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Introduction
This patient summary on loss, grief, and bereavement is adapted from the summary written for health professionals by cancer experts. This and other credible information about cancer treatment, screening, prevention, supportive care, and ongoing clinical trials, is available from the National Cancer Institute. The passage from the final stage of cancer to the death of a loved one is different for everyone. This summary describes loss, grief, and bereavement; the stages of grief; and methods for coping with grief. This summary also includes sections on children and grief.

Overview
People cope with the loss of a loved one in many ways. For some, the experience may lead to personal growth, even though it is a difficult and trying time. There is no right way of coping with death. The way a person grieves depends on the personality of that person and the relationship with the person who has died. How a person copes with grief is affected by their experience with cancer, the way the disease progressed, the person’s cultural and religious background, coping skills, mental history, support systems, and the person’s social and financial status.

The terms grief, bereavement, and mourning are often used in place of each other, but they have different meanings.

Grief is the normal process of reacting to the loss. Grief reactions may be felt in response to physical losses (for example, a death) or in response to symbolic or social losses (for example, divorce or loss of a job). Each type of loss means the person has had something taken away. As a family goes through a cancer illness, many losses are experienced, and each triggers its own grief reaction. Grief may be experienced as a mental, physical, social, or emotional reaction. Mental reactions can include anger, guilt, anxiety, sadness, and despair. Physical reactions can include sleeping problems, changes in appetite, physical problems, or illness. Social reactions can include feelings about taking care of others in the family, seeing family or friends, or returning to work. As with bereavement, grief processes depend on the relationship with the person who died, the situation surrounding the death, and the person’s attachment to the person who died. Grief may be described as the presence of physical problems, constant thoughts of the person who died, guilt, hostility, and a change in the way one normally acts.

Bereavement is the period after a loss during which grief is experienced and mourning occurs. The time spent in a period of bereavement depends on how attached the person was to the person who died, and how much time was spent anticipating the loss.

Mourning is the process by which people adapt to a loss. Mourning is also influenced by cultural customs, rituals, and society’s rules for coping with loss.

Grief work includes the processes that a mourner needs to complete before resuming daily life. These processes include separating from the person who died, readjusting to a world without him or her, and forming new relationships. To separate from the person who died, a person must find another way to redirect the emotional energy that was given to the loved one. This does not mean the person was not loved or should be forgotten, but that the mourner needs to turn to others for emotional satisfaction. The mourner’s roles, identity, and skills may need to change to readjust to living in a world without the person who died. The mourner must give other people or activities the emotional energy that was once given to the person who died in order to redirect emotional energy.

People who are grieving often feel extremely tired because the process of grieving usually requires physical and emotional energy. The grief they are feeling is not just for the person who died, but also for the unfulfilled wishes and plans for the relationship with the person. Death often reminds people of past losses or separations. Mourning may be described as having the following 3 phases:

The urge to bring back the person who died.
Disorganization and sadness.
Reorganization.
Phases of a Life-Threatening Illness
Understanding how other people cope with a life-threatening illness may help the patient and his or her family prepare to cope with their own illness. A life-threatening illness may be described as having the following 4 phases:

Phase before the diagnosis.
The acute phase.
The chronic phase.
Recovery or death.
The phase before the diagnosis of a life-threatening illness is the period of time just before the diagnosis when a person realizes that he or she may develop an illness. This phase is not usually a single moment, but extends throughout the period when the person has a physical examination, including various tests, and ends when the person is told of the diagnosis.

The acute phase occurs at the time of the diagnosis when a person is forced to understand the diagnosis and make decisions about his or her medical care.

The chronic phase is the period of time between the diagnosis and the result of treatment. It is the period when a patient tries to cope with the demands of life while also undergoing treatment and coping with the side effects of treatment. In the past, the period between a cancer diagnosis and death usually lasted only a few months, and this time was usually spent in the hospital. Today, people can live for years after being diagnosed with cancer.

In the recovery phase, people cope with the mental, social, physical, religious, and financial effects of cancer.

The final (terminal) phase of a life-threatening illness occurs when death is likely. The focus changes from curing the illness or prolonging life, to providing comfort and relief from pain. Religious concerns are often the focus during this time.

The Pathway to Death
People who are dying may move towards death over longer or shorter periods of time and in different ways. Different causes of death result in different paths toward death.

The pathway to death may be long and slow, sometimes lasting years, or it may be a rapid fall towards death (for example, after a car accident) when the chronic phase of the illness, if it exists at all, is short. The peaks and valleys pathway describes the patient who repeatedly gets better and then worse again (for example, a patient with AIDS or leukemia). Another pathway to death may be described as a long, slow period of failing health and then a period of stable health (for example, patients whose health gets worse and then stabilizes at a new, more limiting level). Patients on this pathway must readjust to losses in functioning ability.

Deaths from cancer often occur over a long period of time, and may involve long-term pain and suffering, and/or loss of control over one’s body or mind. Deaths caused by cancer are likely to drain patients and families physically and emotionally because they occur over a long period of time.

Anticipatory Grief
Anticipatory grief is the normal mourning that occurs when a patient or family is expecting a death. Anticipatory grief has many of the same symptoms as those experienced after a death has occurred. It includes all of the thinking, feeling, cultural, and social reactions to an expected death that are felt by the patient and family.

Anticipatory grief includes depression, extreme concern for the dying person, preparing for the death, and adjusting to changes caused by the death. Anticipatory grief gives the family more time to slowly get used to the reality of the loss. People are able to complete unfinished business with the dying person (for example, saying “good-bye,” “I love you,” or “I forgive you”).

Anticipatory grief may not always occur. Anticipatory grief does not mean that before the death, a person feels the same kind of grief as the grief felt after a death. There is not a set amount of grief that a person will feel. The grief experienced before a death does not make the grief after the death last a shorter amount of time.

Grief that follows an unplanned death is different from anticipatory grief. Unplanned loss may overwhelm the coping abilities of a person, making normal functioning impossible. Mourners may not be able to realize the total impact of their loss. Even though the person recognizes that the loss occurred, he or she may not be able to accept the loss mentally and emotionally. Following an unexpected death, the mourner may feel that the world no longer has order and does not make sense.

Some people believe that anticipatory grief is rare. To accept a loved one’s death while he or she is still alive may leave the mourner feeling that the dying patient has been abandoned. Expecting the loss often makes the attachment to the dying person stronger. Although anticipatory grief may help the family, the dying person may experience too much grief, causing the patient to become withdrawn.

Phases of Grief
The process of bereavement may be described as having 4 phases:

Shock and numbness: Family members find it difficult to believe the death; they feel stunned and numb.
Yearning and searching: Survivors experience separation anxiety and cannot accept the reality of the loss. They try to find and bring back the lost person and feel ongoing frustration and disappointment when this is not possible.
Disorganization and despair: Family members feel depressed and find it difficult to plan for the future. They are easily distracted and have difficulty concentrating and focusing.
Reorganization.
Treatment
Most of the support that people receive after a loss comes from friends and family. Doctors and nurses may also be a source of support. For people who experience difficulty in coping with their loss, grief counseling or grief therapy may be necessary.

Grief counseling helps mourners with normal grief reactions work through the tasks of grieving. Grief counseling can be provided by professionally trained people, or in self-help groups where bereaved people help other bereaved people. All of these services may be available in individual or group settings.

The goals of grief counseling include:

Helping the bereaved to accept the loss by helping him or her to talk about the loss.
Helping the bereaved to identify and express feelings related to the loss (for example, anger, guilt, anxiety, helplessness, and sadness).
Helping the bereaved to live without the person who died and to make decisions alone.
Helping the bereaved to separate emotionally from the person who died and to begin new relationships.
Providing support and time to focus on grieving at important times such as birthdays and anniversaries.
Describing normal grieving and the differences in grieving among individuals.
Providing continuous support.
Helping the bereaved to understand his or her methods of coping.
Identifying coping problems the bereaved may have and making recommendations for professional grief therapy.
Grief therapy is used with people who have more serious grief reactions. The goal of grief therapy is to identify and solve problems the mourner may have in separating from the person who died. When separation difficulties occur, they may appear as physical or behavior problems, delayed or extreme mourning, conflicted or extended grief, or unexpected mourning (although this is seldom present with cancer deaths).

