Tired of waiting for CPAP to kick in!

Paul Van Dyk · Post by **Paul Van Dyk** » Mon Apr 18, 2011 10:46 pm

I've been using my CPAP for like 2 months now and my daytime sleepiness has not let up. I'm still a walking zombie. As far as I can tell, everything looks good on my SD card. I'm so frustrated. What's next???? Something needs to change!

Mr Bill · Post by **Mr Bill** » Mon Apr 18, 2011 10:56 pm

Hi, welcome to the forum.
You have a data capable machine. Get a copy of Encore Viewer and post some of the results so those more knowledgeable can evaluate them. Good that you posted your equipment, now choose text view because the pictures are all alike but text lets users viewing your post immediately recognize the equipment. It might also help if you post some info about your sleep study so people know what you are coming from. There are certainly many here using your machine and they will weigh in with comments.

Mr Bill · Post by **Mr Bill** » Mon Apr 18, 2011 11:03 pm

I just checked your other posts. Get an account with photobucket or the like and use that to host posting pictures of your data on the forum. Get some data out there and then ideas will follow...

robysue · Post by **robysue** » Tue Apr 19, 2011 7:21 am

Paul Van Dyk wrote:I've been using my CPAP for like 2 months now and my daytime sleepiness has not let up. I'm still a walking zombie. As far as I can tell, everything looks good on my SD card. I'm so frustrated. What's next???? Something needs to change!

Sounds obvious, but ......

1) Have you let your sleep doctor's office know that there has been NO change in your daytime sleepiness since starting CPAP? (And you are using CPAP every night all night long?)

2) Have you been able to identify any specific problems that are bothering your sleep that may or may not be directly related to the CPAP machine? If so, share that list both with us and with your sleep doctor's office. If not, start trying to figure out whether the CPAP machine itself is causing some sleep fragmentation (waking with mask leaks? rainout problems? air in the stomach? dry mouth problems?) or problems getting comfortable before falling asleep (afraid to move into a more comfortable place for fear a leak will start? feeling tethered by the hose? noise is bothersome?)

3) Is your time in bed looking pretty ragged? What I mean by this is: Are your bedtimes and wake up times all over the place (in a desperate attempt to get enough sleep) or are you getting to bed and waking up at reasonably consistent times? And how is the rest of your sleep hygiene? Good sleep hygiene can make adjusting to sleeping with the mask easier and also shorten the period of time when learning how to sleep with the CPAP is in itself causing some fragmentation of your sleep.

I know how you feel by the way: I felt like something the cat threw up for the better part of four months after starting CPAP even though I had excellent data numbers and was 100% compliant. But the sensory overload of learning to sleep with the CPAP first triggered some severe bedtime insomnia and later on the bedtime insomnia morphed into severe sleep maintenance insomnia. I only started to actually feel better after my insomnia monster was beginning to be tamed.

Paul Van Dyk · Post by **Paul Van Dyk** » Wed Apr 20, 2011 12:51 am

Mr Bill wrote:Hi, welcome to the forum.
You have a data capable machine. Get a copy of Encore Viewer and post some of the results so those more knowledgeable can evaluate them. Good that you posted your equipment, now choose text view because the pictures are all alike but text lets users viewing your post immediately recognize the equipment. It might also help if you post some info about your sleep study so people know what you are coming from. There are certainly many here using your machine and they will weigh in with comments.

Okay, fixed it to text. I already have the Viewer. I think I'd rather just post my sleep study just like I'm going to post my Encore viewer reports. There's so much $hit on there. I don't even know what to post. I'll let everyone look... Thanks.

Paul Van Dyk · Post by **Paul Van Dyk** » Wed Apr 20, 2011 1:39 am

Thanks Robysue. Your posts are always very thorough and in-depth. I really get alot out of them! However, posting answers to every little thing is very time consuming to me! I guess that's great though! Haha Since I'm sleeping 24/7, maybe responding to this post is all I'll be able to get done during my waking hours! LOL

robysue wrote: 1) Have you let your sleep doctor's office know that there has been NO change in your daytime sleepiness since starting CPAP? (And you are using CPAP every night all night long?)

