I have read all your web site information and truly appreciate your time and effort helping people like myself. I was diagnosed with "apnea" last year after 30+ years of unexplained insomnia and fatigue. My original polysomnography showed 1 obstructive apnea, 1 central apnea, 2 hypopneas and 148 respiratory effort-related arousals in 6 hours of sleep, with greatly increased stage 1 and significantly decreased stage 3 and REM sleep, so I think UARS fits. However, the 2 titration studies I had seemed to have been focused on apnea; the CPAP pressure used only reduced my RERAS to 12/hr hour, and the sleep fragmentation was worse than my diagnostic study.
I have used CPAP faithfully for 3 months, trying every setting from 5 to 9 cm. None of these pressures restore my sleep - I am waking every hour or so and feeling as tired as ever. My new doctor says he has never seen UARS that is not helped by a pressure less than 12 cm, and recommended Cognitive Behavior Therapy. He also suggested I may have some issues ("things swept under the rug") that might be responsible for my continued waking despite CPAP use, and suggested counseling.
I actually use about 90% of CBT on a daily basis, and have done for years. I know CBT can reduce time to sleep onset and time awake after sleep onset, increase slow wave sleep somewhat, and decrease awakenings. The research doesn't suggest that it can decrease arousals. I feel like the simplest explanation is that there are still respiratory issues, however mild.
For 30 years, I worked on behavior and attitude solutions for my sleep problem to no avail. It was almost a relief to find out that my problem was medical and would hopefully respond to medical treatment. I understand that there is often not a clear demarcation between medical and behavioral problems and I would be the first one to admit that I have a sensitive nervous system. But I think it's an effect of my sleep issues - not a cause.
You have some great insights about your own condition. If you have UARS, it's not surprising that CPAP isn't helping you. Sometimes it does help, but in most cases, either it doesn't help or can even make things worse. The problem is that by definition, your nervous system is hypersensitive, so wearing a mask with straps on your face can cause you to wake up more often that it actually helps.
I agree with your comments about CBT. It's a great way of addressing all the bad sleep habits and behavioral issues that most Americans have, but it does nothing for your physical and anatomic problems. If you came in to see me, most likely, I would see a very narrowed space behind your tongue, especially when on your back. If your airway improved significantly when you thrust your jaw forward, then this would make you a good candidate for a mandibular advancement device. Overall, in my experience, oral appliances have better track records in treating UARS. But this is totally dependent on the particular dentist's expertise. Not all dentists are the same. There are also various orthodontic techniques that not only move your teeth around, but can change the shape of your jaws as well.
You're right in that sometimes it's hard to know what's medical vs. what's cognitive or behavioral. Ultimately it's a vicious cycle. But my entire sleep-breathing paradigm states that anatomy plays an important role, and if you can change the anatomy definitively (using either CPAP, dental devices or surgery), significant improvements can occur. Hope this helps.
Thanks for your comments, Dr. Park. They will certainly help me over the coming months as I decide what to do about alternatives to CPAP. However, your comment about a "vicious cycle" made me have another perspective about the interaction between body and mind, so to speak: it may take a prolonged period of CPAP use to calm my nervous system, even if the breathing problems are being addressed. Thus, I may be on the road to recovery, and yet not feel much benefit. It does seem that it is a lengthier process to calm one's nervous system than it is for it to be stimulated in the first place. Perhaps more time is the answer. Thank you again for your help and all your work.
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