Post
by flowergal3 » Fri Jan 14, 2011 12:42 pm
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!
