Coping with Cushing's

Spring 2005

The Cushing’s Diet?!?

by Rochelle Thurman

One of my favorite parts of the Cushing’s Newsletter are the success stories. Brave men and women who have weathered the storm and beat Cushing’s share their stories. These stories are often accompanied by a before and after Cushing’s picture. I’ve often wondered about the in-between pictures? What stories would they tell? Would they reveal a common pattern for weight loss? Is there a special trick or diet customized for Cushings survivors? I put this question out to Karen who put out an Email alert to some of our members. “Great!!” I thought. “All I have to do now is to sit back and let the magic Cushing’s elixir be revealed. Why hadn’t I thought about this earlier?” I thought. “Oh, well. I did now. Sit back Rochelle and let the adventure begin”, I told myself. I sat anxiously by my PC awaiting my “meaning of life” moment only to discover that there really is no meaning of life secret related to losing weight. The ingredients of the Cushing elixir consist of three key things: discipline, hard work and self-love.

The responses I received were not the mind-blowing revelations I expected. Instead, they were common sense approaches. Weight Watchers, Atkins, South Beach, exercise, weight training. This could not be!! I wanted the secret Cushing’s handshake!! Instead what I got pretty much was common dieting knowledge and support. So what am I missing here? Is it really that simple? A key difference between Cushing’s and non-Cushing’s dieters is the level of motivation. Most of us were taken hostage and imprisoned by our friend Cushing’s. We never had a history of being overweight. Our history began when she entered our lives. Like a prison, she provides different levels of freedom. You might be put on parole where she sets you free for a moment and then throws you back in the slammer. She may set you free in stages, slowly releasing her grip. And then again, she might free you completely, leaving us to reclaim our lives, completely out of her reach. For some of us, she has held us so long that once freedom finally comes we want to go immediately to the quick fix and address extreme diets. It is highly recommended that we do not pursue quick fix methods but do the gradual common sense diets such as Weight Watchers or simply exercising more and reducing our caloric intake.

While there is no secret handshake for losing weight, there is something common we all need to acknowledge and keep active in our lives: self-love and honor. We are our own heroes and heroes. What we are fighting and how we have triumphed is nothing short of miraculous!! We identified the enemy, looked her in the eye, and kicked her to the curb!! We are living testimonies of courage, strength, and love. Love. I believe with the armor of self-love and a plan (Weight Watchers, Curves, etc), we can be successful in weight loss. Self-love will give you the courage to keep getting up, should you wander from your goal. Self-love will give you the permission to do different; if that is the way you want to go. Self-love gives you the confidence to love yourself today, now, in this moment and not when you become the person you were in a distant past or a not so distant future. Self-love is the secret weapon and I feel that Cushing’s patients should turn up the love to the notch of fierceness!! The people we have become as the result of our experience deserves a fierce self-love, one that will sustain us through any future challenges we may face. Ntozake Shange sums it up very well in her play “for colored girls who have considered suicide when the rainbow is enuf”: “I found god in myself, And I loved her. I loved her fiercely” Be fierce in your love, don’t lose your edge. We have conquered a worthy adversary. Stand tall and recognize: YOU!

I would like to thank everyone who responded to Karen’s alert and my question. I appreciate your guidance and words of support. I have summarized your responses into three key strategies for weight loss:

1. Choose your weapon for success. Choose a dieting strategy that best suits you, your lifestyle and personality. Suggestions I received included: Weight Watchers , Curves, The South Beach Diet, a personal trainer, weight training, walking a dog, exercising 3-4X per week
2. Set your self-love to fierce. Your body has just survived a major shock and now you owe it to yourself to get in the best shape you can. Love always makes the difference. Be proud, be fierce, be you!!
3. Move forward, one step at a time. She released you. Don’t hurt yourself trying to lose weight. Be patient. It has taken years to gain the weight with Cushing’s. It does not come off overnight.

To keep myself on track, I will share my success story with you in the near future. I am still in my “in-between” stage. Thanks again for your support. If you’d like to offer support, or need support, please email me! Maybe all of us can work through this together by group email! I love you all – fiercely!!

Rochelle
rlthurman@verizon.net

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Summer, Fall 2004

Psychiatric Issues of Cushing's Patients

Part 1-Depression

How common are psychiatric problems with Cushing's, and what problems do Cushing's patients have?
In some studies, as many as 90% of Cushing's patients suffer from depression. In part, this is due to actual chemical changes in the brain from high cortisol. The depressing effect of having a serious and impairing illness may also contribute to depression. High cortisol levels also can be experienced by the body as anxiety, and insomnia is extremely common in patients on steroids and with high cortisol states. Elevated, agitated mood, like in mania, can also be seen in a minority of patients, and some actually hallucinate and have psychotic symptoms. Problems with concentration and memory are common and may improve or continue after recovery, depending upon the severity and length of the Cushing's symptoms.

What treatments are there for Cushing's patients' psychiatric problems?
Ultimately, the most important treatment is control of the cortisol level. Thus, surgery or radiation are needed for most patients with Cushing's Disease and Cushing's Syndrome due to adrenal tumors. On a temporary basis, medications, such as ketoconazole, metyrapone, and aminogultethimide, have been used to lower high cortisol levels due to tumors and may be helpful in alieviating some of the psychiatric symptoms associated with the high cortisol state.
Most patients will also use and benefit from standard psychiatric treatments, including psychotherapy and medication. Medications may be helpful for the treatment of depression, anxiety, sleep, energy, and mood swing states. Until cortisol issues are resolved, including both high cortisol states and cortisol withdrawal, results may be less than for patients not ill with Cushing's, and some patients respond differently to medications than they would with normal cortisol levels.

What is the best treatment for depression?
Psychotherapy has proven benefit for depression. All patients with a serious medical illness should consider the use of psychotherapy in coping with their disease. Psychotherapy can help with depressed mood, anxiety, and handling the loss of functioning and strain on relationships which are caused by Cushing's.

All antidepressants achieve about equal rates of response in treating depression. There are slight differences between them which can be significant to the patient. Patients with anxiety do best with an "SSRI" (serotonin type of anti-depressant). Patients most concerned about fatigue can benefit from Wellbutrin (or a combination of an SSRI and Wellbutrin if anxiety is also present).
How long does it take for antidepressants to work?

It is a myth that a patient must wait a month for an antidepressant to work. Most people experience some benefit in 1-2 weeks. If a person hasn't improved at all in 3 weeks, the dose should be increased or the medication changed, according to latest research findings.

Can anti-depressants make someone worse or cause suicide?
Some patients' reports of increased suicidal behavior on anti-depressants have resulted in drug companies' being required to caution all potential consumers about this concern. No actual causal relationship has been proven. What is clear is that the suicide rate in children and adults is lower when depression is treated and that anti-depressants help depression, probably in all age groups, although there is less supporting data for their efficacy in children. Patients with diagnosed or undiagnosed bipolar illness may experience agitation or increased mood swings when treated with antidepressants without concomitant use of mood stabilizers. All patients on psychiatric medication should be monitored periodically with in-person visits with prescribing practitioners as well as phone contacts.

Is there anything that helps loss of libido or sensation caused by some anti-depressants (SSRIs)?
Ginkgo Buloba 120 mg 1 or 2 times a day has demonstrated benefit for a majority of patients. A month's trial is a reasonable time to see some effects. Ginkgo is available over-the-counter in drugstores and healthfood stores. Wellbutrin, the antidepressant, may improve sexual functioning when combined with SSRI antidepressants. Buspar, an anti-anxiety medication, has also been used for this purpose with success in some patients. Viagra and Cyproheptatide (Periactin), a serotonin blocker, may provide some temporary and immediate effect to enhance sensation when taken an hour before sex.