Grief therapy may be available as individual or group therapy. A contract is set up with the individual that establishes the time limit of the therapy, the fees, the goals, and the focus of the therapy.

In grief therapy, the mourner talks about the deceased and tries to recognize whether he or she is experiencing an expected amount of emotion about the death. Grief therapy may allow the mourner to see that anger, guilt, or other negative or uncomfortable feelings can exist at the same time as more positive feelings about the person who died.

Human beings tend to make strong bonds of affection or attachment with others. When these bonds are broken, as in death, a strong emotional reaction occurs. After a loss occurs, a person must accomplish certain tasks to complete the process of grief. These basic tasks of mourning include accepting that the loss happened, living with and feeling the physical and emotional pain of grief, adjusting to life without the loved one, and emotionally separating from the loved one and going on with life without him or her. It is important that these tasks are completed before mourning can end.

In grief therapy, 6 tasks may be used to help a mourner work through grief:

Develop the ability to experience, express, and adjust to painful grief-related changes.
Find effective ways to cope with painful changes.
Establish a continuing relationship with the person who died.
Stay healthy and keep functioning.
Re-establish relationships and understand that others may have difficulty empathizing with the grief they experience.
Develop a healthy image of oneself and the world.
Complications in grief may come about due to uncompleted grief from earlier losses. The grief for these earlier losses must be managed in order to handle the current grief. Grief therapy includes dealing with the blockages to the mourning process, identifying unfinished business with the deceased, and identifying other losses that result from the death. The bereaved is helped to see that the loss is final and to picture life after the grief period.

Complicated Grief
Complicated grief reactions require more complex therapies than uncomplicated grief reactions. Adjustment disorders (especially depressed and anxious mood or disturbed emotions and behavior), major depression, substance abuse, and even post-traumatic stress disorder are some of the common problems of complicated bereavement. Complicated grief is identified by the extended length of time of the symptoms, the interference caused by the symptoms, or by the intensity of the symptoms (for example, intense suicidal thoughts or acts).

Complicated or unresolved grief may appear as a complete absence of grief and mourning, an ongoing inability to experience normal grief reactions, delayed grief, conflicted grief, or chronic grief. Factors that contribute to the chance that one may experience complicated grief include the suddenness of the death, the gender of the person in mourning, and the relationship to the deceased (for example, an intense, extremely close, or very contradictory relationship). Grief reactions that turn into major depression should be treated with both drug and psychological therapy. One who avoids any reminders of the person who died, who constantly thinks or dreams about the person who died, and who gets scared and panics easily at any reminders of the person who died may be suffering from post-traumatic stress disorder. Substance abuse may occur, frequently in an attempt to avoid painful feelings about the loss and symptoms (such as sleeplessness), and can also be treated with drugs and psychological therapy.

Children and Grief
In the past, children were thought to be miniature adults and were expected to behave as adults. It is now understood that there are differences in the ways in which children and adults mourn.

Unlike adults, bereaved children do not experience continual and intense emotional and behavioral grief reactions. Children may seem to show grief only occasionally and briefly, but in reality a child’s grief usually lasts longer than that of an adult. This may be explained by the fact that a child’s ability to experience intense emotions is limited. Mourning in children may need to be addressed again and again as the child gets older. Since bereavement is a process that continues over time, children will think about the loss repeatedly, especially during important times in their life, such as going to camp, graduating from school, getting married, or giving birth to their own children.

A child’s grief may be influenced by his or her age, personality, stage of development, earlier experiences with death, and his or her relationship with the deceased. The surroundings, cause of death, family members’ ability to communicate with one another and to continue as a family after the death can also affect grief. The child’s ongoing need for care, the child’s opportunity to share his or her feelings and memories, the parent’s ability to cope with stress, and the child’s steady relationships with other adults are also other factors that may influence grief.

Children do not react to loss in the same ways as adults. Grieving children may not show their feelings as openly as adults. Grieving children may not withdraw and dwell on the person who died, but instead may throw themselves into activities (for example, they may be sad one minute and playful the next). Often families think the child doesn’t really understand or has gotten over the death. Neither is true; children’s minds protect them from what is too powerful for them to handle. Children’s grieving periods are shortened because they cannot think through their thoughts and feelings like adults. Also, children have trouble putting their feelings about grief into words. Instead, his or her behavior speaks for the child. Strong feelings of anger and fears of abandonment or death may show up in the behavior of grieving children. Children often play death games as a way of working out their feelings and anxieties. These games are familiar to the children and provide safe opportunities to express their feelings.

Children’s Grief and Developmental Stages
Children at different stages of development have different understandings of death and the events near death.

Infants
Infants do not recognize death, but feelings of loss and separation are part of developing an awareness of death. Children who have been separated from their mother may be sluggish, quiet, unresponsive to a smile or a coo, undergo physical changes (for example, weight loss), be less active, and sleep less.

Age 2-3 years
Children at this age often confuse death with sleep and may experience anxiety as early as age 3. They may stop talking and appear to feel overall distress.

Age 3-6 years
At this age children see death as a kind of sleep; the person is alive, but only in a limited way. The child cannot fully separate death from life. Children may think that the person is still living, even though he or she might have been buried, and ask questions about the deceased (for example, how does the deceased eat, go to the toilet, breathe, or play?). Young children know that death occurs physically, but think it is temporary, reversible, and not final. The child’s concept of death may involve magical thinking. For example, the child may think that his or her thoughts can cause another person to become sick or die. Grieving children under 5 may have trouble eating, sleeping, and controlling bladder and bowel functions.

Age 6-9 years
Children at this age are commonly very curious about death, and may ask questions about what happens to one’s body when it dies. Death is thought of as a person or spirit separate from the person who was alive, such as a skeleton, ghost, angel of death, or bogeyman. They may see death as final and frightening but as something that happens mostly to old people (and not to themselves). Grieving children can become afraid of school, have learning problems, develop antisocial or aggressive behaviors, become overly concerned about their own health (for example, developing symptoms of imaginary illness), or withdraw from others. Or, children this age can become too attached and clinging. Boys usually become more aggressive and destructive (for example, acting out in school), instead of openly showing their sadness. When a parent dies children may feel abandoned by both their deceased parent and their surviving parent because the surviving parent is grieving and is unable to emotionally support the child.

Ages 9 and older
By the time a child is 9 years old, death is known to be unavoidable and is not seen as a punishment. By the time a child is 12 years old, death is seen as final and something that happens to everyone.

Grief and Developmental Stages
Enlarge  Age    Understanding of Death    Expressions of Grief   
Infancy to 2 years Is not yet able to understand death. Quietness, crankiness, decreased activity, poor sleep, and weight loss.
Separation from mother causes changes. 
2-6 years Death is like sleeping. Asks many questions (How does she go to the bathroom? How does she eat?).
Problems in eating, sleeping, and bladder and bowel control.
Fear of abandonment.
Tantrums.
Dead person continues to live and function in some ways. Magical thinking (Did I think something or do something that caused the death? Like when I said I hate you and I wish you would die?).
Death is temporary, not final.
Dead person can come back to life.
6-9 years Death is thought of as a person or spirit (skeleton, ghost, bogeyman).  Curious about death.
Asks specific questions.
May have exaggerated fears about school.
Death is final and frightening.  May have aggressive behaviors (especially boys).
Some concerns about imaginary illnesses.
Death happens to others, it won’t happen to ME. May feel abandoned.
9 and older Everyone will die.  Heightened emotions, guilt, anger, shame.
Increased anxiety over own death.
Mood swings.
Death is final and cannot be changed. Fear of rejection; not wanting to be different from peers.
Even I will die. Changes in eating habits.
Sleeping problems.
Regressive behaviors (loss of interest in outside activities). 
Impulsive behaviors.
Feels guilty about being alive (especially related to death of a brother, sister, or peer).
In American society, many grieving adults withdraw and do not talk to others. Children, however, often talk to the people around them (even strangers) to see the reactions of others and to get clues for their own responses. Children may ask confusing questions. For example, a child may ask, “I know grandpa died, but when will he come home?” This is a way of testing reality and making sure the story of the death has not changed.