Well I finally got rid of my first sleep doctor. She was terrible. My first appt with my 2nd sleep doc was like 3 weeks ago and he said he didn't want to see me for atleast a month because we have to rule out this CPAP adaptation crap you guys keep talking about. Until that's ruled out, he doesn't want to start working on another possible variable that might be causing this. I still don't buy it. I don't think this thing is gonna get better like 5 painstaking percent every couple weeks. Theoretically, there's either AHI's or there's not. After that's fixed, the only other thing keeping me zombified should be an underlying co-existing diagnosis. I still don't understand how this isn't black or white like that. Neither myself or my sleep doctor believe in this REM rebound/sleep debt thing as what might be still causing this. Since some of you guys are saying you haven't felt better until like 9 months after starting CPAP, I'm beginning to absolutely hate my life. I can't wait another 7 months for this F'n daytime sleepiness to let up. I can't! Next!...

Yes, I use my CPAP everynight, all night long.

robysue wrote: 2) Have you been able to identify any specific problems that are bothering your sleep that may or may not be directly related to the CPAP machine? If so, share that list both with us and with your sleep doctor's office. If not, start trying to figure out whether the CPAP machine itself is causing some sleep fragmentation (waking with mask leaks? rainout problems? air in the stomach? dry mouth problems?) or problems getting comfortable before falling asleep (afraid to move into a more comfortable place for fear a leak will start? feeling tethered by the hose? noise is bothersome?)

What are rainout problems? My mouth is constantly dry from the psych meds I take so that's not a variable that's causing any difference. I don't get air in my stomach. My mask does seem to leak a little. Does even the tiniest little leak make a difference to your AHI's? I do wake up and catch that my mask is leeking but it's like the tinyest little leak possible (from what I can tell)... like barely leaking at all. There's nothing out of place or anything... there's just a tiny microscopic airhole on one side of my nasal pillows that's creating a little noise. When I look at my AHI's for that night on my Encore viewer, there isn't any more than usual. Is that something that's a big problem?
... and yes, I can't move in all my desired comfortable positions because of the hose and mask but that's not preventing me from falling asleep.

robysue wrote: 3) Is your time in bed looking pretty ragged? What I mean by this is: Are your bedtimes and wake up times all over the place (in a desperate attempt to get enough sleep) or are you getting to bed and waking up at reasonably consistent times? And how is the rest of your sleep hygiene? Good sleep hygiene can make adjusting to sleeping with the mask easier and also shorten the period of time when learning how to sleep with the CPAP is in itself causing some fragmentation of your sleep.

Ok, here's my situation... I have a job where I completely make my own schedule. I haven't been scheduling anything in the morning. Ever. I'm left with these 2 options on any given week:

1) Sleep when I'm tired and work when I'm awake, regardless of what time it is or if it's day or night.

2) Try and keep a normal sleep schedule (up by 7am and in bed by 10pm).

I've tried both in the last 2 months and there's pros and cons to each. Option number 2 is prolly the one you guys would pick to help me fix my sleep disorder... but here's the problem: When my alarm goes off at 7 in the morning, sometimes I just can't get outta bed. I just can't. I'm not lazy, I'm just too exhausted. ... and the real kicker is, is that this doesn't matter if I've slept 6 hours (went to bed at 1:00am) or 14 hours (went to bed at 6 pm)! There's absolutely no difference.

