Two months in - haven't adjusted to CPAP

[jjjmac]

I got my machine at the end of June and had some issues getting used to it at first. There were just some psychological hurdles to get over, but my boyfriend helped me get over those for the most part. I also know, even with there being things about CPAP that I don't like (lack of freedom, mostly), that the health benefits make it a necessity. So I've come to accept it and have been using it every night. At this point, the mask doesn't really bother me and the air pressure seems fine. I feel like I can breathe in and out just fine - no problems exhaling, etc.

The first two months, it just caused me to have terrible insomnia - something I've never suffered from before other than maybe 2x/year. So I'd try falling asleep with the mask on and I'd lie awake for hours... usually once it got to 90 minutes-3 hours, I'd take it off because I'd already lost so much sleep time. Obviously, this was very stressful! If I thought I was tired before, geez! When I went in to have my sleep data read off the card for the first time, I'd only had 4 nights out of 30 with more than 4 hours of data collected. Even with that little data, it did show the machine works when I'm able to use it. (Although, on each of those 4 nights, the time marker was just over 4 hours - so I can't even say I felt any better any of those few days because I still only got about 4 hours of sleep!).

And it seems relatively common for CPAP to cause more frequent "real" waking (as opposed to RERAs and apneas), and does that ever go away? Even when I fall asleep with it, I always wake up after 2-3 hours and usually can't fall back to sleep.

I talked to my neurologist and she suggested trying some Ambien to aid in falling asleep. I started taking that about 2 weeks ago (5mg). The first week, it seemed to work... this week, it doesn't seem to have any effect on me. I don't think that's all that unusual, but I don't know what to do about it?

Also, I should mention, that even when I fall asleep with the mask on, when I wake up, it's always off. I am removing it in my sleep (not by accident, and not by it being attached incorrectly). I have the full face mask (I know, you say, try the nasal mask - but I am always congested so it's not an option for me), so I have to be unlatching it. And I am doing this sometime before I reach the 4 hour mark, because I don't have any data recorded on the card at the moment. And I honestly, HONESTLY, have no recollection of taking the mask off, so I don't know how to stop myself from doing it other than tying my wrists down...and given that I'm already tethered with a hose, I'm not sure I can add more restraint. I do realize this probably means, subconsciously, that I haven't accepted the machine as much as I think I have! But, regardless, I commit to putting it on every night and trying it and I'm not sure what else to do. I was having this issue prior to the mask, in that I had begun removing my retainer at night. Now, I remove the mask but not the retainer.

Even if I can get the Ambien to work or switch to using another sleeping pill, I can't take pills to fall asleep for the rest of my life. And even when I do fall asleep, I still end up taking the mask off before it can do much good - so what's the point?

I'm really getting very discouraged. I am willing to stick this out at least 6 months and just hope I stop removing the mask at night or start falling asleep without pills (both, really), but I'm not sure my sanity can take 4 more months of getting even less sleep than I was before. I never call in sick to work - and I've been doing it a couple of times a month now due to just being too tired or knowing I can't handle the emotional needs of my staff. I think I'm going to have to go on FMLA if things don't improve asap.

I did get fitted for the dental appliance a few weeks ago, but it won't be ready until Oct. 1. I know they aren't as effective, and aren't effective for everyone, but I am pinning what's probably way too much hope on it that it will work because I don't know what else to do. Since I already have to wear a retainer, it seems like a good thing to try, so I only have to have one thing going on with my face/mouth instead of two. Now, if only I don't remove it at night once I finally get it. And I do know I'll have to go back to the sleep lab for another study to see if it's working sufficiently or at all.