Other Issues for Grieving Children
Children’s grief expresses 3 issues:

Did I cause the death to happen?
Is it going to happen to me?
Who is going to take care of me?
Did I cause the death to happen?
Children often think that they have magical powers. If a mother says in irritation, “You’ll be the death of me” and later dies, her child may wonder if he or she actually caused the mother’s death. Also, when children argue, one may say (or think), “I wish you were dead.” Should that child die, the surviving child may think that his or her thoughts actually caused the death.

Is it going to happen to me?
The death of another child may be especially hard for a child. If the child thinks that the death may have been prevented (by either a parent or a doctor) the child may think that he or she could also die.

Who is going to take care of me?
Since children depend on parents and other adults to take care of them, a grieving child may wonder who will care for him or her after the death of an important person.

Grieving Children: Treatment
A child’s grieving process may be made easier by being open and honest with the child about death, using direct language, and incorporating the child into memorial ceremonies for the person who died.

Explanation of death
Not talking about death (which indicates that the subject is off-limits) does not help children learn to cope with loss. When discussing death with children, explanations should be simple and direct. Each child should be told the truth using as much detail as he or she is able to understand. The child’s questions should be answered honestly and directly. Children need to be reassured about their own security (they often worry that they will also die, or that their surviving parent will go away). Children’s questions should be answered, making sure that the child understands the answers.

Correct language
A discussion about death should include the proper words, such as cancer, died, and death. Substitute words or phrases (for example, “he passed away,” “he is sleeping,” or “we lost him”) should never be used because they can confuse children and lead to misunderstandings.

Planning memorial ceremonies
When a death occurs, children can and should be included in the planning and participation of memorial ceremonies. These events help children (and adults) remember loved ones. Children should not be forced to be involved in these ceremonies, but they should be encouraged to take part in those portions of the events with which they feel most comfortable. If the child wants to attend the funeral, wake, or memorial service, he or she should be given in advance a full explanation of what to expect. The surviving parent may be too involved in his or her own grief to give their child full attention, therefore, it may be helpful to have a familiar adult or family member care for the grieving child.

References and resources for grieving children
There are many helpful books and videos that can be shared with grieving children:

Worden JW: Children and Grief: When a Parent Dies. New York: The Guilford Press, 1996.
Doka KJ, Ed.: Children Mourning, Mourning Children. Washington, DC: Hospice Foundation of America, 1995.
Wass H, Corr CA: Childhood and Death. Washington, DC: Hemisphere Publishing Corporation, 1984.
Corr CA, McNeil JN: Adolescence and Death. New York: Springer Publishing Company, 1986.
Corr, CA, Nabe CM, Corr DM: Death and Dying, Life and Living. 2nd ed., Pacific Grove: Brooks/Cole Publishing Company, 1997.
Grollman EA: Talking About Death: A Dialogue Between Parent and Child. 3rd ed., Boston: Beacon Press, 1990.
Schaefer D, Lyons C: How Do We Tell The Children?: Helping Children Understand And Cope When Someone Dies. New York: Newmarket Press, 1988.
Wolfelt A: Helping Children Cope with Grief. Muncie: Accelerated Development, 1983.
Walker A: To Hell with Dying. San Diego: Harcourt Brace Jovanovich, 1988.
Williams M: Velveteen Rabbit. Garden City: Doubleday, 1922.
Viost J: The Tenth Good Thing About Barney. New York: Atheneum, 1971.
Tiffault BW: A Quilt for Elizabeth. Omaha: Centering Corporation, 1992.
Levine J: Forever in My Heart: A Story to Help Children Participate in Life as a Parent Dies. Burnsville, NC: Rainbow Connection, 1992.
Knoderer K: Memory Book: A Special Way to Remember Someone You Love. Warminster: Mar-Co Products, 1995.
de Paola T: Nana Upstairs and Nana Downstairs. New York, NY: GP Putnam’s Sons, 1973.

Culture and Response to Grief and Mourning
Grief felt for the loss of a loved one, the loss of a treasured possession, or a loss associated with an important life change, occurs across all ages and cultures. However, the role that cultural heritage plays in an individual’s experience of grief and mourning is not well understood. Attitudes, beliefs, and practices regarding death must be described according to myths and mysteries surrounding death within different cultures.

Individual, personal experiences of grief are similar in different cultures. This is true even though different cultures have different mourning ceremonies, traditions, and behaviors to express grief. Helping families cope with the death of a loved one includes showing respect for the family’s cultural heritage and encouraging them to decide how to honor the death. Important questions that should be asked of people who are dealing with the loss of a loved one include:

What are the cultural rituals for coping with dying, the deceased person’s body, the final arrangements for the body, and honoring the death?
What are the family’s beliefs about what happens after death?
What does the family feel is a normal expression of grief and the acceptance of the loss?
What does the family consider to be the roles of each family member in handling the death?
Are certain types of death less acceptable (for example, suicide), or are certain types of death especially hard to handle for that culture (for example, the death of a child)?
Death, grief, and mourning spare no one and are normal life events. All cultures have developed ways to cope with death. Interfering with these practices may interfere with the necessary grieving processes. Understanding different cultures’ response to death can help physicians recognize the grieving process in patients of other cultures.

Source: National Cancer Institute (www.cancer.gov) , National Institutes of Health

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Here are

13 tips to help you:

■ Stick to a sleep schedule. Go to bed and wake up at the same time each day—even on the weekends.

■ Exercise is great but not too late in the day. Avoid exercising closer than 5 or 6 hours before bedtime.

■ Avoid caffeine and nicotine. The stimulating effects of caffeine in coffee, colas, teas, and chocolate can take as long as 8 hours to wear off fully. Nicotine is also a stimulant.

■ Avoid alcoholic drinks before bed. A “nightcap”might help you get to sleep, but alcohol keeps you in the lighter stages of sleep. You also tend to wake up in the middle of the night when the sedating effects have worn off.

■ Avoid large meals and beverages late at night. A large meal can cause indigestion that interferes
with sleep. Drinking too many fluids at night can cause you to awaken frequently to urinate.

■ Avoid medicines that delay or disrupt your sleep, if possible. Some commonly prescribed heart, blood pressure, or asthma medications, as well as some over-the-counter and herbal remedies for coughs,colds, or allergies, can disrupt sleep patterns.

Don’t take naps after 3 p.m. Naps can boost your brain power, but late afternoon naps can make it
harder to fall asleep at night. Also, keep naps to under an hour.

■ Relax before bed. Take time to unwind. A relaxing activity, such as reading or listening to music, should be part of your bedtime ritual.

■ Take a hot bath before bed. The drop in body temperature after the bath may help you feel sleepy,
and the bath can help relax you.

■ Have a good sleeping environment. Get rid of anything that might distract you from sleep, such as
noises, bright lights, an uncomfortable bed, or a TV or computer in the bedroom. Also, keeping the
temperature in your bedroom on the cool side can help you sleep better.

■ Have the right sunlight exposure. Daylight is key to regulating daily sleep patterns. Try to get outside in natural sunlight for at least 30 minutes each day.