Therefore, I finally roll outta bed at like 11:00 am and It's pure damage control with my work and other priorities. I suffer extreme guilt and shame and I have to race through my duties all day. Then, if I try and keep a good sleep schedule with good sleep hygiene, I have to be in bed at 10. This gives me barely any time to complete what I needed to do during the day. Therefore, sometimes I just say F it and work all night to make up for my crappy performance during the day. This week I'm trying to keep on the number 2 option (above) sleep schedule even though I'll barely have any waking hours to get anything done. I'm just having to hide alot of things and lie to my boss.

robysue wrote: I know how you feel by the way: I felt like something the cat threw up for the better part of four months after starting CPAP even though I had excellent data numbers and was 100% compliant. But the sensory overload of learning to sleep with the CPAP first triggered some severe bedtime insomnia and later on the bedtime insomnia morphed into severe sleep maintenance insomnia. I only started to actually feel better after my insomnia monster was beginning to be tamed.

What is bedtime insomnia vs sleep maintenance insomnia?

sleepycarol · Post by **sleepycarol** » Wed Apr 20, 2011 6:11 am

I sometimes feel that maybe (and some will probably not agree) that our bodies have their own clock schedule or rythm. I know I teach school and in the summer am off. I feel more rested and better when I go to bed about 11:00 or so and then wake up about 9:00. I have always needed more sleep than 8 hours, 8 hours of sleep and I feel like crud. But during school I try to go to bed between 9:00 and 9:30 (usually it is closer to 10:00 in reality) and get up at 6:30. I don't feel nearly as rested. Of course how much of it is stress I don't know.

robysue · Post by **robysue** » Wed Apr 20, 2011 6:21 am

Bedtime (or sleep onset) insomnia: The inability to GET to sleep in a timely fashion right after you've gone to bed. My first symptom of bedtime insomnia getting out of control is "dreading bedtime" since once it's on a roll, the tossing and turning and fighting to get to sleep triggers worries about going to bed: "Why bother going to bed NOW if I'm only going to toss and turn until 3:00am?" And so I keep putting going to bed off later and later, and in the past, I'd also consequently sleep in later and later to make up the lost sleep.

Sleep maintenance insomnia: Frequently waking after initially getting to sleep and/or having major problems getting back to sleep once you have awoken from sleep. When my sleep maintenance insomnia is acting up, one of my patterns is that I'll wake up 5--8+ times during a six hour sleep period and each wake up will take 10-15 minutes to get back to sleep. Another pattern is that I'll only wake up once or twice, but I'll be awake for 40--60 minutes or more per wake. Either way, when my sleep maintenance insomnia is acting up, I'll lose over an hour of sleep per night AFTER I first get to sleep.

By the end of my first month on CPAP, I was probably in bed (with the hose on) from roughly 2:30AM or 3:00AM every night and "sleeping" until anywhere between 8:00 and 10:00am most mornings. But with all the struggles at getting to sleep and staying asleep, I'd have to guess that my sleep efficiency: (time asleep/(time in bed) was pretty consistently below .75 (75%). On good nights now, my sleep efficiency is more like .93. I'm still feeling sleep deprived because of the sleep restricted schedule, but I'm now actively working on trying to increase time in bed without that sleep efficiency figure dropping too much.

You write:

My mask does seem to leak a little. Does even the tiniest little leak make a difference to your AHI's? I do wake up and catch that my mask is leeking but it's like the tinyest little leak possible (from what I can tell)... like barely leaking at all. There's nothing out of place or anything... there's just a tiny microscopic airhole on one side of my nasal pillows that's creating a little noise.

Tiny leaks won't affect the AHI at all. But they are clearly waking you up and that could be just enough to be keeping your sleep sufficiently fragmented to continue the daytime exhaustion and daytime sleepiness problems you're dealing with. Does this happen multiple times a night?

... and yes, I can't move in all my desired comfortable positions because of the hose and mask but that's not preventing me from falling asleep.

It may not be preventing you from getting to sleep, but until you find a really comfortable and desirable sleeping position with the hose, you may unconsciously not be relaxing fully in your sleep. I think part of what was happening to me last fall was that I was falling asleep in acceptable, but not desirable positions and my unconscious mind was not allowing me to get all the way into a nice deep NREM sleep for some kind of unconscious fear that I'd pull the hose off or trigger a mask leak; and the feeling of being tethered also made it hard to get fully relaxed even while thinking.