Do antidepressants cause weight gain?
The only antidepressant which never causes weight gain is Wellbutrin. Only a minority of people gain weight with other antidepressants, but certain ones are more likely to cause weight gain, like Remeron, Paxil, and older antidepressants called the "tricyclics", such as Elavil. Some who gain weight catch it early by noticing an increased appetite. Others put on weight gradually over time by a slowing of the metabolism. These people may continue eating the same but gradually find themselves gaining. Some people actually lose weight on antidepressants because they are more motivated to control diet and to exercise and because anti-depressants lower anxiety and can reduce anxiety-driven eating.

Can growth hormone help with depression?
Research on this particular topic is lacking, but, for those people who are shown (by insulin tolerance test) to be growth hormone deficient, replacement (by daily injection) may produce a variety of benefits, including an improvement in energy and overall well-being.

What happens during cortisol withdrawal?

Cushing's patients may experience cortisol withdrawal when surgery successfully removes tumors which increase cortisol. Cortisol withdrawal may occur when a patient is being tapered off of replacement hormones following surgery while awaiting recovery of the hormone system which regulates cortisol. This system, the hypothalamic-pituitary-adrenal axis, may take months or years to recover after removal of a tumor.

People experiencing cortisol withdrawal often feel extremely fatigued and have severe muscle and joint pain. In an extreme case, the body experiences a crisis in which a person has nausea, dizziness, severe fatigue, and may actually be at risk of death. This is a medical emergency and should be treated with immediate higher-dose steroids.

Depression is the most common psychiatric symptom of cortisol withdrawal. It is likely partly chemical and partly a result of a person's extreme difficulty functioning due to the cortisol withdrawal symptoms. These symptoms are thought to occur because the body's tissues have grown used to a higher level of cortisol (such as that brought about by Cushing's tumors) and they go into a reaction state when that level is brought down suddenly by surgery or cortisol-blocking agents, such as ketoconazole. The best treatment is slow taper, but many people going through cortisol withdrawal use psychiatric drugs as well as pain medications for the muscle and joint pain. Steroid hormones (hydrocortisone, prednisone, solucortef) should be stopped only under the guidance of a physician, who can conduct tests to make sure the person is making enough cortisol on their own.

How do you know whether you need psychiatric help?
All seriously medically-ill patients merit psychiatric support. Psychotherapy helps people cope better and function better. Psychiatric medications help with many symptoms which come from medical illnesses like sleep disturbance, depression, fatigue, and anxiety. Cushing's patients should not hesitate to seek counseling or psychiatric care.

Psychotherapy can also help relieve some of the stress on close relationships which Cushing's presents. Psychotherapy offers a place where all sorts of feelings and suffering can be freely shared and relieves the burden from being placed solely on spouses and loved ones.
Where can you get help?

Medical doctors who care for Cushing's patients often have worked with psychiatrists and psychotherapists and may be able to recommend a practitioner. People with HMO insurance plans can contact the mental health providers listed with their insurance and receive care at reduced rates. Almost all teaching hospitals which have medical schools and psychiatry departments have a psychiatric residency clinic where psychiatrists-in-training provide quality care. These doctors are often willing to learn about medical illnesses and are happy to have patients who provide real-life experience with uncommon diseases. Psychiatric residency clinics usually charge on a reduced or sliding-scale rate. They can be reached by calling the Department of Psychiatry at any teaching hospital with a medical school or psychiatric residency program.

What's the best take-home message about mental health and Cushing's?
Appreciate all you have that is good. Seek out the good in all experiences and all around you. Use the opportunity of being ill as a chance for new learning and new experience. Have fun with your life (and your illness) whenever and wherever you can!

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Part 2 - Anxiety, Fatigue and Insomnia

What is the best treatment for anxiety?
High levels of cortisol, whether due to disease or steroid medication, may cause anxiety. Many different categories of medications are available to treat anxiety. Again, the most important treatment is lowering the cortisol level.

Valium (diazepam), Ativan (lorazepam), Xanax (alprazolam), Klonopin clonazepam) , and other benzodiazepine-type drugs offer short-acting relief (several hours' action) with the main side effect of tiredness and potential problems of dependence and withdrawal.

Buspar (buspirone) can be helpful for generalized anxiety and less likely to cause sedation. Buspar does not have the addictive problems of the tranquilizer drugs. Buspar has not demonstrated effectiveness for panic attacks.

Atypical neuroleptics, like Risperdal and Seroquel, used in high doses for the treatment of psychosis can be used in small doses for the treatment of anxiety, agitation, elevated mood states, and sleep.

Neurontin and anti-convulsants may also be helpful for anxiety. Each drug has its own characteristics and potential side effects, and thus close medical followup is indicated.

Can fatigue be treated?
Again, treatment of choice is resolution of the primary cortisol disease. Various agents can help with energy and alertness.

Stimulants, like Ritalin, Concerta, and Adderall can help energy and focus. Patients with hypertension should have adequate blood pressure control before using stimulants and be monitored while on them so that blood pressure medications can be increased if necessary.

Wellbutrin, an antidepressant, has an activating an energizing effect but may increase anxiety or cause insomnia.

Antidepressants may help fatigue in that depression, which goes hand in hand with Cushing's Disease, may contribute to fatigue. All antidepressants are pretty much equal in effectiveness against depression.

Provigil, a drug which is used to improve alertness in sleep disorder patients, may help some forms of fatigue or sleepiness and may soon receive a formal indication for use with medically-ill patients. Provigil has the advantage of not raising blood pressure but may cause insomnia if
taken too late in the day.

Sleep medications may help fatigue by promoting restful sleep.

Exercise is well proven to improve energy levels. Cushing's patients should meet with a physical therapist or personal trainer to design an exercise program which takes into account the muscle-wasting state of Cushing's, weight issues and potential osteoporosis.

Herbal treatments have been tried but not panned out in research studies. Ginkgo Buloba is often sold for energy effects; in fact, there is research that suggests that it is helpful in countering the sexual side effects of the serotonin anti-depressants (SSRIs).

What treatments are there for insomnia with Cushing's?
Insomnia is one of the commonest symptoms in Cushing's. Sleep is disturbed by the excessive cortisol secretion, which causes changes in various areas of the brain involved with alertness, sleep, and the circadian rhythm. It is not uncommon for Cushing's patients to have too much energy at bedtime and then, after a few hours of sleep, to wake up again charged and ready to go. While some may get more done, others find this energy to be nervous, non-productive energy, which contributes to daytime fatigue and brain fogginess.

Many different medications can help promote sleep.

Over-the-counter medications can be helpful, including Benadryl (diphenydramine), the active ingredient in most over-the-counter sleep aids, melatonin, and valerian root. These can usually be combined with other medications and sleeping pills to promote better sleep.

Prescription sleeping pills, include Ambien (zolpidem), Ativan (lorazepam), Klonopin (clonazepam), Restoril (temazepam), and Dalmane (flurazepam). Tolerance may develop (requiring a higher dose over time), and many experience rebound insomnia upon stopping the medication unless it was very gradually tapered. Rebound insomnia is severe sleep difficulty especially the first few nights after stopping a sleep medication.