■ Don’t lie in bed awake. If you find yourself still awake after staying in bed for more than 20
minutes, get up and do some relaxing activity until you feel sleepy. The anxiety of not being able to
sleep can make it harder to fall asleep.

■ See a doctor if you continue to have trouble sleeping. If you consistently find yourself feeling tired or not well rested during the day despite spending enough time in bed at night, you may have a sleep disorder. Your family doctor or a sleep specialist should be able to help you.

Source: National Heart, Lung and Blood Institute, National Institutes of Health

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Some survivors of cancer experience trauma-related symptoms similar to symptoms experienced by people who have survived highly stressful situations, such as military combat, natural disasters, violent personal attack (such as rape), or other life-threatening events. This group of symptoms is called posttraumatic stress disorder (PTSD) and includes avoiding situations related to the trauma, continuously thinking of the trauma, and being overexcited.

People with histories of cancer are considered to be at risk for PTSD. The physical and mental shock of having a life-threatening disease, of receiving treatment for cancer, and living with repeated threats to one’s body and life are traumatic experiences for many cancer patients.

Posttraumatic stress disorder (PTSD) is defined as the development of certain symptoms following a mentally stressful event that involved actual death or the threat of death, serious injury, or a threat to oneself or others. For the person who has experienced a diagnosis of cancer, the specific trauma that triggers PTSD is unclear. It may be the actual diagnosis of a life-threatening illness, aspects of the treatment process, test results, information given about recurrence, or some other aspect of the cancer experience. Learning that one’s child has cancer is traumatic for many parents. Because the cancer experience involves so many upsetting events, it is much more difficult to single out one event as a cause of stress than it is for other traumas, such as natural disasters or rape. The traumatic event may cause responses of extreme fear, helplessness, or horror and may trigger PTSD symptoms.

PTSD in cancer survivors may be expressed in these specific behaviors:

* Reliving the cancer experience in nightmares or flashbacks and by continuously thinking about it.
* Avoiding places, events, and people connected to the cancer experience.
* Being continuously overexcited, fearful, irritable, and unable to sleep.

To be diagnosed as PTSD, these symptoms must last for at least one month and cause significant problems in the patient’s personal relationships, employment, or other important areas of daily life. Patients who have these symptoms for less than one month often develop PTSD later.

Risk Factors, Protective Factors, and the Development of PTSD

Individual and social factors
Disease-related factors
Mental factors
Protective factors
How PTSD may develop

As many as one third of people who experience an extremely upsetting event, including cancer, develop posttraumatic stress disorder (PTSD). The event alone does not explain why some people get PTSD and others don’t. Although there is no clear answer as to which cancer survivors are at increased risk of developing PTSD, certain mental, physical, or social factors may make some people more likely to experience it.

Individual and social factors

Individual and social factors that have been associated with a higher incidence of PTSD include younger age, fewer years of formal education, and lower income.

Disease-related factors

Certain disease-related factors are associated with PTSD:

* In patients who received a bone marrow transplant, PTSD occurs more often when there is advanced disease and a longer hospital stay.
* In adult survivors of bone cancer and Hodgkin lymphoma, people for whom more time has passed since diagnosis and treatment tended to show fewer symptoms.
* In survivors of childhood cancer, symptoms of PTSD occur more often when there was a longer treatment time.
* Interfering thoughts occur more often in patients who experienced pain and other physical symptoms.
* Cancer that has returned has been shown to increase stress symptoms in patients.

Mental factors

Mental factors may affect the development of PTSD in some patients:

* Previous trauma.
* Previous psychological problems.
* High level of general stress.
* Genetic factors and biological factors (such as a hormone disorder) that affect memory and learning.
* The amount of social support available.
* Threat to life and body.
* Having PTSD before being diagnosed with cancer.
* The use of avoidance to cope with stress.

Protective factors

Certain factors may decrease a person’s chance of developing PTSD. These include increased social support, accurate information about the stage of the cancer, and a satisfactory relationship with the medical staff.

How PTSD may develop

PTSD symptoms develop by both conditioning and learning. Conditioning explains the fear responses caused by certain triggers that were first associated with the upsetting event. Neutral triggers (such as smells, sounds, and sights) that occurred at the same time as upsetting triggers (such as chemotherapy or painful treatments) later cause anxiety, stress, and fear even when they occur alone, after the trauma has ended. Once established, PTSD symptoms are continued through learning. The patient learns that avoiding the triggers prevents unpleasant feelings and thoughts, so coping by avoidance continues.

Although conditioning and learning are part of the process, many factors may explain why one person develops PTSD and another does not.

Assessment

It is important that cancer patients undergo a careful assessment for posttraumatic stress disorder (PTSD) so that early symptoms may be identified and treated. The timing of this assessment will vary with the individual patient. Cancer is an experience of repeated traumas and undetermined length. The patient may experience stress symptoms anytime from diagnosis through completion of treatment and cancer recurrence. In patients who have a history of victimization (such as Holocaust survivors) and who have PTSD or its symptoms from these experiences, symptoms can be started again by certain triggers experienced during their cancer treatment (for example, clinical procedures such as being inside MRI or CT scanners). While these patients may have problems adjusting to cancer and cancer treatment, their PTSD symptoms may vary, depending on other factors. The symptoms may become more or less prevalent during and after the cancer treatment.

Symptoms of PTSD usually begin within the first 3 months after the trauma, but sometimes they do not appear for months or even years afterwards. Therefore, cancer survivors and their families should be involved in long-term monitoring.

Some people who have experienced an upsetting event may show early symptoms without meeting the full diagnosis of PTSD. However, these early symptoms predict that PTSD may develop later. Early symptoms also indicate the need for repeated and long-term follow-up of cancer survivors and their families.

Diagnosing PTSD can be difficult since many of the symptoms are similar to other psychiatric problems. For example, irritability, poor concentration, increased defensiveness, excessive fear, and disturbed sleep are symptoms of both PTSD and anxiety disorder. Other symptoms are common to PTSD, phobias, and panic disorder. Some symptoms, such as loss of interest, a sense of having no future, avoidance of other people, and sleep problems may indicate the patient has PTSD or depression. Even without PTSD or other problems, normal reactions to the cancer diagnosis and treatment of a life-threatening disease can include interfering thoughts, separating from people and the world, sleep problems, and over-excitability.

Questionnaires and interviews are used by health care providers to assess if the patient has symptoms of stress and to determine the diagnosis.

Other problems may also exist in addition to PTSD. These problems can include substance abuse, emotional problems, and other anxiety disorders, including major depression, alcohol dependence, drug dependence, social fears, and/or obsessive-compulsive disorder.

Treatment

Effects of posttraumatic stress disorder (PTSD) are long-lasting and serious. It may affect the patient’s ability to have a normal lifestyle and may interfere with personal relationships, education, and employment. Because avoiding places and persons associated with cancer is part of PTSD, the syndrome may prevent the patient from seeking medical treatment. It is important that cancer survivors receive information about the possible psychological effects of their cancer experience and early treatment of symptoms of PTSD. Therapies used to treat PTSD are those used for other trauma victims. Treatment may involve more than one type of therapy.

The crisis intervention method tries to lessen the symptoms and return the patient to a normal level of functioning. The therapist focuses on solving problems, teaching coping skills, and providing a supportive setting for the patient.

Some patients are helped by methods that teach them to change their behaviors by changing their thinking patterns. Some of these methods include helping the patient understand symptoms, teaching coping and stress management skills (such as relaxation training), teaching the patient to reword upsetting thoughts, and helping the patient become less sensitive to upsetting triggers. Behavior therapy is used when the symptoms are avoidance of sexual activity and intimate situations.

Support groups may also help people who experience posttraumatic stress symptoms. In the group setting, patients can receive emotional support, meet others with similar experiences and symptoms, and learn coping and management skills.

For patients with severe symptoms, medications may be used. These include antidepressants, antianxiety medications, and when necessary, antipsychotic medications.

