apneas possibly not the problem?

I've been on cpap therapy since Oct. 3rd. Truly, I feel no better in the morning than I did before starting the therapy. I'm well aware from reading on here that perhaps that's too soon to expect a major difference in the way I sleep, and consequently the way I feel in the morning.

I'm pretty sure it has nothing to do with getting used to the mask, as since I switched to a full face early on, I really don't find that it bothers me that much at night. What I have noticed when viewing the data every morning at first didn't make much sense to me. Now, I'm starting to see a trend.

Whenever I have 20 to 30 or so apneas and hypopneas a night, I feel OK in the morning. Not great mind you, as I still get dreadfully sleepy in the afternoon. Many times now when the data shows only a couple of apneas (sometimes none), and perhaps 4 or 5 hypopneas, I feel horrible in the morning. So I'm beginning to think that it's not the apneas that are killing my sleep, it's the fact that for whatever reason I'm not able to get into a deep sleep, let alone STAY in a deep sleep for any amount of time.

Having said that, there have been a couple of evenings that I didn't show many apneas, and felt OK, but again, the vast majority of the time small apnea numbers seem to equate with feeling just terrible in the morning which to me means that I'm not getting into a deep enough sleep to even "trigger" any apneas.

I'm pretty sure the sleep doc will simply want me to increase my pressure some more. It's currently set at 8. And while I'll comply, I'm seriously beginning to think that cpap therapy is/has been an expensive experiment at the most, and with a 40 dollar co pay every time I see the doc, combined with all the money I still owe from the two studies and equipment, I'm wondering if I should cut my loses and move on to... well, I've no idea what I could try next to help me sleep.

Has anyone else experienced similar results?

msr0459 wrote: Whenever I have 20 to 30 or so apneas and hypopneas a night, I feel OK in the morning. Not great mind you, as I still get dreadfully sleepy in the afternoon. Many times now when the data shows only a couple of apneas (sometimes none), and perhaps 4 or 5 hypopneas, I feel horrible in the morning. So I'm beginning to think that it's not the apneas that are killing my sleep, it's the fact that for whatever reason I'm not able to get into a deep sleep, let alone STAY in a deep sleep for any amount of time.

It sounds reasonable as far as it goes. However I wouldn't assume the CPAP is doing nothing. 20-30 apneas a night is not very many - averaged over 6 to 8 hours it gives you an AHI in normal range. It make sense that you would feel OK on those nights. How many did you have during your sleep study? In what sleep stage did they occur?

Your idea that your 0 nights are really nights you're not sleeping well also makes sense. But I'm not sure it makes sense to assume that this is your only problem and that the apnea isn't really an issue also. Couldn't it be both? Something (treatment related or not) that keeps your from sleeping and also apnea that kicks in whenever you finally do sleep? Again, were there any clues in the sleep study?

msr0459 wrote:
I'm pretty sure the sleep doc will simply want me to increase my pressure some more. It's currently set at 8. And while I'll comply, I'm seriously beginning to think that cpap therapy is/has been an expensive experiment at the most, and with a 40 dollar co pay every time I see the doc, combined with all the money I still owe from the two studies and equipment, I'm wondering if I should cut my loses and move on to... well, I've no idea what I could try next to help me sleep.

This is way too premature. A trial at one pressure under one set of sleep conditions is not much of an experiment. I do think that after almost two months you're right to think that it's time to make some changes. Why try some variations? More pressure, different mask, sleeping meds? Go back to your doctor and explain that you're not feeling better most nights.

msr0459 wrote: Whenever I have 20 to 30 or so apneas and hypopneas a night, I feel OK in the morning. Not great mind you, as I still get dreadfully sleepy in the afternoon. Many times now when the data shows only a couple of apneas (sometimes none), and perhaps 4 or 5 hypopneas, I feel horrible in the morning. So I'm beginning to think that it's not the apneas that are killing my sleep, it's the fact that for whatever reason I'm not able to get into a deep sleep, let alone STAY in a deep sleep for any amount of time.

Relevant data is needed here:

What was your AHI on your diagnostic sleep test? And what were the percentages for REM and NREM 3 (or NREM 3/4)?

And how long are you sleeping with the machine on those nights where you have 20-30 apneas and hypopnea? (If it is 6 hours or more of mask time, then your treated AHI < 5 on those nights, which is in the "normal" range.)

