Tiredness and Somnolence Despite Initial Treatment
of Obstructive Sleep Apnea Syndrome

In 25 where EDS developed at least a month into treatment, it related to noncompliance in 8, weight increase or inappropriate treatment in 10, or new medical problems in 7.

In the remaining 182, with EDS in the first month of treatment, it related mostly to either inappropriate treatment such as incorrect pressures in 41, or emerging obesity and/or periodic leg movements of sleep or PLMS in 135. These were some younger people with severe obesity, older people of normal weight with severe PLMS, and moderately overweight people with PLMS plus low blood oxygen.

PLMS was treated with medications like Sinemet or Permax, low oxygen with BiPAP; if neither worked, EDS was treated symptomatically with stimulants like dextroamphetamine.

I can relate personally to obesity aggravating OSA, complicating treatment, resulting in mismatch of pressures. This may arise repeatedly if weight keeps changing, up or down, like mine. Management needs prompt, repeated reassessment and readjustment of appropriate pressures. This may be impractical at sleep clinics overtaxed with too many patients, or if third parties object.

Personally, I suspect I have spent much time in treatment at inappropriate pressures due to just such factors as these. If a doctor going, as a patient, to a Harvard hospital faces such obstacles, what about the majority of sleep apnea patients? The problem may be widespread, and the Stanford sample not representative of the situation at large.

I could also relate to emergence of PLMS as a factor which can add to EDS. In my case this went undetected in at least one study. The study was read as normal, because CPAP normalized my breathing, but in fact there were excessive arousals related to PLMS, which I discovered only because I had my own sleep study record to bring to a course I took on sleep medicine.

PLMS don't seem to attract the attention of sleep doctors like apneas. Most current sleep doctors were originally pulmonologists, so their interests may lie elsewhere. They prescribe medications for PLMS, but often don't check effectiveness with follow-up sleep studies as they would with CPAP or after surgery. Maybe PLMS get neglected because they can result from medications like antidepressants, often taken by depressed sleep apneics like myself, but maybe prescribed by other doctors such as psychiatrists. PLMS may flare or disappear related to changes in these medications.

It is tempting to doctors and patients to simplify complexity by narrowing focus to one well-documented disease. But comorbidity, the presence of multiple disorders in one person, is the norm. We all wish life and illness were simpler, but it is dangerous to ignore their real complexities.

Interestingly,the bugaboo of sleep doctors, poor CPAP compliance, said to occur in as many as half the patients prescribed CPAP, didn't emerge as a major factor in these treatment-resistant cases. It's been my experience that severe EDS is a powerful motivator to persist with any treatment that offers hope, whatever the obstacles. But it is also possible that those who don't use CPAP regularly don't come back to the sleep clinic to complain, because they know all too well the reason for their symptoms and the measures that would be recommended.

Even after 6 years I have problems with BiPAP--air leaks, abrasions. But I wouldn't so much as nap without it. After my first painful and unsuccessful surgery for sleep apnea, it took a lot of courage to go back for more. People seriously seeking help for EDS, especially at a world-famou sleep center like Stanford, may be less inclined than average to ignore medical advice.

The authors' comments on the MSLT should caution us against accepting this test as "objectively" measuring EDS, at least in people with sleep apnea. My own one MSLT showed "normally" long sleep latencies--but in fact I could hardly nap at all because I was sick in the throes of caffeine withdrawal required by the test!

The MSLT is most used for diagnosis of narcolepsy and may be less valid in sleep apneics than other tests, like the PVT or Maintenance of Wakefulness Test, not routinely in use.

Descriptive reports like this take second place to experiments in the eyes of physician scientists, but they are informative to patients interested in the experience of others with sleep disorders given the best of treatment.