Feeling worse on xPAP?

I've got an unusual situation and am pretty sure that I know the cause but darned if I can come up with a solution.

Here's the problem, when I sleep through the night and manage to keep my mask on I wake up feeling worse then I do if I don't wear my mask at all.

Now, my reasoning behind it: if I don't wear my mask I have my apnea events, ie I stop breathing, wake up enough to start breathing again, go back to sleep, never remember waking up. What I feel is happening when I do wear the mask is this: I flip around *a lot* during the night. Not RLS, I'm constantly flipping from one side to the other. When I flip I have to come out of sleep enough to move my hose, adjust my pillow so the mask hangs off the side, make sure mask stayed on, fix any leaks, etc. It takes me about five minutes to fall back to sleep. I definately remember waking up 10-15 times in a night so my sleep pattern is obviously getting disrupted.

When I went through my titration I wasn't allowed to flip. Every time I tried the "Voice of God" would admonish me and make me "sleep" on my back. I 've never been able to sleep on my back so my titration was a disaster in my eyes. They thought that it was "good" that I got a total of three hours of sleep that night.

I've tried every trick I can think of to make it possible to flip without getting tangled in my hardware but have run out of ideas. About all I haven't done is the "scrunchie on the headboard" trick because we don't have a headboard. I was thinking about somehow attaching a loop to the wall but I just know that I would rip any mounting out of the wall with my activity.

Ug, not really expecting a solution, just needed to rant.

If you let enough hose through the scrunchie, you won't harm the wall -it just changes the direction of the hose.

Have you tried Craig's DYI cotraption?

Cheap Hose "Stand/Holder"

And if you don't have enough hose free (perhaps because your xPAP is sitting low beside a high bed) to give you enough slack through a wall-mounted scrunchy, you could buy an 8' hose from cpap.com. With enough slack you shouldn't pull the hook (or whatever) out of the wall.

We have a wrought-iron canopy bed and I have the hose attached to the head of the bed, but the bed is moderately high and I have my xPAP very low, almost on the floor. If it wasn't for the short hose on my Swift to give me a bit more length I don't know if the standard 6' hose would be long enough!

BTW, too much slack in the bed can be a problem too. On business trips the machine is higher, sitting on the night table beside me. I end up having nightmares about wrestling snakes or octopusses (octopi?) . (No Lori, I'm not pulling your leg this time.)

WAFlowers wrote:BTW, too much slack in the bed can be a problem too. On business trips the machine is higher, sitting on the night table beside me. I end up having nightmares about wrestling snakes or octopusses (octopi?) . (No Lori, I'm not pulling your leg this time.)

I've got the standard six foot hose but the machine is right next to and pretty level with the bed. It gives me plenty of slack. One of the problems is that when I'm on my side closest to the machine gravity pulls the slack out of the hose so when I turn away from the machine I feel like the dog in the old cartoons that is running and has reached the end of his leash. Just the other night I was in that position with the least slack when my son cried out in the night. I sat up real fast out of reflex and almost hung myself. Funny now but it wasn't at the time... Turning over the other way I've got the opposite problem, too much slack until the slack ends back up on the floor giving me the "snake wrestling" issue.

I've even gone as far as pulling the head of the bed away from the wall and sticking my machine on a small table in the gap so it's more towards the top of my head. The problem there is that as I adjusted my pillow from one side to the other (so the mask hangs off the end) it would eventually work it's way towards the wall and cover my machine.

[quote="ozij"]If you let enough hose through the scrunchie, you won't harm the wall -it just changes the direction of the hose.

Have you tried Craig's DYI cotraption?

Cheap Hose "Stand/Holder"

Snowdog,

I don't know what mask you have, but I don't have a headboard, either, and what I do is, I use two pillows, my regular pre-CPAP king sized pillow and a standard size Tempur Pedic. The hose on the Aura is on the top of the head facing back, like on the Breeze. So what I do is, I take the hose and give myself just enough slack and place it kind of arched behind the back king sized pillow. It gives me enough room to move side to side, or whatever which way, without having to worry all night about moving the hose when I move.

Funny you mentioned this topic of waking up due to your hose as I wrote one this morning about being trained now to wake up every time I change position due to just that, the days of worrying about mask leaks (and where my hose was, etc.). You might want to read it, too viewtopic.php?t=4822. It definitely is starting to take its toll on me, too, I believe. Although I go back to sleep in a second or two, I'm awake enough to know I'm conscious for the few seconds a few times a night. Like I wrote, what I'd give to just sleep through one night, or even six hours. I think I'd have enough energy to last a week.

Hi Lori (if you see this thread again)

I'm using a Flexi-Fit 431 (or "the worst designed medical device in the world" as I've been calling it). The hose is attached by a hard plastic elbow on a swivel (that squeeks like crazy, even with a little vegetable oil on it). I've tried attaching the hose to the the top of my headgear with a velcro strap to make it come out the top but haven't been too successful with it. I have to keep the headgear as tight as possible (painfully tight if you want to know the truth) to avoid constant leaks from all sides and having that little extra velcro rubs wherever I put it. Even with it that tight I still get blowout on the mask whenever I move. I'd get a new mask but insurance won't pay for a new one and I'm afraid to pay $120 plus out of pocket on a "it might be better but you can't return it if it isn't" mask. If anyone from F and P reads this, fire the person that designed this mask, burn down the assembly line that makes it, and start again from scratch. There is nothing good I can say about this mask.

