I don't have a bona fide diagnosis...My story...

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 esophageal 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 led 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). Across all the studies are 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 for taking the time to read this.

I am not a doctor, but I think you should use CPAP. I would not, under any circumstances, have any kind of soft palate surgery (UPPP.)

With the help of this message board, I believe you can find or modify a mask to be comfortable enough to sleep in. That will be the key to being able to "do" CPAP...the mask.

Important also will be your conviction that you do have sleep disordered breathing that needs "CPAP."

I think you do. But as I said, I'm no doctor.

I'd forget about the overall AHI from the studies. I'd look at the higher AHI you have when in REM. And the O2 desats. Those things alone would make me never sleep for one moment without "CPAP" regardless of what any doctors said.

SleepingUgly wrote:...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.

Try the RespCare Hybrid full face mask, it does not cover the nose or touch the forehead

Sleeping how do you feel when you sleep with the CPAP? Have you noticed that you feel better when you sleep with it?

Glad to see you figured out how to get the table posted here.

Gerry

Hi, I think you should see a neurologist to sort out for sure what's going on. They are more familiar with some of the things cited in that study and can help you understand them better before you go off trying all kinds of other things (and maybe spending a lot of money you don't have, or would rather use for possibly necessary equipment when you are sure of what's what). If you do have myoclonus and/or narcolepsy Cpap may be called for as part of your therapy, but not necessarily, or not necessarily alone. Once you are sure of things you'll be able to relax and think straight about it all and not feel like a victim - you've already empowered yourself by coming here, it's just a matter of finishing up. Good luck!

I agree with everyone who says to use the CPAP. When I first started doing sleep studies, we did nothing with UARS. Now we have found that UARS can cause just as much sleep problems as hypopneas and obstructive apneas. In fact, as I type this I have a patient on CPAP who has not had much decrease in his oxygen saturations, but had numerous decreases in his flow, causing arousals. I have bumped up his pressure to the point where his air flow is perfect and no more arousals. Keep trying for another sleep study! They should now titrate you based on UARS too.
GOOD LUCK!!

Question for you - are you on any meds that are known to cause RLS symptoms? Seems to me that your reports are showing a lot of limb movements for them to be considered insignificant. I have PLMD, RLS, and OSA. I'm going to venture a guess here - I think you have yet to get an accurate picture of either your breathing issues or your limb movement issues, and that is a common problem when there is more than one contributor to our awakenings. I think you would benefit from another sleep study but not with things as they have been or you may get more of the same. Personally, I think getting established on cpap then having a study to evaluate the limb movements while on cpap could be enlightening. Or you could do it the other way around - treat the limb movements then be tested to see if your sleep disordered breathing is more apparent. That's the order I did it in, just because the movements showed up on tests years before the OSA. I would recommend treating the sleep disordered breathing first as it potentially has more health ramifications. Also, some limb movements resolve with effective cpap treatment, so getting on cpap can give you a more realistic picture of the significance of the movements, if any remain.

Gerryk wrote:Sleeping how do you feel when you sleep with the CPAP? Have you noticed that you feel better when you sleep with it?

I felt variably on the nasal pillows. My sense was that the CPAP was so disruptive to my sleep, that not feeling any worse should be considered compelling evidence of its efficacy! But it seemed my mouth may have been opening. On the full face mask, I thought there was a general trend toward feeling better; unfortunately, after a couple of weeks I got the persistent welt that kept me off of cpap for a couple of weeks. I can't really use the nasal pillows well now, as I'm too stuffy. I'm trying again with the full-face mask, but still haven't gotten to the point where I can wear it without issues.

Glad to see you figured out how to get the table posted here.

All the thanks go to Rested Gal, who provided me with very thorough, specific instructions that I delegated to my technical support staff.

Julie wrote:Hi, I think you should see a neurologist to sort out for sure what's going on. They are more familiar with some of the things cited in that study and can help you understand them better before you go off trying all kinds of other things (and maybe spending a lot of money you don't have, or would rather use for possibly necessary equipment when you are sure of what's what). If you do have myoclonus and/or narcolepsy Cpap may be called for as part of your therapy, but not necessarily, or not necessarily alone. Once you are sure of things you'll be able to relax and think straight about it all and not feel like a victim - you've already empowered yourself by coming here, it's just a matter of finishing up. Good luck!

I have seen several neurologists, and no one has suggested that I may have sleep disordered breathing until the neurologist who put me on CPAP. That's partly why I don't know if she's wrong and that's why no one else has thought of this, or if she is right. By the way, she never said that SDB was necessarily the ONLY factor in my daytime sleepiness. It may be, or it may be that my sleepiness is multifactorial (in which case what are the odds I'll ever figure this out?!). I don't think I have narcolepsy (although one neurologist said I might, despite no sleep attacks, cataplexy, sleep paralysis, etc.), but I may have PLMS/RLS that hasn't been aggressively treated and/or idiopathic CNS hypersomnia.

SleepingUgly,

From your long description, it does sound like you have upper airway resistance syndrome. It's pretty classic. The fact that you sleep on your side/stomach and have narrowed jaws, teeth removed, and chronic fatigue is even more suggestive. Your experiences with CPAP are also not too surprising, since UARS patients have hypersensitive nervous systems. Some people can benefit from CPAP, but most are unable to tolerate it. You can try a few more masks, but the problem is that the presence of the mask itself makes you wake up, more than it helps with the sleep-breathing problem. Most sleep studies only detect apneas and hypopneas (breathing pauses lasting longer than 10 seconds), and some RERAs, but most short obstructions and partial obstructions don't get picked up.

