New to CPAP and Struggling

flowergal3 wrote: I had a rough night last night, managed to stick it out on the machine for 4 hours, but finally gave up at 5AM. Too much leaking and then the usual ritual of tightening it and sleeping until it hurt too much and loosening, and seating the seals, blah, blah, blah. I'm finding myself dreading bedtime again, and putting off going to bed. I know good sleep hygiene is very important. I have to stay in a routine, most especially now.

I bid you a sad welcome to my CPAP & insomnia club. And you are right: Good sleep hygiene is critical in keeping the insomnia at bay and adjusting to CPAP.

I've been doing serious battle with insomnia right from the start of my CPAP adjustment. (Search for my posts if you want the long version of the story.) I've had insomnia issues off and on my whole life, but last summer---prior to starting CPAP---the insomnia monster had been dormant for many moons except for the random isolated bad nights, because, for the most part, I had internalized good sleep hygiene practices--except for rigid established bedtime and wake up times, which I didn't need to keep my insomnia under control back in the pre-CPAP days.

When the insomnia monster raised his ugly head early in my adjustment to CPAP, the kind folks here were very helpful: They not only provided numerous tips for dealing with the insomnia (some helpful, some not, but they were always offered with the best of intentions), but they also simply provided much needed support when I simply had to rant and rave about my on-going battles with the insomnia monster. And I've been lucky with my sleep doctor's office as well: There's a really good PA at my sleep doctor's office who has been critical in giving me the very real medical support I've need in my long struggle to make xPAP therapy work for me in these last 3 3/4 months. My PA is now working closely with me to put that missing piece of good sleep hygiene---the (rigid) established bedtime/wake up times that I now need to keep my insomnia monster at bay. It ain't easy, and it will take time. But at least now I feel like I'm fighting an old, familiar enemy (the insomnia) instead of the xPAP therapy each night. That's a huge improvement for me towards being able to say, "I've adjusted to BiPAP! and I now feel BETTER."

Best of luck in your adjustment!

So I urge you to contact your sleep doctor's office about the insomnia issues too. You MAY be lucky. Ask to speak to a nurse or a physician's assistant for advice on dealing with the simultaneous issues of insomnia and CPAP adjustment. There just maybe someone there who can help you out.

robysue wrote:

flowergal3 wrote: Ask to speak to a nurse or a physician's assistant for advice on dealing with the simultaneous issues of insomnia and CPAP adjustment. There just maybe someone there who can help you out.

The head nurse at my sleep center was invaluable the first few weeks. I must have visited her 3 or 4 times to help with mask adjustments, etc....always brought a nice box of cookies or pastries each visit

flowergal

Also new to CPAP and Struggling. Got my machine December 31, 2010. And I am having the same problem with the nasal pillows shifting. I think last night was my best night. Kept mask on most of night for the first time. But hate the way if I get mask tight enough not to leak my bottom teeth hurt. If I don't get it tight enough It leaks. I'm hoping I get used to this soon. Also thinking of trying a larger mask maybe. Need sleep!! Good luck.

OK, try one of these to anchor pillows:
viewtopic.php?t=14422&highlight=
or scoll down about halfway to the images in the following:
viewtopic.php?f=1&t=13882&st=0&sk=t&sd=a&start=15

One of these suggestions is bound to help. Many if not most of us who wear pillow or hybrid-style (pillows and covers mouth) masks use one of these to help anchor the pillows.

flowergal3 wrote: I felt a bit like a sneaky little kid, digging around where I shouldn't be, but I'd rather be informed than not.

Flowergal3.... Please be that little kid! Go for it It's your machine, your body, your treatment. You deserve to be fully informed and on top of your therapy.

Everyone's facial structure is different, which makes it so hard for some to find the right mask. Please don't give up! Ask your DME if they have a 30 day exchange program.

Look at the Opus 360. https://www.cpap.com/productSearch.php?query=Opus+360
There may be a fitting video on line... there is for the Swift FX. I loved the FX but could not make it work: bad leaks and AHI's over 5. I fought with it for 3 months, even tried different nasal pillow sizes before trying my hubby's Opus 360. I'm a side and back sleeper. When laying on my side the bed pillow pushed the nasal pillows out of my nose, and the leaks were drying out my eyes! On my back my mouth fell open and the leak rate was over 30L/min.
The Opus has a light weight plastic frame that stabilizes the nasal pillow and keeps it firmly but gently in place. The nasal pillow DOES NOT touch the upper lip so there's no pressure on upper teeth. I can slide a finger from my upper lip to the base of my nose without touching the pillows. The pillow only touches the nares to seal.
What works for me? A chin strap and a boil-and-bite sports guard from Walmart to reduce mouth leaks. This works so well I get 0.0 leak rates several times a week, and average less than 5L/min.

