Ongoing difficulty with sleep

[Trinity101]

Hi- I haven't been by lately, but I have been getting quite frustrated. I sleep well with the CPAP, my numbers are good- but I still have trouble getting to sleep at a decent time. I have been working with a sleep doc re: setting a wake time to help reset my internal clock, gradually waking a little earlier, that sort of thing- but most nights I can't sleep before 3, so I have to take a nap sometime during the day then- and when I get up earlier, I can just fall asleep sitting there right after I get up. I was on CPAP for a year as of mid-March, and still useit religiously- but I have NEVER had the kind of wakeup I have been longing for- like, "Wow! i am so refreshed!" like I hear so many people saying. I am slowly losing a little bit of weight- just taking it as it comes- but I just feel like I am sliding backwards sometimes. Has anyone else had a similar experience? I know it is good that I am retired, I could not hold down a job at all like this- in THAT respect, I did better when I wasn't treated- although I know I wasn't resting as well- but 8 hours or so was enough to make me feel rested. Now I feel that I never am-?? Thanks for any comments or help.
~joan

Throughout human history, we have been dependent on machines to survive. Fate, it seems, is not without a sense of irony. - Morpheus, The Matrix

[tony72]

neo was a bad mutha in the matrix!!!!

[tony72]

neo was a bad mutha in the matrix!!!!

[newname]

Hi Joan,
I have been going through the same thing as you. I've been on cpap for almost 4 years. I have even switched from a pulmonologist to a neurologist for my sleep problems and no luck. I'm wondering if I should switch to an ENT or maybe no one can help me wake up refreshed. In the 4 years I've been on cpap, I woke up refreshed after sleeping 9 HOURS only 2 times. I don't no what else to do. I am also retired, but I would like to feel "awake" during the day.
I tried to PM you but it won't work.
I think the problem is that in a sleep lab they aren't getting normal sleep patterns because who can sleep with all that stuff on their face and body? I can't even roll over to get comfortable because of the wires on my legs. Maybe if they could do a sleep study without all the stuff they could get a more accurate reading. I'm thinking a home sleep study would work better, but I don't know how to get one.
Keep in touch and PM me if you can.
Jo

[jabman]

Trinity101,
First I want to commend you sticking with the CPAP (that goes for you newname), I think your heart and mind are in the right place. As i am newer at this then you I don't have any real advice but would like to ask a question or two.
Ok, you say that you go to bed around 3 in the morning? what time do you wake up. I was thinking that maybe you could try to forgo the nap and maybe that would help you go to bed earlier.

I hope you can work this out I really admire your dedication. Maybe a home study is not a bad idea.

[robysue]

I have been working with a sleep doc re: setting a wake time to help reset my internal clock, gradually waking a little earlier, that sort of thing- but most nights I can't sleep before 3, so I have to take a nap sometime during the day then- and when I get up earlier, I can just fall asleep sitting there right after I get up.

Sounds to me like you've got two issues going on at the same time: Adjusting to CPAP and bedtime insomnia possibly caused by adjusting to CPAP.

You may need more work on the bedtime insomnia issue than simply trying to reset your internal clock.

What time do you go to bed? How long do you lie awake in bed before you fall asleep at 3 AM? Once you fall asleep, do you pretty much sleep through the rest of the night?

What time do you turn the tv off? What time do you quit web-browsing? What time to you quit reading? All of these activities may leave you too alert to fall asleep at a more normal bedtime. You may want to avoid them for a couple of hours before your desired bedtime and do something relaxing, but non-stimulating during the two hours just before when you want your bedtime to be.

Have you got a bedtime routine? In other words, are there a set of activities that you do every night just before you go to bed and manage to go to sleep? Are there parts of your routine that wind up making you more alert instead of more sleepy? [For me, washing my face wakes me up, so I have to do that well before I actually plan on going to bed.]

And I'd say it's absolutely critical to avoid taking naps: When you take that nap, you are allowing your body and brain to function that much later that evening, which perpetuates the bedtime insomnia issue. As much as possible, try to avoid all daytime naps. Also on your days off, if you can try to maintain your usual wake-up time and no naps, that will also help you start to feel sleepy at a more appropriate bedtime.

[chunkyfrog]

Naps can totally destroy your sleep schedule.
Have you Googled 'sleep hygiene'?
Just give it a shot.

[navyvet]

Yep, naps mess me up using the cpap. Before cpap I could nap no problem, I did not sleep good at night and the naps would not keep me from falling asleep later on.

With cpap I get great sleep, all that I need. If I nap at all it messes me my cycle and it's harder to fall asleep at night. Try going without a nap, I bet that will make a difference.

