I can't keep my mask on and it's not the mask's fault

Fisher &Paykel Icon + Auto with humidifier
Resmed Quattro FX for trying to get to compliance in the evenings. It's my smaller mask with no forehead piece so I can see TV, read, talk to ppl. It's also is more confining so I can't stand it when I'm actually trying to sleep.
I started with an F&P Simplus mask. I use it to actually sleep because it's bigger.
I'm tired of giving up my evenings to compliance-lying so last night I waited until I was tired (1230pm) and took my prescribed lorazepam.
I woke up at 7am (the first time I was conscious since 1230) and I had ripped the stupid mask off after 1.8 hrs. I had to go to work so I had to miss f-ing compliance. My ahi was 3.4. My pressure was 10.5 but it's set at 12.
I don't feel that cpap is a useful treatment for me and I would like to choose to have no treatment at all but since my doctor has said that he will report me to the dmv, I must accept a treatment I do not want.
Now I must work the problem of my unconscious brain removing the mask . I don't know how I'm going to do that.

How long have you been on treatment?



Also, if you mean 'dmv' to mean the DOT physical required for CDL drivers just an FYI- you need long term compliance. You have to bring compliance proof with each physical and have a sleep study every year. In my job you are expected to bring in these reports when you have your physical to be certified. We require complaince reports from the CPCP machine and sleep study results within the last 12 months.

If you read the guidelines it is outlined there.

http://nrcme.fmcsa.dot.gov/mehandbook/r ... ep_ep.aspx

Nope, houndlover...just the regular dmv. I've read that other people are recieving this threat as well. I wrote a whole rant over at the other forum that I won't repeat here unless some new mess happens.
On cpap over 2 months...2 very long, frustrating, hate-filled, ruined, lost, foggy-brained months.

Some people put tape across the mask strap where it hits your face or cheeks, that way when you start to pull it off the pulling tape wakes you up and you can stop it.

I tried that and also I weaved my ponytail around it. I was still able to get it off without waking up.

Have you tried a larger size of the Quattro fx?

Also, if you give more detail about how each mask is uncomfortable, we can give suggestions for how to fit them better. It took me 6 weeks to master my Quattro fx.


Also can you tell us more about the pressure settings? Are you using an auto range? You mentioned two pressures, so I'm guessing the one was either a 95% number or maybe you are using ramp?

annieca wrote:Fisher &Paykel Icon + Auto with humidifier

That is a full data machine, but unfortunately I don't think anybody has managed to find a place to get the software to read the data that the machine records. So all you have right now is the data from the machine's LCD interface, which is better than nothing.

I'm tired of giving up my evenings to compliance-lying so last night I waited until I was tired (1230pm) and took my prescribed lorazepam.

Has the lorazepam been prescribed for anxiety? Do you take it nightly? And with the lorazepam do you get to sleep quickly and comfortably while using the machine?

I woke up at 7am (the first time I was conscious since 1230) and I had ripped the stupid mask off after 1.8 hrs. I had to go to work so I had to miss f-ing compliance. My ahi was 3.4. My pressure was 10.5 but it's set at 12.

Was the machine still RUNNING when you woke up? I'm just trying to get a handle on whether you are just taking the mask off in your sleep or whether you are taking the mask off and turning the machine off in your sleep. If you are turning the machine off in your sleep as well, that might explain why you didn't wake up for the rest of the night. The whooshing noise of a machine running with the mask not on often will wake people up after they've taken the mask off in their sleep.

Some things you could try for encouraging you to keep the mask on during the night:

1) Wear mittens to bed. Mittens may make it just enough harder to remove the mask that you'll wake up when you are trying to remove the mask.

2) Put a small bit of tape over part of the mask frame that lies on your cheek. The tape needs to cover part of your cheek. The point of the tape is not to hold the mask on, but rather to make it just a bit painful to rip the mask off in your sleep. If the pain from the tap being ripped off the cheek is enough to wake you up, then you'll be able to make the conscious decision to not take the mask off while you try to get back to sleep.

3) Use bobby pins to more securely attach the headgear to your hair. Again, the point is to make it just a bit more difficult and painful to remove the mask in your sleep so that you might wake up while you are in the act of removing the mask.

I don't feel that cpap is a useful treatment for me and I would like to choose to have no treatment at all but since my doctor has said that he will report me to the dmv, I must accept a treatment I do not want.
Now I must work the problem of my unconscious brain removing the mask . I don't know how I'm going to do that.

Several comments:

It may help your unconscious mind accept the mask if your conscious mind works on trying to adjust its attitude towards CPAP. I know you're tired and sick of it all. And I know you've been trying for some time. But if you could try to not "hate" the machine so much with your conscious mind, then it may be easier to overcome the problem at night. Adjusting one's attitude is not easy. I know---I spent far too many months loathing and despising the presence of the CPAP in my life back when I started. Anger at the machine as well as serious aerophagia problems at night lead to an extended bout of CPAP-induced insomnia that took months of hard work to reign in.