I hope you find that perfect combination and fit real soon!
Cindy

Flowergal,
I've been on the hose for two yrs. and still searching for the perfect mask. This site has a lot of good people and information. I just discovered this site recently. One thing I found out is that the EPR setting is a life saver. I don't think I could have done without it. My machine has three settings. 1, 2, and 3. I have mine set on 3. Enable it and see what I mean. I also like the ramp feature. Play around with the starting preasure and see what is comfortable. Hang in there. It does get a lot better.

robysue, thank you for the welcome to the Insomnia Club! I feel honored to be a member, lol, and hope neither of us have to stay in that particular club for too much longer! I have an appointment with my doctor on the 24th, and hope to find out something more from him. Hope, being the operative word, since I know, many people didn't find out much from their md's. But I can still hope. (Right?)

I did some rearranging of the furniture in our 10 x 10 bedroom last night and felt a little better about going to bed last night knowing I could reach the machine without vaulting out of bed every time I needed to turn it off to adjust something. Part of the sleep hygiene; trying to get the bedroom user-friendly and eliminate unnecessary stress. I went to bed at 10:30 last night which is very early for me, but I was tired, and the road to new habits starts with a single step.

I saw my DME on Wednesday and this time he sent me home with a Mirage Quattro FX and a Swift LT for Her nasal pillow mask. He's been good about dispensing masks, this makes six already. I'm having quite a time with the Swift LT--I took the tip from this site and sewed the hook part of Velcro into the mask to stop the sliding, and it worked pretty well, though I think my Velcro is a bit too 'industrial'--it's almost like I had my hair caught in a bramble bush, lol, and now have a hairy headgear. I'm going to have to do some more tweaking to get it right.

Muse-inc: I started out with the XS pillows in the Swift LT, but was having such a hard time exhaling and the pillows made an annoying whistling noise when I exhaled, so I went up to the Medium pillow which seemed to help a little. I still have to figure out exactly how you're supposed to wear the nasal pillows, because the DME stuck the thing on my head and pulled the straps TIGHT which of course, drove the pillows halfway up my nose. Now see, if I hadn't found this site, that's the way I thought you'd have to wear the mask, but thankfully, I know better now.

From what I've read here, the pillows are merely supposed to rest gently against the nostrils, right? I imagine this goes the same for the other masks, as well? I'll have to check into the Opus 360 Cindy Lou Who suggested and see if that would work--I love the idea of not having anything touch the upper lip. I think the Opus would allow side sleeping--and OH how I am missing side sleeping. Thank you Cindy Lou Who!

don56, Thank you for bringing the ramp pressure to my attention, I turned it on last night and you're right, what a difference! (My DME had it set to OFF.) Another thing about my DME who, by the way, still doesn't know that I know how to get into the S9 clinical settings a bit--when he sent me home with the FF mask and the Swift LT, he never made the change in the settings menu between Full Face and Pillows, and if I didn't know how to do that, I'd be in quite a pickle. I had to change my Ramp from a setting of 4 to 7 for the nasal pillows, or I felt like I was suffocating, and since I know how to to it, no problem, but what if I didn't? I can see why CPAP therapy often goes badly for patients, they are kept in the dark and despair sets in fast.

So, all that said, when I was done fighting with the Swift LT after about 3 hours of 'sort of' sleeping, I switched over to the Mirage Quattro FX just to see what it was like. Again, the DME had overtightened the straps in the office, so I have them set just as loose as possible to see what would happen. I then slept another three hours with this mask on and was rather pleased I could sort of cram it into the pillow when I slept on my side. The only thing I didn't like too much was the way the mask fits. You have to put the mask on from the bridge of your nose first and then tip it down like it's hinged, and then fasten the headgear clips. That's ok, but when you have to readjust it, you have to remove both clips and start over instead of being able to wiggle it around a bit while it's still on your head. And, I'm having leak issues at the top of the mask.

I had made a face liner out of some well-worn cotton T-shirts for my original Mirage Quattro and found it to be much more comfortable to have something between me and the silicone of the FF mask. I tried using the liner last night on the Quattro FX and it didn't work as well, so I abandoned the idea and went without. I had a pretty good run of about 2 hours uninterrupted sleep until I was woken up by air howling out of the top of the mask when my APAP's pressure went up.

I don't know if this is normal or not, but I found the silicone liner of the FX had actually separated from the hard plastic mask by being literally 'blown' out of the groove inside the mask it's supposed to be seated in. Anyone else have that happen? I could reach up and push the liner back into the mask and got some more sleep, but once my pressure would go up the liner would separate from the mask again. Maybe I'll have to tie something there to hold the two together? As long as I don't block the exhaust vent, maybe that will work.

