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Below is some useful information. If you would like to post a new topic to describe your own experiences in this area, please do so. The more information we share with eachother, the more we can all be prepared, and support eachother.
Epilepsy and the Brain
Epilepsy is a disorder of the central nervous system, specifically the brain. In simple terms, our nervous system is a communications network that controls every thought, emotion, impression, memory, and movement, essentially defining who we are. Nerves throughout the body function like telephone lines, enabling the brain to communicate with every part of the body via electrical signals. In epilepsy, the brain's electrical rhythms have a tendency to become imbalanced, resulting in recurrent seizures.
The brain is an extraordinarily complex organ. When it comes to understanding epilepsy, there are several concepts about the brain you'll need to learn.
The first is that the brain works on electricity. Normally, the brain continuously generates tiny electrical impulses in an orderly pattern. These impulses travel along the network of nerve cells, called neurons, in the brain and throughout the whole body via chemical messengers called neurotransmitters. A seizure occurs when the brain's nerve cells misfire and generate a sudden, uncontrolled surge of electrical activity in the brain. A bit like an electrical storm.
Another concept important to epilepsy is that different areas of the brain control different functions.
If seizures arise from a specific area of the brain, then the initial symptoms of the seizure often reflect the functions of that area. The right half of the brain controls the left side of the body, and the left half of the brain controls the right side of the body. So if a seizure starts from the right side of the brain, in the area that controls movement in the thumb, then the seizure may begin with jerking of the left thumb or hand.
More specific information about the brain can be found Here
Changes in Mood and Personality
You can probably think of at least one time when you changed your plans because you were afraid of a seizure. Or a time when you felt upset for weeks after a seizure with no reason. Or when someone behaved differently around you, perhaps acting as if you were very sick. That someone may even have been someone close to you.
Epilepsy and seizures have probably changed your moods and behavior, whether you realize it or not. How they affect your behavior depends on how long you have had epilepsy and on your stage in life. Changes in your general mood and behavior could happen because of a particular seizure, because of your reaction to seizures or epilepsy in general, or because of the reactions of other people to your seizures or your epilepsy.
Changes caused by seizures
Seizures can cause many long-lasting mood changes. Two of the most common changes are becoming depressed or anxious. These two disorders can be closely related. Some experts say that between 30% and 70% of people with epilepsy have depression, anxiety, or both. So if you are affected by one of these disorders, you are not alone!
Depression and anxiety are each like a puzzle. They can be broken down into many different "pieces," which may vary slightly for different people. A combination of many pieces is usually needed to develop depression or an anxiety disorder. For example, the roots of depression may be made up of different kinds of pieces:
Genetic influences
Changes in neurotransmitters and hormones, or unusual patterns of sleep and wakefulness.
Problems of attitude
Unhelpful reactions to stressful life events
Lack of social support: Marital troubles or trouble with friends or family members
People with epilepsy have to deal with two more pieces: seizures and brain abnormalities. These two pieces can cause other pieces to appear that weren't there before.
Some people with epilepsy experience another change - a loss or indeed increase of sexual labido. On average, the sexual activity level of people with epilepsy is about the same as for others, but some find that their sexual interests and activity levels have drastically changed.
Changes caused by your experience with epilepsy:
Some people find that the biggest change when they learn they have epilepsy is a change in their quality of life. What is "quality of life"? It has been described as a state of well-being with two components:
Your ability to perform everyday activities in a way that shows physical, psychological, and social well-being.
Your satisfaction with your level of functioning and with the control of your epilepsy, any symptoms related to treatment, or both.
It's clear from the second half of this definition that two people with about the same number of seizures per week can view their quality of life very differently. Your satisfaction can be affected by mood disorders such as depression, by the types of changes in your life, and by the number of seizures you've had recently. In fact, depression is the greatest predictor of your quality of life.
For people with temporal lobe epilepsy, the major stumbling blocks in the way of achieving a good quality of life seem to be feelings of dependence, emotional impairment, and less developed coping skills. Other studies have looked at all patients with epilepsy and have found the leading factors to be loneliness, adjustment, coping, psychological distress, and perception of stigma. Stigma is a feeling of discrimination or persecution that we experience when we don't conform to standards. Even if true acts of discrimination by others are not common, a person may feel stigma and get less enjoyment from life as a result.
A new diagnosis of epilepsy is a major event that can dramatically affect your quality of life if you previously valued your health, strength, and mind. Suddenly they are not dependable. You have new "work" to do - managing your seizures, taking medications, and so on. Positive aspects of your self-image (how you see yourself) can disappear, without being replaced by other, equally valued positive aspects. Situations and places that seemed safe and brought joy can instead cause panic and fear of seizures. All these changes can affect your quality of life, but if you find a new way to cope with them, your quality of life will not be permanently affected and you can live happily again.