The dental appliance I'm getting looks close to the one on this site, except blue and a little more bulky:
http://www.wilbankssmilecenter.com/dent ... treatment/

My neurologist is also leaving my insurance provider, and I don't know who I'll get assigned to, but that worries me too because my doctor was really understanding and encouraging (unusually so, for my insurance co). She did offer at one point to put on Adderall, though she didn't recommend it.... at this point, I'm almost willing to try it because I need to go to work. I'm not on any medication now except birth control, (recently) the Ambien, and sometimes Zyrtec for allergies. I've been trying not to take the Zyrtec very often and was hoping to go off my bc soon... so I really don't want to start taking more pills.

Has anyone else had a long time adjusting to CPAP? Was there anything that helped? And I doubt you'd be on this forum if so, but has anyone ever given up or tried something else with any success? Has anyone used the dental appliance?

[kteague]

It took me several months to start keeping my mask on at night. The first few months I think were because I was not at a therapeutic pressure. Even after getting my pressure right. I kept it on so few hours each night I think that prolonged my adjustment. At one point I put bandaids over the headgear and on my cheeks in hopes the pain of removing them would wake me up enough to stop. At some point it all became familiar and I haven't taken the mask off in my sleep for well over 5 years. My experience may not be the usual because my sleep at that time was also severely affected by limb movements that kept me feeling agitated and waking up frequently. When trying to fall back asleep I'd be too agitated to even tolerate the mask. But surely there's others who have had trouble like yours early on. Good luck with getting used to all this and getting on to sleeping good.

[Xney]

I woke up next to my mask over and over for about 6 months, no memory of taking it off. Just put it right back on, I even put it back on in the morning for a little bit, just to be in the habit. Eventually I started keeping it on throughout the night. It just takes a while.

[Butwanna]

I had similar problems 4 years ago when I started this, I gave up back then after I figured out that it was really the cpap that was "suffocating" me. But 4 years later and because I really still have the problem and my symptoms are getting worse I pulled it out again, read the manual myself and started over. Have tried two different types of masks, a full and a nasal (swift II). I realized the reason for some of ineffectivness/discomfort was not enough pressure and so I have raised it from 5 to 10. It is somewhat better BUT I still find a HUGE problem and that problem is really CO re-intake. After hours with it on I find I am simply getting suffocated. It is NOT clostrophobia (the excuse frequently made for this feeling of panic we get), it is real suffocation panic. So keep this issue in mind for yourself. I am going to try a little higher pressure but I just don't think the masks get rid of exhaled CO fast enough. And Good Luck 2 you.

[zoocrewphoto]

Have you talked to the doctor about the CO intake? I have honestly not experience this problem. And I have had my machine turn off 3 times. Two due to a humidifier error, and once to a power outage. The safety valve works great when the machine is off. And when it is on, the exhaust is strong. The only time I have trouble is when I have a big coughing fit. (I had a bad cough last month that was constant all day and night.

If the CO were really a problem, I would think that more people would be experiencing problems, and the masks would have redesigned. They can check our CO2 when we do titration studies, so this would have come up.

[sylvie]

I use the Somnodent, like the one you posted. I have severe obstructive apnea when left untreated (AHI=29). I was unable to sleep well enough with just the Somnodent alone, although many, I hear, do. I have to use the Somnodent with the PAP, but it is wonderful, since I can keep the pressure lower--and that, to me, is huge. I had to get the dentist to cut it down (all Somnodent dentists have a burr in their office), since I use it with a nasal mask and have to keep my mouth closed if the PAP is to work and not leak air. Basically, I was not disappointed for long to find out that I couldn't use the Somnodent alone, since I read that others also use oral appliances with their PAP to keep the pressure lower. A dentist told me that it is important to keep your mouth closed with the Somnodent, since it allows your mouth to open and your tongue could fall back and block your throat. But you can also get the dentist to add an attachment on the Somnodent which keeps the mouth closed. At least mine I had offered to do that. I keep my mouth closed with a cervical foam collar. I did not like the idea of having my jaws locked together. Hope this helps.