In order to resolve my anger, I actually went to a CBT psychologist for a number of months to work on anger management and learning to accept the machine for what it was---a machine designed to help my health---instead of an insidious, instrusive monster that had invaded my bedroom. The first and most important thing my psychologist taught me about managing my anger was to work on consciously NOT using the word "HATE" when describing my feelings towards the PAP machine, the OSA diagnosis, and the whole unfairness of everything. He gave me a whole list of alternate words to use when describing my dislike of the machine and all that came with it. Words like, "not fond of", "bothered", "uncomfortable", "not fun" were OK to use; words like "HATE", "despise", "loathe" were not OK to use. As my therapist put it, the words that we use to describe negative things in our lives matter: If we use visceral, highly emotional, and intense words we make things worse because we make it harder to cope and easier to get irrationally angry at (what is after all) an mechanical object that is just a "thing." If we tone the words down to words that factually express our discomfort without being intensely emotional, in time it makes it easier for us to mentally accept the reality of our situation without becoming irrationally angry or upset about it.

You cannot control the actions of the sleep doc. But you can control your half of your working relation with your sleep doc. You need to have the DME or the sleep doc's office print out a full report of the data your machine gathers. You need to be able to point out politely to the sleep doc that you are going to sleep each and every night with the PAP and that you have no idea why you are taking it off in your sleep. If he can be persuaded that you are trying to get 4+ hours of sleep with the machine every night, he might become a bit more patient as you work through the problem of keeping the mask on your nose. (The doc probably doesn't have any suggestions of what to do because he's probably never tried to sleep with a PAP himself.)

If you cannot get to the point where you can work with this sleep doc, you can fire this doc and find a new one. Not the easiest thing to do, but it can be done. If you do this you still can't control what this doc chooses to do with respect to the DMV. If a new doc can verify that you are working on compliance by falling asleep with the machine each and every night, he might be willing to contact the DMV on your behalf if need be.

You might also want to talk to the doc who prescribed the lorazepam. It's worth asking whether doing things in your sleep might be some kind of a side affect. And whether there might be an alternative drug that may be less likely to lead to this kind of a problem if that's part of what is going on.

The DME thought that the medium Simplus was too big for my face so she gave me a small Quattro. It fits better and leaks less but is really confining. I have ADHD and am really sensitive. The mask problem I'm having is likely related to that. You can't take ADHD meds at bedtime because they are stimulants so it's not something that can be treated. The lorazepam was given to me to help me sleep with the mask on. Last night was only the second time I used it. All it did was make me so asleep that I didn't turn off the machine when I took it off or rouse until my alarm went off.
I think he said my pressure settings are 7-12. I set my machine to show me the pressure constantly- it calmed me down a bit in the beginning. It's always between 9.9 and 11.
My stats just changed after I unplugged (rebooted) the machine. My ahi was 4.3 in 2.4 hrs. It's been around 2 until last night.
I'll try the bobby pins tonight...and I'll try to only slightly disapprove of the machine...

annieca wrote:I have ADHD and am really sensitive. The mask problem I'm having is likely related to that. You can't take ADHD meds at bedtime because they are stimulants so it's not something that can be treated. The lorazepam was given to me to help me sleep with the mask on.

Is the doc who treats the ADHD aware of the fact that you've been diagnosed with severe OSA and that you are struggling with sensory issues dealing with the mask and the pressure? If not, it's well worth asking the ADHD doc for some help.

In particular, the ADHD doc might have a better suggestion than the lorazepam for a bedtime sleeping pill. Lorazepam is usually prescribed as an anti-anxiety drug, but it can be prescribed off label as a sleeping pill. If you don't need the anti-anxiety stuff, you might be better off with zolpidem (Ambien) at a very low dose. Please talk to both the doc who prescribes and monitors the ADHD drugs as well as the sleep doc about this issue.

I'll try the bobby pins tonight...and I'll try to only slightly disapprove of the machine...

Good luck with the bobby pins. And good luck in finding a way to "only slightly disapprove of the machine"

Another silly sounding tip for trying to tone down that hatred of the machine: Name it something that is at least "neutral" so that you don't have to keep referring to it as "that g*d d*m machine."

Seriously, having a way to refer to the machine can help. In my case, one of my coping mechanisms for trying to not hate the machine so intensely was to name it Kaa. It's an inside joke for hubby and me: A couple of months after starting CPAP I was so desperate for being able to get to sleep without battling the nightly insomnia monster that I started telling my hubby that I needed a Kaa and we both started singing Kaa's song from The Jungle Book (https://www.youtube.com/watch?v=F1ILPl5FQaM). It was a rare spot of good humor in those first three very dark months of my PAP adjustment period. We started laughing really hard and it took us at least 15 or 20 minutes to quit laughing and settle down and go to bed that night ..