Certain antidepressants, like Desyrel (trazodone) Remeron (mirtazepine), and the older tricyclic antidepressants, such as Elavil (amitryptiline), Tofranil (imipramine), and Sinequan (doxepin) are extremely sedating and, in fact, are probably more commonly used as sleeping pills than as antidepressants. They have the advantage of not resulting in tolerance (needing more to get an effect over time). The tricyclic antidepressants also can be helpful at reducing chronic pain.

Neuroleptic medications, such as Seroquel (quetiapine), Zyprexa (olanzepine), and Risperdal (risperidone) can be extremely helpful, both for insomnia and daytime anxiety. Like the antidepressants, a person generally responds to a certain dose consistently over time, although dosage can be increased if medical symptoms worsen due to cortisol increases.

Anticonvulsant medications, such as Depakote (valproate), Tegretol (carbamazepine), Neurontin (gabapentin), and Gabitril (tiagabine) may be helpful for sleep, mood stabilization, pain, and anxiety. These can be combined with all of the above for enhanced effects.

Some medications can cause weight gain; this is hard to differentiate at times from weight gain associated with Cushing's, but presumably if treated, Cushing's and thus the use of medication for sleep should be short-term. Once Cushing's is treated, significant weight loss is not uncommon, and people are often able to drop some or all over their psychiatric medications. Medications likely to cause weight gain include Remeron (mirtazepine), Zyprexa (olanzepine), Seroquel (quetiapine), Risperdal (risperidone), and Depakote (valproate). Some people will lose weight once anxiety and depression are controlled, so potential weight gain is not a reason to avoid a trial of medication. Often, a person will know if the timing of an increase in appetite corresponds with the start of a medication and, if so, alternate treatments can be tried.

A good night's sleep is essential for mental health. Treating sleep may not totally relieve daytime anxiety and mood states resulting from high or low cortisol, but it an important building block of well-being.

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Part 3: Concentration and Memory

What can be done to improve concentration and memory problems with Cushing's?
Resolution or control of cortisol issues may help normalize these functions. Treatment of depression may also help. Stimulant medications, like Ritalin, Adderall, Concerta, Metadate, methylphenidate, dextroamphetamine, have demonstrated benefits on concentration, attention, and organization. They may help with memory if memory impairment is affected by loss of concentration.

Caution should be used with patients who have high blood pressure.

Are the memory and concentration impairments caused by Cushing's reversible?
The brain does not function normally in any respect in a high-cortisol state. Research done by Monica Starkman et al at the University of Michigan demonstrated actual decreased brain volume in certain areas of the brain associated with elevated cortisol levels, stress, or both. One area of the brain most affected is the hippocampus, an area critical in memory. Normalization of cortisol levels does produce some reversal of this low-volume state, and some who have had Cushing's find significant improvement of their cognitive function when they are cured.

Unfortunately, many continue to have some degree of difficulty with brain function, even a year or more after successful treatment. It is sometimes difficult to assess the level of loss and recovery in that there are age-related memory deficits which are normally-occurring, and depression due to having serious medical illness can also cause problems with memory and focus.

Are there any treatments for memory loss and concentration?
The first treatment is eliminating the high cortisol levels by treating the cause of Cushing's Syndrome. Improvement in cognitive functioning will likely occur in time.

Stimulant medications, like Ritalin and Adderall, can help with concentration, and through this means sometimes help also with memory, in that a person who focuses longer may have more time for input to the memory areas of the brain. These medications are safe unless a person has heart disease or uncontrolled high blood pressure.

The antidepressant, Wellbutrin, has attention and focusing effects as well as anti-depressant effects, and Cushing's patients may benefit from all of these. Energy level also improves with Wellbutrin, although some patients experience this increase as anxiety, and thus dosage levels must be geared to the best overall effect.

Provigil (modafinil) can be given for fatigue related to medical conditions and may help with alertness, concentration, and overall functioning and is not thought to be problematic for blood pressure or cardiac function.

A variety of herbal and alternative substances have been marketed for concentration problems, though without the level of research documentation which leads to recognition as legitimate treatments.

Are the memory and concentration impairments caused by Cushing’s reversible?
The brain does not function normally in any respect in a high-cortisol state. Research done by Monica Starkman, M.D. et al at the University of Michigan demonstrated actual decreased brain volume in certain areas of the brain associated with elevated cortisol levels, stress, or both. One area of the brain most affected is the hippocampus, an area critical in memory. Normalization of cortisol levels does produce some reversal of this low-volume state, and some who have had Cushing’s find significant improvement of their cognitive function when they are cured. Unfortunately, many continue to have some degree of difficulty with brain function, even a year or more after successful treatment. It is sometimes difficult to assess the level of loss and recovery in that there are age-related memory deficits which are normally-occurring, and depression due to having serious medical illness can also cause problems with memory and focus.

A few helpful hints....
Not all internists, endocrinologists, and family doctors are familiar with the treatment of concentration and memory problems. Certainly it makes sense to accept initial treatment for all symptoms of Cushing’s, including depression, anxiety, insomnia, and concentration problems from one’s treating physicians. Patients should not hesitate to pursue further expertise from psychiatrists if concentration and memory continue to be problematic after trial of antidepressants or anti-anxiety agents, whether effective or not. Even when depression is ongoing, use of focusing agents described above may offer a significant quality-of-life improvement. Cushing’s is a complex illness, and the use of multiple treatments may be just what it takes to achieve quality of life. Go for it!

Editor's Note: Dori Middleman, M.D. is a child and adult psychiatrist in private practice in Merion, PA. Dr. Middleman has experienced Cushing's herself and can be contacted by email at DrDori@AOL.COM or by phone at 610-664-7793.

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Fall, 1995

Coping: What Can I Do About Depression?

by Margaret McClelland, OTR, MA, MFCC

Depression is a very common symptom of Cushing's Syndrome. Depression is a response to chemical changes in our brain that occur when we are overwhelmed by stressors. There are many factors that can contribute to feelings of depression, however, a few of the following items may assist you in coping.

1. Recognize that with Cushing's, your body chemistry is extremely out of balance. The normal checks and balances that allow your body to deal with stress are no longer functioning. Under normal conditions, cortisol provides the important function of helping your body respond to stress. Since your body can no longer deal with stress in the normal ways, you can help yourself by reducing the stress in your life as much as possible. Make an inventory of the stressors and decide over which ones you have no control, some control and total control. Then set your priorities and plan how to lighten your stress load.

2. Part of depression is feeling helpless and hopeless. The above exercise will help empower you to have some control over part of your life. Now you can make a list of the areas of your life in which you do have control to assure yourself that you are in the driver's seat. Explore ways in which you can become more proactive in steering your way through this experience. Some ways include;

a) gaining as much knowledge about your condition as you can. Knowledge is power.

b) Get into contact with others who have Cushing's or other rare diseases. Many of your problems overlap and you can support each other with information and affirmation.

c) It helps to have someone who is willing to hear your complaints without turning off, such as a therapist, clergy person or support group. Be cautious using family and friends for this purpose as they may not be equipped to deal with your anguish.

3. Part of your depression is probably due to grief about the losses you are experiencing. The loss of energy, being able to do all you used to do, changes in your body, changes in relationships due to your condition, are only a few of the losses. The list can go on and on. Recognizing your losses and honoring them as valid can assist you in moving toward the acceptance that is necessary before you can move on.

4. Another way to take care of yourself is to seek out those things that give you pleasure. Even the simplest object of beauty or time with a special person can give you a boost. Surround yourself with sights, sounds and fragrances that please you. Remember that your whole person needs nurturing even when you feel the need to focus on your condition.
5. Above all, be kind and gentle to your-
self!