Changes caused by others' reactions to your epilepsy
The reaction of other people to your epilepsy is also important to your mood. The reaction of your family is crucial. If you have a job or are looking for one, the workplace is another area where others' reactions can make a big difference.
The family
Many of you have most of your social interactions with your family, so how your family members react to your epilepsy makes a huge difference in how satisfying your life is. Ideally, your family and friends should treat your epilepsy as an occasional inconvenience rather than a perpetual tragedy, especially if your seizures are well controlled. If they adopt the "tragedy" attitude instead, you could end up playing the "sick role," being monitored (and over-monitored) constantly, or you may come to feel responsible for family problems.
If you're married, you may be worried about your spouse's reaction. One survey showed that one-third of people diagnosed with epilepsy after marriage didn't tell their spouse about their epilepsy. Another one-third used vague terms such as "attacks" or "dizzy spells" to avoid mentioning epilepsy or seizures. But epilepsy doesn't have to damage or end marriages. If both partners can talk openly about what epilepsy is, identify problems created by seizures, and find ways to minimize the impact of seizures, unwanted tension can disappear and a new level of trust and closeness can develop.
Social workers, psychiatrists, and psychologists are available to help with family issues caused by epilepsy. Family members who are having trouble coping with your epilepsy also may be greatly helped by joining one of the many support groups available for people in similar situations. Online chat rooms and message boards can help too. Be sure to look at our Links section.
The workplace
Fear of facing discrimination or of being fired prevents many people with epilepsy from telling their employers about it. Sadly, this fear is not unfounded; one study found that 18% of those who told employers faced discrimination. Another study found that employees had trouble finding and keeping a job 40% of the time when the employers knew about their epilepsy. Clearly, some employers are basing their behavior on misperceptions about epilepsy.
When epilepsy affects you for long periods, you may notice changes in your behavior, your feelings, and in how you see the world. Feelings of depression or anxiety are especially common. A few people with epilepsy experience psychosis (losing contact with reality). Some doctors believe in the existence of a distinct temporal lobe epilepsy personality.
Dysphoric disorder and depression
Dysphoria means loss of pleasure or joy. (You may know the more common word euphoria, which means extreme joy. They share the same root.) Many people who have epilepsy experience dysphoric episodes. These episodes, which can last between a few hours and a few days, consist of depressive moods, irritability, lack of energy, pain, anxiety, insomnia, and euphoric moods. Usually they are part of a syndrome known as interictal dysphoric disorder instead of being linked to recent or upcoming seizures.
People with interictal dysphoric disorder (IDD for short) aren't always depressed; there are times when everything is OK, and times when everything is not. These times are connected to seizures, but not the way you might think. Often IDD is discovered or becomes worse when seizures are fully controlled or less frequent. Some scientists believe that the same chemicals and paths that slow or stop seizure activity also lower levels of other brain activity; this change can be linked to depressed mood and many of the symptoms of IDD.
What's the difference between IDD and depression? Some people have long, severe, and consuming dysphoric episodes. These people have a different mood disorder: major depression. Many of the symptoms are the same as in IDD. The difference lies in their severity. With depression, these symptoms are present for 2 weeks or longer without letting up. Thoughts of death appear repeatedly and suicide may be considered or attempted.
In the general population, about 5% to 10% of people are affected by depression or a related mood disorder. The percentage is much higher for people with epilepsy. (The exact numbers vary depending on how the study is designed.) If you have symptoms of depression or IDD, please talk to your doctor. There are many treatments that can help you. You just have to ask.
Anxiety disorders
Probably the next most common psychological disorders involve anxiety. Anxiety and epilepsy are so closely linked that seizures sometimes are mistaken for panic attacks in those who have never had seizures before.
About 4% of the general population has generalized anxiety disorder, a constant state of tension or worry. Again, the number is much higher for people with epilepsy. It's possible that this disorder is caused or made worse by seizures. Anxiety disorders have been associated with the amygdala, a structure in the front part of the temporal lobe. The seizures of temporal lobe epilepsy frequently affect the amygdala and cause it to act in different ways. Anxiety can also be directly related to the possibility of seizures. Not knowing when a seizure may occur can increase worry about having one in an embarrassing or dangerous situation.
Certain kinds of people are more susceptible to anxiety disorders. Genetic influences and a person's response to stress may play a part in their development. Women are more likely than men to have anxiety disorders, and patients with nonepileptic seizures also have higher rates of anxiety. The presence of auras involving fear has been linked to anxiety disorders; in patients who had the front part of their temporal lobe removed, only those who previously had fear auras continued to have anxiety disorders after surgery.