As for pillows, I bought one of the "Target" pillows based on the reviews here. In addition to that I "cuddle" my old regular pillow to my chest to keep from rolling onto my stomach. Yeah, the wife has complained about me cuddling a pillow all night instead of her but I can't just throw her to the other side of the bed when I flip over can I? (trying to keep my sense of humor here).

I did read through your other thread. Sounds like were in the same boat. As for back sleeping, never going to happen. I have bad back and even before that I never could sleep on my back. With my back trouble I'd be stiff for hours in the morning if I forced myself to sleep on my back all night (I have tried).

I wish I had gotten back to you sooner but last week was a week from heck at work. I'm answering now because it's 4am and I gave up trying to sleep anymore tonight. I ripped the mask off around 10pm. Herself woke me up around midnight because of my snoring. I got out of bed at 3am and here I am.

I've been looking into having the Pillar Procedure done. Have to see if insurance covers it. It sounds like something worth trying.





[quote="Sleepless on LI"]Snowdog,

I don't know what mask you have, but I don't have a headboard, either, and what I do is, I use two pillows, my regular pre-CPAP king sized pillow and a standard size Tempur Pedic. The hose on the Aura is on the top of the head facing back, like on the Breeze. So what I do is, I take the hose and give myself just enough slack and place it kind of arched behind the back king sized pillow. It gives me enough room to move side to side, or whatever which way, without having to worry all night about moving the hose when I move.

Funny you mentioned this topic of waking up due to your hose as I wrote one this morning about being trained now to wake up every time I change position due to just that, the days of worrying about mask leaks (and where my hose was, etc.). You might want to read it, too viewtopic.php?t=4822. It definitely is starting to take its toll on me, too, I believe. Although I go back to sleep in a second or two, I'm awake enough to know I'm conscious for the few seconds a few times a night. Like I wrote, what I'd give to just sleep through one night, or even six hours. I think I'd have enough energy to last a week.

Hi, Snowdog (and Reilly).

I went to an ENT back on 7/3, after a month of CPAP, to see what he thought about the Pillar Procedure. This is what he told me. Now, I am sure people have had it done with great success, but his view was, he doesn't do any "new" tecnique for many years because he doesn't want to put his hands in the first until he sees what can happen after it's done five, ten years down the road. He doesn't believe in jumping on any bandwagons in the beginning. He said, yes, it may appear to be helpful in some people, but what is going to be their prognosis?

He has an incredible reputation here on Long Island and our family has used their practice, including my oldest, now 22, having his adenoids out by them when he was 7, for 15 years. I put my faith in this practice. I was a bit disappointed by his answer as I was really hoping this was something that would get me off CPAP therapy but he won't do it yet. That was when he did an extensive ENT exam, including a scope down both sides of the nose, into the throat to have a look around, and told me there is no anatomical reason for me to have OSA. I told him, at that time, I had started an eating right and exercise plan to get rid of an excess of about 25 lbs. and he said that I should come back to him after Labor Day because, although 25 lbs. is not usually the norm to cause OSA in someone, it might have just been enough in my case, being 25 lbs. off would still make me heavier than I was pre-children, and that it could be the cause for my problem. I haven't gone back yet as I haven't lost it all, but I have a feeling he is wrong on that count anyway. It was my oxygen desats that were a problem with a 4 AHI at my sleep study, which included no apnea, just hypops. And I have really grown accustomed, more or less, to sleeping with my machine/mask.

So I wish you luck. I would do all the research I could on the subject, including talking with anyone who's had it done years ago and see how they are doing now. Good luck.

On the Pillar, if I can get insurance to cover it then it sounds like it could be win/win. If it works great, no more cpap. If not then I tried. Worst case, they're supposed to be removable. I don't know anyone personally that has had it, the only other person I know that had OSA lost 100 pounds and it went away. I followed all of RG's links on it and found some more links on Google. From what I read on another discussion group the people that have had it like it. Some still require a mouthpiece if part of their OSA involves their tongue but I don't think I have that particular issue..

It may be because I only got a couple of hours sleep last night but this morning I'm really down on cpap. I was really hoping for more progress after four months of this. My friend that got off cpap is suprised that I have so much trouble with it. He told me he actually misses his machine. But then, he's a back-sleeper and sleeps like a rock.

Snowdog,

I think it's normal to feel "down on CPAP" from time to time. I think, at one point or another, we all miss the freedom of being tired, laying down with careless abandon (no adjusting our masks, etc.) and just going to sleep. But we can't do that anymore and it's not unusual to get the pang of sadness or frustration from time to time.

What we should do at that point is remember how much better we have felt due to being on the therapy and thank God our symtpoms were as a result of something that was treatable. Of course, given the choice, none of us would choose to have OSA and have to use the machine, but we do. Life isn't always fair. But at least what we do have is something that actually allows us to take control of our lives again and greatly improve them.

I hear you loud and clear. If you can get yourself cured, I couldn't be happier for you. Let us all know how things go if you do meet with a doctor to dicuss this option. I will keep my fingers crossed that you can go ahead and have it done and that it will be successful for you.

Well said, Lori- I'm going to print and save your last message!

ProfessorSleep wrote:Well said, Lori- I'm going to print and save your last message!

Thank you, Beth. I can only speak from my own feelings. Glad you agree.