Editor's Note: Margaret is an Occupational Therapist and Marriage, Family, and Child Counsellor in Livermore, CA. Margaret is a cancer survivor and has run numerous support groups for those dealing with illness and disabilities. You can reach Margaret at margmccl@aol.com.

EXAMPLE OF STEP 2

Stressor	Ways to empower
Physical Symptoms	Don't dwell on it, One day at a time, Learn more about Cushing's
Housework	Have the family help, make lists, hire help?
Can't do fun things	Think of things I can do that are fun. Cut roses, take a bath.
Feel alone	Contact others with Cushing's, find a support group
Dealing with my doctor	Take someone with me

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Spring 1996

Coping: Living With the Lifestyle Changes

by Margaret McClelland, OTR, MA, MFCC

When a long standing condition such as Cushing's occurs, no one realizes the losses involved. We always hope that we will improve, but also fear that we will not. There is often a sudden shift in lifestyle that can be devastating. The challenge is to make this lifestyle tolerable and enjoyable. How can we do that?

1. Live in the moment! Regretting the past and fearing the future only add to your burdens. Try being in the moment. Usually we can tolerate one moment at a time. Create some moments that give you pleasure. Enjoy the moon, the sunset, favorite music, a work of art, pictures of loved ones, a flower. The list can go on with your favorite things. Write them down as a reminder.

2. Be patient with yourself! The chemical changes in your body have probably affected your brain function. There may be memory problems, confusion, and a short attention span. Accept this with understanding and humor. If you can share the problem with others, they will be more likely to understand and help you out. Allow yourself to make mistakes or forget. Experiment with writing reminder notes to discover what may help you.

3. Pace yourself! Your energy level is no doubt lower than it was in the past, so plan accordingly. Do not over schedule yourself. Explain this problem to those who expect you to function at your previous levels. Break your tasks or pleasure activities into small chunks, so that you can experience some completion. Remember it is OK not to meet all your commitments, but make it clear to others in advance that you may not be able to.

4. Change your attitude! Shift your focus from what you cannot do to what you can do. Keep adding to your inventory of things that you can do now. Resurrect some old interests that you have had no time to pursue. Accept the challenge of creating a life within the limits of your condition. Explore activities which are so absorbing that you can forget time and your problems. Share your discoveries with others so that they can try new things. Move from being a victim to being a survivor.

5. Love yourself! Your appearance many change, and your condition may send you on a roller coaster of feelings, but deep inside, you are still the same person that you always were. Trust in your deep inner self that you are able to handle this situation with grace. Treat yourself to special things that make you feel good about you. Above all, be kind and gentle to yourself!!

Editor's Note: Margaret is an Occupational Therapist and Marriage, Family, and Child Counsellor in Livermore, CA. Margaret is a cancer survivor and has run numerous support groups for those dealing with illness and disabilities. You can reach Margaret at margmccl@aol.com.

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Summer, 1996

Coping: The Value of Relaxation and Visualization

by Margaret McClelland, OTR, MA, MFCC
When we read about staying well or healing, we read a lot about relaxation, visualization, and imagery. Book stores and catalogs are full of books and tapes on these topics. The holistic or whole body approach to health always stresses these disciplines.

Question: How can these possibly help my health?

Answer: Our bodies are built to have periods of stress followed by longer periods of relaxation. Our current lifestyles and living with a chronic illness add up to chronic stress, which prevents the body from ever reaching equilibrium. The stress chemicals stack up and inhibit the immune system which thrives on positive attitudes and lack of stress.

Question: Where does one begin?

Answer: The simplest place to begin is with relaxation. We all know what it means, but few of us know how to get there. We start with breathing slowly and deeply into the belly and then exhaling slowly. This simple act can change the way we feel, add oxygen to our system, slow the heart rate and reduce anxiety. Focus on the feeling of the breath as it moves in and out or focus on the movement of the chest and body sensations. You should find the body letting go. You can do this anywhere, anytime and it is a wonderful relaxer when stopped at a red light or stuck in a long line.

Question: What are some other ways to relax?
Answer: Progressive Relaxation developed by Jacobson, involves tightening and loosening the muscles section by section from the toes to the scalp and feeling the release as you let go. Autogenic training begun by Schultz, has you in a very comfortable position as you let yourself feel the heaviness of different parts of the body. These processes help you learn the sensations associated with relaxation so you can reach that state at will. Biofeedback is another way to learn to relax. Relaxation is a prerequisite for the success of visualization.

Question: What is visualization or imagery?
Answer: Images form in the brain as we think or daydream. These imaginings may include visual, auditory or kinesthetic (tactile, smell or taste) forms. When we worry we may have disturbing images which are not healing. By directing our minds to positive, relaxing, or pleasure producing images, our body gets the message that it is safe to relax. This process has been shown to improve immune system response.

Question: How do you start doing a visualization?
Answer: You start by getting into a relaxed state described above. Then close your eyes and take yourself in your mind's eye to a special place in nature where you feel safe and comfortable. Look around this place and notice what you see. Notice the colors and shapes of things around you. Breathe in the aroma of the place. Listen to the sounds. Reach out and touch something. Feel the air on your skin and the ground under your feet. Allow yourself to experience this place through all of your senses. Bask in the good feelings that fill your body. You can use this visualization any time to get the benefits of a mini vacation because your body believes it actually has been in this place. (I check into my beach several times a day!)

Question: What if I get distracted and cannot follow the visualization?
Answer: Distraction is natural. The mind has been described as a naughty monkey. When thoughts interfere, we just pull ourselves back to our purpose. Some find that a tape recording is helpful and dozens are available in book stores or you can make your own. You may find a group in your community where these techniques are taught and most psychotherapists or hypnotherapists can assist you in learning how to visualize. "Letting Go of Stress" is one of many tapes by Emmett Miller, MD, that are very helpful. Martin L. Rossman, MD, and Bernie Siegel, MD, both have books and tapes that are readily available.

Question: How is meditation different?
Answer: In meditation, the goal is to concentrate on an object such as the breath, a visual object or a word so that all other thoughts and sensations go unnoticed. This is a rigorous discipline and it takes years to achieve the "ultimate" peace and calm. We will discuss meditation in a later column.

This is only a brief overview of some practices that have all been shown to improve health. The miraculous body mind connection is well described in Deepak Chopra's books. For more information check your library and book store.

Editor's Note: Margaret is an Occupational Therapist and Marriage, Family, and Child Counselor in Livermore, CA. Margaret is a cancer survivor and has run numerous support groups for those dealing with illness and disabilities. You can reach Margaret at margmccl@aol.com.

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December, 1996

Coping: Meditation

by Margaret McClelland, OTR, MA, MFCC

"Meditation is the art of paying attention, of listening to your heart. Rather than withdrawing from the world, meditation can help you enjoy it more fully, more effectively and more peacefully."

Dean Ornish, M.D.

We hear a lot about the benefits of meditation, but we really have to start experiencing it to appreciate it. There are two types of meditation, concentration practices and mindfulness or awareness practices. The purpose of each is to still the mind. The benefits of each is an inner peace and clarity of thought.

With the concentration style, we focus on a single thing such as our breathing, a mantra (a word or phrase), an object, a sound or a movement. You can experiment with what works best for you. The goal is to block out all the chatter in the mind so if you find the chatter continuing, try a different focus.

With the breath, a focus in many time honored traditions, you sit and just notice the breath as it enters your nostrils, as it moves down into your lungs and as it is released. Notice the sensation of it and movement of the chest as it moves in and out. Some breathe to a count of 4 in, 4 hold, 4 out and 4 hold. You can increase the count as you become more skillful.