An esophageal manometry is not needed, based on your history. If you look at you nasal cannula tracings, you'll most likely see inspiratory flow limitations, which are strongly correlated with UARS.

The first area to address is your nose. If you have any congestion, you have to deal with it definitively. Many people with UARS also have flimsy nostrils, which cave in during inspiration. Your soft palate may or may not be involved, but your main area of obstruction is your tongue (since you have a small jaw). One alternative way of treating this is to use a mandibular advancement device. By pulling the lower jaw forward, it pulls the tongue base forward. A dentist specializing in sleep disorders can help you with this. I've had some god success using this option, but it doesn't work in some people for the same reason stated above (hypersensitive nervous system).

Surgery is a last resort, but it you go this route, you have to address mainly the tongue, no the palate. There are various ways of dealing with this. You can also undergo jaw enlargement surgery, but that's a long discussion in itself. I explain all these concepts in much more detail in my book, Sleep, Interrupted.

You have an anatomic condition that needs to be treated as such, and not with medications. This is treatable, but not an easy journey. With persistence, you'll get there. Some people with UARS find CPAP or oral devices helpful, but at some point, after exhausting all the these options (including nasal optimization), you need to take it to the next level. Use resources of the excellent people on this forum to thoroughly look at all the options for using CPAP. You can also look into dental devices. Keep an open mind about surgery—what you read about on the internet and what you hear from most doctors is usually inaccurate. Even before looking at CPAP, oral devices and surgery, there are a number of holistic dietary, exercise, and stress reduction issues that also must be addressed.

Good luck.

Ooops, sorry, I think I missed responding to this. I went off meds for my sleep studies, so there shouldn't be any medication-induced limb movements. I think you're right... I just need to figure out how to have another study that won't potentially yield a false negative result.

kteague wrote:Question for you - are you on any meds that are known to cause RLS symptoms? Seems to me that your reports are showing a lot of limb movements for them to be considered insignificant. I have PLMD, RLS, and OSA. I'm going to venture a guess here - I think you have yet to get an accurate picture of either your breathing issues or your limb movement issues, and that is a common problem when there is more than one contributor to our awakenings. I think you would benefit from another sleep study but not with things as they have been or you may get more of the same. Personally, I think getting established on cpap then having a study to evaluate the limb movements while on cpap could be enlightening. Or you could do it the other way around - treat the limb movements then be tested to see if your sleep disordered breathing is more apparent. That's the order I did it in, just because the movements showed up on tests years before the OSA. I would recommend treating the sleep disordered breathing first as it potentially has more health ramifications. Also, some limb movements resolve with effective cpap treatment, so getting on cpap can give you a more realistic picture of the significance of the movements, if any remain.

Thank you very much to everyone who read and replied to my lengthy story! If anyone else has any comments, please feel free to share them with me. Thanks again.

I don't know that anyone is still subscribed to this thread, but if you are, thank you! This is the epilogue to my story:

viewtopic/t52012/I-have-a-bona-fide-dia ... Story.html

At this point in your quest, What is your main complaint, that is, what are you trying to fix or improve?

What is the worst thing about CPAP?

What do your reports from your Auto look like? Is there a link you can post to these reports?

Has your weight fluctuated between these sleep studies?

I think Sypark hit it on the head, people with UARS are very sensitive and may not do well on CPAP (toleration wise). Why...well most people stop breathing for 10 or 20 seconds before their bodies wake them up to breath with a gasp. However people with UARS are so sensitive they never get that far, any little flow limitation dirsturbs them so they often have these low AHI studies with an occasional higher AHI or maybe it only scores while supine or during REM. One thing is sure, you have mild OSA or UARS at least sometimes. We also find people sometimes have leg kicks in response to respiratory disturbance so the PLMs might actually be overlooked very mild hypopneas(too mild to meet scoring criteria). We don't score a PLM in the presence of a respiratory event.

So why the variability night to night? Here's a few reasons...sleep position, head position, nasal congestion, stress, medications, different pillows, different mattress, room temperature, humidity, allergies, alcohol use, illness, variable PLMs, being exhausted before bed, bed partner/family disruption, bed room noise. I could go on and on but one thing is clear...you have mild OSA at least sometimes and you don't do well on CPAP...

Have you had a traditional sleep lab titration?
Have you tried BiPAP?

Both of these have helped people adjust to pap therapy. Why a traditional tiration vs an auto? Well some people don't do well on auto...they don't like it when the machine changes pressure, or they don't like it when it pulses air to check for central apneas...they may not even recognize this is why they wake up. A static pressure is better for some. Also an auto does not titrate for sleep quality but only titrates in response to respiratory events. It also does not take into account arousals...that is, in the sleep lab I can see when I lower the AHI but I raise the arousal index, an auto can't do that. Also I can medically document that CPAP distrubs you and try BiPAP. Many people do better on BiPAP.

Am I saying the sleep lab will cure you? I doubt it, but it might help increase pap compliance. Just an idea.

One more thing...I'm not an big advocate of upper airway surgery as it usually doesn't cure OSA, but I have seen it increase pap complaince. And in it's defense, I have even seen a few people "cured", the greatest success having occured when the OSA was mild and especially when the patient was of normal weight with large tonsils,uvula etc. Something to consider.

Big Daddy, thanks for your thoughts. I think some of your questions are answered on the thread with the link below. I think I'd get too confused if I start replying to things here, as well as there!

viewtopic/t52012/I-have-a-bona-fide-dia ... Story.html

Can we move this discussion over to that thread?