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Can't find a mask. Totally frustrated!
#11
RE: Can't find a mask. Totally frustrated!
When I made my first post I don't believe I did a very good job of explaining my sleep study nightmares. I  had my first sleep study in early November 2016. I was planning to retire by April 2017 and move to Arkansas to be closer to my kids and grandkids. I wanted it (sleep study) done before December 31 so my employer's insurance paid for it. January began a new insurance year with $2400 deductibles. Since I was moving half way across the country I did not want to spend anymore money than I needed to. The DME company misplaced my prescription and did not even contact me until the end of January, 2017. I decided I would hold off until I moved and have Medicare pay for the prescription to be filled. After moving I signed up for Medicare B and was delayed as my former employer gave Medicare wrong info and this caused a month delay.

June 01, 2017 I finally had Medicare B, went to my new doctor and asked if she could fill the prescription. She set me up with a sleep study doctor and their office informed me they couldn't fill the prescription, as my Ohio sleep study was ordered by a nurse practitioner and Medicare only accepts sleep study's ordered by a doctor in the state of Arkansas. (I had a NP because of my doctor no longer accepting Blue Cross due to Obamacare issues) Now I was set up with my second sleep study with-in a year. Imagine my surprise when the new sleep study came back with a completely different recommendation. Ohio was 7 cm of H2O-C-Flex 3 with Humidification. Arkansas was 11-14 cm of H2O. (both had the same 29.4 AHI, but the prescription was double in Arkansas. 

Since I didn't get a new machine until February, I used my sons System One and set it to the Ohio numbers since that was all I had at the time. (7cm H2O). I used Phillips Easy Life nasal masks as that was all he had. Since I new nothing about SleepyHead, I was not monitoring my numbers. Once I got a machine from a DME I had access  to my numbers first through Resmed and then Dreammaker. This brings me to my "first post" on the Apneaboard. I have used the nasal comfort gel, Easy Life nasal, Wisp Naval. On the full face I have used the Airfit F20, Airtouch F20, Mirage Quattro, Amara and DreamWear. The silicone ones have all leaked as the pressure created fluttering leaks due to the silicone being too thin and the shape of my face. My last DME gave me a thicker cushion for the Airfit F20 and it worked well. I was given a sample of the Airtouch F20 cushion at my last sleep study and if I had a choice that is the one I would select. The replacing of this cushion every month is very costly so if Medicare keeps refusing to pay I will not be able to use it as the cushion is an extra $50 / month on my budget. Keep in mind once I take my "bathroom break" every night I am not able to fall back to sleep and it renders therapy ineffective.

A cheaper alternative would be a nasal mask but a chin strap is no match for my jaw. I can use the Wisp nasal mask if I tape my mouth, but we all know how controversial that is. I hope I have answered some of your questions and I am extremely grateful for this website and the people who reach out to help others less knowledgeable. I hope the day comes when I can help someone in need....Thank you
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#12
RE: Can't find a mask. Totally frustrated!
Thanks for your post. I don't believe I said anything about my masks wearing out. The best one for me has been the Airtouch F20 full face but they cannot be submerged in water. I am extremely uncomfortable using mask wipes on a foam cushion any longer than a month. I have not had too much success with the silicone masks as my pressure seems to cause the fluttering air leaks, especially around the eyes. Since I have vision in only one eye I cannot afford to have air blowing in drying my eye out. Thank you again for your thoughts.
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#13
RE: Can't find a mask. Totally frustrated!
If you dont want to wipe the mask, wipe the face with a alcohol based solution to remove any skin oil, make sure the solution doesnt leave any residue and is scentless. Personally id wipe my face with the purest ethanol i can get, make sure its not denaturated, probably avoid industrial shops and opt for getting it at a pharmacy.
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#14
RE: Can't find a mask. Totally frustrated!
Actually, the air touch mask can be placed in water, I’ve done it several times, and now I’m going to do it weekly with my new one. You need to be gentile with it, once I take it out I gently squeeze the foam areas with a dry wash cloth to get the excess water out, and let it air dry for several hours (after wiping rest of mask with dry wash cloth to get rid of most of the water).
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#15
RE: Can't find a mask. Totally frustrated!
Hi Michael,
I can feel your frustration. I think the reason so many people fail at cpap is that they are asked to accomplish something that is very complex...at a time when they are at their worst from fatigue and sleep deprivation. So hang in there and perhaps pause and reflect, rather then following your initial impulses such as returning your machines and masks willy nilly.

I have a large face and mouth breathe occasionally...so I settled on a FF mask. I liked the Quattro, but I still had to fine tune things.

The one single thing I did that helped the most was to use mask liners. There are commercial versions, but I just cut mine from old cotton tee shirt material. I actually use a double layer. That almost eliminated leaks for me.

I am an amputee and so have gotten use to using a urinal to pee in...so I don't have to go through the hassle of putting on my leg and taking off my mask just to empty my bladder. Get a strong wide mouth plastic bottle with a screw top and leave it on the floor beside your bed. See if that helps.

Good luck,
JD
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#16
RE: Can't find a mask. Totally frustrated!
(06-03-2018, 11:45 AM)johndee Wrote: I am an amputee and so have gotten use to using a urinal to pee in...so I don't have to go through the hassle of putting on my leg and taking off my mask just to empty my bladder.  Get a strong wide mouth plastic bottle with a screw top and leave it on the floor beside your bed.  See if that helps.

Good luck,
JD

I have used the Little John for really long flights and I got mine through a company called Sporty's. They are relatively inexpensive through this outlet and I think they can be had for less at other places. There is also an adapter for women as well.
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#17
RE: Can't find a mask. Totally frustrated!
Also, for silicone cushions like the Quattro, I had to use liners to get a good seal. I could send you some if you send a pm with an address; using the air touch I done need liners. My liners are for a medium sized Quattro. In theory, you are supposed to replace them every day, but I would routinely get a week out of each one. It was the only way I could stop “eye farts”, where the mask would leak and make annoying noise and wake me up.

The name of the product ends with zzz, and I’ve been buying them for years from Supplier #1.
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#18
RE: Can't find a mask. Totally frustrated!
Thank you all for the response and suggestions. I will try washing my foam F20 and see how that works out. I have returned the Quattro as it just had too many air leaks and was too bulky. I truly appreciate all suggestions.
Thanks
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#19
RE: Can't find a mask. Totally frustrated!
Michael

Reading your thread and all the posts in reply nearly brings me to tears. Thanks, all you guys for your brave testimonials all in an effort to help a fellow hose head. Might be soppy to say this but I will, this is what makes me happy to be part of the human race.

I do not have much knowledge of nor experience with the American Health System and none with your machines but wonder if you would like to try using a soft neck collar to help keep your mouth shut and help with leaks. I have found this works for me far better than a chin strap and certainly have not wanted to tape my mouth.

We do not get such constant replacements with the NHS here in the UK and we have to make the case for it. But quite a few of us here in the forum say we do not really need to change our masks that often. I used my original pillows for about 10 months before getting any replacements. The full face mask did not do it for me.

It does take time to find a suitable mask which is THE hardest thing in this whole experience. I wish you all success in that process and let us know how you get on.
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#20
RE: Can't find a mask. Totally frustrated!
(06-03-2018, 02:48 PM)Apnea Infant Wrote: Michael

It does take time to find a suitable mask which is THE hardest thing in this whole experience. I wish you all success in that process and let us know how you get on.

Yep, I've tried tons of masks and even a mouth piece mounted nasal pillow. For years I used the Quattro mask, but when I got a new machine, I tried the Amara view, but that hurt my nose, so I've settled on the air touch F20.
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