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finally registered, questions ? ? ?
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Hi
I have posted a few messages under Guest- Heidi but finally registered today. I have chosen the name live wired since I am wired for life – I have a pacemaker and I depend on being “wired” to it to live.  I have been using CPAP for exactly a week now and I  have a few questions.  I have been pretty compliant- I have used it all night for 5 out of 7 nights but only 2-3 hours of the other 2 nights.  I was given 3 masks  (respironics mirage swift II, fisher & paykel opus nasal pillows, and the comfort gel nasal mask from respironics)to use and decide which would work best for me. Most nights I am finding that I can’t tolerate any one mask for the whole night, I am waking up 3-4 hours later sore some where on my nose that I have to switch masks.  I have tried tightening them and it hurts and I try to loosen it and it leaks. I have no idea how much leaking is ok or if no leaking is a must. I am a very small person and I am already using the small masks, is there an extra small or could I try a pediatric mask?  If I am switching masks in the middle of the night would the leak data be inaccurate since I understand that you have to look at the “standard” leak data for that type / brand of mask?   Most days I am not feeling much benefit from CPAP therapy but I am determined to keep with it- it is something that I can do to improve my health when so many other things are not in my control. Is there a possibility that I am still having apneas at home even though I had an excellent titration ( I felt like a million bucks after the titration) but not so much now or if my masks are leaking so much that the treatment is in effective. Is there any way for me to tell without taking the machine or smartcard into the DME/ RT I have a respironics Remstar pro M series. Can anyone tell me how to look at the efficacy and usage data that is not easily accessible?  Do all online CPAP stores require a prescription to get a new mask or backup CPAP machine- I am thinking of buying a second machine (very cheap and basic) for backup when I nap downstairs or go on vacation and I would like to play around with different masks I am thinking of trying a full face mask to see what it is like.  I am also having trouble with waking up with a very very dry mouth, I am thinking that I am mouth breathing even though I am not normally a mouth breather. I am going to try the panty hose chin strap trick that I read about tonight and see if that helps since taping my mouth shut hasn’t worked- ( I end up pulling the tape off as it is uncomfortable)   I am also waking up with sinus headaches that go away after a few hours.  I am so determined to make this work that the RT that I am working with is telling me that I am trying too hard. Should I just walk away from the machine for a night or two, then start fresh again in a few days? Or should I try one mask at the beginning of the night, when it gets intolerable take it off and not use any mask for the rest of the night? please give me some insight, thanks Heidi


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Hi Heidi,  I will tackle a couple of the questions about the masks...

I use the nasal swift so that is the one I can relate to for you.  The nasal pillow is to sit "lightly" on the outside rim of your nostril.  You may have to continue with the "fiddling" it around until you find the point with less leakage.  I have found that most mornings I wake and it is on there good surprisingly.  Don't over tighten it, that is why the nostrils get chafed.  Some nostrils just are not shaped right for the nasal masks.  Try working with the mask used during your titration if it worked that good for you.  See if you can get that one tweaked for you.

I find the blue headgear too large on my Swift.  They need to come up with different sizes not one size fits most.  I have adapted mine by pinching the straps together on each side of the headgear until it fits better...I hold them together with, in my case extra small velcro elastic pieces that come with the mask (only 1 comes with the mask but this is my 3rd one so I have extras).  A string may work.  Play with it a little to see if you can get a better fit.  I also have the hose hooked on the top of my headgear.  I find less pulling from the hose hence losing the seal.

It is better to use a mask than finishing the night without it.  Remember, when not treating your apnea you keep suffocating yourself as I call it.  Having a little leak is better than not using it at all...Until you can find the mask that works best for you.

I do not have a data capable machine, I do know that each mask has an acceptable leak rate and the machine needs to be reprogramed for that mask.  Maybe you can interchange 2 masks that have the same leak rate.  I would think that switching the masks that have different leak rates would throw off your readings.

The dry mouth is caused from opening it.  You may not realize that you are doing it.

Hope you get it all worked out...sounds like you are doing great for being a newbie at it all...you are asking the right questions and finding solutions...or shall I say, ideas to try to get a solution Smile


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I am A ZOMBIE! 20 years+ undx'd. BiPAP Auto M 14/9. Nasal Swift&F&P Flex Fit 431 Full Face. RLS/PLMD, Primary CNS Hypersomnia, Sleep Paralysis, Parasomnia, Degenerative Disc Disease, Clinical MS, Fibromyalgia, COPD plus other past dx's..what's next?

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Hi live wired (ake Heidi),

What type of mask did you use during your titration sleep study?  Did they try a full face mask on you (covers nose and mouth)?  Often sleep studies will identify the patient as a mouth breather and try the full face mask to see if that controls the apnea.

If you are a mouth breather and the chinstrap and taping doesn't work, then you need a mask that allows you to be a mouth breather but maintain cpap air pressure in order to keep your airways open.

As to mask sizes, the Comfort Gel mask actually comes in four sizes:  large, medium, small, and petite.  


Linda


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The info provided on this site is not intended as a substitute for professional medical advice.
You should not use info on this website to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider.

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You need a prescription to buy a machine from an equipment supplier.  You do NOT need one for the mask.

Whatever mask you use, it should not make your nose sore.  Sometimes it takes quite a lot of adjusting to get it right; keep trying.  I'm not qualified to suggest masks to you but I want to make that point.


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thanks everyone, I am still looking for information on how to get the leak and apnea info off my machine to see what is going on.
Linda I used a nose mask for the titration study and they said that I had a good fit with an accecptable leak rate and only one apnea the whole night. I have a feeling that even though I am not normally a mouth breather I am mouth breathing in my sleep as my mouth is dry and I am waking up with it wide open. I am going to look at ordering a full face mask on the internet tomorrow but in the mean time I am going to tweak things more and try the panty hose chin strap thing tonight.  I may try to loosen things up more, go with more leak but less chafing. I don't know what else to try? but am willing to experiment until I find a solution. thanks for the replies it is really a great group here. Heidi

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