Replies to This Discussion

Permalink Reply by Terry Vella on March 8, 2012 at 10:28pm

Ann, it takes different people different amounts of time, some get used to it in one night others take months. I look at it as a marathon not a sprint. You will probably be with it hor the rest of your life so 2 days is not a long time. The benefits of extending your live and feeling more refreshed etc are worth it. You have done a good job having it coming from above your head. What machine and mask do you have and what are the other issues? i.e. leaks, where from? You may have to try a number of masks to find the right one, it took me 5 mask changes again some get the right one first off. You are probably panicing when you wake up, if so you may need either some perscription meds to help you sleep or try some herbal, I use Valerian Forte, it relaxs me and helps me sleep. Good luck and keep asking questions.

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Permalink Reply by ZolliStar on March 9, 2012 at 12:06am

Ann,

      I recently stumbled over my diary entries for sleeping with CPAP (started June 13, 2011). As I re-read them, I was amazed by how difficult and challenging everything had been. I had forgotten. 

     What most people say is that it usually takes about six months to get everything napped down pretty well. It can take longer and some people take no time at all.

      I wasn't one of the "no time at all" people.

      It appears that you aren't, either.

      Here's what I told a friend: It's simple, but not easy. The simple part is to keep one's airways open with positive air pressure using a machine that's attached to a hose that's attached to a mask. Fine.

     Next, how much air pressure? (I've tried two different pressure settings. I now like the original, higher setting -- 9 -- that the doctor set for me and I don't bother -- or even like -- the ramp feature.)  

     How much humidity? (I started at 2 but recently went up to 3. I think I like that better.) 

     And what about the mask? Which fits best? (I'm on my fourth mask and I still switch from mask to mask.)

     Then there's the chin strap. Actually, all three (yes, I'm on my third) work pretty well.

     Terry said this is a marathon. She's right. You have to keep trying things. I've learned a great deal from this forum (and others) as well as from the support groups that I attend. One little gem of a tip here, one little gem of an idea there -- bingo! It all begins to come together for me. Remember: what works for me may or may not work for you. So keep in mind St. Paul's advice (because it really applies here):  "Test everything; hold fast what is good."

      And keep on working at this. Don't be surprised that it takes a while because...it takes a while!

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Permalink Reply by Mary Z on March 9, 2012 at 8:58am

Ann, I'm one of those people who believes in pharmacology.  Especially in the beginning, a prescription for a sedative or sleeping pill can get you over the hump of the first couple of weeks.  You can also try one of the OTC nighttime pain relievers with benadryl, or just an OTC sleeping pill.  The ones with pain relievers ( tylenol or advil PM for example) help because we often have barely perceptible aches and pains that the pain reliever helps with and the benadryl helps you sleep.

 

The folks that prefer to go natural will hopefully post with alternatives to medicines.

 

I have insomnia so I take lunesta.  It does get better, but can take awhile to get used to the foreign  gear attached to your face.

Thanks for posting.  Keep trying and pretty soon you'll be telling a newcomer how you got over the hump, Ann.

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Permalink Reply by Ann Fons on March 10, 2012 at 9:58am

Thanks, everyone for your encouragement. Yesterday I went and got a different mask. I had a nasal pillow mask and I found it noisy and the straps uncomfortable when I was on my side which I prefer. My new mask is a nasal mask. The straps are more comfortable and its much quieter. I actually slept with it running last night! My sleep was broken and brief but its a start. I had my first CPAP dream. It was bad but at least its proof I was sleeping!  I have hope now that I will be able to sleep eventually.

I also got a memory foam CPAP pillow. Its very well designed and quite comfortable but a bit firmer than I am used to. I have a closet full of contoured pillows that I hate but I think I am going to like this one. I wasn't thrashing around trying to get comfortable. I like the way it supports mu neck and accommodates the mask and tubing.

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Permalink Reply by Lisa on March 10, 2012 at 2:00pm

I am going on a month now and never realized how tough this would be. They recently converted my C Pap to the A Pap function, which is much better. But it is still waking me up a lot during the night. My Resp. Therapist/med supply contact, just keeps telling me "you just have to get used to it". It was my understanding if you wake during an episode that the A Pap will automatically drop down to the low pressure and this is NOT happening for me, it just sticks at the high pressure, even after I lay there breathing normally and relaxing. The Resp. Therapist has never heard of this so I am getting no where? it's very frustrating. Has anyone else had this issue?