[n8ster]

I sometimes use Tylenol pm to fall asleep and stay asleep. Not in a habit forming way . maybe once a week or so to catch up. I have had several sleep studies and have noticed that the prescription is always just barely the right number so if I have any congestion at all it's not enough. So I have played with my setting and have found that 1 or 2 higher seems to help me sleep all night through. I think if your not getting enough oxygen your body will tell you to kick off the mask. its just my experience that if it feel right it probably is. If you feel like your not getting enough you probably aren't and if it feels like it is blowing your head off it probably is to much. Since most people gain weight over life and not lose weight, it only makes sense that your number will rise on your setting and vice versa if you lose weight .

[Todzo]

I got my machine at the end of June and had some issues getting used to it at first. There were just some psychological hurdles to get over, but my boyfriend helped me get over those for the most part. I also know, even with there being things about CPAP that I don't like (lack of freedom, mostly), that the health benefits make it a necessity. So I've come to accept it and have been using it every night. At this point, the mask doesn't really bother me and the air pressure seems fine. I feel like I can breathe in and out just fine - no problems exhaling, etc.

The first two months, it just caused me to have terrible insomnia - something I've never suffered from before other than maybe 2x/year. So I'd try falling asleep with the mask on and I'd lie awake for hours... usually once it got to 90 minutes-3 hours, I'd take it off because I'd already lost so much sleep time. Obviously, this was very stressful! If I thought I was tired before, geez! When I went in to have my sleep data read off the card for the first time, I'd only had 4 nights out of 30 with more than 4 hours of data collected. Even with that little data, it did show the machine works when I'm able to use it. (Although, on each of those 4 nights, the time marker was just over 4 hours - so I can't even say I felt any better any of those few days because I still only got about 4 hours of sleep!).

And it seems relatively common for CPAP to cause more frequent "real" waking (as opposed to RERAs and apneas), and does that ever go away? Even when I fall asleep with it, I always wake up after 2-3 hours and usually can't fall back to sleep.

I talked to my neurologist and she suggested trying some Ambien to aid in falling asleep. I started taking that about 2 weeks ago (5mg). The first week, it seemed to work... this week, it doesn't seem to have any effect on me. I don't think that's all that unusual, but I don't know what to do about it?

Also, I should mention, that even when I fall asleep with the mask on, when I wake up, it's always off. I am removing it in my sleep (not by accident, and not by it being attached incorrectly). I have the full face mask (I know, you say, try the nasal mask - but I am always congested so it's not an option for me), so I have to be unlatching it. And I am doing this sometime before I reach the 4 hour mark, because I don't have any data recorded on the card at the moment. And I honestly, HONESTLY, have no recollection of taking the mask off, so I don't know how to stop myself from doing it other than tying my wrists down...and given that I'm already tethered with a hose, I'm not sure I can add more restraint. I do realize this probably means, subconsciously, that I haven't accepted the machine as much as I think I have! But, regardless, I commit to putting it on every night and trying it and I'm not sure what else to do. I was having this issue prior to the mask, in that I had begun removing my retainer at night. Now, I remove the mask but not the retainer.

Even if I can get the Ambien to work or switch to using another sleeping pill, I can't take pills to fall asleep for the rest of my life. And even when I do fall asleep, I still end up taking the mask off before it can do much good - so what's the point?

I'm really getting very discouraged. I am willing to stick this out at least 6 months and just hope I stop removing the mask at night or start falling asleep without pills (both, really), but I'm not sure my sanity can take 4 more months of getting even less sleep than I was before. I never call in sick to work - and I've been doing it a couple of times a month now due to just being too tired or knowing I can't handle the emotional needs of my staff. I think I'm going to have to go on FMLA if things don't improve asap.

I did get fitted for the dental appliance a few weeks ago, but it won't be ready until Oct. 1. I know they aren't as effective, and aren't effective for everyone, but I am pinning what's probably way too much hope on it that it will work because I don't know what else to do. Since I already have to wear a retainer, it seems like a good thing to try, so I only have to have one thing going on with my face/mouth instead of two. Now, if only I don't remove it at night once I finally get it. And I do know I'll have to go back to the sleep lab for another study to see if it's working sufficiently or at all.

