Patty Shafer, RN, MN
Epilepsy.com Resource Specialist
We’ve heard about changes in mood or behavior that could be related to seizures or other neurological problems. Research is also trying to understand who may be susceptible to changes in mood or behavior as side effects of medicines. Could mood/behavior changes be due to stress or something else? How do you figure this out and what should be done first?
What are mood or behavior problems? Changes in mood may include a large group of symptoms. The most common mood changes include feeling depressed or ‘down’, anxious, irritable or easy to anger, for example. Behavioral changes may include, but are not limited to, impulsiveness, difficulty concentrating or paying attention, excessive restlessness or difficulty staying still, withdrawn, overly sleepy or difficulty sleeping.
Sometimes a person with depressed mood and other changes may be diagnosed with clinical depression, but just because a person feels down or depressed at times, doesn’t mean they have the medical condition of depression. Some people who are impulsive or have difficulty concentrating may be diagnosed with attention deficit disorder (ADD or ADHD) but not all people with difficulty paying attention have this problem either. However, when changes occur and last for at least a few weeks or more and are interfering with a person’s daily life, they should be seen by a doctor to figure out possible causes and what to do.
What causes changes in mood or behavior? There are many different causes to changes in behavior or mood. While some people may first attribute the problems to side effects of medicines, this isn’t always the case. Mood or behavior problems could be due to seizures or other neurological problems.
The brain is the master of all our behavior. For example, the brain controls our movements, senses, feelings, speech, thinking and remembering, judgment, planning, and control of bodily functions. If seizures arise in areas of the brain that are involved in these behaviors, then a certain behavior could be affected. For example, the temporal lobe is one of the areas involved in regulating emotions. If a seizure arises in the front part of the temporal lobe, a person may notice sudden feelings of fear or anxiety during a seizure. The change would be short-lived, and occur only during the seizure; it would be different than feeling anxious or scared in general or about a specific thing. Other times during a seizure people may notice that they say or do things that they normally wouldn’t do and don’t recall them afterwards. These changes may last seconds to a few minutes, then the person returns to their usual state.
Neurological problems, such as infections, tumors, injuries or other conditions can give rise to changes in behavior, depending on the area of the brain involved. Problems from the underlying neurological problem may be different than when it arises as part of a seizure. The changes may occur suddenly or become more noticeable over a short period of time, may be present all the time or occur intermittently, but last longer than mood changes from a seizure.
If behavior or mood changes are related to side effects of medicines, usually the changes last longer and may be more noticeable at certain times of day (possibly in relation to times the medicine is taken or peaks in the body). Sometimes the mood/behavior is related to the dose of the medicine and if the dose is lowered, the problems go away. Other times, the changes aren’t dose related and changing the medicine may be needed.
Could changes in my feelings or behavior be due to stress or trying to live with epilepsy? Yes, people with epilepsy are just like anyone else. When changes and challenges occur, ‘good’ or ‘bad’, we have to find ways to adjust or cope with the changes. During this process, we may have a variety of emotions and our behavior may change. When these occur, however, don’t ignore them. They are a signal that something is going on. They may go away as people find ways to adjust to the changes or stresses. But if they don’t, or problems keep cropping up, it’s wise to seek help. Talk to a trusted family member, friend or join a support group. If this doesn’t help, see a professional. They can help you sort out what’s going on and provide help for managing the stress and changes in life.
How do I know if I am having mood or behavior changes and what do I do? First of all, not all changes mean there is something wrong. The type of problems seen and how long they last, how they are displayed and how they affect your life are all important. Here are a few tips on how to track symptoms and what to do:
Keep a journal of how you feel or changes that people report to you.
Record changes in mood or behavior in your epilepsy diary- create an account with My Epilepsy Diary if you haven’t done so yet.
Rate your mood on a 1-10 scale each day so you can track changes and how long it’s been going on.
Note when the changes occur and when - day of week, time of day, if before or after medicines are taken.
Note how long the changes last – only a few seconds to a minute, come and go over a period of hours or days, or are they constant?
Do the mood/behavioral changes occur at times of other seizure symptoms?
Record any triggers or factors you think may be related. For example, having problems with sleep? Not eating? Eating too much? Have medicines been changed lately? Any new stressors or changes in life?
Make an appointment with the doctor treating your epilepsy and share the notes. If he or she doesn’t have time at that visit to review them, ask for another appointment or to meet with a nurse in the practice. Most epilepsy centers should have a nurse who helps people with managing their epilepsy and learning about it. She or he can help sort out the changes you’ve noticed and figure out the next steps.
Bring a list of all medicines with you to appointments. Include a list of any over the counter or herbal products or supplements. Some ‘natural’ products or complementary/alternative therapies may have substances that can affect seizures, moods or behavior.
Appointments for next steps can then be made, depending upon the symptoms reported, your seizure and medication history, findings on exams, reports from family/teachers or other caregivers, and what tests have already been done. Depending on the possible causes, EEG testing or a brain scan may be indicated. Referrals may be made for neuropsychological testing, counseling, or psychiatric evaluations.
Once a person has talked to their doctor or health care provider about the changes and figured out what is going on, make sure that it is fully explained to you. Ask for a written plan on how to deal with it so you can share this with the appropriate people in your life.
I know this is a brief introduction to a large and complicated topic. I hope this will serve as a starting point or refresher for those of you with concerns about changes in mood and behavior. Remember, you are a person and not just a seizure. Let’s make sure that both your body and mind gets the attention and treatment required!
Have a safe week!
by Patricia Osborne Shafer RN, MN
Resource Specialist, epilepsy.com
Last Reviewed: 9/10/2012
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