Newbie-- Mask yankoff problem

[birder]

My previous post (Nervous Newbie) got a number of good, helpful responses from kind folks at CPAPtal
For eight days now, I have had this CPAP machine (Breas iSleep from General Electric) with a Resmed Mask. My sleep test results were pressure =7 cm/ RDI=22 .

I have yet to get used to this whole jingbang. I keep yanking the mask off in my sleep. With the mask on, I don't sleep for more than 2 hrs or so at a stretch. I get up feeling much better though (I understand the meaning of the name RestedGal now).

The fresh questions :

1. Why do I yank the mask off if it is improving the quality of my sleep (which it surely is)? Do all newbies go through this phase??

2. Should I use the mask and machine during waking times- reading a book or playing Sudoku or watching a movie? Would this help my face get used to the mask and decrease the yankoff episodes.?

3. Would the CPAP force more air into my lungs and lead to more oxygen entering the bloodstream? Can I expect better blood chemistry results when the reports come next month?

4. With the mask, I take 5-15 minutes to fall asleep. earlier it used to be 0-3 minutes.Any reasons for this? Have others experienced this?

5. I often feel a minor leak when I am resetting the mask on my face. This disappears with a little bit of tweaking. However, would this "leak" not return as soon as I am asleep? Could this be the cause of my yankoff?


Sorry to bother you folks again...

[Drowsy Dancer]

Hi, birder, I am a newbie myself and so I feel I can only make one useful point.

If you wear the mask with the machine on while you are awake to get used to it, you are affecting the data that the machine is collecting. Because our breathing patterns are (apparently) different when we are asleep than when we are awake, you will get different readings for your AHI and such.

The data that is collected is relied upon by your clinician and can be investigated by you in monitoring your own treatment, so you might want to avoid skewing it.

In order to get more used to your mask, why not try wearing it while reading but NOT connected to the mask? It sounds like it's not the air blowing on you but the feeling of the mask itself that is bothering you.

I will note that my experience so far is that the mask doesn't need to be super-tight to work effectively. I was bolting that sucker on me so tightly the first few nights that it was very uncomfortable. On the plus side, I couldn't claw it off during the night.

ETA: Oh, and the taking longer to fall asleep? It's because you're getting used to having an alien being stuck to your face. You will get used to it over time (I say with my two-and-a-half weeks of experience).

Drowsy Dancer

[Pugsy]

1. Why do I yank the mask off if it is improving the quality of my sleep (which it surely is)? Do all newbies go through this phase??

Yes, it is common. Many will report doing it. The body senses something foreign and responds by wanting to get rid of it. Even without mask leaks, discomfort or whatever most of us have reported doing this from time to time.
It is more of a reflex action. If this happens all the time then doing something to help prevent this action would be warranted. Some add a bit of tape to the face and mask just so the slight discomfort from removing the mask will wake us up and remind us to leave the mask alone.

2. Should I use the mask and machine during waking times- reading a book or playing Sudoku or watching a movie? Would this help my face get used to the mask and decrease the yankoff episodes.?

This would be helpful if a person has claustrophobic feelings especially. It will mess with the data some but hey, most of the time no one looks at the data but you. I wouldn't worry so much about the data at this point, I would worry about keeping the mask on and deal with data later. Data doesn't mean much if you can't keep the mask on to get therapy.

3. Would the CPAP force more air into my lungs and lead to more oxygen entering the bloodstream? Can I expect better blood chemistry results when the reports come next month?

It doesn't really "force" a lot of air into the lungs. The air pressure from the machine actually acts to provide a stint of sorts to keep the air way from collapsing. More oxygen will be exchanged in the lungs just because the air is moving. There are machines that will "force" air into lungs. These are called ventilators. Useful when the lungs simply are not able to work fully. Some of the really fancy xpap machines will act like a ventilator as part of their function but the run of the mill cpaps and apaps do not.

Blood chemistry change? Maybe, maybe not. Sort of depends on what might be off, why and any other factors involved. In general the routine blood tests may go unchanged unless something else goes along with cpap. Example might be elevated lipids or blood sugars. Some people will have more energy, exercise more, etc, see a drop in weight and all those will affect the numbers. Some diabetics report a change in blood sugar but some also don't. No hard fast answer for that question other than "It depends on...."

4. With the mask, I take 5-15 minutes to fall asleep. earlier it used to be 0-3 minutes.Any reasons for this? Have others experienced this?

Common. We simply are aware of this foreign contraption on our face. Aware of maybe leak happening. Aware of maybe discomfort. This will get better with time. Also if you are using any sort of ramp feature it will start out at a lower number, sometimes this lower pressure number is rather "stifling" and can make us the tiniest bit of uncomfortable and keep us awake. I never used the ramp. The suffocating feeling was worse than simply facing the full pressure head on. Each person is an individual though.

5. I often feel a minor leak when I am resetting the mask on my face. This disappears with a little bit of tweaking. However, would this "leak" not return as soon as I am asleep? Could this be the cause of my yankoff?