In using a mantra, choose a word or phrase that does not have an emotional connotation for you. By repeating this in your head you cut off the chatter and thereby move into a meditative state.

Some people are more visual and do better looking at something such as an orange or a flower. Continue to look at it and draw yourself back to it every time the mind wanders. Look with a 'soft' eye - an unfocused gaze.

For those that are auditory it may help to listen to a repetitive sound such as Gregorian Chant or records of bells. Something fairly monotonous is probably best, although I knew a woman who could only meditate with Elvis Presley!
Some of us are more restless and find it difficult to sit for more that a few minutes. In this case a walking meditation is helpful. One walks very slowly and attends to every aspect of walking: the placement of the heel, the movement of the foot, the shift of balance from one foot to the other, the experience of the ground.

The mindfulness practices involve bringing awareness to the mind or body at any given moment, no matter what you are doing. Instead of emptying the mind of thoughts we are paying attention to the experience we are having now. We notice what we are feeling physically, mentally and emotionally without judgment or reaction.

The beauty of mindfulness is that you can do it anywhere, any time. Any task you do can become a meditation: showering, doing dishes, weeding, washing the car, mowing the lawn, etc. The Vietnamese Buddhist monk, Thich Nhat Hanh has a number of books on mindfulness and applying it in our lives.

I encourage you to try some of these meditations. Start out with a few minutes to discover what works best for you and work up to 20 minutes. Many who meditate only 20 minutes a day find the quality of their work and their lives greatly improved. It all starts with making the choice for a better life.

For more help, check books in the library or bookstores. Some people find a meditation class or a group that meets regularly for meditation helpful in developing their skill.

Editor's Note: Margaret is an Occupational Therapist and Marriage, Family, and Child Counselor in Livermore, CA. Margaret is a cancer survivor and has run numerous support groups for those dealing with illness and disabilities. You can reach Margaret at margmccl@aol.com.

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March, 1997

Coping: Recovery From Cushing's Syndrome: Emotional Aspects

by Giovanni A. Fava, MD

The onset of Cushing's syndrome is often gradual and cumulative. The illness seems to unfold its harmful potential over the course of several months or years. Cushing's syndrome, because of the effects of hypercortisolism on the central nervous system, deeply affects the psychological state and balance of a person and these effects develop insidiously. No other medical disorder is associated with such a high rate of depression as Cushing's syndrome (50-70% of cases).

In Cushing's syndrome, and in general, depression often begins with the patient who retires from usual social activities and, if forced into social situations, seems to be uncomfortable. Work takes longer to complete and is carried out with great difficulties. Indifference sooner or later is replaced by sadness; an overwhelming sense of inner emptiness and despair. Whatever is experienced seems to be painful. Past, present and future take a gloomy shade. Fatigue, sleep difficulties (particularly early morning awakening), and trouble concentrating ensue, often associated with irritability, guilt and anxiety. How a person experiences the pathological process, what it means to him/her and how this meaning influences his or her behavior and interaction with others, are all integral components of disease.

Physicians, however, are inclined to neglect the personal experience of illness and to concentrate their attention toward overtly physical symptoms and objective measurements. If and when Cushing's syndrome is properly diagnosed (for still too many patients, this seems to be an endless process), the diagnosis itself is perceived as "the end of a nightmare" - as a patient of mine stated. The patient then eagerly waits for the expected treatment. Particularly when surgery is involved, an immediate cure and restoration of well being are expected. Even when things turn out well, however, recovery is not immediate and seems to drag on. The patient feels better, much better; but does not feel fine. "I am no longer the one I used to be" is a frequent complaint. "I am disappointed that recovery from the disease is going to take so long,..." a patient wrote in his personal account of Cushing's syndrome. "I am not ready to go back to work, to do the things I used to do" is the next logical step.

Something that is often neglected is that the process of recovery is a long and winding road. There are as many ways of recovering from illness as there are ways of becoming ill. Often, the duration of the process of becoming ill dictates the duration of convalescence. This is a general principle that applies to many illnesses. For instance, chickenpox has a quick onset and rapid recovery in children, whereas it develops insidiously and tends to last longer in adults. Recovery from Cushing's syndrome has a natural course to run (usually more than 6 months), even when everything turned out O.K. (surgery, post-treatment hormonal values, regression of physical signs and symptoms, etc.). The speed with which it happens, however, may depend on several factors.

First, as it has been frequently emphasized in this newsletter, maintenance medication should be properly individualized. Different dosages of glucocorticoid replacement (when indicated) may entail different psychological effects. It is thus crucial to check with one's endocrinologist during the follow-up period.

A second issue applies to many disorders. Avoidance is a big enemy of the recovery process. While not all patients are able to resume work or other activities the same way they did before falling ill, in Italy, it is very unusual for a recovered patient with Cushing's syndrome not to go back to work, if he or she worked before. One should go back to work when told they are able to do so by his/her physician. In some cases, if a patient waits to be ready to return to work, they may never be ready. Even if one isn't able to return to work, one should start doing things again. It will be tough, painful, and frustrating at times. Avoiding situations that induce undue anxiety first relieves the distress, but then results in its further increase and perpetuation. Anticipatory anxiety can be defeated only by regular exposure to the anxiety-provoking situations. Not only is it important to resume work if feasible, but also to gradually go back to all activities one was used to doing. Similarly, depression is fostered by the time spent ruminating about the past, worrying about things to come, and indulging in self-pity.

Third, specialized help may be sought if psychological symptoms (particularly depression) persist, even a few months after surgery. A psychiatrist is the first choice because he/she may decide about the opportunity for short-term drug treatment with antidepressants. Some patients received these drugs before their illness was properly diagnosed. At that time, the drugs did not help, thus patients are skeptical when they are prescribed again. But, the same antidepressant drug which did not work in the presence of hypercortisolemia, may work when cortisol levels are normal. Yet, one should remember that self-therapy (exposure, scheduled activities, reaction to depressive thoughts), is in any event the main form of psychological treatment.

Recovery from Cushing's syndrome has its ebbs and flows. Some days you feel great, and some other days, awful. Some days you feel you will make it, the next day, like you won't. As long as you keep a positive attitude (focusing not on the distance from your established goals, but on the progress you have made), overcome your impatience and are not ashamed of seeking specialized help, if needed, you will make it.

References

Armstrong, A. The Phenomenology of Cushing's Syndrome: One Patient's Account. Henry Ford Hospital Medical Journal, 1991; 39:8-9

Fava, G.A., Sonino, N., Morphy M.: Psychosomatic View of Endocrine Disorders. Psychotherapy and Psychosomatics, 1993; 59: 20-33.

Lipowski, Z.J.: Psychosocial Aspects of Disease. Annals of Internal Medicine, 1969; 71: 1197-1206.

Sonino, N., Fava, G.A., Fallo, F., Boscaro, M.: Psychological Distress and Quality of Life in Endocrine Disease. Psychotherapy and Psychosomatics, 1990; 54: 140-144.

Editors Note: Dr. Fava is a psychiatrist at the University of Bologna, Italy. He has over 15 years of experience in dealing with psychological aspects of Cushing's syndrome. He collaborates with his wife, Nicoletta Sonino, MD, a leading endocrinologist in the medical treatment of hypercortisolism.

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June, 1996

Coping: Answers to Your Questions

by Giovanni A. Fava, MD

Question: My doctors say that I am cured from Cushing's, but I have so many continuing problems such as fatigue and pain. My doctors feel that they have done all they can to help me. Do you have any suggestions as to how to emotionally cope with these continuing problems?

