I've been very impressed reading this and other sleep forums. You people are tenacious , altruistic people who have done everything possible to educate yourselves about your disorder and to persist through lots of obstacles to make your therapy work. Then, even when your issues are resolved, you're still on here giving of your time and energy to help others who are struggling. Same goes for the sleep professionals who frequent these sites. Thank you for all the help you've offered me, and for reading this.

This is my sleep story. I've tried to keep it short, but it isn't easy, as it spans a couple of decades. I hope it won't put you to sleep... ;-)

I am going to try to insert a summary table of the results of my various sleep studies. Disclaimer: I either got the information for the table from the sleep study reports, or I calculated it from the sleep studies and put the information in these types of pointy parentheses: " <...> ". I also put notes of my own in those kind of parentheses. I hope my abbreviations are clear. The last column, labeled "abnormal" is what I understood to be the abnormal ranges for the various indices.

As you can see, I had an AHI of 9.9 on my first sleep study. Although they diagnosed me with Obstructive Sleep Apnea, the doctor told me they don't treat such mild apnea (at least back then). Each sleep study since has yielded differing results. Three months later, I no longer "had" apnea (I also had less REM sleep, and virtually all my respiratory events had been in REM in the first study, but I'm not sure if the amount of REM in the 2nd study was diminished enough to have affected my AHI, and it was not in subsequent studies). In Study 3, I had lots of alpha intrusions and bruxism. I requested the last sleep study to see if I had UARS (I hoped for a diagnosis for which there was treatment that didn't require medication). The first night I had some respiratory events (AHI 3.26), more on my back (Back index 6), and even more in REM (REM index 10). If that had been the night of the espophageal manometry, perhaps I would have a bona fide diagnosis, but it wasn't. The following night was, and that night my AHI was virtually nonexistent at .18. I snored both nights, and the 2nd night I had about 4 UARS events that lead to arousals. As you can see from the table (for those few of you that haven't fallen asleep or lost interest already... ), over the various studies, at times my oxygen saturation was pretty low (88%, 79%, etc.) but no one has been impressed with this in the absence of apnea/UARS (maybe it wasn't prevalent enough, I don't know). The one constant in all the studies is lots of arousals and Periodic Limb Movements, the significance of which is apparently controversial.

And this is how I found myself in the wastepaper basket diagnosis of Idiopathic CNS Hypersomnolence. At times in recent years, I have had some insomnia superimposed on my hypersomnia, but the hypersomnia is the bigger issue.

This past summer, a new sleep doctor suggested that I may in fact have sleep disordered breathing that has not been detected, and she put me on a Auto-CPAP as a trial. The idea was that if CPAP worked, I may want to consider surgery. Unfortunately, she moved away and broke my heart. I'm a very light sleeper and I've had many issues with using CPAP, which I know is common. If I could get a month of sleeping through the night with a full face mask, I may be able to determine whether it's helping my daytime sleepiness, but I can't get enough days of it due to nose bridge issues, which I'm still working on.

BTW, I know this is not particularly relevant, but I am a thin woman, who without CPAP sleeps on my stomach or side, and I had my wisdom teeth out in my very late teens. Although the last sleep study says I snore, I am not bringing down the house with loud snoring. I have a deviated septum and a narrow nose (there definitely may be some nasal obstruction going on, but is that enough to cause UARS?), external valve incompetence, and some allergic rhinitis. According to the ENT, I have tonsils that are fairly large but there is sufficient space. One ENT said that there is posterior movement of the soft palate when I'm supine. No one, including me, wants me to go through a tonsillectomy and lateral pharyngoplasty (aka modified pharyngoplasty) for a disorder that I may not have.

Obviously one of the first questions that comes to mind is why not redo a sleep study? The doctor that I was seeing seemed to have little confidence in the methodology used at the only institution nearby that does the esophageal balloon, which I already had there. Another potentially false negative study is not in my best interests. I would consider going to Stanford for a sleep study, but I am concerned about the variability from sleep study to sleep study and what that would mean for any particular night's results. For that and other reasons, I wouldn't mind continuing my empiric trial of CPAP before resorting to that.

I'm curious whether anyone has any insights into my data, or perhaps has themselves been in a similar position of having no formal sleep disordered breathing diagnosis but were put on CPAP as a trial. I suppose there is a part of me that is looking for confirmation that there may be a sleep disordered breathing diagnosis lurking in my data. As you know, CPAP therapy is a struggle, and it is hard to persist with it without knowing if I even have an SDB diagnosis.

Thank you in advance for taking the time to read this.