How To Be A Better PatientChallenging Conventional Medical Wisdom

Don't bother reading the abstract, unless you are really  interested in this topic.  I post this not so much to teach people about sleep disorders, but to illustrate some aspects of medical reasoning.  This, I believe, can help people make better use of the health care system.  The take-home message follows the abstract and other blather.

Sleep Breath. 2004 Feb;8(1):15-29.

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Refractory insomnia and sleep disordered breathing: a pilot study.

Krakow B, Melendrez D, Lee SA, Warner TD, Clark JO, Sklar D.

Sleep and Human Health Institute, Albuquerque, New Mexico. bkrakow@sleeptreatment.com

Objective: To assess an uncontrolled, open-label trial of sleep-disordered breathing (SDB) treatment on two different samples of chronic insomnia patients. Method: In Study 1 (Retrospective), data from one diagnostic and one continuous positive airway pressure (CPAP) titration polysomnogram were compiled from 19 chronic insomnia patients with SDB. Objective polysomnogram indicators of sleep and arousal activity and self-reported sleep quality were measured. In Study 2 (Prospective), clinical outcomes were assessed after sequential cognitive-behavioral therapy (CBT) and SDB therapy (CPAP, oral appliances, or bilateral turbinectomy) were provided to 17 chronic insomnia patients with SDB. Repeat measures included the Insomnia Severity Index, Functional Outcomes of Sleep Questionnaire, Pittsburgh Sleep Quality Index, and self-reported insomnia indices and CPAP use. Results: In Study 1, seven objective measures of sleep and arousal demonstrated or approached significant improvement during one night of CPAP titration. Sixteen of 19 patients reported improvement in sleep quality. In Study 2, Insomnia Severity Index, Functional Outcomes of Sleep Questionnaire, and Pittsburgh Sleep Quality Index improved markedly with CBT followed by SDB treatment and achieved an average outcome equivalent to curative status. Improvements were large for each treatment phase; however, of 17 patients, only 8 attained a nonclinical level of insomnia after CBT compared with 15 patients after SDB therapy was added. Self-reported insomnia indices also improved markedly, and self-reported SDB therapy compliance was high. Conclusions: In one small sample of chronic insomnia patients with SDB, objective measures of insomnia, arousal, and sleep improved during one night of CPAP titration. In a second small sample, validated measures of insomnia, sleep quality, and sleep impairment demonstrated clinical cures or near-cures after combined CBT and SDB therapies. These pilot results suggest a potential value in researching the pathophysiological relationships between SDB and chronic insomnia, which may be particularly relevant to patients with refractory insomnia.

Obstructive sleep apnea (OSA) is one of a group of problems known collectively as disorders of excessive somnolence (DOES).  As such, it is common to think of excessive sleepiness as the cardinal feature.  That is that way doctors think about it.  But most patients are not doctors, and they have a different way of looking at it.  As a result, they come in reporting a problem that can lead the doctor off on the wrong path.

Persons with OSA stop breathing many times a night.  This wakes them up, momentarily, often 30 or more times per hour.  Even if they get many hours of sleep, they are always sleepy in the daytime.  Most OSA patients come in reporting that they sleep too much, and are tired all the time despite all that sleep.  This fits with the paradigm of DOES, so when a patient reports these symptoms,  the doctor thinks of common causes of excessive sleepiness.  The correct diagnosis follows quickly.

However, patients with OSA also have highly disrupted sleep, often so much so that they loose any semblance of day-night biological rhythm.  As a result, they may have a hard time getting to sleep at night.  These people also are sleepy during the day, but they conclude that the reason they are sleepy in the daytime is that they have insomnia at night.  This reasoning seems plausible, so it may seem that the correct approach is to give the patient something to help them sleep.   Not only does this not address the problem, but it actually might make it worse.  Many sleeping pills also are muscle relaxants.  Relaxing muscle tone can result in more episodes of apnea.  Thus, the difference in perspective between the doctor and the patient results in the patient getting the wrong treatment. 

If the doctor does not prescribe sleeping pills, he or she might recommend cognitive-behavioral therapy.  For many insomnia patients, CBT is as good as sleeping pills, without any associated risk. 

Complicating the matter is the fact that people really are not very good about observing their own sleep.  Often, they report that it takes them hours to fall asleep, when the spouse (or other "bed partner") knows that they fall asleep in minutes.  To further complicate matters, most people insist that they are reporting their sleep patterns correctly.  It's not that they are lying; they are reporting the truth as they see it. 

However, the doctor may know that the patient is getting more sleep than he or she is reporting.  This happens especially if the patient reports having gotten no sleep at all for several months.  This is impossible.  People who get no sleep at all actually die.  The doctor, knowing that some people abuse sleeping pills, and that the patient must not be telling the truth, assumes that the patient is lying in order to get the pills.  This is an unfortunate situation in which both people are sure that they are right, but both actually are wrong. 

The study by Krakow, et. al. shows that some patients who come in reporting a primary symptom of insomnia actually have sleep apnea.  They take it a step further, and show that treatment of the sleep apnea results in great clinical improvement.   While CBT helps these patients, it does not help them enough so that they can function normally. 

Take Home Message:  The key to avoiding this kind of misunderstanding, misdiagnosis, and mistreatment is to stay focused on observations.  Report to your doctor what you have observed, not what you have inferred or concluded.  This is especially important if one of the things you observe is that you are not functioning well.  Impairment of function always  deserves attention.  If you go in and say: "I have insomnia and that is why I am sleepy all the time," you go down the garden path.  (Which is the phrase doctors use to describe what other people would call a wild goose chase.)  If you go in and say: "I am having trouble doing my job," or "I am awfully tired when I come home from work, and I can't spend time with my family," that keeps the focus on the impairment of function.  Then, if you go down the garden path, you might eventually realize that the impairment is still there.  Then you can go back and say: "I appreciate what you have done for me so far, but I still am not functioning well."  Keep at it until your level of functioning is restored.  It's your body, after all, and you only have one of them.