If you have problems with anxiety, talk to your doctor. There are medications that are effective for anxiety, and some seizure medicines are known to have an anti-anxiety effect.
Epilepsy and the Brain
Epilepsy is a disorder of the central nervous system, specifically the brain. In simple terms, our nervous system is a communications network that controls every thought, emotion, impression, memory, and movement, essentially defining who we are. Nerves throughout the body function like telephone lines, enabling the brain to communicate with every part of the body via electrical signals. In epilepsy, the brain's electrical rhythms have a tendency to become imbalanced, resulting in recurrent seizures.
The brain is an extraordinarily complex organ. When it comes to understanding epilepsy, there are several concepts about the brain you'll need to learn.
The first is that the brain works on electricity. Normally, the brain continuously generates tiny electrical impulses in an orderly pattern. These impulses travel along the network of nerve cells, called neurons, in the brain and throughout the whole body via chemical messengers called neurotransmitters. A seizure occurs when the brain's nerve cells misfire and generate a sudden, uncontrolled surge of electrical activity in the brain. A bit like an electrical storm.
Another concept important to epilepsy is that different areas of the brain control different functions.
If seizures arise from a specific area of the brain, then the initial symptoms of the seizure often reflect the functions of that area. The right half of the brain controls the left side of the body, and the left half of the brain controls the right side of the body. So if a seizure starts from the right side of the brain, in the area that controls movement in the thumb, then the seizure may begin with jerking of the left thumb or hand.
More specific information about the brain can be found Here
Changes in Mood and Personality
You can probably think of at least one time when you changed your plans because you were afraid of a seizure. Or a time when you felt upset for weeks after a seizure with no reason. Or when someone behaved differently around you, perhaps acting as if you were very sick. That someone may even have been someone close to you.
Epilepsy and seizures have probably changed your moods and behavior, whether you realize it or not. How they affect your behavior depends on how long you have had epilepsy and on your stage in life. Changes in your general mood and behavior could happen because of a particular seizure, because of your reaction to seizures or epilepsy in general, or because of the reactions of other people to your seizures or your epilepsy.
Changes caused by seizures
Seizures can cause many long-lasting mood changes. Two of the most common changes are becoming depressed or anxious. These two disorders can be closely related. Some experts say that between 30% and 70% of people with epilepsy have depression, anxiety, or both. So if you are affected by one of these disorders, you are not alone!
Depression and anxiety are each like a puzzle. They can be broken down into many different "pieces," which may vary slightly for different people. A combination of many pieces is usually needed to develop depression or an anxiety disorder. For example, the roots of depression may be made up of different kinds of pieces:
Genetic influences
Changes in neurotransmitters and hormones, or unusual patterns of sleep and wakefulness.
Problems of attitude
Unhelpful reactions to stressful life events
Lack of social support: Marital troubles or trouble with friends or family members
People with epilepsy have to deal with two more pieces: seizures and brain abnormalities. These two pieces can cause other pieces to appear that weren't there before.
Some people with epilepsy experience another change - a loss or indeed increase of sexual labido. On average, the sexual activity level of people with epilepsy is about the same as for others, but some find that their sexual interests and activity levels have drastically changed.
Changes caused by your experience with epilepsy:
Some people find that the biggest change when they learn they have epilepsy is a change in their quality of life. What is "quality of life"? It has been described as a state of well-being with two components:
Your ability to perform everyday activities in a way that shows physical, psychological, and social well-being.
Your satisfaction with your level of functioning and with the control of your epilepsy, any symptoms related to treatment, or both.
It's clear from the second half of this definition that two people with about the same number of seizures per week can view their quality of life very differently. Your satisfaction can be affected by mood disorders such as depression, by the types of changes in your life, and by the number of seizures you've had recently. In fact, depression is the greatest predictor of your quality of life.
For people with temporal lobe epilepsy, the major stumbling blocks in the way of achieving a good quality of life seem to be feelings of dependence, emotional impairment, and less developed coping skills. Other studies have looked at all patients with epilepsy and have found the leading factors to be loneliness, adjustment, coping, psychological distress, and perception of stigma. Stigma is a feeling of discrimination or persecution that we experience when we don't conform to standards. Even if true acts of discrimination by others are not common, a person may feel stigma and get less enjoyment from life as a result.
A new diagnosis of epilepsy is a major event that can dramatically affect your quality of life if you previously valued your health, strength, and mind. Suddenly they are not dependable. You have new "work" to do - managing your seizures, taking medications, and so on. Positive aspects of your self-image (how you see yourself) can disappear, without being replaced by other, equally valued positive aspects. Situations and places that seemed safe and brought joy can instead cause panic and fear of seizures. All these changes can affect your quality of life, but if you find a new way to cope with them, your quality of life will not be permanently affected and you can live happily again.