And how long are you sleeping with the machine on those nights where you only hae 4 or 5 events, but feel terrible.

Because you are indeed onto something: There is far more to getting a genuinely good night's sleep than just having a near perfect AHI. And for many of us, getting into more REM or more NREM 3 sleep will increase the AHI somewhat. And so it's quite possible that you might feel best with an AHI more in the 3-5 range with plenty of REM and NREM 3 sleep than with an AHI < 1 and too little REM or NREM 3 sleep.

But it's not necessarily correct to jump to the conclusion that the CPAP is doing nothing for you yet: It could be that getting your AHI down from whatever-it-was to the 3--5 range (which seems likely on a night with 20-30 apneas and hypopneas) is all you really needed to get into and maintain the deep sleep you need.

As for how to test your theory: It may sound silly and it does cost some $$, but you could buy yourself a Zeo and use that to test whether there really is a measurable difference in the amount of time you spend in REM and NREM 3 on the nights where you feel ok in the morning and the nights where you feel lousy in the morning.

I'm pretty sure the sleep doc will simply want me to increase my pressure some more. It's currently set at 8. And while I'll comply, I'm seriously beginning to think that cpap therapy is/has been an expensive experiment at the most, and with a 40 dollar co pay every time I see the doc, combined with all the money I still owe from the two studies and equipment, I'm wondering if I should cut my loses and move on to... well, I've no idea what I could try next to help me sleep.

Actually the thing you might want to mention to the doc is whether a switch to APAP might be in order or whether a week or two of auto titration might be in order. It could be that you need a bit more pressure in REM, but you don't need it when you're only in light sleep. And light sleep makes up a significant chunk of sleep time even for those with the most normal of sleep architecture.

Thanks for all of your comments.

I'll post back when I can figure out how to highlight individual responses, so I can respond accordingly. I'm also too exhausted and am about to "try it again", sleep that is.

msr0459 wrote: Truly, I feel no better in the morning than I did before starting the therapy... So I'm beginning to think that it's not the apneas that are killing my sleep, it's the fact that for whatever reason I'm not able to get into a deep sleep, let alone STAY in a deep sleep for any amount of time... Has anyone else experienced similar results?

If I were a betting woman and had the money to bet, my money would be on limb movements. Your theories fit well with my experience with limb movements. I was first diagnosed with Periodic Limb Movement Disorder (PLMD) and it wasn't until my limb movements were somewhat controlled by medication and I was sleeping better that my long suspected sleep apnea fully manifested on a sleep study. Once my sleep apnea was therapeutically treated and not preventing good sleep, the limb movements became much more active, leaving my sleep restless and non restorative. From what I've read, it is not uncommon for a person with both disorders to have my experience with one worsening upon treatment for the other. Because my limb movement severity was affected by things such as certain meds and caffeine, it makes sense to me to see variable patterns from night to night. Apneas and limb movements can be different in their stages of most activity, and could account for a difference in how one might feel in the morning.

Maybe limb movements aren't your issue. If not, hope you enjoyed the read, and do find some solutions for your sleep.

It's important to realize that even if you do have sleep apnea that is doing bad things to your body and mind, you can still have other problems. Even if CPAP doesn't fix what's bothering you, it doesn't mean that apnea isn't slowly and silently killing you.

Get SleepyHead and look at the flow waveforms for your apneas and hyponeas. See how long they last and how severe they are. All apneas are not the same. A 120 second apnea is a lot worse than a 10 second apnea.

Try a slightly higher pressure and see what happens.

It is possible to change your own pressure if you're willing to take the risk.

I agree that your fluctuating AHI correlated with how you feel might be an indicator that you are not getting enough deep sleep on a regular basis.

When you never get into a deep sleep, you are likely to have fewer apneas. So your numbers look good, but you feel lousy. Compare that with those nights when your AHI is higher because you slept deeper, but you feel better overall.

Perhaps the solution lies somewhere in the middle... Figure out what else might be disturbing your sleep or preventing you from sleeping deeply, and then work on that. Once you've got that fixed and you are sleeping deeply, you can evaluate your AHI. It could be that you would need a pressure adjustment at that point to get your AHI lower.