Maybe if the leak is large enough to wake you but it easily could just be the brain saying "OMG what is this thing on my face again"


I am not familiar with your machine at all. Does it offer any data? If so, what type of data? Any software available.
You are going to want to be able to at least view your AHI numbers and any leak data.

[gurp13]

I've been "journaling" my experiences in another thread (New CPAP user... my experiences so far) and most, if not all, that you are talking about is stuff I experienced. Give it a read and you'll get a lot of answers in there too from the knowledgeable people here. I used to yank my mask off, too. I am bothered by little leaks. I used to wake every two hours.

Just be patient and keep trying. Also, do everything you can to make it a fun, comfortable experience. I got a hose cover (hose snuggle) and use aromatherapy oil on a little paper wafer next to the filter. I also just got a special memory foam pillow specifically for CPAP. I recommend you consider these things as well.

[birder]

Thanks to the Drowsy Gurp-- you guys are super fast learners.
Thanks Pugsy for the detailed info. You truly are a dear for caring to respond in such detail.

The machine I have is basic CPAP. No ramping feature. No data capability (I think..).

A pattern is emerging. From 11 pm to 7 am I am basically sleeping in three "blocks". The first two blocks are around 120 to 150 minutes each. The third block is around 200 minutes.

Would I ever go back to my old routine of "whole night sleep" , not punctuated with an RDI of 22 disruptions which I knew nothing about?

Whatever, I am definitely waking up much fresher.

[Pugsy]

This machine?

http://www.breas.com/breas_templates/Page____742.aspx

Old, old model and probably like you say, very basic only. How did you end up with that dinosaur?

If you are feeling somewhat better and starting to see a slight pattern in sleeping a bit longer each time, that is good. It can take weeks and months for things to gel. I started with a good night being 4 hours punctuated with multiple awakenings. Over time it gradually worked up to 5 hours then 6 hours and the awakenings did decrease somewhat. At least the awakenings due to foreign entity sitting on my face.

You might put a few pieces of tape on the mask and face so that if you remove the mask in your sleep, it might wake you up enough to realize what is going on and you can stop or put the mask back on.

If you can't swap out the old machine for newer data capable machine then maybe down the road if you decide to get a backup machine you can get a data capable machine.

Just keep doing what you are doing and it will get easier but it can be hard work. While some people take to this stuff like a duck to water, there are many of us that didn't for any number of reasons. Some are still struggling after months on the machine.

[birder]

Thanks Pugsy.

1. This basic dinosaur is a machine "gifted" by a doctor friend. I intend to use it till June, get used to the mask etc. By June I will also get my new Auto machine Respironics Remstar (suggest a model..if you will please) or the S9 Resmed Auto.

2. Why wait till June?---- Because I am located outside US and my govt/insurance paperwork takes around 6 months.

3. Also, OSA is the not the worst of my problems. I basically was diagnosed with ILD - NSIP ( a severe lung disease) two years back. Am on a heavy regimen of steroids/ other medication/ PFT/Blood Tests etc. But the danger from OSA is also real & immediate.

Thanks again.

[2ndGenCPAPgal]

Re: Blood tests

Prior to CPAP my red blood cell count was a little high. I found out recently that I am back within normal range. Because the test was so far into my CPAP treatment we can't know for sure (about 18 months), but the guess is that CPAP is responsible for the change. It seems to make sense that a normal number of red blood cells is now enough to carry the o2 my body needs since I am no longer getting the o2 desaturations while I sleep.

[Pugsy]

Ahh, I understand about the machine now.

I don't know anything about the Brea but since that is what you have to use now, that is certainly better than nothing. Does it even have a humidifier?

I will tell you that technology has come a long, long way since that machine was made and I expect that the new machines will be much easier for you to adjust to. Exhale relief, etc. It could very well help in the mask yank off syndrome.

Which machine to recommend?
Get an APAP if you can. While you may not need APAP it can be used in straight CPAP mode also, so essentially 2 machines in one.

The PR System One Auto with AFlex is the Respironics model. The ResMed S9 Autoset is also an APAP and can be used in straight CPAP mode. Either one would serve you well. The ResMed machine has more specific data that can be viewed on the on screen LED screen. Daily averages of AHI, breakdown for the AHI and a 95% leak number.

PR System One shows only 7 and 30 day averages of AHI and only Large leak. Doesn't give a nightly detail on screen. My one complaint about their machine. Software is a must with its use is my opinion. The onscreen details are sorely lacking.

Both have software available to see the nightly details if you are the type of person who wants real details. Real details and graphs can help tremendously. If you aren't interested in software data at all, then get the ResMed because it offers better detailed nightly data on screen.

ResMed has become real nit picky about the sales of their products. They won't let our host cpap.com sell any of their products with a ship to outside the US. They also implemented a ban on Resmed products at the cpapauction.

It may depend on where you are at and what is available but either one will do a great job. Both offer their version of exhale relief. Both offer the latest in humidifier technology. If you can get used to using the dinosaur then these machines will be a piece of cake..

