mask-triggered insomnia problems

[robysue]

Only been using the CPAP for five days now.

I'm having some very severe problems with insomnia triggered by problems with putting the mask on and getting comfortable in bed. Once I finally get to sleep, I seem to be ok---at least in the senses of

(1) AHI numbers seem decent---they range from 0.3 to 1.0 for the five nights I've used the CPAP.
(2) I don't pull the mask off after I finally get to sleep
(3) When I wake up later in the night, I don't need to spend much time either rearranging the hose or the mask to get comfortable and I don't have too much trouble getting back to sleep.

But it's taking me 2 hours (or more) to fall asleep with the mask on every night. The earliest I've been able to actually get soundly asleep is something like 2:30 or 3:00 AM. The quality of my sleep is not very good either. Most nights I don't feel like I'm dreaming, and I can usually tell when I've gone into REM sleep even when I don't remember my dreaming. The nights I do feel like I've gotten into REM, the dreams have been disturbing and weird. [I've posted about my dream of being a force-fed goose with air being forced into my lungs in order to fatten me up for foie gras.] I also have not felt rested when I wake up; every morning so far, I've woken up feeling stressed out and have had a pretty bad tension headache as well.

My bedtime problems are:

Hose problems and exhaust flow problems: Every night so far my main problem is finding a comfortable position for the hose. And the hose really restricts my freedom to roll over from side to side and move around in the bed. I can't snuggle into my pillows with the hose. I can't get my head under the covers with my hose. I can't snuggle into my hubby with my hose. The exhaust flow problems are related to the hose problems. Whenever I'm almost happy with the position of the hose, within a few minutes, I find that the exhaust flow with that hose placement isn't working: It's either blowing on me or it's bouncing off my cover or bed pillows and hitting me in the face or its making a loud racket. These two problems are driving me insane. After fighting with the hose and exhaust flow for an hour or two, I'll finally drift off into sleep in a position that is only marginally comfortable. Hence I've woken up with a headache and a neck ache every morning so far.

Mask problems: On nights 3 and 5 I have had really bad problems getting the mask to not shift around. I'm using a Swift FX and I think the problem with fitting the mask are connected to the back (non-silicone) strap being to long for my head even though the two velcro ends are touching each other. This causes that strap to slide all the way down onto my neck. Meanwhile, the silicone strap keeps getting seriously tangled in my hair. All in all, the mask is preventing me from being able to get my hair into a comfortable position. The mask either pins my hair to my head or pulls on it. My hair is shoulder length, but quite curly and sort of thick. I've tried putting it into a pony-tail and putting the pony between the straps in back, but that pulls my hair way to high up off my neck for me to be comfortable. Also my neck doesn't particularly like sleeping with my hair in a pony tail.

Mask leak problems: This problem only happened last night, but it was super annoying. I fought with the mask for about 45 minutes trying to get the leak problems solved last night. At around 2:00 AM, hubby asked me what was different between night 4 and last night. Only thing I could think of was that on night 4 my hair was wet when I went to bed at 3:30. So we got up at 2:00 and took a shower together. After the shower it still took some work to get the mask leaks down to an acceptable rate in the sense of what my face was saying about the leaks. No surprise that the leak rate for last night was much higher than it had been on the previous 4 nights. The S9's LCD said the leak rate was 14 L/min which is about twice as high as it's been on the other nights. Again, I think the problem was being cause or at least aggrevated by the back, non-silicone strap being too long for my head. I could get the pillows to seat rather nicely by taking up some of the slack in that strap with my hand. But soon as I let go, the leaks started again. Tightening and loosening the top head silicone head strap didn't seem to help the leak problem since that adjustment was pulling the nasal pillows in the wrong direction. Eventually I had my husband help me duck tape the back strap into a tighter position. But the strap still kept slipping off the back of my head. I think we may have over tightened that strap a bit. At any rate, I finally had to pull the top adjustment a bit tighter than I really wanted it to be because it was pulling the nasal pillows too tight against/into my nostrils, but the next looser top adjustment was allowing the nasal pillows to fall off my nostrils with every slight body movement. No surprise my nose is sore today.

The mask problems on nights 3 and 5 have been bad enough that I'm planning on visiting the DME today to ask for advice and possibly swap the mask out for a different one.

But my real problem is that as much fiddling as I'm needing to do with the hose (and the mask) every night, my brain has started to associate Put mask on with Struggle to get comfortable and WAKE UP in order to seriously think about where else I can try to put the bed pillows and covers so that I can get comfortable enough to then try to sleep. The struggle to get to sleep every night is exhausting!

[robysue]

Wanting to add just a couple more things;

I'm not having any problems with wearing the mask: When the nasal pillows are where I want them, the mask really doesn't bother me. Likewise, when I wake up with the mask on after finally falling asleep the first time, I have no desire to take the mask off and no problems getting back to sleep within four or five minutes.

What's waking my brain up right at bedtime is that the process of finding a comfortable sleeping position with the hose that does not cause leak problems with the mask requires a significant amount of thinking and this thinking is what's leaving me wide awake and alert right after I get into bed.

[Eeyore_1]

You might find this design more comfortable.

https://www.cpap.com/productpage/resmed ... r-her.html

[robysue]

eyeore,

(love your screen name, by the way) I tried the LT for Her on at the DME. The L-shaped cheek frame parts dug into my cheeks most uncomfortably. I think it's that I've got very high and pronounced cheek bones with rather hollow cheeks. Hence the L-shaped cheek frame parts were no fitting onto my face.