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Everyone experiences anxiety at one time or another — “butterflies in the stomach” before giving a speech or sweaty palms during a job interview are common symptoms. Other symptoms include irritability, uneasiness, jumpiness, feelings of apprehension, rapid or irregular heartbeat, stomachache, nausea, faintness, and breathing problems.

Anxiety is often manageable and mild, but sometimes it can present serious problems. A high level or prolonged state of anxiety can make the activities of daily life difficult or impossible. People may have generalized anxiety disorder (GAD) or more specific anxiety disorders such as panic, phobias, obsessive-compulsive disorder (OCD), or post-traumatic stress disorder (PTSD).

Both antidepressants and antianxiety medications are used to treat anxiety disorders. The broad-spectrum activity of most antidepressants provides effectiveness in anxiety disorders as well as depression. The first medication specifically approved for use in the treatment of OCD was the tricyclic antidepressant clomipramine (Anafranil). The SSRIs, fluoxetine (Prozac), fluvoxamine (Luvox), paroxetine (Paxil), and sertraline (Zoloft) have now been approved for use with OCD. Paroxetine has also been approved for social anxiety disorder (social phobia), GAD, and panic disorder; and sertraline is approved for panic disorder and PTSD. Venlafaxine (Effexor) has been approved for GAD.

Antianxiety medications include the benzodiazepines, which can relieve symptoms within a short time. They have relatively few side effects: drowsiness and loss of coordination are most common; fatigue and mental slowing or confusion can also occur. These effects make it dangerous for people taking benzodiazepines to drive or operate some machinery. Other side effects are rare.

Benzodiazepines vary in duration of action in different people; they may be taken two or three times a day, sometimes only once a day, or just on an “as-needed” basis. Dosage is generally started at a low level and gradually raised until symptoms are diminished or removed. The dosage will vary a great deal depending on the symptoms and the individual’s body chemistry.

It is wise to abstain from alcohol when taking benzodiazepines, because the interaction between benzodiazepines and alcohol can lead to serious and possibly life-threatening complications. It is also important to tell the doctor about other medications being taken.

People taking benzodiazepines for weeks or months may develop tolerance for and dependence on these drugs. Abuse and withdrawal reactions are also possible. For these reasons, the medications are generally prescribed for brief periods of time—days or weeks—and sometimes just for stressful situations or anxiety attacks. However, some patients may need long-term treatment.

It is essential to talk with the doctor before discontinuing a benzodiazepine. A withdrawal reaction may occur if the treatment is stopped abruptly. Symptoms may include anxiety, shakiness, headache, dizziness, sleeplessness, loss of appetite, or in extreme cases, seizures. A withdrawal reaction may be mistaken for a return of the anxiety because many of the symptoms are similar. After a person has taken benzodiazepines for an extended period, the dosage is gradually reduced before it is stopped completely. Commonly used benzodiazepines include clonazepam (Klonopin), alprazolam (Xanax), diazepam (Valium), and lorazepam (Ativan).

The only medication specifically for anxiety disorders other than the benzodiazepines is buspirone (BuSpar). Unlike the benzodiazepines, buspirone must be taken consistently for at least 2 weeks to achieve an antianxiety effect and therefore cannot be used on an “as-needed” basis.

Beta blockers, medications often used to treat heart conditions and high blood pressure, are sometimes used to control “performance anxiety” when the individual must face a specific stressful situation—a speech, a presentation in class, or an important meeting. Propranolol (Inderal, Inderide) is a commonly used beta blocker.

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Major depression, the kind of depression that will most likely benefit from treatment with medications, is more than just “the blues.” It is a condition that lasts 2 weeks or more, and interferes with a person’s ability to carry on daily tasks and enjoy activities that previously brought pleasure. Depression is associated with abnormal functioning of the brain. An interaction between genetic tendency and life history appears to determine a person’s chance of becoming depressed. Episodes of depression may be triggered by stress, difficult life events, side effects of medications, or medication/substance withdrawal, or even viral infections that can affect the brain.

Depressed people will seem sad, or “down,” or may be unable to enjoy their normal activities. They may have no appetite and lose weight (although some people eat more and gain weight when depressed). They may sleep too much or too little, have difficulty going to sleep, sleep restlessly, or awaken very early in the morning. They may speak of feeling guilty, worthless, or hopeless; they may lack energy or be jumpy and agitated. They may think about killing themselves and may even make a suicide attempt. Some depressed people have delusions (false, fixed ideas) about poverty, sickness, or sinfulness that are related to their depression. Often feelings of depression are worse at a particular time of day, for instance, every morning or every evening.

Not everyone who is depressed has all these symptoms, but everyone who is depressed has at least some of them, co-existing, on most days. Depression can range in intensity from mild to severe. Depression can co-occur with other medical disorders such as cancer, heart disease, stroke, Parkinson’s disease, Alzheimer’s disease, and diabetes. In such cases, the depression is often overlooked and is not treated. If the depression is recognized and treated, a person’s quality of life can be greatly improved.

Antidepressants are used most often for serious depressions, but they can also be helpful for some milder depressions. Antidepressants are not “uppers” or stimulants, but rather take away or reduce the symptoms of depression and help depressed people feel the way they did before they became depressed.

The doctor chooses an antidepressant based on the individual’s symptoms. Some people notice improvement in the first couple of weeks; but usually the medication must be taken regularly for at least 6 weeks and, in some cases, as many as 8 weeks before the full therapeutic effect occurs. If there is little or no change in symptoms after 6 or 8 weeks, the doctor may prescribe a different medication or add a second medication such as lithium, to augment the action of the original antidepressant. Because there is no way of knowing beforehand which medication will be effective, the doctor may have to prescribe first one and then another. To give a medication time to be effective and to prevent a relapse of the depression once the patient is responding to an antidepressant, the medication should be continued for 6 to 12 months, or in some cases longer, carefully following the doctor’s instructions. When a patient and the doctor feel that medication can be discontinued, withdrawal should be discussed as to how best to taper off the medication gradually. Never discontinue medication without talking to the doctor about it. For those who have had several bouts of depression, long-term treatment with medication is the most effective means of preventing more episodes.

Dosage of antidepressants varies, depending on the type of drug and the person’s body chemistry, age, and, sometimes, body weight. Traditionally, antidepressant dosages are started low and raised gradually over time until the desired effect is reached without the appearance of troublesome side effects. Newer antidepressants may be started at or near therapeutic doses.

Early Antidepressants. From the 1960s through the 1980s, tricyclic antidepressants (named for their chemical structure) were the first line of treatment for major depression. Most of these medications affected two chemical neurotransmitters, norepinephrine and serotonin. Though the tricyclics are as effective in treating depression as the newer antidepressants, their side effects are usually more unpleasant; thus, today tricyclics such as imipramine, amitriptyline, nortriptyline, and desipramine are used as a second- or third-line treatment. Other antidepressants introduced during this period were monoamine oxidase inhibitors (MAOIs). MAOIs are effective for some people with major depression who do not respond to other antidepressants. They are also effective for the treatment of panic disorder and bipolar depression. MAOIs approved for the treatment of depression are phenelzine (Nardil), tranylcypromine (Parnate), and isocarboxazid (Marplan). Because substances in certain foods, beverages, and medications can cause dangerous interactions when combined with MAOIs, people on these agents must adhere to dietary restrictions. This has deterred many clinicians and patients from using these effective medications, which are in fact quite safe when used as directed.

The past decade has seen the introduction of many new antidepressants that work as well as the older ones but have fewer side effects. Some of these medications primarily affect one neurotransmitter, serotonin, and are called >selective serotonin reuptake inhibitors (SSRIs). These include fluoxetine (Prozac), sertraline (Zoloft), fluvoxamine (Luvox), paroxetine (Paxil), and citalopram (Celexa).