We still call my machine Kaa. And hubby's brand new CPAP is fast becoming Kaa II.

annieca wrote:The DME thought that the medium Simplus was too big for my face so she gave me a small Quattro. It fits better and leaks less but is really confining. I have ADHD and am really sensitive. The mask problem I'm having is likely related to that. You can't take ADHD meds at bedtime because they are stimulants so it's not something that can be treated. The lorazepam was given to me to help me sleep with the mask on. Last night was only the second time I used it. All it did was make me so asleep that I didn't turn off the machine when I took it off or rouse until my alarm went off.
I think he said my pressure settings are 7-12. I set my machine to show me the pressure constantly- it calmed me down a bit in the beginning. It's always between 9.9 and 11.
My stats just changed after I unplugged (rebooted) the machine. My ahi was 4.3 in 2.4 hrs. It's been around 2 until last night.
I'll try the bobby pins tonight...and I'll try to only slightly disapprove of the machine...

annieca,

Are you limited to full face masks or would nasal pillow masks be an option? I am just wondering because of your sensory issues if they would be worth a shot? Additionally, if you could wear a nasal pillow mask that might be more sensory friendly and less confining, you wouldn't be as inclined to unintentionally remove it at night when sleeping.

49er

Annieca,

What was the severity of your apnea when you had a sleep study? The reason why I am asking is that dental devices are an option if you have mild to moderate apnea. Unfortunately, insurance might not cover the cost but if you can afford it, it still might be worth pursuing.

Not sure if you visited the oral appliance forum on the other site but sleep dent who posts there has consistently recommended the tap appliance has having the best results.

Here is a study for more information which shows the success rates for various apnea severities in getting the AHI below 5 for fixed vs. adjustable appliances. It looks like the TAP was used as the adjustable one.

https://advancedbrainmonitoring.app.box ... 7pjn8s11y4

I know advocating dental devices isn't very popular on this forum. But in my opinion, people who are struggling so much like you are should be given all the options to make a fully informed choice.

You have been given some great suggestions as a start. But hopefully, knowing you have another option would reduce your stress and let you move forward in your life.

49er

Humor is very useful in dealing with all things in life that are less than perfect. When you realize how much a giggle or good belly laugh helps, you may feel that an unflawed life is the real curse. Search "cpap humor" for some attitude-changing perspective, and fresh warm feeling. Especially anything by Mike Moran.

Hello I have had that experience as well, the vanishing mask syndrome. It seems to migrate from your face to the floor,that is so annoying!

I decided to mask the straps together all 3 of em but leaving one not taped up , in this way ittake a conscious effort to take it off. it worked well with me as I was struggling keeping my mask one night I unconsciously tried rip the nasal mask from my face,I woke myself up halfway thru the attempt as I was unsuccessful with it I rolled over and went back to sleep again making sure I had tucked my hands under me so I couldn't take it off as I was sleeping on my hands!

Now I have no problem keeping that alien thing on my snoze hole! Snoze=nose, thank goodness!

I can't say this enough but I am amazed at the wisdom on this board. It took me awhile to "accept' the reality that if I did not find a way to manage using this machine, consequences worse then a DMV would happen. I could feel my mental acuity vanishing. My quality of life was all spent on trying to recapture sleep that could not be recaptured.

As Robysue said and I know from experience, I had to change my attitude. First to accept my reality, but then to to accept the challenge of making this work. If these other people could, so could I. So then it became not only did I have to, but I wanted to.

Every success is a sweet moment and every step backward (I had one last night) is just a reason to educate myself more on how to find that step ahead, not only of the machine and the mask, but of my kneejerk reactions too.

I also have sensory issues. I don't wear hats, I have never worn lipstick. I hate stuff on my face. But I can't hate the cpap because I know it will not only save some of my life, but potentially save someone else from the consequences of my condition.. Sleep apnea is real. I had to retire early because I could no longer sit in front of a computer all day without struggling to stay awake. Taking nuvigil and ativan was for me an anti solution and created secondary issues. I don't want either extreme. I want as close to what I can make a new 'normal'.

I started with a full face mask. Thinking losing control of any portion of my face (mouth) would trigger me. But as I kept experimenting, I found the smaller masks can present fewer problems. Every mask has something that we have to learn to adjust to. And we do that by going in with a willing attitude and a committment to do it enough times that it begins to feel familiar (develop a new habit). Even with all my trial and errors, I love that extra oxygen. Still working on the numbers but at least now I can breathe.