Quality of Life and Epilepsy
Patients with epilepsy experience significant challenges with respect to education, employment, social support, and psychiatric co-morbidities. Maintaining a good quality of life is an important aspect of care for patients who have seizures. Seizures and the inability to drive make it difficult to maintain social relationships, and also contribute to educational and vocational disruptions.
At Duke all of our providers are happy to help patients navigate around these life based challenges as they are part of our comprehensive care model.
Epilepsy and Mental Health
The most common cognitive complaints include problems with attention, word-finding, processing speed, and memory. Memory concerns include difficulty recalling events or details from conversations, trouble remembering medication, and forgetting to do things. Any of these problems could be affected by how seizures, medications, or underlying brain problems affect a person's memory.
What is a Neuropsychological Evaluation?
A neuropsychological evaluation is clinical interview, followed by a battery of standardized cognitive assessments (e.g., paper and pencil tests) completed one on one with an examiner. Neuropsychological evaluations objectively measure cognition, including memory, attention, and language skills (word finding). This allows the neuropsychologist to characterize strengths and weaknesses, and determine if there is a pattern of weakness that correlates to certain brain regions. Such detailed analysis is particularly useful for:
Pre-surgical planning with respect to lateralization/localization of seizures and risk of cognitive change following surgery. It also establishes a baseline for comparison over time or post-surgically
• Educational planning and advocating for academic accommodations for learning disorders.
• Occupational planning and need for modifications/support on the job.
• Identifying cognitive difficulties that affect activities of daily living for long term care planning.
In addition to measuring cognition, neuropsychological evaluations also characterize the nature of any social or emotional concerns to better support a patient and improve wellbeing.
Strategies for aiding memory and cognitive functioning.
1. Get a calendar and take notes! Keep lists and notes inside the calendar so you don't have to hunt them down all over the house.
2. Find 2-3 routine times a day to review your calendar and notes (e.g., with breakfast, after lunch), adjusting your plans and lists as you complete tasks or new tasks come to mind.
3. Repeat key pieces of information aloud. Rehearsing information makes you more likely to remember it.
4. Use mnemonics or visualization. A mnemonic (neh-MON-ik) is a rhyme, formula, or other device used to help remember. Visualization links a memory to an image that has significance. Creating your own unique mnemonic or visualization is particularly helpful!
5. Find a place for critical items (keys, phone, and wallet) and always keep things in the same place.
6. Don't focus too much on mistakes, including a word slip or forgetting something. These things happen to everyone and dwelling on it will only increase frustration and further difficulty.
7. Exercise your brain. You may have heard the phrase “use it or lose it”. The key is to try a variety of activities, not just one type of game or puzzle. Also consider challenging yourself to learn something new.
Mood disorders (such as major depression or bipolar disorder), as well as anxiety disorders, occur more frequently in people with epilepsy than in the general population. Increased anxiety or changes in mood can be the manifestation or consequence of a seizure. For some, it is the case that the same area of the brain responsible for seizures is also responsible for changes in emotion or difficulty regulating emotion. There is also recent research to suggest that depression may increase the risk of developing epilepsy; thus, there may be a bidirectional relationship between depression and epilepsy. High co-morbidity of Epilepsy and Anxiety (10-25 %), as well as Epilepsy and Depression (10-60% of patients). Up to 73% of patients with Epilepsy and Depression have comorbid anxiety.
What Is Depression?
The DSM-5 outlines the following criterion to make a diagnosis of depression. The individual must be experiencing five or more symptoms during the same 2-week period and at least one of the symptoms should be either (1) depressed mood or (2) loss of interest or pleasure.
- Depressed mood most of the day, nearly every day.
- Markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day.
- Significant weight loss when not dieting or weight gain, or decrease or increase in appetite nearly every day.
- A slowing down of thought and a reduction of physical movement (observable by others, not merely subjective feelings of restlessness or being slowed down).
- Fatigue or loss of energy nearly every day.
- Feelings of worthlessness or excessive or inappropriate guilt nearly every day.
- Diminished ability to think or concentrate, or indecisiveness, nearly every day.
- Recurrent thoughts of death, recurrent suicidal ideation without a specific plan, or a suicide attempt or a specific plan for committing suicide.
To receive a diagnosis of depression, these symptoms must cause clinically significant distress or impairment in social, occupational, or other important areas of functioning. The symptoms must also not be a result of substance abuse or another medical condition.
How is depression experienced?
In reality, many patients with epilepsy have depressive symptoms, but about 70% of patients will not meet the textbook criteria for depression. Research has shown that for persons with epilepsy:
- Most presented with a waxing and waning course with symptom-free periods of 1 to several days in duration. In other words, most experienced good days and bad days.
- Depressive symptoms consisted of anhedonia, fatigue, anxiety, irritability, poor frustration tolerance, and mood lability with bouts of crying. Some had changes in appetite and sleep patterns and problems with concentration.