Answer: In many illnesses there is a discrepancy between physicians and patients as to the meaning of cure. If a patient has shown a good response to treatment, physicians tend to focus on the progress that has been made and to underestimate the distance from the expected goal. For the patient, it is just the opposite. Even though they are aware they feel better, they tend to overestimate what is still missing. Fatigue and pain may be two considerable problems and the road to full recovery may appear to be endless. In this situation it is helpful to look back for a moment: How was I doing immediately after surgery? Six months later? Now? One should focus on the progress that has been made, confident that further progress may ensue in due course.

Question: I have so much anger towards my doctors who misdiagnosed me for years. Even now, I feel like they don't take me seriously. I'm also angry that this happened to me. How can I get rid of my anger?

Answer: Cushing's syndrome is not a disease that is easily diagnosed. The reasons are many (it is complex, deceptive, not well known by many physicians, etc.). Unfortunately, a rapid diagnosis seems to be the exception instead of the rule, yet this is difficult to accept. One may start thinking and ruminating on the time, money, and medical consultations that got wasted with increasing anger and resentment. This however leads to nothing. What is important is that the illness was eventually recognized and treated. Medicine is not what is portrayed on T.V. It is more difficult, complex and, at times, frustrating. We do our best, but our best sometimes is not sufficient. When you start ruminating about the past, tell yourself "stop". Go do something, no matter how trivial it may be. This will help get your mind off of what is past.

Question: I have been free from Cushing's for over two years and most of my symptoms have resolved, however, mentally, I am sill not as sharp as I used to be. It is difficult to explain, but I just feel "off", I am more forgetful, and find myself in a room wondering why I came into that room. My math and spelling skills are also substantially less than what they used to be. Is this normal for post-Cushing's, will this improve more over time, and is there anything I can do to help my "brain power" recover?

Answer: Hypercortisolism is likely to affect cognitive functions. Depression particularly impairs concentration. When both are present, as in many cases of Cushing's syndrome, mental functioning can be affected. When cortisol levels go back to normal and mood improves, once again one would expect a rapid return to normality. However, this is generally not the case. There are also patients who report a worsening of their memory, spelling, etc. after cure of Cushing's syndrome. It is important to consider that the mental function that is most frequently affected is concentration, not memory. You do not remember things because you were unable to pay sufficient attention to it. Regaining concentration requires a prolonged effort. If you simply say "I am not the one I used to be" and stop trying, concentration will never come back.

For example, in Italy, male college students who are unable to pass a required number of exams, have to leave college for military service. For one year, they are generally unable to spend any time studying. When they are back to college, they often have trouble studying again. Their concentration skills seem to have deteriorated. These skills come back only after months of struggles and attempts. Yet, these students are physically healthy and nothing detrimental to mental function has happened to their body. In the setting of Cushing's syndrome, such problems are increased. Concentration can come back, and other cognitive functions as well, but you should keep on trying. Further, one should consider that the brain is extremely sensitive to cortisol levels. If the illness has been prolonged, a readjustment may take place, but is likely to take a long time, much longer than the other parts of the body. Regaining mental efficiency requires application and endurance. Time is on your side, but only if you work on it and try to improve your concentration day after day. Simple things that you can do to help include reading, doing puzzles such as picture puzzles, crosswords, and math puzzles. You might also practice memorizing some of your favorite quotations, or other things that you find interesting.

Question: What can family members do to help a person with Cushing's cope with the emotional aspect of the disease?

Answer: In the acute phase of illness, particularly when depression occurs, patients may view themselves, their future and their relationship with others in a very distorted, pessimistic way. They may be irritable, tense, moody and display overwhelming anxiety, helplessness and hopelessness. A patient once told me, "If I do something wrong, I keep on thinking about it. If I do something right, I forget it immediately". Family members may be important in reminding the patient that these feeling are an expression of their illness, hypercortisolism, and should not be considered as coming from the real self. These feelings will fade away with treatment as will other symptoms.

As to the recovery phase, excessive dependency on family members is not beneficial. Patients should be encouraged to seek their autonomy, no matter how hard this can be at the beginning

Question: Can religion or belief in a Higher Power play a role in the recovery and healing process?

Answer: From a purely psychological viewpoint, which is the only one that is pertinent here, if religion or belief in a Higher Power is a source of optimism, hope and conveys a positive, active, attitude, it can help the recovery process. If the patient, however, perceives that he cannot do anything for himself and help can come only from God (and some religions convey this passive attitude), it may also make things worse.

Editors Note: Dr. Fava is a psychiatrist at the University of Bologna, Italy. He has over 15 years of experience in dealing with psychological aspects of Cushing's syndrome. He collaborates with his wife, Nicoletta Sonino, MD, a leading endocrinologist in the medical treatment of hypercortisolism.

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Fall, 1997

Coping: Depression in Cushing's Syndrome: 'Atypical' or Melancholic?

by Lorah Dorn PhD, RN, CPNP & George Chrousos, MD

From the literature and from anecdotal reports, depression is said to be common in patients with Cushing's syndrome (CS). Certainly, patients with CS know this well. Depression may be seen in over 50% of patients in active Cushing's. In this column we will address the following: 1) What is depression? 2) Is depression in CS different from other kinds of depression? 3) Why is depression different in CS? and 4) What can be done about it?

What is depression?

Depression is not just one disease or one syndrome. There are several types of depression. First, someone can have either "depressive symptoms" or a diagnosis of depression. Depressive symptoms include depressed mood, loss of interest or pleasure, change in weight, change in sleep, fatigue, as well as other symptoms. Second, a diagnosis of depression (Major Depressive Disorder, MDD) is usually made by those in the mental health profession, based on criteria outlined by the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). A diagnosis of MDD is made when a specific number of these symptoms occur for at least two weeks or more. In the most strict sense, one could not be diagnosed with MDD if a disease (like CS or hypothyroidism) is "causing" the disorder. Certainly, that doesn't mean that patients with CS are not depressed. We know otherwise from clinical experience and research.

Is depression different in CS?

There are several subtypes of MDD, but we will focus on two that are more relevant to CS. One is melancholic depression, characterized by depressed mood as a feature and loss of pleasure in most activities. There also is weight loss and a decrease in the time one sleeps. The other type is atypical depression, also characterized by depressed mood, but with the ability to react to pleasurable events with a favorable response. Patients with atypical depression show increased fatigue, weight gain, and excessive sleeping; symptoms opposite of those patients with melancholic features. In the general population, melancholic depression is the most prevelent. We conducted a research study on 33 patients consecutively admitted to NIH for treatment of CS, evaluated each of these patients for depression while their CS was active, and at various time points following corrective treatment. Several important points emerged from this research.

As shown in Table 1, the majority (66.7%) of Cushing's patients clearly demonstrated psychiatric symptoms at some time during their illness, while the number of patients with no diagnosis of psychiatric symtoms was much lower (30.3 %). Our research also showed that the most common type of psychiatric disorder in patients with CS is atypical depression. In the 33 patients with active CS in our study, 17 or 51.5% had atypical depression.

Appoximately 17% of these patients also exhibited symptoms of both atypical and melancholic depression, while one patient with CS exhibited only melancholic depression. Another 29.4% of these patients had other diagnoses, such as panic attacks, anxiety, and drug and alcohol abuse.

Why is depression different in CS?

