First of all, I want to say thank you all for your advice and support. When I came here this evening to read, I was so excited to see that there are many of you who have gone through the same or similar situations to the one I'm in, and I can't tell you all how much I appreciate each of your replies. If I could give you all individually a big hug, I totally would! As much as I hate that you guys have suffered through it also, I am grateful for your willingness to share your experiences with me.
Here are some answers to a few things I focused in on. Again, I'm really sorry that this is long-winded. I have a tendency to babble, so if it ever gets annoying, please don't be afraid to tell me to dial it back a bit!
Julie wrote:Have you tried a Pap pillow (for side sleeping)?
I have not tried one of these yet, but I've seen them online, which is what prompted me to add the additional pillow that lies lengthwise. I figured I might be able to fix a pillow situation that would work in a similar manner as the CPAP pillows, and my doctor suggested that those pillows might be useful when I saw him last Tuesday. I didn't know you could buy these at Bed, Bath and Beyond! Thanks for that! I had looked at them on Amazon.com and wasn't happy with the price, so getting them from B3 might be the better way to go since they are always sending out coupons. Julie, your idea of cutting into the mattress is pretty awesome!
LSAT wrote:Regarding the Quattro leaks...go to padacheek.com and check out the Quattro anti-leak strap and /or the mask liner. There are also CPAP pillows that do what you are attempting to do with your pillows. Don't give up.
I use the same mack, but a different machine. As my wife tells me I am a all over the bed sleeper so I use:
a cpap pillow (bought from bed bath and beyond online and used a coupon i got in the mail)
a Homemade hose manager like https://www.cpap.com/productpage/pursleep-cozyhoze-boss-hose-management-system.html
a padacheek mask liner
With this everything moves with me. I am almost at the 1 year mark, and the adjustment takes time so hang in there!
sleeptimeinNY wrote:The best thing I did was get a padacheek liner. They are soft and very easy to clean and dry very quickly. Next I might look into the padacheek anti-leak strap.
Thanks for that website! I did take a look at the strap and liner mentioned, and I think I might invest in both of them. If they turn out not to work out for me, at least I haven't spent much money.
Drowsy Dancer wrote:Sigh. Both these people, with the best of intentions, created an expectation in you that is not causing problems. They probably didn't want to discourage you by telling you that it could take a while.
I'm glad you said that. I was wondering what it was that I was doing wrong, while everyone else (which isn't many people) I've communicated with seemed to have no problem adjusting at all. I guess it really is just a matter of finding your groove.
Drowsy Dancer wrote:Have you gotten the software yet to read your own data? I found it encouraging to see my numbers improving over time and not just rely on atta-girls from my doctor.
No, I haven't gotten any software to read my own data, and to tell you the truth, I was a little afraid to do that because I might slip up and accidentally erase the information that I'm supposed to give to the doctor. Since several of you have mentioned it in other posts, I guess it is safe to use, and obviously pretty informative. Does anyone have a suggestion as to which software would be the best to use? I did ask my doctor about it, but he said (as I'm sure he's trained to do so nobody else can do the job he does) that the information wouldn't make sense to me if I'm not trained to read it, and that everything the SD card contains can be shown on my machine display. I didn't believe it, but I also figured it's best not to mess with the data so I don't accidentally violate any terms of my insurance, but if you guys have done it, I'm game. Let me know which software is best and I'll check it out.
As a tummy sleeper, you might want to try a Sleepweaver élan or Advance.
These fabric masks offer the best comfort for stomach sleepers and pillow snugglers.
They are a little fussier learning how to make them fit with acceptable leak rates,
but once I had it figured out, hard plastic feels so WRONG.
cherylgrrl wrote:I would heartily endorse chunkyfrog's suggestion of the SleepWeaver masks -- especially since you can try them for 30 days with a money-back guarantee from the manufacturer. They are soft cloth, so you can lie on them almost anyway you want and they just "smoosh" to accommodate the position of your face on the pillow. My other favorites are the Bella Loops (just 2 nights with it, but so far it's the best nasal pillow mask I've tried) and the Quattro FX for Her full face mask.
Oh, cool, I didn't even know that there were soft masks out there! I will definitely have to look into those. That sounds waaaay
more comfortable than any plastic option.
cherylgrrl wrote:During my first month or so, I took Ambien every night and that helped tremendously. If you haven't tried a sleep aid, you might want to discuss that with your doctor. Mine recommended it highly and gave me a 3-month prescription. Unless you have a humongo mask leak, it's better to sleep through!
I might have to do that. I only take melatonin at night, and I've only taken Edluar (which, I believe, is a derivitive of Ambien) for my second sleep study the one time. It worked out well for me, but when my primary physician offered to write me a prescription for it while I got used to my machine, I declined because I naively thought I'd be able to work it out with just melatonin to help me get drowsy. I think when I go to see her later in the month, I will ask her for a script. I can see now that it would definitely help. Thank you for that suggestion!
archangle wrote:Is there a specific reason you're using a full face mask(FFM)? Lots of lazy and incompetent DMEs give them to everyone, but you should only get a FFM if you have mouth leaks or other problems with nasal masks.
I'm not exactly sure what the reason was that they issued me the FF mask. When I did my sleep study to set the titration, I took the Edluar tablet I mentioned above to help me fall and stay asleep, and they originally fitted me with a nose mask (not the nasal pillow kind). I slept five hours with that on, then I woke up having to use the restroom, and when I fell back to sleep after that, I was unable to get comfortable in the nose mask because my mouth would fall open and I would choke from the air going through my nose and out my mouth. The sleep tech switched me to a FFM, and then for the next hour and a half or so, I slept (fitfully) with that on. Then when I got set up with my equipment from Lincare (the respiratory company), the woman showed up with two FFMs for me to try. I have no idea how they determined that it was the appropriate mask for me. I have a bit of a chronic stuffy nose, but it's not so bad that I couldn't do well with a nose mask, but I do drool and mouth-breathe a lot at night, and maybe they were able to pick up on that during my sleep study.
As you guys can see, I'm really quite clueless about all of this stuff! I had thought I'd educated myself pretty well between all the reading of sleep apnea-geared boards, blogs, sleep center websites and all of that, but apparently there is so much more to this than I'd ever imagined. It's almost embarrassing that I didn't explore this as much as I thought I had! I can't thank you guys enough for your advice and support. It's such a nice, friendly community here, and I look forward to interacting with and learning from all of you. Thank you so much!