If you are interested in the software use then I would suggest that you go ahead and get both of them because in June they might not be available. You can get the setup files but not install until you decide which one will be used.
Send me a PM if you wish to find the software.

I have the 1 model older Respironics M Series APAP with AFlex. I have had it nearly 2 years now. I have never tried a ResMed machine. There are differences in the machines and how they do things but they both will get the job done.

[Kahfree]

1. Why do I yank the mask off if it is improving the quality of my sleep (which it surely is)? Do all newbies go through this phase??

2. Should I use the mask and machine during waking times- reading a book or playing Sudoku or watching a movie? Would this help my face get used to the mask and decrease the yankoff episodes.?

I have been on cpap since January of this year. I am still taking it off during my sleep. I no longer fear the mask nor have issues wearing it, but when I am asleep, off it comes. Usually about 3.5 hours into wearing it it comes off. I wish it would not as I need to get to 4 hours to be compliant. This behavior is hindering my progress. I know with it off I am having apnea's. That bothers me a lot! Keep wearing it though, I am sure in time we all become so use to it that it must eventually stop.

Good Luck
Kelly

ps. I wear it while watching tv and turn it on. If I don't turn it on, I will fall asleep without it on. Pointless. I usually fall asleep before an hour is up so I dont think my data is all that affected.

[birder]

Thanks 2ndGenCPAPgal- I am sure that Blood Chemistry would improve within a few months of continued CPAP usage.

Thanks Pugsy. My machine is really basic- no humidifier, no data capability, no ramping..... But still it delivers a constant pressure of 7 and I feel better in the morning. Like you said, any upgrade in June would be much better.

I have been going through Gurp13's post on newbie experiences. I have also read many of Mike Moran's humorous pieces.

This forum is a great place. And people like you make it what it is....

[robysue]

Birder,

You've gotten good answers from others concerning your questions. There are a couple of questions that I want to add my two cents worth of advice about, though.

I have yet to get used to this whole jingbang. I keep yanking the mask off in my sleep. With the mask on, I don't sleep for more than 2 hrs or so at a stretch. I get up feeling much better though (I understand the meaning of the name RestedGal now).

Don't beat yourself up to much about taking the mask off in your sleep. But if you wake up without the mask on, it's very important to put the mask BACK on before you try to go back to sleep. And do NOT consciously go to sleep without the mask on.

4. With the mask, I take 5-15 minutes to fall asleep. earlier it used to be 0-3 minutes.Any reasons for this? Have others experienced this?

I wouldn't worry about taking 5--15 minutes to get to sleep with the mask on. I would start to worry if that 5--15 minutes starts regularly turning into 30+ minutes night after night. It's important to NOT lie in the bed for hours with the mask on but not sleeping. If you find yourself unable to go to sleep for 30+ minutes with the mask on, you should consider getting out of bed for a few minutes and going into another room to do something quiet and soothing until you feel sleepy enough to go back to bed and try to get to sleep again.

As to why it's taking you a bit longer to fall asleep? Well there's simply a lot to get used to that represents a pretty big change. In time, as you get used to the sensations of having the mask on and the noise the machine makes, your latency to sleep will most likely return to normal.

Would I ever go back to my old routine of "whole night sleep" , not punctuated with an RDI of 22 disruptions which I knew nothing about?

With time you may get back to your old routine of sleeping the whole night---minus the respiratory distruptions of course. However, many folks will continue to wake up for very short periods of time because of a leak, or the need to turn over and the hose has to be dealt with (hose management systems may make this easier) or the noise wakes them up, or .... However, for most people, those wake ups are very short (less than 5 minutes) and may not cause any real feelings of insomnia. Since you slept "well" before CPAP in terms of short sleep latency and ability to sleep through the night without conscious waking up, once your body adjusts to the CPAP and starts to really appreciate what it's doing for you by preventing the respiratory distrubances, my best guess is that you will start sleeping through the night (much more soundly than before CPAP) and your sleep latency will also probably drop back down to where it used to be. Just be patient and don't get worried about the wake ups as long as you can mask back up (if the mask is off) and return to sleep in a timely fashion.

[birder]

Thanks Roby Sue.

No, the 5-15 min is heading towards becoming 3-10min and so there appears to be no danger of insomnia onset.

An additional thing-- I don't know whether I should mention this on this forum...

When I run my fingers on my forehead, it feels as if it is covered with pimples. Mirror/visual inspection reveals a flat surface with no visible indicators.

Is this due to CPAP or am I imagining things?

[birder]

When I run my fingers on my forehead, it feels as if it is covered with pimples. Mirror/visual inspection reveals a flat surface with no visible indicators.

Is this due to CPAP or am I imagining things?

[Pugsy]

When I run my fingers on my forehead, it feels as if it is covered with pimples. Mirror/visual inspection reveals a flat surface with no visible indicators.

Is this due to CPAP or am I imagining things?

You mention "ResMed Mask" but we don't know which kind? Does any part of your mask touch your forehead? If so might be slight reaction to the materials.