss among continuous antiepileptic drug users is sufficient to increase the risk of hip fracture by 29 percent over 5 years among women age 65 years and older." A separate study, also published in Neurology in May 2002, said that the longer epilepsy patients took medication, and the more medication they took, the lower the bone mass density.

Unsteadiness

Unsteady walking or problems with balance can be a side effect of several medicines used in the treatment of seizure disorders/epilepsy. If unsteadiness is limiting your activities and making you afraid to go out, let your doctor know.

Questions might include:

• Am I experiencing unsteadiness because of my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication's generic version eliminate this side effect?
• Could I have a separate medical condition that is causing this problem, and do I require testing?
• Is it necessary for me to reconsider certain activities, such as driving, until this problem is resolved?

Since other medical conditions can affect balance and walking, your doctor may want to do a neurological exam to check for other possible causes as well.

Vision Changes

Certain vision changes, such as blurry or double vision, may be side effects of medication. Sudden, temporary changes in the way things look may be related to seizures.
Seizures that take place in the vision areas of the brain can alter the way things look to you while the seizure is taking place. If you are experiencing visual changes that are troubling and frequent, let your doctor know about it. If s/he thinks they are related to the seizure medications, he may suggest changing the way or time you are taking them. If the problems are seizure-related, better seizure control may help. 

Questions for your physician might include:

• Is my vision being affected by my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication's generic version eliminate this side effect?
• Should I consult my optometrist? Should he or she be made aware of the situation, and would he or she be of any help?
• What are the chances that my vision will be affected permanently?

 

Weight Gain

Weight gain or loss can occur in people with seizures just as it does in all people. However, problems associated with seizures or use of certain medications can sometimes make weight gain more likely. 

If you have gained unwelcome pounds since being placed on an epilepsy drug, here are some questions you can ask your doctor:

• Is my weight gain being caused by my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication's generic version eliminate this side effect?
• What should I avoid so this won’t happen?
• Should I increase my amount of exercise, or go on a specialized diet to help reverse this process? Or could this affect my medication?

Weight changes can be seen in certain hormonal disorders, as well as depression. Your health team can advise you on safe ways to achieve a more healthy weight.

Weight loss

Just as weight gain can be a problem with some medications, so may its opposite. Weight loss and loss of appetite are associated with some antiepileptic drugs. If weight loss is a concern, these are some questions you can ask your doctor:

• Is my weight loss attributed to my medication?
• Am I taking an inappropriate amount of medication? Or could I be taking it incorrectly?
• Could my medication’s generic version eliminate this side effect?
• How much is too much weight to lose?
• Could I be suffering from depression or any other condition?

On the other hand, weight loss can be connected to depressed mood, loss of interest in food, and other health conditions. Weight loss when there’s been no change in your eating patterns can be a sign of other illness. Again, let your doctor know that you have been losing weight.