Sheriff Buford · Post by **Sheriff Buford** » Wed Apr 20, 2011 7:27 am

I had the same problem after a few months of starting therapy. My machine was set at a 13 cm. H2O. I bumped it up to a 14, and it made a world of difference. You may consider trying that yourself. Give it time.

Sheriff

dukemom1 · Post by **dukemom1** » Wed Apr 20, 2011 8:09 am

Iim brand new to CPAP (one month in) and had the exact opposite reaction; from the first time I used CPAP I slept all night every night - for the first time in well over a year.

In addition to all the helpful suggestions from the other posters (who are WAY more experienced at this than I am), I have two thoughts: make your sleeping environment as inviting and comfortable as possible and (if possible) double check the type of mask you were fitted with.

There are special pillows made for CPAP users that allow a full range of sleep positions. I use this position and sleep on my side and on my stomach:

http://www.papillow.com/

Additionally, last night I started using an aromatherapy kit for CPAP machines. It was wonderful. I had ordered the starter kit so I could sample many of their fragrances to see which I like best. Having a slight scent of a soothing relaxing scent is a great way to start a night's sleep.

http://www.pur-sleep.com/index.asp

If you haven't found a way to manage your hose so it doesn't get in your way during the night, that makes a big difference too. I hang mine over the headboard of my bed. People without headboards either jury rig their own devices or buy something like this:

http://www.cpapsupplyusa.com/Bro-Gho-Ho ... O-GHO.aspx

There is also a cheaper version where the base fits between the mattress and box spring:

http://www.improvementscatalog.com/prod ... erralID=NA

There is another product I find very helpful - a clip to hold the hose to the sheet at the top of the bed so it doesn't wander on me during the night:

http://www.cpapsupplyusa.com/HCW401-Mar ... ubing.aspx

My only other thought is your mask. Were you given an opportunity to try on many different styles and models of masks, to see which was most comfortable for you? A good DME should allow you to try on as many as necessary to find one that is right for you.

Good luck. I hope you find answers and sleep soon.

Wulfman... · Post by **Wulfman...** » Wed Apr 20, 2011 8:28 am

In skimming this thread.......I didn't see where anybody has asked and I didn't see where you volunteered......what your pressure setting(s) are. Also, what was your prescribed pressure from your doctor. You're showing an APAP in your profile and I'm wondering if that's the problem.......that it may be poorly configured.

Den

SleepingDOG · Post by **SleepingDOG** » Wed Apr 20, 2011 11:41 am

Hang in there! I am a six week user myself. It took me four weeks to get the correct mask that did not leak like a sieve all night. I think the Quattro is my mask, works great for me (started with a Comfort Gel). Tips from other users convinced me. I have noticed a very GRADUAL change in my tiredness. It is slowly getting better. I am very excited by this fact. With the help of the people on this board I think anyone who hangs in there can get this to work. I was ready to give up the first week with a bloody nose bridge and the bone dry mouth but once I got the hang of it it seems to be working. Plus my snout toughened up and it is better now.

You can do it!

archangle · Post by **archangle** » Wed Apr 20, 2011 12:34 pm

Paul Van Dyk wrote:I'm still a walking zombie.

It's a dietary problem. You need to eat more BRAINS!!!!

I had my machine set too low and corrected it recently. I did find myself feeling somewhat better, but I noticed I had gotten into the "tired all the time with no energy" routine. I had gotten into the routine of not doing things because I was tired. It took some mental effort to make myself start doing things that I DID have the energy to do.

Maybe you're not in this phase yet, but do watch out for it.

Bodhi · Post by **Bodhi** » Wed Apr 20, 2011 1:29 pm

lars4life · Post by **lars4life** » Wed Apr 20, 2011 1:34 pm

Tired of waiting for CPAP to kick in!

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