It might be worth another visit to the sleep doctor at this point to explore the possibilities. Perhaps even another sleep study (on CPAP) to find out if there are other problems. The general rule of thumb in sleep medicine seems to be that, if they find apnea, they ignore any other symptoms and treat the apnea. Then, if you still don't get better, they will investigate other causes. But they don't seem to want to diagnose anything else until the apnea is treated.

cowlypso wrote:The general rule of thumb in sleep medicine seems to be that, if they find apnea, they ignore any other symptoms and treat the apnea. Then, if you still don't get better, they will investigate other causes. But they don't seem to want to diagnose anything else until the apnea is treated.

That's a big problem in medicine in general. If you have diabetes, the doctors often will be lazy and simply blame everything on diabetes. Diabetics are just as susceptible to "normal" medical problems as non-diabetics. I had a friend who one doctor labeled as "pre-diabetic" for some reason at one time. He lost weight to help out, and checks out normal now. However every *$#@$& doctor he goes to now simply sees the word "diabetic" and doesn't bother to look for the real problem. Apneacs suffer from similar problems sometimes.

Lazy and greedy doctors look for a cheap and easy buzzword to blame everything on.

It sounds reasonable as far as it goes. However I wouldn't assume the CPAP is doing nothing. 20-30 apneas a night is not very many - averaged over 6 to 8 hours it gives you an AHI in normal range. It make sense that you would feel OK on those nights. How many did you have during your sleep study? In what sleep stage did they occur?

I recall the medical supplier told me after looking at my chart for me, that I had 30 or so hypopneas, and no apneas. I now think that there were no apneas because my sleep during the study was extremely limited. As I recall, I only slept for a total of 280 or so minutes, and only half of that was deep sleep, which didn't last that long each time. I've wondered since the study was done how in world it could be even remotely accurate, as bad as I slept while there. The sleep environment was pathetic, at least for me.

What was your AHI on your diagnostic sleep test? And what were the percentages for REM and NREM 3 (or NREM 3/4)?

I wasn't informed of any of that data on my follow up visit to the sleep doc. I suppose if I would have asked, he would have told me.

And how long are you sleeping with the machine on those nights where you have 20-30 apneas and hypopnea? (If it is 6 hours or more of mask time, then your treated AHI < 5 on those nights, which is in the "normal" range.)

And how long are you sleeping with the machine on those nights where you only have 4 or 5 events, but feel terrible.

Both scenarios I usually always have the mask on at least 6 hours. I started a log for the last couple of weeks, and upon re checking my data, I noticed that on a few of the nights of 20-30 apneas, most would occur within about an hour, or sometimes split between 2 hours, but not consecutively, so it wasn't really spread out over the entire night. So now at this point I guess there's not enough "hard data" to suggest that EVERY time I register more apneas, and consequently a higher AHI, that I feel better in the morning, as in there were a few mornings that I registered a very low AHI (0. and felt OK,.. again not refreshed, just not massively sleepy. I had considered the "ZEO" machine just for more data, but indeed the extra dollars at this point is out of the question.

Actually the thing you might want to mention to the doc is whether a switch to APAP might be in order or whether a week or two of auto titration might be in order. It could be that you need a bit more pressure in REM, but you don't need it when you're only in light sleep. And light sleep makes up a significant chunk of sleep time even for those with the most normal of sleep architecture.

I hadn't considered varying degrees of pressure. I'll definitely bring that up on my next visit.

If I were a betting woman and had the money to bet, my money would be on limb movements. Your theories fit well with my experience with limb movements. I was first diagnosed with Periodic Limb Movement Disorder (PLMD) and it wasn't until my limb movements were somewhat controlled by medication and I was sleeping better that my long suspected sleep apnea fully manifested on a sleep study. Once my sleep apnea was therapeutically treated and not preventing good sleep, the limb movements became much more active, leaving my sleep restless and non restorative. From what I've read, it is not uncommon for a person with both disorders to have my experience with one worsening upon treatment for the other. Because my limb movement severity was affected by things such as certain meds and caffeine, it makes sense to me to see variable patterns from night to night. Apneas and limb movements can be different in their stages of most activity, and could account for a difference in how one might feel in the morning.

Maybe limb movements aren't your issue. If not, hope you enjoyed the read, and do find some solutions for your sleep.

I've never heard of PLMD before. All I can say is that I don't tend to move around that much, at least that's what my wife tells me. Although we sleep separately now due to my "issues" as of the last year or so.

