The FDA has issued an alert highlighting concerns that AEDS (called antiepileptic drugs) used for epilepsy may increase the risk of suicidal feelings or behaviors in people taking many of these drugs. This report examined results of some studies that had already been done on seizure medicines and looked at the numbers of people who had side effects involving suicidal thoughts or behaviors. The full report and process used to come up with these findings is not yet generally know. However, the results cited so far appear to suggest a rare chance that a person taking one of the seizure medicines studied may experience suicidal feelings or acts. For example, suicidal thoughts and behaviors occurred in only 3.5 out of every 1,000 people taking one of the seizure medicines for the treatment of epilepsy, as compared to 1 of 1,000 in those taking a placebo or inactive drug.

While these figures may seem alarming, it’s important to know that changes in mood or behavior may occur as part of a neurological problem such as epilepsy or head trauma, or as a consequence of treating a neurological problem. In fact, depressive disorders, including suicidal thoughts and behaviors occur more frequently in people that suffer from various neurologic disorders such as epilepsy, migraine, stroke, and certain movement disorders like Huntington’s Disease.

So what does this mean for people with seizures and their families? Here are a few Fast Facts about seizures, epilepsy and moods.

• When do depressive episodes occur? Depressive episodes occur more frequently in people with seizures than in people without seizures. These episodes have been identified in 25% to 50% of people with epilepsy at some point in their life. Sometimes mood changes may be one of the symptoms of an aura or seizure. Mood changes may also occur after a seizure or a cluster of seizures. For example, the symptoms of depression may appear for up to 5 days from the time of the seizure and the symptoms may last between a few minutes to several days. More often, depressive episodes occur independently of the seizures.
  • It is important to understand that the relation between depressive episodes and epilepsy can be very complex. Not only are people with epilepsy at higher risk of experiencing depressive episodes, but people with a history of depression have four to seven times higher risk of developing seizures. Unfortunately, depressive episodes often are unreported by patients and families and many people do not get evaluated or treated appropriately.

• What kinds of mood problems may be seen? Some people notice symptoms of depression such as irritability, mood swings, sadness, or anxiety that may or may not be associated with other symptoms. Many times these problems are temporary and go away on their own.
  • When mood changes last 2 weeks or longer and interfere with a person’s ability to function, they may be considered a major depressive disorder, or ‘clinical depression’. Here are some of the symptoms seen with major mood changes: depressed mood, irritability, sadness; feeling hopeless, helpless, or guilty; low energy, fatigue or motivation; loss of interest or pleasure; poor self-esteem and confidence; difficulty sleeping or sleeping too much; appetite and weight changes; difficulty concentrating and making decisions, and thoughts of suicide or death. If these problems are seen, it’s important to talk to a doctor right away to get the right kind of help.

• What causes depressive episodes? Usually, it’s not just one factor, but a combination of issues that can lead to depressive episodes.
  • At times, social problems associated with having epilepsy contribute to people feeling depressed.
  • There can also be an imbalance of certain chemical substances in the brain called ‘neurotransmitters’. These substances can also be ‘off balance’ or affected in someone who has had head trauma, seizures or other neurological problems.
  • It’s important to remember that certain areas of the brain are involved with our feelings and behavior. When brain problems affect these areas, then mood and behavior changes may be seen. In epilepsy, some studies have shown that the location and type of seizures seem to be associated with depression, such as partial seizures involving the temporal, frontal or limbic areas of the brain.
  • Some of the medications used to treat seizures can contribute to symptoms of depression.
  • Finally, some people have a genetic tendency to depressive episodes. For example, people whose parents have suffered from a major depressive disorder or from alcoholism are at greater risk of developing depressive episodes. In some people with epilepsy and a genetic predisposition to depression, the use of certain antiepileptic medications can increase their risks. However, people without a family history of depression may not experience depressive episodes when given the same type of antiepileptic medication.

• Do seizure medicines affect a person’s mood? Some seizure medicines (also called AEDs or antiepileptic drugs) can affect mood. Some of the medicines actually have a mood-stabilizing effect and can help mood, while others may make people feel more tired, ‘down’ or depressed. The FDA Alert suggests that suicidal feelings may be associated with the use of many different seizure medicines. However, the observation reported in the FDA Alert is not proof of a cause-and-effect relationship - that will take more research to determine. Depressive episodes can be caused by many factors. Indeed, while there are certain AEDs known to cause symptoms of depression, this is not true for all of these medicines. Clearly more study is needed to determine to what extent specific AEDs or combinations of AEDs cause suicidal thoughts or behavior.