The late 1990s ushered in new medications that, like the tricyclics, affect both norepinephrine and serotonin but have fewer side effects. These new medications include venlafaxine (Effexor) and nefazadone (Serzone).

Other newer medications chemically unrelated to the other antidepressants are the sedating mirtazepine (Remeron) and the more activating bupropion (Wellbutrin). Wellbutrin has not been associated with weight gain or sexual dysfunction but is not used for people with, or at risk for, a seizure disorder.

Each antidepressant differs in its side effects and in its effectiveness in treating an individual person, but the majority of people with depression can be treated effectively by one of these antidepressants.

Side Effects of Antidepressant Medications

Antidepressants may cause mild, and often temporary, side effects (sometimes referred to as adverse effects) in some people. Typically, these are not serious. However, any reactions or side effects that are unusual, annoying, or that interfere with functioning should be reported to the doctor immediately. The most common side effects of tricyclic antidepressants, and ways to deal with them, are as follows:

• Dry mouth—it is helpful to drink sips of water; chew sugarless gum; brush teeth daily.
• Constipation—bran cereals, prunes, fruit, and vegetables should be in the diet.
• Bladder problems—emptying the bladder completely may be difficult, and the urine stream may not be as strong as usual. Older men with enlarged prostate conditions may be at particular risk for this problem. The doctor should be notified if there is any pain.
• Sexual problems—sexual functioning may be impaired; if this is worrisome, it should be discussed with the doctor.
• Blurred vision—this is usually temporary and will not necessitate new glasses. Glaucoma patients should report any change in vision to the doctor.
• Dizziness—rising from the bed or chair slowly is helpful.
• Drowsiness as a daytime problem—this usually passes soon. A person who feels drowsy or sedated should not drive or operate heavy equipment. The more sedating antidepressants are generally taken at bedtime to help sleep and to minimize daytime drowsiness.
• Increased heart rate—pulse rate is often elevated. Older patients should have an electrocardiogram (EKG) before beginning tricyclic treatment.

The newer antidepressants, including SSRIs, have different types of side effects, as follows:

• Sexual problems—fairly common, but reversible, in both men and women. The doctor should be consulted if the problem is persistent or worrisome.
• Headache—this will usually go away after a short time.
• Nausea—may occur after a dose, but it will disappear quickly.
• Nervousness and insomnia (trouble falling asleep or waking often during the night)—these may occur during the first few weeks; dosage reductions or time will usually resolve them.
• Agitation (feeling jittery)—if this happens for the first time after the drug is taken and is more than temporary, the doctor should be notified.
• Any of these side effects may be amplified when an SSRI is combined with other medications that affect serotonin. In the most extreme cases, such a combination of medications (e.g., an SSRI and an MAOI) may result in a potentially serious or even fatal “serotonin syndrome,” characterized by fever, confusion, muscle rigidity, and cardiac, liver, or kidney problems.

The small number of people for whom MAOIs are the best treatment need to avoid taking decongestants and consuming certain foods that contain high levels of tyramine, such as many cheeses, wines, and pickles. The interaction of tyramine with MAOIs can bring on a sharp increase in blood pressure that can lead to a stroke. The doctor should furnish a complete list of prohibited foods that the individual should carry at all times. Other forms of antidepressants require no food restrictions. MAOIs also should not be combined with other antidepressants, especially SSRIs, due to the risk of serotonin syndrome.

Medications of any kind—prescribed, over-the-counter, or herbal supplements—should never be mixed without consulting the doctor; nor should medications ever be borrowed from another person. Other health professionals who may prescribe a drug—such as a dentist or other medical specialist—should be told that the person is taking a specific antidepressant and the dosage. Some drugs, although safe when taken alone, can cause severe and dangerous side effects if taken with other drugs. Alcohol (wine, beer, and hard liquor) or street drugs, may reduce the effectiveness of antidepressants and their use should be minimized or, preferably, avoided by anyone taking antidepressants. Some people who have not had a problem with alcohol use may be permitted by their doctor to use a modest amount of alcohol while taking one of the newer antidepressants. The potency of alcohol may be increased by medications since both are metabolized by the liver; one drink may feel like two.

Although not common, some people have experienced withdrawal symptoms when stopping an antidepressant too abruptly. Therefore, when discontinuing an antidepressant, gradual withdrawal is generally advisable.

Questions about any antidepressant prescribed, or problems that may be related to the medication, should be discussed with the doctor and/or the pharmacist.

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Some people with symptoms of mania who do not benefit from or would prefer to avoid lithium have been found to respond to anticonvulsant medications commonly prescribed to treat seizures.

The anticonvulsant valproic acid (Depakote, divalproex sodium) is the main alternative therapy for bipolar disorder. It is as effective in non-rapid-cycling bipolar disorder as lithium and appears to be superior to lithium in rapid-cycling bipolar disorder.² Although valproic acid can cause gastrointestinal side effects, the incidence is low. Other adverse effects occasionally reported are headache, double vision, dizziness, anxiety, or confusion. Because in some cases valproic acid has caused liver dysfunction, liver function tests should be performed before therapy and at frequent intervals thereafter, particularly during the first 6 months of therapy.

Other anticonvulsants used for bipolar disorder include carbamazepine (Tegretol), lamotrigine (Lamictal), gabapentin (Neurontin), and topiramate (Topamax). The evidence for anticonvulsant effectiveness is stronger for acute mania than for long-term maintenance of bipolar disorder. Some studies suggest particular efficacy of lamotrigine in bipolar depression. At present, the lack of formal FDA approval of anticonvulsants other than valproic acid for bipolar disorder may limit insurance coverage for these medications.

Most people who have bipolar disorder take more than one medication. Along with the mood stabilizer—lithium and/or an anticonvulsant—they may take a medication for accompanying agitation, anxiety, insomnia, or depression. It is important to continue taking the mood stabilizer when taking an antidepressant because research has shown that treatment with an antidepressant alone increases the risk that the patient will switch to mania or hypomania, or develop rapid cycling.⁵ Sometimes, when a bipolar patient is not responsive to other medications, an atypical antipsychotic medication is prescribed. Finding the best possible medication, or combination of medications, is of utmost importance to the patient and requires close monitoring by a doctor and strict adherence to the recommended treatment regimen.

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Bipolar disorder is characterized by cycling mood changes: severe highs (mania) and lows (depression). Episodes may be predominantly manic or depressive, with normal mood between episodes. Mood swings may follow each other very closely, within days (rapid cycling), or may be separated by months to years. The “highs” and “lows” may vary in intensity and severity and can co-exist in “mixed” episodes.

When people are in a manic “high,” they may be overactive, overly talkative, have a great deal of energy, and have much less need for sleep than normal. They may switch quickly from one topic to another, as if they cannot get their thoughts out fast enough. Their attention span is often short, and they can be easily distracted. Sometimes people who are “high” are irritable or angry and have false or inflated ideas about their position or importance in the world. They may be very elated, and full of grand schemes that might range from business deals to romantic sprees. Often, they show poor judgment in these ventures. Mania, untreated, may worsen to a psychotic state.

In a depressive cycle the person may have a “low” mood with difficulty concentrating; lack of energy, with slowed thinking and movements; changes in eating and sleeping patterns (usually increases of both in bipolar depression); feelings of hopelessness, helplessness, sadness, worthlessness, guilt; and, sometimes, thoughts of suicide.

Lithium

The medication used most often to treat bipolar disorder is lithium. Lithium evens out mood swings in both directions—from mania to depression, and depression to mania—so it is used not just for manic attacks or flare-ups of the illness but also as an ongoing maintenance treatment for bipolar disorder.

Although lithium will reduce severe manic symptoms in about 5 to 14 days, it may be weeks to several months before the condition is fully controlled. Antipsychotic medications are sometimes used in the first several days of treatment to control manic symptoms until the lithium begins to take effect. Antidepressants may also be added to lithium during the depressive phase of bipolar disorder. If given in the absence of lithium or another mood stabilizer, antidepressants may provoke a switch into mania in people with bipolar disorder.

