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Sleep Disorders

Exhausted, misdiagnosed & desperate for help!



I`m a 36-year-old woman who`s had sleep problems since a small child. I have intense vivid dreams all night, grind my teeth and thrash my body most of the night. Around 5 a.m. I start talking. I also lightly scratch my face and neck randomly while sleeping. I`m exhausted after 8-10 hours of sleep. Sometimes when I wake up my body is sore everywhere and I feel like I can`t move. My jaw hurts and my left leg muscles will twitch almost non-stop for days. Since March `07 I`ve been working with a pulmonologist to identify my problem. After one overnight sleep study they diagnosed me with OSA. Since then the doctor has had me on CPAP, a chin strap to keep my mouth shut, BiPap, 2L oxygen, and an expensive mouth guard made by an oral surgeon to keep my lower jaw pulled forward. My OSATS drop down to 80% numerous times nightly. Sometimes lasting as long as 16 minutes. Nothing is working. I`m still exactly where I started in 3-2007. I`m 5`2" & 123#. People are surprised that someone of my size would have OSA. I`m so frustrated and tired of living life in a fog from being tired constantly. I can fall asleep anywhere at anytime within minutes. It affects my job, my memory, my family... everything. I got married in Jan. 08 and we`ve slept in separate bedrooms most of our newlywed time because of this. During my most recent visit to the pulmonologist they finally admitted that the sleep study could`ve shown a "false positive" for OSA and something else is most likely wrong. He`s saying possible nocturnal seizures or multiple sleep disorders combined. Now they want me to start the whole process again with a new sleep specialist at a "university" hospital. What could be the real problem? How can I ensure that I`m getting answers & the right treatment without being strung along for another 2 years? Any advice or help would be appreciated more than you know. Thank you!


It sounds as though you’re having a tough time. Before I get into details, I should make it clear that your case is clearly complicated and without knowing specific details and examining you, I cannot provide with you with a specific answer to your questions. Having said that, I can discuss with you what we know about sleep apnea and place it in the context of the information you provide.

Obstructive sleep apnea (OSA) is a fairly common disorder. Up to 5% of the general population has significant OSA. Although older age, male sex and obesity are risk factors for developing sleep apnea, population studies done in China (where obesity is less prevalent than the Western world) have shown similar rate of sleep apnea indicating that the cause of sleep apnea is more complex than the effect of obesity on the upper airway. An abnormal craniofacial structure (such as a small jaw) or upper airway anatomic issues (such as large tonsils or a deviated nasal septum) may also lead to OSA in non-obese individuals. In short, thin people are not immune to OSA.

In your question, you give a fairly accurate description of many of the associated symptoms of a severe sleep disorder like OSA. Vivid dreams, restless sleep, sleep talking, unusual movements during sleep, and excessive daytime sleepiness despite adequate sleep duration are all significant findings that need further investigation, and are most commonly associated with OSA. Although clenching the teeth during sleep (bruxism) can exist as a separate disorder, in your case it’s possibly related to sleep apnea. Leg twitching that occurs during the period around sleep (restless legs syndrome) should not persist during the day and this may indicate a secondary, non-sleep disorder. Without knowing the details of your sleep study, the history you provide is certainly suggestive (that not exclusive) to a diagnosis of possible OSA.

Other issues, however, may be confounding the picture. The duration and extent of the drop in oxygen saturation during sleep is usually related to the severity of sleep apnea. Of course, other factors may be involved and may cause low oxygen saturations during sleep in concert with or independent of sleep apnea. These conditions are usually underlying cardiac and pulmonary disorders, though they will usually affect the way you breathe and exchange oxygen during wakefulness and during exercise, and should make you feel short of breath during the day. Of course low oxygen during sleep could all be related to sleep apnea, and the best way to know the answer is to review your sleep study.

You seem to have tried variable treatments for sleep apnea and in multiple combinations. Most patients with OSA benefit from positive airway pressure devices such as CPAP and bilevel pressure support (i.e. BiPAP). A few, however, may not tolerate this treatment. If the predisposing condition causing the OSA cannot be fixed (usually via significant weight loss or surgery), then an adjunctive treatment modality should be considered. Adjunctive treatment for sleep apnea may include: mask improvements, oxygen, medications, oral appliances (which you apparently have tried) and surgery of the upper airway. Multiple surgical procedures exist and the decision regarding what might work for a given individual depends on each individual patient’s anatomy. Surgical options are probably best left to an experienced Ear, Nose, and Throat surgeon.

Failure to respond to a particular treatment of sleep apnea can be caused by one or more of the following problems. Some of these you can determine by yourself and others need the help of a Sleep Specialist:

- Extremely severe disease where the usual treatment is not found to be effective

- Poor compliance with treatment, whether conscious or inadvertent (such as poor mask fit)

- Faulty treatment device (machine) or medication

- Sleep on the test night is not representative of usual sleep at home

- Variable use of mediations and substances that affect sleep on home and on sleep study

- A change in the sleep disorder or a change in a predisposing condition

- Inaccurate diagnosis by the Sleep Specialist or by the sleep study

- An undiagnosed second sleep disorder such as sleep related seizures or narcolepsy

As your case is clearly a complex one and additional factors will need to be considered, it is reasonable to see a Sleep Specialist who has expertise in the management of difficult sleep apnea cases. Retesting may be part of the evaluation process, so you should keep an open mind to this. As the field of Sleep Medicine is still evolving, Sleep Specialists are generally best trained to deal with these cases such as yours. Therefore, do not despair. A dedicated sleep center with Sleep Specialists and a controlled sleep lab environment is probably your best bet to get your sleep problem accurately diagnosed and corrected. The American Academy of Sleep Medicine website contains a list of Sleep Centers across the country so you can locate one near you.

Good luck and I wish you restful sleep.

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Response by:

Ziad  Shaman, MD Ziad Shaman, MD
Assistant Professor of Medicine
School of Medicine
Case Western Reserve University