From our research and the synthesis of others, we have surmised that depression represents either over- or under-arousal of the stress system. In a simplistic sense, the stress system includes many neurotransmitters and hormones from the brain, pituitary gland, and adrenal gland that work together to help people respond to physically or psychologically stressful situations. Some of the changes that occur during arousal or activation of the stress system, include changes in CRH (corticotropin releasing hormone). A part of the brain releases CRH, which then acts on the pituitary gland to stimulate ACTH release. In turn, ACTH acts on the adrenal glands to increase cortisol production.

In melancholic depression, the stress system is overactive and CRH is increased. This increase may well bring about some of the symptoms of melancholia. In atypical depression, like in CS, there is under-arousal of the stress system and lower CRH. Due to increased ACTH and cortisol, patients with CS do have lower CRH (measured in spinal fluid). However, there has not been a study that has simultaneously measured CRH and depression in patients with CS. It is also important to remember that while CRH plays a role, depression most likely is not "caused" by just one factor.

What can be done about depression in CS?

No matter what kind of depression a patient with CS has, it should be treated. It is important that the patient be evaluated and followed, from someone in the mental health profession. Helpful therapy may include individual or group therapy, but sometimes antidepressants may also be necessary and should be prescribed by a psychiatrist. The therapist should also maintain close contact with the endocrinologist so he/she understands the disease and treatment from an endocrine perspective. Treating depression in this instance, is a team effort involving the patient and family, the mental health therapist and the endocrinologist. Patients and families should ask questions about the therapy and be informed about what to expect with a medication, and when it should begin working. Sometimes a different anti-depressant will need to be prescribed because the same medication doesn't always work in the same way for everyone. So, patients and families will need to keep the therapist informed of progress, as well.

Editor's note: Lorah D. Dorn, PhD, RN, CPNP is an Assistant Professor of Nursing and Psychiatry at the University of Pittsburgh. Dr. Dorn conducted research on Cushing's syndrome and depression in conjuction with Dr. George Chrousos, MD, who is the Chief of Pediatric Endocrinology at NIH in Bethesda, MD. This research was published in Clinical Endocrinology, Volume 43, pp. 433-442, 1995.

Table 1: Psychiatric diagnoses of 33 Patients with Cushing's Syndrome
	n	%
Diagnosis before Cushing's syndrome	6	18.2
Diagnosis during Cushing's syndrome but prior to admission at NIH	15	45.5
Current diagnosis when admitted at NIH	18	54.6
Total: during Cushing's or at NIH admission	22	66.7
No history of diagnosis	10	30.3

Row n's and percentages represent the number of patients out of 33 at the specified time points. Therefore, the percentage column does not add up to 100.
This table was reproduced with permission from Blackwell Science Ltd.

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Spring, 1998

Coping: Depression after treatment of Cushing's Syndrome

by Lorah Dorn PhD, RN, CPNP & George Chrousos, MD

In the fall issue of the newsletter, we addressed depression in Cushing's syndrome (CS). The focus was on subtypes of depression, how different subtypes might be expressed symptomatically, how they might be biochemically different, and what treatment may be effective for depression in CS. This column will focus on our research findings on the course of depression following the treatment of CS.

Although for patients with Cushing's syndrome, a "cure" can be obtained immediately through surgery, we know that the process of returning to a healthy state takes some time. For example, the return of functioning of the hypothalamic pituitary adrenal (HPA) axis, may take up to a year and patients remain on glucocorticoid replacement until that time. Resuming normal psychologic functioning after correction of hypercortisolism also appears to be a lengthy process. In our longitudinal study of 33 patients with CS, 54.6% met diagnostic criteria for a psychiatric illness before their treatment. The majority of those had atypical depression but there also were a few cases of hypomania, panic anxiety, or drug and alcohol abuse. At 3-months post- treatment, 53.6 % of the 28 returning patients met criteria for a psychiatric illness. Most were diagnosed with major depression (MDD) (32.1%) but some had atypical depression or anxiety disorders. Importantly, three patients reported being suicidal. At 6-monthspost-treatment, there were fewer psychiatric diagnoses (36%). Of the 25 returning, 32% had atypical depression. Three patients met criteria for MDD and one of these reported being suicidal. One year following treatment for CS, 7 (24%) of the 29 returning subjects still met criteria for a psychiatric illness. Again, atypical depression was the most common. One patient continued to report being suicidal. Thus, the general picture of the psychological profile of CS patients after correction of hypercortisolism is one of improvement. Across the year, there was an improvement in moods and feelings by self-report checklists and also a significant decrease in the number of patients with atypical depression. Interestingly, across the study, 4 patients who reported no psychiatric disorders before or during CS, developed a psychiatric condition after treatment for CS and during their recovery phase.

To look for recovery of the HPA axis, an ACTH stimulation test often is done during the convalescence. The ACTH test shows if the axis is returning to its normal state with the goal being discontinuation of glucocorticoid replacement therapy. A normal cortisol response was obtained by 13.6% at 3 months, by 21.7% at 6 months, and by over 50% at 12 months post- treatment. We thought that whether one had a normal cortisol response might be related to better psychological functioning. This, however, was not the case. There was no significant relationship between recovery of the HPA axis by ACTH testing and better psychological functioning. We do think that having more patients in the study may provide more information about this relation.

To look at the relation of recovery of the HPA axis and psychopathology in another way, we asked the following question: Is the actual spontaneous morning cortisol level of the patient related to psychological symptoms? Using standardized checklists, we found that at 3 months post-correction, there was no relation between cortisol level and psychological symptoms. However, at 6 and 12 months, having a lower morning baseline cortisol (before the ACTH stimulation tests) was strongly related to having more psychological symptoms. Also, 6 months and 12 months after correction of hypercortisolism, patients with higher cortisol levels felt more vigorous. It is important to remember that just because there is a relation (correlation) does not mean that cortisol is causing this relation.

Why might psychopathology remain even after correction of hypercortisolism and why might new psychopathology appear? To answer this, we can only speculate. Further research can provide more conclusive evidence. It may be that the CRH neuron is the last part of the axis to recover and CRH, rather than cortisol, may be responsible for mood disturbances. Also, it is too simplistic to think that only one biological factor contributes to a behavior. Most likely it is multiple factors such as several hormone systems acting in concert and factors such as social support or stressful life circumstances.

What can be done about new or continued psychological problems after correction of hypercortisolism? We would reiterate our suggestions from the previous column stressing the importance of being evaluated and followed by someone in the psychological profession. Your therapist and endocrinologist should have continued contact with each other (as well as with you), in order to adjust therapy as necessary. Helpful therapy may include both supportive psychotherapy and appropriate medications. We would like to stress to patients and family members, the importance of recognizing psychological problems in patients with CS, not only before treatment but after correction of hypercortisolism as well. The fact that some of our patients developed new psychological problems such as panic attacks or being suicidal is worrisome, if not identified and monitored.

Further information on this study can be obtained in: Dorn, L.D., Burgess, E., Friedman, T., Dubbert, B., Gold, P.W., & Chrousos, G.P. (1997). The longitudinal course of psychopathology in Cushing syndrome after correction of hypercortisolism. Journal of Clinical Endocrinology and Metabolism, 82:912-919.