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Permalink Reply by Rita Butler on March 10, 2012 at 9:40pm

Ann, I've had mine for 3 months the 17th of this month and it's only been the last 4 nights that I have actually had a full night's sleep.  Anyone here can tell you I cried and whined and complained but I was told to just keep at it and not to worry...time would make it easier and they were right.

The one thing I did do that was helpful for me was I called my medical supply company every couple of days during my 30 day trial period and asked for a different mask until I found the right one.  One thing I definitely did wrong was not calling my sleep doc and letting him know I was waking up every morning with an extremely dry mouth.  On the last day of my trial run I finally did and he said I should be using a full mask instead of a nasal mask.  I wasted a whole month trying to make the wrong type of mask work.  They gave me a Swift FX for Her full mask the last day and it has worked wonders. ~* What a difference a mask makes *~  :-)

Keep at it and it will finally all fall into place but it might take a while but hopefully not as long as me.  Most of us have a problem with our masks fitting and leaking air.  I stopped the air leaking by getting some mask liners from www.remzzzs.com .  They really stopped all air leaks and are the only ones I've found so far that really work - that's why I've been able to get a full night's sleep the past week.

Good luck and keep writing in.  Everyone here is dedicated to helping us newbies.  You are definitely not alone.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Permalink Reply by Whosit on March 10, 2012 at 9:57pm

Ann, it's different for everyone.  I had literally no adjustment period.  The first night I used it, I slept 8 hours for the first time in years and could not believe how I felt when I got up.  I can tell you this much: The feeling you will get when you adjust to your machine will be worth the effort it requires to adjust.  It will change your life.

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Permalink Reply by ZolliStar on March 10, 2012 at 11:19pm

I am sooooo jealous ;-) !!

Whosit said:

Ann, it's different for everyone.  I had literally no adjustment period.  The first night I used it, I slept 8 hours for the first time in years and could not believe how I felt when I got up.  I can tell you this much: The feeling you will get when you adjust to your machine will be worth the effort it requires to adjust.  It will change your life.

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Permalink Reply by Judy on March 11, 2012 at 11:03am

The Swift FX is NOT a full face mask, its a nasal pillows style mask. *giggle* Your sleep doctor should get a chuckle out of the Swift FX working for you when he had suggested a full face mask.

 

I'm taking a guess that he suggested a full face mask because he suspected a high leak rate - or - he actually looked at downloaded data from your APAP and knew that you ARE experiencing a high leak rate and that was the cause of your dry mouth.

 

That is the really nice thing about fully data capable PAPs: no need for making changes "by guess and by gosh", the data provides the clues for a more well-directed change.

 

As for the APAP hitting high pressure and then not backing down - LEAKs are the most common reason. Unfortunately, the more leak the higher pressure and often the higher pressure causes yet more leaks until it becomes a vicious cycle w/you stuck w/too high a pressure. It may be well worth while to change the pressure range of your APAP and bring that higher pressure down to a more comfortable but still effective pressure.

 

If you had an in-lab titration study then setting the APAP pressure range 1-2 cms under your titrated pressure and 3-4 cms above your titrated pressure may get you better results. The key USUALLY is to find that 90%-95% pressure, add 1 cm for a week and see what your averaged AI for the week was. When you find the bottom pressure that consistently gives you an AI <1 then you work on finding the higher pressure to reduce your AHI to <5.

 

So the lower pressure to control the apneas, the higher pressure to control the hypopneas gives you the pressure range for YOU.

 

Keep in mind: one change at a time, one week at a time.

 

I've found the Resmed Quattro FX full face mask to work best for me. I've probably been thru some 20 masks before finding the Quattro FX; mostly nasal cushion style masks and only a couple of nasal pillows style since I either couldn't keep my mouth shut or I couldn't defeat "the lip flutters" leaks.

 

Keeping your nasal passages clear, no inflammation, no swelling, so that you can breathe comfortably thru your nose at all times is critical to nasal cushion and nasal pillows mask success from my experience.