I've never heard of PLMD before. All I can say is that I don't tend to move around that much, at least that's what my wife tells me. Although we sleep separately now due to my "issues" as of the last year or so.

Ok, so limb movements may not be a problem for you. But if most of the time you are sleeping you are not being observed, I wouldn't rule it out yet. Also, for some with PLMD the movements may be of the toes or foot or lower leg, maybe not enough to be real noticable, but could still possibly affect sleep stages. Also, if limb movements manifested after cpap started, maybe she just hasn't seen them.

Not that I want that to be your problem, just want to make sure it doesn't get missed - it wouldn't be the first time.

archangle wrote: That's a big problem in medicine in general. If you have diabetes, the doctors often will be lazy and simply blame everything on diabetes. Diabetics are just as susceptible to "normal" medical problems as non-diabetics. I had a friend who one doctor labeled as "pre-diabetic" for some reason at one time. He lost weight to help out, and checks out normal now. However every *$#@$& doctor he goes to now simply sees the word "diabetic" and doesn't bother to look for the real problem. Apneacs suffer from similar problems sometimes.

Lazy and greedy doctors look for a cheap and easy buzzword to blame everything on.

You would need to rule out apnea as a cause of EDS before diagnosing other sleep disorders, though. I was on CPAP for several months, making sure my AHI was low and mask leaks were good and even trying straight pressure instead of a range. Once we were certain the apnea was well controlled I got a MSLT and dx of narcolepsy, and after talking to doctor more also a circadian disorder.

Agree that this is a huge problem with psychiatric diagnosis, though!! I wasted so many years as a psychiatric patient taking all manner of drugs and various fad therapies and not getting any better, in fact getting worse, until finally I was going to have surgery and asked my general doctor about sleep apnea and anesthesia. I was aware of waking up choking sometimes, but didn't know sleep apnea was so serious, especially since I'd complained to doctors about it in the past and just told to raise the head of my bed. I even complained to the psychiatrists about it and they also blew it off as craziness...this, in the early 2000s! I guess if you're young and thin you don't really fit the OSA profile, but turned out that my sleep apnea is very severe, proved by a sleep study finally.

Once you get a psychiatric dx it colors ALL your future interactions with medical providers. They will nearly always blow off everything that concerns you as being a problem in mind only. I'm so grateful for the sleep doctor who told me I'm not crazy, just got issues with sleep, although he continues to ask me about psych stuff, which is annoying. I continue to have issues with depression and anxiety when I'm sleep deprived, and I have to be very careful to stay on a schedule and get good sleep hygiene and all that, which is so hard to do and I'm often failing at it, but at least I'm away from the psychiatric system and all their stupidity.

Still, even with these sleep disorders finally diagnosed and I'm feeling much better psychologically and I know the depression, anxiety and hallucinations are related to sleep (or lack of it), I STILL have problems with other medical providers over my psych history!! It's very very frustrating. And scary.

Just reporting back in to say that last night, once again, I had a very low AHI (0.6). I went to bed at 9:30, exhausted, and was up at 6:30am. I only showed 4 hypopneas all night long. I was restless a lot during the evening, and again felt VERY sleepy this morning. So once again logically it seems that low AHI's for me mean that I never drifted into, or stayed in any kind of deep sleep during the night. In complete contrast I recall there was one night a while back where I registered I believe 67 apneas, and 40 something hypopneas, and felt like total crap the next day. So it seems that when I only register 20 or 30 apneas I feel the best. I haven't felt "refreshed" however for what seems like forever.

I truly think at this point that cpap therapy, for me, was a waste of money and time. I bet I could do a test and set the machine at the lowest setting and I'd still register the same apneas/hypopneas over time. Moreover, I'm beginning to think that if someone who slept fine were to sleep with my mask on, they'd likely register apneas and hypopneas as well.

Perhaps I'm just jaded. Maybe the cpap is doing "something", I'm just not sure what. At this point I just joke about it. I have a recording studio and I recently made a comment to a friend that I could have spent the 3000 plus dollars on a cool piece of gear, and still feel like crap in the mornings. Then at least I'd have something to show for it! lol (to keep from crying)

Well maybe you have another sleep disorder or just not getting sleep for some other reason. It's not always just about the AHI numbers.