[Janknitz]

Before CPAP, I would wake in the middle of the night due to severe apnea in REM sleep, in total panic mode, and be unable to go back to sleep. I learned that going to bed really late (1 or 2 am when I had to wake up by 6:30) got me more sleep than going to bed earlier. But it was pretty disfunctional and I was always so tired!

So my guess is that is why you choose such a late bedtime, and despite XPAP use, something is waking you in your sleep cycle.

I also wonder what your data is showing? You say "numbers are good", but what does that mean? Are you getting good therapy from your machine (leaks under control, AHI consistently well below 5.0)? Are you in CPAP or APAP mode? How do your pressure charts look?

I was having interrupted sleep despite the fact that my numbers looked great (AHI consistently below 1.0, no leaks). When we took a good look at the pressure charts though, it showed I spent a good deal of time with my pressure bumping against the high setting. Just by increasing that, I stopped having the wake up issues and sleep much better.

It might be helpful to have an overnight pulse oximetry reading to see if you really are getting optimal therapy or if something is happening that is just not showing up as an apnic event on your data.

[JohnBFisher]

Trinity101, I feel for you. Getting a decent sleep schedule can be a REAL challenge.

First, I just accept that I am a night owl compared to others. I have always been that way. I would invariably opt for a later start in the day. And I had not problems taking late shift work if needed. But try to get me up at the crack of dawn and I know someone who will be cranky, if awake.

Second, something that does seem to help me is to be certain that I get enough time exposed to the daytime sun (or even clouds). Trying to take a longer walk during the day helps. But just sitting by an uncovered window (shades are drawn back to let daylight into the house) seems to help me regulate my sleep a little more toward normal.

I don't suffer from SAD (Seasonal Affective Disorder). But getting that light during the day seems to help keep my schedule from creeping too far into the night.

But you are right, it is important to feel as if you are rested in the morning. You might want to ask your doctor if Remeron (or the generic of it: mirtazapine) could help. It is an off-label use. What does that mean? Well, Remeron is an anti-depressant. But a known side effect is that it tends to increase sleepiness. So, an off-lable use is to help increase sleep. It seems to increase my time in REM sleep and the amount that I sleep. It tends to lead to very vivid dreams. Vivid but not disturbing.

Another side effect is that it increases appetite. If you can be strong willed about it, it seems to help keep my blood sugar levels lower, helping me shed some weight.

Just some ideas. Here's hoping you find some more restful sleep!

[Trinity101]

First of all, thanks to all who have replied. I am seeing a sleep specialist- and he is the one who suggested the nap- it is no more than 45 min. on the days that I take one. But- if I do not OPT for a nap, I just fall asleep on the sofa or chair- anyway. My apneas are gone- as for the pressure, maybe I could try raising it a notch. When I do sleep, I sleep well, but it just takes forever to get there, and I never sleep more than 3 hours at a time- this has been for more years than I can count. I just wlways have got up at night- just to go to the bathroom, and I don't do more usually. I will have to check my bedtime routine again, although I really have tried to work on it, that was the first thing. I am also a night owl, and worked night shift for 35 years as a nurse. I'm not trying to protest everything here- just saying what I have tried. My doc even had me using the "blue light" for a while when I woke up to increase my light exposure. I am extemely photosensitive and have migraine- all it did was give me excruciating headaches, but I stuck with it for a few weeks just to see- nothing. I could turn off the light and be asleep on the sofa 10 minutes later. I am wondering if my seizure meds are affecting things, but how do I cut down wthout risking a seizure? That is what scares me, don't want to have those starting up again. But, I have been on them for quite a while- maybe I should see my neurologist and try checking THAT? Just thought about that- no one has mentioned it (my docs). I usually try for up to 45 minutes- if I am not asleep by then. I get up. When I do wake up, I usually try to read- I can't just sit there, but I am limiting my time online- maybe I can stop- but it gets pretty boring when you are awake- no excuse, just reality! I will try again and see how I do, and let you all know. Thanks again.
~joan

[robysue]

When I do wake up, I usually try to read- I can't just sit there, but I am limiting my time online- maybe I can stop- but it gets pretty boring when you are awake- no excuse, just reality! I will try again and see how I do, and let you all know. Thanks again.

It's good that you are getting out of bed after 45 minutes of trying to get to sleep and failing. But you might seriously try NOT reading when you get up. The point of getting up out of bed is to do something extremely boring and relaxing so that your brain starts to want to go to sleep.[/i] If you're not doing something boring, the old brain decides that it really is time to be alert and awake in order to do whatever you're doing that's not boring. Have you tried listening to some very soft music in a very dimly lit room when you get out of bed? That's what works for me. With reading, I just stay up reading all night long.

Good luck!