The dental appliance I'm getting looks close to the one on this site, except blue and a little more bulky:
http://www.wilbankssmilecenter.com/dent ... treatment/

My neurologist is also leaving my insurance provider, and I don't know who I'll get assigned to, but that worries me too because my doctor was really understanding and encouraging (unusually so, for my insurance co). She did offer at one point to put on Adderall, though she didn't recommend it.... at this point, I'm almost willing to try it because I need to go to work. I'm not on any medication now except birth control, (recently) the Ambien, and sometimes Zyrtec for allergies. I've been trying not to take the Zyrtec very often and was hoping to go off my bc soon... so I really don't want to start taking more pills.

Has anyone else had a long time adjusting to CPAP? Was there anything that helped? And I doubt you'd be on this forum if so, but has anyone ever given up or tried something else with any success? Has anyone used the dental appliance?

Hi jjjmac!

First of all, I simply have to say that I admire your fortitude!

A couple of simple things to help (cheap, fast, likely to help):

1. Raise the head of your bed a couple of inches. A couple of concrete bricks from a building supply place should help with this (under $5). Why - well for two reasons. They have found that Obstructive Sleep Apnea (OSA) appears to cause a nighttime of migration of fluids from the lower body (think feet) to the upper body (think nose, indeed they call this "Rostral Fluid Shift"). I think this simple move is likely to use gravity to reduce this tendency. Second, OSA is often associated with the likes of Gastroesophageal reflux disease (GERD) which, if present, will cause the upper airway to become irritated and so make for more OSA. I do know personally that gravity by raising the head of the bed does help with this.

2. Learn to breath quietly and then train with your machine during the day - breathing quietly. Constant Pressure at the Airway Passage (CPAP) means that it is easier to breath in. The muscles to breath out are exercised by talking and what not and so tend to be strong. So if we breath in more we tend to use more air. If we start using enough air to wash out our necessary CO2 - we vascoconstrict - we have oxygen transport problems - some of our cells starve - and somehow this all tends, in some, to make more air hunger so we breath even more! This may be why you find your mask off so often at night. This is not good for your body so your body rebels as it should. In my case I have even taken to using a pulse oximeter to find the optimal level of breathing by finding the lowest heart rate while holding exertion constant. I do, from time to time train this way with my CPAP during the day and often as I go to sleep at night. Do always start your night breathing quitely - take the time to slow down and move into silent slumber.

3. Good news! SleepyHead works with the Mac!! You can find it at Sourceforge. I would take a lot of time to read the instructions and look specifically for problems with installation if I had a Mac because it is such a sub set of those who use SleepyHead. When you do get it going you then have feedback and will better know what you are actually dealing with that makes you take off the mask all the time. I think feedback is essential to use PAP!

I have many more "tips" and such if you are interested.

May you find restful nights soon!!!!

Todzo

[snuginarug]

Has anyone else had a long time adjusting to CPAP? Was there anything that helped?

I was cursed with a horrible sleep doctor. I kept taking my mask off in the night, told the doctor this, he had zero suggestions. Went to a new doctor, told him I was taking my mask off in the night. He explained to me that if I was still having events due to a too low pressure, I would feel suffocated, associate the suffocation with the mask and take the mask off in my sleep. What do you know, after using the machine in APAP to determine a good pressure, he upped my pressure from 8 to 12. I am not taking off my mask anymore.

This is not necessarily your problem, but getting SleepyHead and looking at your data can help you eliminate or confirm that particular problem.

[The Sheikh]

This is not necessarily your problem, but getting SleepyHead and looking at your data can help you eliminate or confirm that particular problem.

Yes, looking at our own data is key to improvement.