• If a person is taking seizure medicines and feels depressed or suicidal, should seizure medicines be stopped? First of all, seizure medicines should not be stopped suddenly unless the person has been told to do so by their doctor. Stopping medicines quickly can lead to more frequent seizures, including seizures that last too long or that occur one right after another. This type of situation, called status epilepticus, is a seizure emergency that can cause serious problems and even death if not treated properly and quickly. Also, unless the doctor is sure that the seizure medicine is the cause of the mood change, stopping the medicine could make a person’s mood worse, either because the medicine was helping mood or by worsening seizures! The best approach for any person who has noticed mood changes while being treated for seizures is to write down what they and others have noticed and share this information with their neurologist or epilepsy specialist as soon as possible.
  • To learn more about seizure emergencies and how to respond, visit the section on Seizure Preparedness found at www.epilepsy.com/epilepsy/understanding_seizures.

• Does the length of time a person has had seizures affect mood? Not consistently. Some research has shown that the longer people live with uncontrolled seizures, the more likely they are to also develop problems such as depression. However, some research in children newly diagnosed with seizures has shown that mood and behavior problems can occur even before the onset of a first seizure and before a child has been placed on any seizure medicine! This information suggests that medicines are not the sole cause of mood or behavior changes in many people.

• What about the social problems of living with epilepsy? Epilepsy can wreak havoc in a person’s daily life. Mood changes can occur when people lose a job, feel socially isolated, can’t drive, or feel dependent or a burden on others. Problems in relationships and discrimination from other people just add to struggles of living with epilepsy. While sometimes people find ways to cope with these problems fairly well, others have more difficulties. Yet living with epilepsy can also be like a roller coaster ride. At times, life is stable and you feel that you’re coping well. Then other times life throws you a curve and things just don’t work out the way you expect. The important thing to remember is that some people can’t cope with all their problems on their own and that it helps to seek support and guidance from other people, both professionally and among friends and family.

• What type of help is available for people who feel depressed? Anyone who is feeling depressed or noticing mood changes should immediately talk to their doctor and ask for help. Many types of help are available.
  • The neurologist or epilepsy specialist will likely want to look at mood changes in relation to the seizures and medicines and see if any changes are needed.
  • A psychiatrist would be helpful to sort out what type of mood changes are happening, and what medicines may or may not be helpful. They may also be able to recommend non-drug treatments to treat mood changes and help build coping skills.
  • Social workers, psychologists or counselors can provide help in understanding the mood changes, how they affect the individual and family and how to address them. Different types of counseling are available and it’s best to ask the counselor what type they provide to see if this is best for you. Counselors can also help people find resources to deal with the social problems caused by having epilepsy.
  • Nurses can also help people with many of the social issues and connect them with community resources. They can also teach people how to track seizures and moods in relation to medicines, and provide close follow-up during medicine changes. If triggers or risk factors are found that may affect seizures and mood, nurses can help you develop plans on how to manage these.

• What type of help is available if a person is feeling unsafe or suicidal? Ideally, if someone is being treated for depression, they would be able to tell their psychiatrist or other doctor how they feel and get help for this. But if a person has suicidal feelings that occur suddenly or they have not talked to anyone about them, it’s time to call the doctor or be seen right away to get help. Sometimes hopeless feelings occur, but the person doesn’t want to hurt themselves. Other times this can’t be sorted out over the phone and the person should go to the nearest emergency room to be evaluated in person.

• What if there’s no help available or someone doesn’t know who to call? However bad a person may feel, there’s usually some way of getting help. Finding a trusted adult and telling them what is going on is number one. This way, the adult can help the person get the right help. If an emergency room is not close by or a person can’t get there, call an ambulance or rescue squad. In some locations, this rescue or emergency help may be provided by local police or fire departments. These people are trained to help in emergency situations and can take a person to be evaluated at an emergency room or hospital.

• What about telephone hotlines? There are many types of emergency hotlines available. These phone lines are usually staffed by people trained in talking to people in crisis situations. They can help people figure out who to call or how to get help. There are many different hotlines available in the United States and other countries, so talk to your treatment team for recommendations on what resources may be best.

• What about computer or online chat rooms? Online chat rooms, such as we have on my.epilepsy.com, are great sources of support and general information, however they are not staffed by professionals or intended to be sources of medical information. While users can get support from others on epilepsy-related issues, if a person is really feeling unsafe, it’s best to seek out help directly from a mental health professional, face-to-face.

Written by Patricia Shafer, RN, MN and Andres Kanner, MD

Edited by Steven C. Schachter, MD 2/4/08