A person may have one episode of bipolar disorder and never have another, or be free of illness for several years. But for those who have more than one manic episode, doctors usually give serious consideration to maintenance (continuing) treatment with lithium.

Some people respond well to maintenance treatment and have no further episodes. Others may have moderate mood swings that lessen as treatment continues, or have less frequent or less severe episodes. Unfortunately, some people with bipolar disorder may not be helped at all by lithium. Response to treatment with lithium varies, and it cannot be determined beforehand who will or will not respond to treatment.

Regular blood tests are an important part of treatment with lithium. If too little is taken, lithium will not be effective. If too much is taken, a variety of side effects may occur. The range between an effective dose and a toxic one is small. Blood lithium levels are checked at the beginning of treatment to determine the best lithium dosage. Once a person is stable and on a maintenance dosage, the lithium level should be checked every few months. How much lithium people need to take may vary over time, depending on how ill they are, their body chemistry, and their physical condition.

Side Effects of Lithium

When people first take lithium, they may experience side effects such as drowsiness, weakness, nausea, fatigue, hand tremor, or increased thirst and urination. Some may disappear or decrease quickly, although hand tremor may persist. Weight gain may also occur. Dieting will help, but crash diets should be avoided because they may raise or lower the lithium level. Drinking low-calorie or no-calorie beverages, especially water, will help keep weight down. Kidney changes—increased urination and, in children, enuresis (bed wetting)—may develop during treatment. These changes are generally manageable and are reduced by lowering the dosage. Because lithium may cause the thyroid gland to become underactive (hypothyroidism) or sometimes enlarged (goiter), thyroid function monitoring is a part of the therapy. To restore normal thyroid function, thyroid hormone may be given along with lithium.

Because of possible complications, doctors either may not recommend lithium or may prescribe it with caution when a person has thyroid, kidney, or heart disorders, epilepsy, or brain damage. Women of childbearing age should be aware that lithium increases the risk of congenital malformations in babies. Special caution should be taken during the first 3 months of pregnancy.

Anything that lowers the level of sodium in the body—reduced intake of table salt, a switch to a low-salt diet, heavy sweating from an unusual amount of exercise or a very hot climate, fever, vomiting, or diarrhea—may cause a lithium buildup and lead to toxicity. It is important to be aware of conditions that lower sodium or cause dehydration and to tell the doctor if any of these conditions are present so the dose can be changed.

Lithium, when combined with certain other medications, can have unwanted effects. Some diuretics—substances that remove water from the body—increase the level of lithium and can cause toxicity. Other diuretics, like coffee and tea, can lower the level of lithium. Signs of lithium toxicity may include nausea, vomiting, drowsiness, mental dullness, slurred speech, blurred vision, confusion, dizziness, muscle twitching, irregular heartbeat, and, ultimately, seizures. A lithium overdose can be life-threatening. People who are taking lithium should tell every doctor who is treating them, including dentists, about all medications they are taking.

With regular monitoring, lithium is a safe and effective drug that enables many people, who otherwise would suffer from incapacitating mood swings, to lead normal lives.

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A person who is psychotic is out of touch with reality. People with psychosis may hear “voices” or have strange and illogical ideas (for example, thinking that others can hear their thoughts, or are trying to harm them, or that they are the President of the United States or some other famous person). They may get excited or angry for no apparent reason, or spend a lot of time by themselves, or in bed, sleeping during the day and staying awake at night. The person may neglect appearance, not bathing or changing clothes, and may be hard to talk to—barely talking or saying things that make no sense. They often are initially unaware that their condition is an illness.

These kinds of behaviors are symptoms of a psychotic illness such as schizophrenia. Antipsychotic medications act against these symptoms. These medications cannot “cure” the illness, but they can take away many of the symptoms or make them milder. In some cases, they can shorten the course of an episode of the illness as well.

There are a number of antipsychotic (neuroleptic) medications available. These medications affect neurotransmitters that allow communication between nerve cells. One such neurotransmitter, dopamine, is thought to be relevant to schizophrenia symptoms. All these medications have been shown to be effective for schizophrenia. The main differences are in the potency—that is, the dosage (amount) prescribed to produce therapeutic effects—and the side effects. Some people might think that the higher the dose of medication prescribed, the more serious the illness; but this is not always true.

The first antipsychotic medications were introduced in the 1950s. Antipsychotic medications have helped many patients with psychosis lead a more normal and fulfilling life by alleviating such symptoms as hallucinations, both visual and auditory, and paranoid thoughts. However, the early antipsychotic medications often have unpleasant side effects, such as muscle stiffness, tremor, and abnormal movements, leading researchers to continue their search for better drugs.

The 1990s saw the development of several new drugs for schizophrenia, called “atypical antipsychotics.” Because they have fewer side effects than the older drugs, today they are often used as a first-line treatment. The first atypical antipsychotic, clozapine (Clozaril), was introduced in the United States in 1990. In clinical trials, this medication was found to be more effective than conventional or “typical” antipsychotic medications in individuals with treatment-resistant schizophrenia (schizophrenia that has not responded to other drugs), and the risk of tardive dyskinesia (a movement disorder) was lower. However, because of the potential side effect of a serious blood disorder—agranulocytosis (loss of the white blood cells that fight infection)—patients who are on clozapine must have a blood test every 1 or 2 weeks. The inconvenience and cost of blood tests and the medication itself have made maintenance on clozapine difficult for many people. Clozapine, however, continues to be the drug of choice for treatment-resistant schizophrenia patients.

Several other atypical antipsychotics have been developed since clozapine was introduced. The first was risperidone (Risperdal), followed by olanzapine (Zyprexa), quetiapine (Seroquel), and ziprasidone (Geodon). Each has a unique side effect profile, but in general, these medications are better tolerated than the earlier drugs.

All these medications have their place in the treatment of schizophrenia, and doctors will choose among them. They will consider the person’s symptoms, age, weight, and personal and family medication history.

Dosages and Side Effects

Some drugs are very potent and the doctor may prescribe a low dose. Other drugs are not as potent and a higher dose may be prescribed.

Unlike some prescription drugs, which must be taken several times during the day, some antipsychotic medications can be taken just once a day. In order to reduce daytime side effects such as sleepiness, some medications can be taken at bedtime. Some antipsychotic medications are available in “depot” forms that can be injected once or twice a month.

Most side effects of antipsychotic medications are mild. Many common ones lessen or disappear after the first few weeks of treatment. These include drowsiness, rapid heartbeat, and dizziness when changing position.

Some people gain weight while taking medications and need to pay extra attention to diet and exercise to control their weight. Other side effects may include a decrease in sexual ability or interest, problems with menstrual periods, sunburn, or skin rashes. If a side effect occurs, the doctor should be told. He or she may prescribe a different medication, change the dosage or schedule, or prescribe an additional medication to control the side effects.

Just as people vary in their responses to antipsychotic medications, they also vary in how quickly they improve. Some symptoms may diminish in days; others take weeks or months. Many people see substantial improvement by the sixth week of treatment. If there is no improvement, the doctor may try a different type of medication. The doctor cannot tell beforehand which medication will work for a person. Sometimes a person must try several medications before finding one that works.

If a person is feeling better or even completely well, the medication should not be stopped without talking to the doctor. It may be necessary to stay on the medication to continue feeling well. If, after consultation with the doctor, the decision is made to discontinue the medication, it is important to continue to see the doctor while tapering off medication. Many people with bipolar disorder, for instance, require antipsychotic medication only for a limited time during a manic episode until mood-stabilizing medication takes effect. On the other hand, some people may need to take antipsychotic medication for an extended period of time. These people usually have chronic (long-term, continuous) schizophrenic disorders, or have a history of repeated schizophrenic episodes, and are likely to become ill again. Also, in some cases a person who has experienced one or two severe episodes may need medication indefinitely. In these cases, medication may be continued in as low a dosage as possible to maintain control of symptoms. This approach, called maintenance treatment, prevents relapse in many people and removes or reduces symptoms for others.