There are important gender based differences in depression. Women are much more likely to be diagnosed with depression versus men. Hormone differences based on sex makes increases the risk of depression for women. However, some of the reason women are more frequently diagnosed with depression as compared to men may have to do with how depression is demonstrated. For example, depression in men is more likely to surface as irritability or anger, as well as increased substance use, and risky behavior. Women are more likely to dwell on negative feelings or blame themselves, whereas men are more likely to do things to distract from those feelings (e.g., use substances, zone out with television or other activities). Unfortunately, because men often suffer longer without being diagnosed or receiving treatment, they are more likely to be successful at completing suicide.
Suicidality is a major factor contributing to death for persons with epilepsy. In fact, the risk of death by suicide is 2.6 to 5 times higher for persons with epilepsy than for the general population. If you or someone you know has had thoughts of suicide, please call the suicide prevention lifeline at 1-800-273-8255.
What is anxiety?
Anxiety is technically not considered a mood disorder. According to the DSM-V, anxiety is a developmentally inappropriate and excessive fear or worry concerning separation from those to whom the individual is attached, as evidenced by at least three of the following:
- Recurrent excessive distress when anticipating or experiencing separation from home or from major attachment figures.
- Persistent and excessive worry about losing major attachment figures or about possible harm to them, such as illness, injury, disasters, or death.
- Persistent and excessive worry about experiencing an untoward event (e.g., getting lost, being kidnapped, having an accident, becoming ill) that causes separation from a major attachment figure.
- Persistent reluctance or refusal to go out, away from home, to school, to work, or elsewhere because of fear of separation.
- Persistent and excessive fear of or reluctance about being alone or without major attachment figures at home or in other settings.
- Persistent reluctance or refusal to sleep away from home or to go to sleep without being near a major attachment figure.
- Repeated nightmares involving the theme of separation.
- Repeated complaints of physical symptoms (e.g., headaches, stomachaches, nausea, vomiting) when separation from major attachment figures occurs or is anticipated.
- The fear, anxiety, or avoidance is persistent, lasting at least 4 weeks in children and adolescents and typically 6+ in adult
- The disturbance causes clinically significant distress or impairment in social, academic, occupational, or other important areas of functioning.
- The disturbance is not better explained by another mental disorder, such as refusing to leave home because of excessive resistance to change in autism spectrum disorder; delusions or hallucinations concerning separation in psychotic disorders; refusal to go outside without a trusted companion in agoraphobia; worries about ill health or other harm befalling significant others in generalized anxiety disorder; or concerns about having an illness in illness anxiety disorder.
Why is it important to treat depression and anxiety?
- Depression has been found to be the MOST powerful predictor of health related quality of life in persons with epilepsy.
- Treating depression and/or anxiety before surgical treatments has been associated with better outcomes (e.g., better seizure control). Without treatment, patients with a history of treatment-resistant temporal lobe epilepsy who have a lifetime history of depression are significantly less likely to achieve complete seizure-freedom after a temporal lobectomy (Kanner et al., 2009).
- It also important to consider that psychiatric issues are often intertwined with triggers for seizures (e.g., increased stress, decreased sleep, alcohol/substance use).
Therefore, to improve seizure control and quality of life, it is necessary to treat the whole person, not just the seizures.
Treatment for depression and anxiety
- Typically a class of medications known as selective serotonin reuptake inhibitors (SSRIs) are used to treat depression and/or anxiety.
- Some anti-seizure medications are also associated with improved mood, including Neurontin, Lamictal, Topamax, Depakote
- A combination of medication strategies and psychotherapy, specifically Cognitive Behavioral Therapy (CBT), is usually the most effective treatment. Mindfulness training is another excellent therapeutic technique that is often used in conjunction with CBT.
- In addition, regular exercise, seeking social support (e.g., connecting with friends and family), and practicing good sleep hygiene are all beneficial for emotional wellbeing.
What is Cognitive Behavioral Therapy?
CBT treatment usually involves efforts to change thinking patterns. These strategies might include:
- Learning to recognize one’s distortions in thinking that are creating problems, and then to reevaluate them in light of reality.
- Gaining a better understanding of the behavior and motivation of others.
- Using problem-solving skills to cope with difficult situations.
- Learning to develop a greater sense of confidence is one’s own abilities.
- CBT is a collaborative approach between the patient and therapist. This is not a lay on the couch style of therapy! The therapist will be more directive, almost acting as a coach, rather than a passive listener.
CBT can be highly effective in as little as 8-12 visits.
What is Mindfulness?
Mindfulness training teaches one how to focus on the present, while also calmly acknowledging and accepting the thoughts, feelings, and sensations that are floating through their mind. There is Promising research showing that practicing mindfulness can lead to:
- Structural and functional changes in areas involved in memory, emotional regulation, and attention, including the limbic system and prefrontal cortex.
- Reduction of interleukin-6, a marker of inflammation in the body.
- Improved sleep.
- Decreased pain.
- Improved attention.