New full face mask! Yikes!

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Permalink Reply by Sandy K. King on April 30, 2013 at 22:11

Terry, I tried practicing getting the facial mask right 2 hours b4 going to sleep and the only way I could get it not to leak at all was to make the bottom straps so tight that i felt like my face was in a vicegrip if I made it any looser, even a little bit it would leak, and on the top I turned that dial till it didn't leak into my eyes. Well b4 I went to sleep I decided to just try it at the pressure the doctor prescribed which is 14, that way I would know what it was like before I went to sleep or pushed the ramp button. Well I woke up a couple hours later and the mask was still on but the hose was disconnected from the mask! So I put it back together and went back to sleep for about an hour and I woke up with a leak around my cheeks. I just wanted to cry which was what I did and I just got up and couldn't sleep anymore. So I called the DME and I have to go in tomorrow morning and try different masks but this time I am going to ask them to hook it up to my machine and help me get it right with out leaks. They always seem like they are in a hurry and there is only one person there to help you during walkin clinic hours which is only on Mondays 1-5pm and Wed. 9-12noon. I am also a day time sleeper and have been for years since I used to work 3rd shift before I became disabled so its real hard to get up early in the morning but I have to tomorrow. Maybe I'll just stay up all night to make sure I make it there.Im also supposed to wear it for 6 hours and last night was only 2 hours so now I have to put it on 4 more hours b4  midnight and I am not thrilled about that at all! I think I'll just put the nose pillow on for now since that full face one doesnt seem right for me and since I'll be awake I wont open my mouth unless i need a sip of water. I'm sorry for rambling but I am fed up with trying so hard to make this work for me and doing crap in my sleep i dont remember! Thanks for helping me. Im just angry at myself right now.

Terry Vella said:

Sansy, there are 70 - 80 different sleep disorders out there so hopefully they find something. Can't help you with the reading glasses, the full face mask takes a lot of adjusting, if it leaks from the bottom tighten the bottom straps, if it leaks in your eyes tighten the top straps. You need it a little tight as during the night our muscles in our face relax and the mask becomes loose but not too tight. Wwhen adjusting it only move the straps a small amount at a time. Try moving the dial in and out in small increments like 3 at a time. Do you have the hose coming from above your head? that will help, let me know how you go tomorrow.

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Permalink Reply by Sandy K. King on April 30, 2013 at 22:20

An E reader would be awesome but me and my fiance both are on disability so after bills, food, needs for the house, and misc. the money is pretty much gone. The laptops we have were given to us by relatives and a friend and we keep a car on the road with only plpd insurance because my fiance is so sick and can't take buses like we once did. I will just read before I even go to the bedroom to sleep. Thanks for the tip though. Maybe I can find one of those things I saw that a teacher had once that you lay on the top of the page in the book that a person is reading that magnifys it.That would be cheaper for me and work out just great so I can practice using the c-pap machine.

Kath Hope said:

You might end up breaking your reading glasses Sandy if you put them under your mask.  I had the same problem when first on therapy as I always read before I sleep, so I bought myself an Amazon Kindle and you can increase the font size which meant I could read without glasses.

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Permalink Reply by Sandy K. King on April 30, 2013 at 22:33

hi Mary, I went to the sleep clinic and they showed me how to do it without an adapter. I had a bad night with the full face mask last night, I typed to Kath or Terry about what happened if you want to see what I said. I have this homework sheet where I have to use i 6 hours a night and I don't quite understand it. I know how to get to the menu of therapy hours. It's a phillips resperonics. ON my sheet it first says Date in the first column and Total Hours in the 2nd column and Hours Last Night in the 3rd column. On the bottom of the sheet it says...Total hours=the number of hours on the meter of your machine. and under that it says...Hours last night=the number of hours worn last night. I dont know if it is blower hours or what cuz there are blower hours, therapy hours, there are things that say day 1 and 7 days I think so I am totally confused. The full face mask i had to make real tight or it would leak so tomorrow I have to go back to DME sleep clinic and try on different masks.

My ResMed masks always have a small gray piece that acts as an adaptor to put the hose on the mask.  The hoses are generic, but the mask coupler is not.  Call your clinic and tell them you don't have the piece.  Maybe they can mail it to you if they are far away.  Do you still have your nasal mask to use in the meantime?

Mary

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Permalink Reply by Kath Hope on April 30, 2013 at 22:43

Good idea Sandy - I didn't think of that.  Trust me to pick the most expensive option

Sandy K. King said:

An E reader would be awesome but me and my fiance both are on disability so after bills, food, needs for the house, and misc. the money is pretty much gone. The laptops we have were given to us by relatives and a friend and we keep a car on the road with only plpd insurance because my fiance is so sick and can't take buses like we once did. I will just read before I even go to the bedroom to sleep. Thanks for the tip though. Maybe I can find one of those things I saw that a teacher had once that you lay on the top of the page in the book that a person is reading that magnifys it.That would be cheaper for me and work out just great so I can practice using the c-pap machine.

Kath Hope said:

You might end up breaking your reading glasses Sandy if you put them under your mask.  I had the same problem when first on therapy as I always read before I sleep, so I bought myself an Amazon Kindle and you can increase the font size which meant I could read without glasses.

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Permalink Reply by Kath Hope on April 30, 2013 at 22:52

Don't be angry at yourself Sandy - lots of us have been in this position, and feeling sleep deprived doesn't help when we have this mask frustration   People are very lucky if they get a good mask first time.  A sleep consultant I know says "you have to kiss many frogs until you find your prince."  It took me a long time to find a mask that worked well for me, and a further 4 years until I found the mask of my dreams (pun intended)

If you do a search on You Tube for the mask you have, you'll probably find a good fitting guide to view.  Also, when you go back to the DME, persuade them to let you lie down when fitting it, preferably attached to a machine with the air blowing.  Good luck!

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Permalink Reply by Terry Vella on May 1, 2013 at 0:26

Sandy, as ususal I agree with Kath, don't get angry with yourself, I had to go through 5 masks before I found the Mirage Quattro which suited me but after two years I still sometimes get leaks and still take it off in the middle of the night, not very night but some nights. It's Wednesday morning here and last night I took it off at 12.00am after having it for 2.8 hours and thought I'll put it back on it a few minutes, the next thing I knew my alarm was going off at 6.25am. What I say to everyone is each night is a new night and every night is different, which means if something goes wrong one night we have the next night to make up for it and not every night is going to be the same.

I think I may have said it at the start but this is not easy and sometimes tries us but in the long run it is worth the hassles.

You just have to keep going, you really don't have a choice.

If I were you I would go back to the DME everyday they are open till you are satisfied starting with today like you are going to do.

Just keep hounding them until they get it right and you should be laying down with a CPAP running while testing the mask, you should have it on till it gets to your maximim pressure then for a few minutes more.

I think I missed a question you had yesterday about exhaling, take your CPAP with you and get them to check the EPR setting. EPR is simply for your comfort.  It can be either "on", at a given setting (1,2 or 3), or "off", as you find most comfortable.

I have mine set at 3, I found at the start it was '0' or off and I couldn't exhale, I kept going up to 3 which is the maximum on my machine and breathe normally.

IOn the data and your home work, just pick one of the figures and us the same figure each day, on my machine it would be 'Usage' I would think on yours it would be 'Therapy' hours.

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