Changes caused by others' reactions to your epilepsy
The reaction of other people to your epilepsy is also important to your mood. The reaction of your family is crucial. If you have a job or are looking for one, the workplace is another area where others' reactions can make a big difference.
The family
Many of you have most of your social interactions with your family, so how your family members react to your epilepsy makes a huge difference in how satisfying your life is. Ideally, your family and friends should treat your epilepsy as an occasional inconvenience rather than a perpetual tragedy, especially if your seizures are well controlled. If they adopt the "tragedy" attitude instead, you could end up playing the "sick role," being monitored (and over-monitored) constantly, or you may come to feel responsible for family problems.
If you're married, you may be worried about your spouse's reaction. One survey showed that one-third of people diagnosed with epilepsy after marriage didn't tell their spouse about their epilepsy. Another one-third used vague terms such as "attacks" or "dizzy spells" to avoid mentioning epilepsy or seizures. But epilepsy doesn't have to damage or end marriages. If both partners can talk openly about what epilepsy is, identify problems created by seizures, and find ways to minimize the impact of seizures, unwanted tension can disappear and a new level of trust and closeness can develop.
Social workers, psychiatrists, and psychologists are available to help with family issues caused by epilepsy. Family members who are having trouble coping with your epilepsy also may be greatly helped by joining one of the many support groups available for people in similar situations. Online chat rooms and message boards can help too. Be sure to look at our Links section.
The workplace
Fear of facing discrimination or of being fired prevents many people with epilepsy from telling their employers about it. Sadly, this fear is not unfounded; one study found that 18% of those who told employers faced discrimination. Another study found that employees had trouble finding and keeping a job 40% of the time when the employers knew about their epilepsy. Clearly, some employers are basing their behavior on misperceptions about epilepsy.
When epilepsy affects you for long periods, you may notice changes in your behavior, your feelings, and in how you see the world. Feelings of depression or anxiety are especially common. A few people with epilepsy experience psychosis (losing contact with reality). Some doctors believe in the existence of a distinct temporal lobe epilepsy personality.
Dysphoric disorder and depression
Dysphoria means loss of pleasure or joy. (You may know the more common word euphoria, which means extreme joy. They share the same root.) Many people who have epilepsy experience dysphoric episodes. These episodes, which can last between a few hours and a few days, consist of depressive moods, irritability, lack of energy, pain, anxiety, insomnia, and euphoric moods. Usually they are part of a syndrome known as interictal dysphoric disorder instead of being linked to recent or upcoming seizures.
People with interictal dysphoric disorder (IDD for short) aren't always depressed; there are times when everything is OK, and times when everything is not. These times are connected to seizures, but not the way you might think. Often IDD is discovered or becomes worse when seizures are fully controlled or less frequent. Some scientists believe that the same chemicals and paths that slow or stop seizure activity also lower levels of other brain activity; this change can be linked to depressed mood and many of the symptoms of IDD.
What's the difference between IDD and depression? Some people have long, severe, and consuming dysphoric episodes. These people have a different mood disorder: major depression. Many of the symptoms are the same as in IDD. The difference lies in their severity. With depression, these symptoms are present for 2 weeks or longer without letting up. Thoughts of death appear repeatedly and suicide may be considered or attempted.
In the general population, about 5% to 10% of people are affected by depression or a related mood disorder. The percentage is much higher for people with epilepsy. (The exact numbers vary depending on how the study is designed.) If you have symptoms of depression or IDD, please talk to your doctor. There are many treatments that can help you. You just have to ask.
Anxiety disorders
Probably the next most common psychological disorders involve anxiety. Anxiety and epilepsy are so closely linked that seizures sometimes are mistaken for panic attacks in those who have never had seizures before.
About 4% of the general population has generalized anxiety disorder, a constant state of tension or worry. Again, the number is much higher for people with epilepsy. It's possible that this disorder is caused or made worse by seizures. Anxiety disorders have been associated with the amygdala, a structure in the front part of the temporal lobe. The seizures of temporal lobe epilepsy frequently affect the amygdala and cause it to act in different ways. Anxiety can also be directly related to the possibility of seizures. Not knowing when a seizure may occur can increase worry about having one in an embarrassing or dangerous situation.
Certain kinds of people are more susceptible to anxiety disorders. Genetic influences and a person's response to stress may play a part in their development. Women are more likely than men to have anxiety disorders, and patients with nonepileptic seizures also have higher rates of anxiety. The presence of auras involving fear has been linked to anxiety disorders; in patients who had the front part of their temporal lobe removed, only those who previously had fear auras continued to have anxiety disorders after surgery.
If you have problems with anxiety, talk to your doctor. There are medications that are effective for anxiety, and some seizure medicines are known to have an anti-anxiety effect.