However, I'll look at it again and maybe even try it on again. The Opus 360 is another one that I'm seriously considering since when I was picking out my first mask, that one and the FX were by far the most comfortable on my head at the time.

[Janknitz]

I think two things will help you out, Robysue.

1) Go to the fabric store and find some material to make a shorter back strap. This may involve some sewing to add the velcro. In addition, you should sew some hook back velcro tape onto the inside of the back strap--that will stop the strap from slipping. There's a photo of this tweak on my blog here http://maskarrayed.wordpress.com/2010/0 ... sk-tweaks/ (It shows the fix on the Swift LT for her, but it's the same idea for the FX). This tweak is thanks to UFO 13.

2. Try a hose management system. Take a look at the ones on CPAP.com, but you may want to rig something up in the meantime--there are a few posted on the lab rat page viewtopic.php?t=15104, and my homemade version is posted on my blog here http://maskarrayed.wordpress.com/2010/0 ... your-hose/, see also http://maskarrayed.wordpress.com/2010/07/28/57/

Hanging the hose turns the vent holes on the FX up toward the ceiling and there is less draft on you (it still manages to bounce around and hit you, but less). As far as snuggling with your hubby, look up "spooning"--it's my favorite position anyway

Remember, part of this is just the adjustment you have to go through. It WILL become second nature to slap the mask on and just go to sleep, but you've got to get through this adjustment period first.

[Emilia]

Great suggestions above... I just wanted to say, that on a positive note, your AHI results are PHENOMENAL!! Congratulations! I am using the Swift LT for Her and I have found it to be a very comfortable mask. Sorry you had issues with the frame, but maybe you can figure out a fix.

[robysue]

As far as snuggling with your hubby, look up "spooning"--it's my favorite position anyway

Yes, we spoon. But I actually prefer to spoon around my hubby instead of having him spoon me. He's a whole lot heavier and when he's around me he has a tendency to use me to support his weight and the small of my back hurts in the morning. When I curl around him, he's my big, soft teddy bear/pillow.

I stopped by my DME today. They found a shorter strap for the FX. I was originally given the normal FX strap, but they gave me one of the demo straps on their demo FX for Her. It is a bit shorter and now the velcro straps are not touching any longer. But I'll also see if I can figure out a way to do your velcro suggestion even though I don't sew at all. Don't own a sewing machine and I'm not even sure I could find a hand needle if I wanted to. But maybe fabric glue would work to attache the velcro strap. Which side is it that you sewed to the back strap? The side with hooks? Or the side the hooks latch into? Seems like the hook side would pull your hair out in the morning.

The RT also suggested that I try a different size nasal pillow and sent me home with one. Said to come back if I've got more questions or if these don't help the problems I'm having with fitting my mask at night.

Not sure about the hose management systems. Yes, it solves the exhaust flow problem. But the bigger issue I'm having with the hose is that it restricts my freedom to move around in bed. I'm talking about the physical range of where the hose will reach to, not just the psychological sense of being tied to the machine by the hose. Twice I almost yanked the CPAP off it's table last night trying to get more hose length to move to where I wanted to be in the bed. A hose management system would change the fixed tether point to somewhere above my head, but it would also shorten the radius of where I can move to. I also like to have my forehead snuggled into my pillow (which I've been able to do in my sleep *after* I finally drift off to sleep) or snuggled into my husband's side or armpit (which I'm working on figuring out a way to do with the hose on my face.)

[robysue]

Great suggestions above... I just wanted to say, that on a positive note, your AHI results are PHENOMENAL!!

Yes, my AHI results are the main reason I've not just given up. On my baseline sleep study, my AHI was a bit over 23, with 85% of the events listed as "hypopneas with arousal" and the remaining 15% obstructive apneas. Oh the power of a full data machine to keep you in the "be willing to work hard to make this work" camp.

And yes, there are some great suggestions both on this thread and on others that I've started with questions. I've found that's one of the best things about the forum. When I'm out of ideas about what to do, I can post here and get some new ideas. Yes, some aren't practical for me (but I'm sure they'll work for plenty of other newbies), but there are always plenty of ideas to choose from.

And I really think that when (not if) I manage to figure out the solution to my mask-triggered insomnia at bedtime, then I'll be pretty close to being home free: Once I finally get to sleep, I'm only waking up now and again and I get back to sleep pretty quickly (5 to 10 minutes at most). I don't have any issues with pulling the mask off when I wake up at night and I don't pull it off in my sleep.

[carbonman]

The struggle to get to sleep every night is exhausting!

I would suggest that you take some time,
NOT bedtime, to work w/finding that comfortable
position. Do this when you're not stressed
about getting to sleep.
Also work w/how to move around w/the hose.

Practice this until you have it down.
Then when the real bedtime comes,
you know exactly where you're going
and how you're going to get there.

It's your life.
It's my life.

[KatieW]

If your hose is too short, you could try an "extension" like this, between your mask and hose.

https://www.cpap.com/productpage/Resmed ... berty.html

However you will lose some of the benefit of the heated hose, so will need to cover the extension so you don't get condensation. eg. a short hose cover, or cut off a tube sock or sleeve from a t-shirt.

Yes, all this stuff does require making some adjustments in how you like to sleep, but hang in there, and you will figure it out.

[tonycog]

I wear the PAP-Cap for only one reason: it holds the hose up above me. I can roll from left to right and back-again without even touching the hose.

Here it is: http://www.pur-sleep.com/products/prodD ... rch=&page=

Tony