 

My experience has also been that full face masks tend to push the lower jaw back which is likely to cause apneas over the long haul requiring higher pressure(s).

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Permalink Reply by Rita Butler on March 11, 2012 at 1:27pm

You are so right, Judy, about the Swift FX being a nasal mask.  I should have said I use and like very much the QUATTRO FX for women.  I've tried so many masks I sometime get their names all mixed up in my mind (what's left of it)  ;-)
 
Judy said:

The Swift FX is NOT a full face mask, its a nasal pillows style mask. *giggle* Your sleep doctor should get a chuckle out of the Swift FX working for you when he had suggested a full face mask.

 

I'm taking a guess that he suggested a full face mask because he suspected a high leak rate - or - he actually looked at downloaded data from your APAP and knew that you ARE experiencing a high leak rate and that was the cause of your dry mouth.

 

That is the really nice thing about fully data capable PAPs: no need for making changes "by guess and by gosh", the data provides the clues for a more well-directed change.

 

As for the APAP hitting high pressure and then not backing down - LEAKs are the most common reason. Unfortunately, the more leak the higher pressure and often the higher pressure causes yet more leaks until it becomes a vicious cycle w/you stuck w/too high a pressure. It may be well worth while to change the pressure range of your APAP and bring that higher pressure down to a more comfortable but still effective pressure.

 

If you had an in-lab titration study then setting the APAP pressure range 1-2 cms under your titrated pressure and 3-4 cms above your titrated pressure may get you better results. The key USUALLY is to find that 90%-95% pressure, add 1 cm for a week and see what your averaged AI for the week was. When you find the bottom pressure that consistently gives you an AI <1 then you work on finding the higher pressure to reduce your AHI to <5.

 

So the lower pressure to control the apneas, the higher pressure to control the hypopneas gives you the pressure range for YOU.

 

Keep in mind: one change at a time, one week at a time.

 

I've found the Resmed Quattro FX full face mask to work best for me. I've probably been thru some 20 masks before finding the Quattro FX; mostly nasal cushion style masks and only a couple of nasal pillows style since I either couldn't keep my mouth shut or I couldn't defeat "the lip flutters" leaks.

 

Keeping your nasal passages clear, no inflammation, no swelling, so that you can breathe comfortably thru your nose at all times is critical to nasal cushion and nasal pillows mask success from my experience.

 

My experience has also been that full face masks tend to push the lower jaw back which is likely to cause apneas over the long haul requiring higher pressure(s).

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Permalink Reply by Lisa on March 11, 2012 at 2:29pm

Thanks everyone so much for sharing your stories and tips that have helped you sleep through the night. I just ordered the www.remzzzs.com, I really hope they help with the leaks, since the A Pap is sticking at that high pressure, which wakes me up and I can tell when I wake up it's leaking or something is up with the mask. Thanks to you Judy, re: that leaks can keep the pressure stuck at a higher rate, my RT, says she has never had a patient with this issue, so doesn't know what to tell me. :(  So your data/stats info is SO helpful, I will work with my RT to ensure we get the settings right. Is there a way to cap the "top/high" pressure of an A Pap setting? Right now I am ranging Peak Average Pressure of 11.0 and the Average Device Pressure is 13.0, but it also states the Average Leak Per day is 0 seconds?? So I don't get it? it's leaking and buzzing and everything lol :)  These stats are just over a 2 day period however which were my first 2 days on the A Pap function vs. 15 C Pap.

My RT said she could giv eme a new machine but I wasn't sure that would fix that high pressure sticking after I wake up and fix the leak etc. I end up having to always just turn it off and back on.

Thanks again everyone!!

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Permalink Reply by Lisa on March 11, 2012 at 2:47pm

Has anyone had any luck with this mask - for those of us who are having a really hard time adjusting to the full face mask and experiencing a lot of leaks...??

The ResMed Mirage Liberty Oral and Nasal CPAP mask provides the feel and functionality of a full face mask without the size, restraint or leakage found with some traditional full face CPAP masks. To improve patient comfort and compliance, the Liberty CPAP mask includes three sizes of nasal pillows and a small or large oral cushion, allowing the user to select the best fitting sizes at home. The mask is designed for less contact to the upper portion of the face, giving less restriction to your field of vision.

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