Multiple Medications

Antipsychotic medications can produce unwanted effects when taken with other medications. Therefore, the doctor should be told about all medicines being taken, including over-the-counter medications and vitamin, mineral, and herbal supplements, and the extent of alcohol use. Some antipsychotic medications interfere with antihypertensive medications (taken for high blood pressure), anticonvulsants (taken for epilepsy), and medications used for Parkinson’s disease. Other antipsychotics add to the effect of alcohol and other central nervous system depressants such as antihistamines, antidepressants, barbiturates, some sleeping and pain medications, and narcotics.

Other Effects

Long-term treatment of schizophrenia with one of the older, or “conventional,” antipsychotics may cause a person to develop tardive dyskinesia (TD). Tardive dyskinesia is a condition characterized by involuntary movements, most often around the mouth. It may range from mild to severe. In some people, it cannot be reversed, while others recover partially or completely. Tardive dyskinesia is sometimes seen in people with schizophrenia who have never been treated with an antipsychotic medication; this is called “spontaneous dyskinesia.”¹ However, it is most often seen after long-term treatment with older antipsychotic medications. The risk has been reduced with the newer “atypical” medications. There is a higher incidence in women, and the risk rises with age. The possible risks of long-term treatment with an antipsychotic medication must be weighed against the benefits in each case. The risk for TD is 5 percent per year with older medications; it is less with the newer medications.

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All of us worry about things like health, money, or family problems at one time or another. But people with GAD are extremely worried about these and many other things, even when there is little or no reason to worry about them. They may be very anxious about just getting through the day. They think things will always go badly. At times, worrying keeps people with GAD from doing everyday tasks.

This is a list of common symptoms. People with GAD:

• worry very much about everyday things for at least six months, even if there is little or no reason to worry about them;
• can’t control their constant worries;
• know that they worry much more than they should;
• can’t relax;
• have a hard time concentrating;
• are easily startled; and
• have trouble falling asleep or staying asleep.
• common body symptoms are:
  • feeling tired for no reason;
  • headaches;
  • muscle tension and aches;
  • having a hard time swallowing;
  • trembling or twitching;
  • being irritable;
  • sweating;
  • nausea;
  • feeling lightheaded;
  • feeling out of breath;
  • having to go to the bathroom a lot; and
  • hot flashes.
  • antidepressants,
  • anti-anxiety medicines, and
  • beta blockers.

When does GAD start?

GAD develops slowly. It often starts during the time between childhood and middle age. Symptoms may get better or worse at different times, and often are worse during times of stress.

People with GAD may visit a doctor many times before they find out they have this disorder. They ask their doctors to help them with the signs of GAD, such as headaches or trouble falling asleep, but don’t always get the help they need right away. It may take doctors some time to be sure that a person has GAD instead of something else.

Is there help?

There is help for people with GAD. The first step is to go to a doctor or health clinic to talk about symptoms. People who think they have GAD may want to bring this booklet to the doctor to help them talk about the symptoms in it. The doctor will do an exam to make sure that another physical problem isn’t causing the symptoms. The doctor may make a referral to a mental health specialist.

Doctors may prescribe medication to help relieve GAD. It’s important to know that some of these medicines may take a few weeks to start working. In most states only a medical doctor (a family doctor or psychiatrist) can prescribe medications.

The kinds of medicines used to treat GAD are listed below. Some are used to treat other problems, such as depression, but also are helpful for GAD:

Doctors also may ask people with GAD to go to therapy with a licensed social worker, psychologist, or psychiatrist. This treatment can help people with GAD feel less anxious and fearful.

There is no cure for GAD yet, but treatments can give relief to people who have it and help them live a more normal life. If you know someone with signs of GAD, talk to him or her about seeing a doctor. Offer to go along for support. To find out more about GAD, call 1-866-615-NIMH (1-866-615-6464) to have free information mailed to you.

Who pays for treatment?

Most insurance plans cover treatment for anxiety disorders. People who are going to have treatment should check with their own insurance companies to find out about coverage. For people who don’t have insurance, local city or county governments may offer treatment at a clinic or health center, where the cost is based on income. Medicaid plans also may pay for GAD treatment.

Why do people get GAD?

GAD sometimes runs in families, but no one knows for sure why some people have it, while others don’t. When chemicals in the brain are not at a certain level it can cause a person to have GAD. That is why medications often help with the symptoms because they help the brain chemicals stay at the correct levels.

To improve treatment, scientists are studying how well different medicines and therapies work. In one kind of research, people with GAD choose to take part in a clinical trial to help doctors find out what treatments work best for most people, or what works best for different symptoms. Usually, the treatment is free. Scientists are learning more about how the brain works so that they can discover new treatments.

Personal story

“I was worried all the time about everything. It didn’t matter that there were no signs of problems, I just got upset. I was having trouble falling asleep at night, and I couldn’t keep my mind focused at work. I felt angry at my family all the time.

“I saw my doctor and explained my constant worries. My doctor sent me to someone who knows about GAD. Now I am taking medicine and working with a counselor to cope better with my worries. I had to work hard, but I feel better. I’m glad I made that first call to my doctor.”

If you have any specific question, you can ask the doctors at www.mymedexpert.com

If you think you have an anxiety disorder, the first person you should see is your family doctor. A physician can determine whether the symptoms that alarm you are due to an anxiety disorder, another medical condition, or both.

If an anxiety disorder is diagnosed, the next step is usually seeing a mental health professional. The practitioners who are most helpful with anxiety disorders are those who have training in cognitive-behavioral therapy and/or behavioral therapy, and who are open to using medication if it is needed.

You should feel comfortable talking with the mental health professional you choose. If you do not, you should seek help elsewhere. Once you find a mental health professional with whom you are comfortable, the two of you should work as a team and make a plan to treat your anxiety disorder together.

Remember that once you start on medication, it is important not to stop taking it abruptly. Certain drugs must be tapered off under the supervision of a doctor or bad reactions can occur. Make sure you talk to the doctor who prescribed your medication before you stop taking it. If you are having trouble with side effects, it’s possible that they can be eliminated by adjusting how much medication you take and when you take it.

Most insurance plans, including health maintenance organizations (HMOs), will cover treatment for anxiety disorders. Check with your insurance company and find out. If you don’t have insurance, the Health and Human Services division of your county government may offer mental health care at a public mental health center that charges people according to how much they are able to pay. If you are on public assistance, you may be able to get care through your state Medicaid plan.

Ways to Make Treatment More Effective

Many people with anxiety disorders benefit from joining a self-help or support group and sharing their problems and achievements with others. Internet chat rooms can also be useful in this regard, but any advice received over the Internet should be used with caution, as Internet acquaintances have usually never seen each other and false identities are common. Talking with a trusted friend or member of the clergy can also provide support, but it is not a substitute for care from a mental health professional.

Stress management techniques and meditation can help people with anxiety disorders calm themselves and may enhance the effects of therapy. There is preliminary evidence that aerobic exercise may have a calming effect. Since caffeine, certain illicit drugs, and even some over-the-counter cold medications can aggravate the symptoms of anxiety disorders, they should be avoided. Check with your physician or pharmacist before taking any additional medications.

The family is very important in the recovery of a person with an anxiety disorder. Ideally, the family should be supportive but not help perpetuate their loved one’s symptoms. Family members should not trivialize the disorder or demand improvement without treatment. If your family is doing either of these things, you may want to show them this booklet so they can become educated allies and help you succeed in therapy.

If you have any specific question, you can ask the doctors at www.mymedexpert.com