I wish I could get used to the silicone on my face, too. Does anyone else use face liners, or will my face toughen up after awhile? I'm thinking about tinkering around with my homemade liners to see if I can perfect them with use on the FX. It would sure make it a whole lot more comfortable.

The FX did not leave any deep marks on my face, but I'm not sure about the sizing. The DME sent me home with a Small, and using the little measuring gadget, that's right for my face, but the bottom of the silicone mask stretches out and instead of lying flat like a cushion should, it turns on end, like the side of a rubber band cutting into the indentation of my chin. I also have worn glasses for over 40 years and like to have my glasses on the bridge of my nose and not half way down, and the FX is supposed to be seated a bit down on the nose, so that's a bit of an annoyance for me. I guess I can get used to it, but I'm always fighting the temptation to push it up higher on my nose and then, of course, break the seal and we start the vicious cycle all over again. Anyone else ever experience this? I don't know if I should talk to the DME about going up a size, but doing the measuring with the ruler/thing that came with it, the mask would then end mid-chin. Any suggestions?

All that said, I know I'm a newbie and only into this for 14 days, so I don't guess my opinion counts for much, but I like the Quattro FX much more than than the older Mirage Quattro with full headgear because there are no forehead straps and it does allow me to sleep on my side fairly well. I bought a Regenesis pillow yesterday (anxiously awaiting that in the mail) and hopefully I'll have good luck with it as our standard bed pillows aren't great for mask wearing.

My husband has been SO supportive of this whole ordeal. I told him I'd go sleep on the couch (no other bedrooms in the house are empty yet) and he said that was not necessary, he'd slept through my apneas and snoring and he can sleep through this, too. He rigged me up with a hose hanger last night which worked wonders......so much nicer than having the hose drag the mask off my face, especially when wearing the Swift LT which has the hose attached to the top of the head. I like that feature, actually, but I've got to see what I can do about making the head gear a bit more stable.

Thank you for being so helpful and listening to a newbie ramble. I appreciate it so much!

flowergal3 wrote:robysue, thank you for the welcome to the Insomnia Club! I feel honored to be a member, lol, and hope neither of us have to stay in that particular club for too much longer!

I sincerly hope your membership lasts far less long than mine.

I have an appointment with my doctor on the 24th, and hope to find out something more from him. Hope, being the operative word, since I know, many people didn't find out much from their md's. But I can still hope. (Right?)

Yes, one can hope. But also try to see if he has a nurse or a PA who works with patients who are having adjustment issues that go beyond mask leaking. Just in case the insomnia winds up morphing into its own problem ....

I did some rearranging of the furniture in our 10 x 10 bedroom last night and felt a little better about going to bed last night knowing I could reach the machine without vaulting out of bed every time I needed to turn it off to adjust something. Part of the sleep hygiene; trying to get the bedroom user-friendly and eliminate unnecessary stress.

Yes, this is critical. You've got to have the machine easily accessible from your side of the bed. A small light on the nightstand you've got the CPAP on also helps if there's room. But make sure the alarm clock is on HUBBY'S side of the bed on a DIFFERENT nightstand somewhere where you CANNOT see it.

Muse-inc: I started out with the XS pillows in the Swift LT, but was having such a hard time exhaling and the pillows made an annoying whistling noise when I exhaled, so I went up to the Medium pillow which seemed to help a little. I still have to figure out exactly how you're supposed to wear the nasal pillows, because the DME stuck the thing on my head and pulled the straps TIGHT which of course, drove the pillows halfway up my nose. Now see, if I hadn't found this site, that's the way I thought you'd have to wear the mask, but thankfully, I know better now.

From what I've read here, the pillows are merely supposed to rest gently against the nostrils, right? I imagine this goes the same for the other masks, as well? I'll have to check into the Opus 360 Cindy Lou Who suggested and see if that would work--I love the idea of not having anything touch the upper lip. I think the Opus would allow side sleeping--and OH how I am missing side sleeping. Thank you Cindy Lou Who!

You're right: The cones on all nasal pillows type masks should rest against, not inside, your nostrils. It is only the tip top of the cone that goes into the nostril. You'll often get a better seal if you gently place the pillows very loosely against your nose, turn the machine on and let it inflate the pillows (so the puff up against your nose and seal against the nostrils), and then slip the head gear on.

I'm a side sleeper and I find I have very little trouble getting a good seal with the Swift FX Nasal Pillows for Her mask. The Swift LT just didn't fit my cheekbones right, but others swear by it, and it is a bit more stable than the Swift FX is.

My husband has been SO supportive of this whole ordeal.

My own hubby has put up with so much the last four months. A good man is a true gift from God in this struggle.

Good luck!