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July, 1998

Coping: Cushing's and Friendship

by Anna Maurer

I'm not a psychologist, a psychiatrist or a therapist. I don't have any formal training, and I certainly don't have any experience with being diagnosed with a rare, confusing, absolutely frustrating condition. When my best friend, Mary, told me she was diagnosed with Cushing's, my first thought was "thank goodness - there is an answer!" My second thought was "so, exactly what is Cushing's, ACTH, cortisol etc.?" and we've never looked back. Early on, Mary told me how some Cushing's patients lose their friends because of their illness, retract into themselves and are left without a support network, or a close friend to help them through their ordeals. Mary tells me I really helped her deal with it and that perhaps if I shared how I was a friend, it might help others who know and are friends to Cushing's patients. Some people can't deal with illness, as it reminds them of their own mortality, and Cushing's adds a level of frustration not often seen. It can take a lot of work to put friendship ahead of fear and frustration.

I've known Mary for more than seven years now. Her Cushing's was full blown by the time we met, and I've lived through almost all of her medical problems, except the broken hip that never healed and resulted in a total hip replacement at age 30. She and I "clicked," and we became close friends. So what did I do to help her? Basically, Mary talked, and I listened, as the "healthiest unhealthy" person I know went through the most difficult period of time I have ever seen. I listened during the hyperactivity, the sleepless nights, the excessive spending, the overwhelming work stress, and the stubborn weight that refused to move, despite rigorous diet and exercise. I shared in the frustration when no medical tests revealed why she didn't heal, or couldn't sleep more than two or three hours a night, or explained any of the other symptoms. I listened during the skin graft from a simple cut, and I was there for the lung embolism and the stress fracture that broke her leg. I listened as doctors were unable to diagnose Cushing's, and who thought her condition was something she could control.

And I listened, as Mary told me about Cushing's. I've listened as Mary has gone through the hard times after diagnosis. Pituitary surgery, radiation, finding out the tumor wouldn't die easily, the broken arm, the decision to have her adrenal glands removed, a serious post-op infection that put her back in the hospital, awful medication side effects, the struggle to manually regulate her cortisone levels, pronounced mood swings and the sheer frustration of being unable to clearly see the end of the journey. I've also listened to her fights with her health insurance carrier, and we've both been tempted to physical violence by incompetent labs that lose or mess up tests. But I've also listened as the weight seemed to melt off, as the hyperactivity disappeared, and as sleep took eight, or more, hours. I've listened as everyday there seem to be new treatments discovered and new advances made in understanding Cushing's. So what else did I do?

I also listened and I talked when Mary DIDN'T want to talk about Cushing's. There were days when she, or I, or both of us wanted to forget about this mysterious, maddening, nerve wracking condition for a while. Cushing's is a 24 hr a day condition, but that doesn't mean your interest in anything else, or your ability to talk about non-Cushing's matters atrophies. Being able to carry on long conversations where words like "Cushing's," "doctors," or "the lab lost my 24 hr test again," never appeared, kept us from burning out on talking about Cushing's. We needed to step back from Cushing's and talk about something else, like my tendency towards irrational obsessions, our shared interests in gardening and crocheting, or any topic in the world we tend to wander to. By not always focusing on Cushing's, we are able to handle the times when we needed to.

While I listened, I also sympathized and supported. I let her take the lead when we talked of Cushing's. I didn't pass judgement. I believed what she told me and never believed that it was "all in her head." I didn't minimize the suffering or frustration that Mary was going through. I saved my frustration with this disease and what it was doing to my friend, for the incompetent labs, arrogant doctors and short-sighted HMOs.

I also think that we learned together. We quickly learned that Cushing's is so unknown, that every week the doctors are uncovering something new, so what she tells me one week, may be reversed the next week, and off in another direction the third! That's one thing that has been so difficult about this - just when we expect clear sailing, Mary has an unexpected reaction to a new medication, a new treatment doesn't do what it is supposed to do, OR tests come back with confusing results. At first, we thought Mary was just an unusual Cushing's patient, but since her involvement with CSRF, and from attending the conferences, we found out that unusual is normal! We quickly learned to be prepared for unusual side effects and unanticipated symptoms. I think we both supported each other, as both Mary and I were always so hopeful that the next step would be the solution. With friends, it sometimes happens that one is upbeat when the other is down, and this balancing act has kept our friendship strong.

While sometimes I did advise, I never demanded, and I recognized that I could do little else, but listen. I couldn't fight this battle for her. It was HER body the tumor grew in. It was HER body that suffered under the overproduction of cortisol for 10 years before it was diagnosed. SHE was the one suffering from the side effects of the medication, and would be the one to suffer during the manual regulation of her cortisone levels. I couldn't demand that Mary follow this doctor's advice, or attempt this treatment from that doctor. I wasn't the one who would have to live with the results.

So how have I survived? Cushing's hurts me as well. Make no mistake. I never, ever, EVER, forget that this is Mary's "show." But because I care for Mary, I've been affected by how she's been affected during the course of this disease. It hurts when she would tell me about what side effects the different medications would have, and she would have to decide each week whether she wanted to be nauseous, sleepy, starving, or have her bones hurt so much she cried. It's painful when one of the smartest people I know talks about days when her short term memory is gone and her reasoning skills have flown out the window. It's hard when your best friend talks about having brain surgery or her adrenal glands removed. It's difficult to deal with when she explains her emergency cortisol, and how to use the syringe and medication. It's tough when she talks about severe moods swings that have no purpose, except that they are the result of Cushing's. It is confusing trying to sort out one test or medication from another. I want to help, but there isn't much I can do regarding her treatment, except maybe strangling the incompetent lab technicians that mess up or lose the 24 hr tests! While parts of this have been difficult for me, this experience has made me appreciate Mary's strength, and my own, and that's a wonderful addition to our friendship.

We did find a way for me to help - even when I felt I couldn't. I listened, I supported, I believed, I didn't judge, and I cared enough to stay close. I picked up the phone when Mary didn't.

Anna Maurer

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February, 1999

Living Well With Health Challenges

by Gayle Heiss

THE ISSUES AND FEARS OF ILLNESS
Part of being alive is accepting that things are changing all the time. Being fully alive requires responding flexibly and creatively to the changes. Life's struggles usually come from reacting rigidly and trying to keep things exactly the same. Some of the changes are given a name -"illness" or "disease." When long-standing or chronic, we are faced with one of the greatest challenges to our ability to accept change. The threat of physical vulnerability dramatically brings up two issues we all must deal with at some time in our lives: facing who we are when it is not possible to continue in our familiar roles and our own mortality.

Facing illness, regardless of whether it is chronic or temporary in nature, means finding a way to live one's life so that our life is meaningful to us and to others in spite of the changes. Facing illness also means confronting fears of the unknown and discovering the inner strength to cope with all the "what ifs."

The source of that inner strength comes ultimately from maintaining perspective, especially after tangling with all the worst fears - leaving one with the grateful feeling that whatever I can do has deep meaning and joy. That sense of appreciation is always there to draw upon, no matter what. Another name for it is faith.

When an illness touches us personally, we feel our own vulnerability as we discover the error in our assumption that things always happen to someone else. Within families and in other close relationships, people often make an unspoken and unconscious agreement with each other to guard against exposing their vulnerability. An illness insists that our common vulnerability be recognized. The integrity of the relationship then requires that the original agreement be replaced by a new one that promises mutual acceptance of each other's susceptibilities as well as strengths.

Another change that comes with an illness is that the heart opens in a way it perhaps has never opened before to other people's pain, especially when associated with an illness. This rich connection with others increases even further that perspective that leads one to be so thankful for all there is rather than grieve over what isn't, used to be, or might have been. Ironically, there wells up a feeling of being more, rather than less, fortunate than those who are in good health, but whose hearts are closed and perspective narrow.

RESPONSES TO ILLNESS
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