It's also true that we need to convince the brain that the mask is our friend. (As eloquently stated by another poster)

The first few nights on CPAP I had panic attacks and couldn't keep the mask on for more than a minute. I felt like I was being waterboarded and suffocating. But now I think it was because the brain associated the mask as the source of suffocation because I had the wrong therapy, wrong machine. In reality, these panic attacks would occur on many nights EVEN without a mask. I have bad central apneas where I stop breathing for a minute. The brain was probably telling me NOT to go to sleep because it knew I was having trouble breathing, thus the panic attacks.

But get this - after getting the right machine for cental treatment (an ASV type) after the second night I was able to sleep the WHOLE night with the mask on. My AHI index dropped to around 0.0 most nights. No apneas at all! I now fall asleep within 5 minutes and have no hint of panic attacks. The brain has indeed found the mask is its friend and has accepted in fully. I actually look forward to going to sleep now instead of worrying if I will suffocate and not wake up.

Bottom line, is to have faith that if your treatment works at all, your brain will recognize this soon and gladly let you keep that mask on all night. The human body WANTS to live. When you are using it, keep repeating, "The mask is my friend" and the subconscious will accept it eventually. This is assuming the treatment is really working. If not, like trying to mistakenly use a CPAP machine for central apneas, the brain will not be fooled and reject the mask as it well should.


If you haven't already, read my thread and see how I stumbled until I started analyzing my own data - and the surprising results when everything finally clicked. Become proactive, as you are doing, and you will surpass anything a DME can do for you.

viewtopic/t81612/ASV-RESULTS-and-Charts--Success.html

T

[the_nap_ster]

Hey there,

First of all, I want to echo what a lot of other people have been saying: good for you! Good for you for hanging in there and trying, even when it's hard. Because it is hard. But you are doing what you have to do in order to take care of yourself, and that deserves recognition.

Second, a few suggestions.

1.) I know you have congestion and use a FF mask, but it may be that THIS FF mask isn't working for you. There are MANY FF masks to try, and sometimes it takes messing around with a few different ones to find the one that doesn't bother your sleep. It took me trying over 15 masks. I am an extreme case, but honestly, finding the right mask for me made my sleep quality 100% better. (I personally hate most FF masks and love my hybrid. Some people rave about the FitLife. Lots of choices in masks, even if you eliminate nasal ones!)

2.) My husband does the "pulling mask off in his sleep" thing too. He got into a habit of doing this for the first few months, and it was a hard habit to break. Here's what we did: we took two pieces of medical tape and stuck them over the straps on each side, against his cheeks. Not much tape -- didn't want it to be hard to remove in the morning. But enough to give him a little trouble if he tried to take it off in his sleep. It woke him up a few times when he tried to take his mask off, and served as a reminder to leave it alone and go back to sleep. It's just about getting your body used to a new physical sensation while you're asleep.

3.) Your pressure may not be set at therapeutic levels. I think this is more common than people realize. The only way for you to know is to look at your own data. Download sleepyhead and see what the software says. Tweaking this may make a world of difference for you.

4.) Keep hanging in there. It does take time to get everything right. For many of us, it takes more than a few months. It sucks, but the health risks are so serious that it is worth it. And if you are willing to keep ironing out wrinkles and finding solutions (with the help of the members of this forum!), you WILL find something that works. And you will feel so much better for it.

[ozze_dollar]

This is not necessarily your problem, but getting SleepyHead and looking at your data can help you eliminate or confirm that particular problem.

Yes, looking at our own data is key to improvement.

It's also true that we need to convince the brain that the mask is our friend. (As eloquently stated by another poster)

The first few nights on CPAP I had panic attacks and couldn't keep the mask on for more than a minute. I felt like I was being waterboarded and suffocating. But now I think it was because the brain associated the mask as the source of suffocation because I had the wrong therapy, wrong machine. In reality, these panic attacks would occur on many nights EVEN without a mask. I have bad central apneas where I stop breathing for a minute. The brain was probably telling me NOT to go to sleep because it knew I was having trouble breathing, thus the panic attacks.

But get this - after getting the right machine for cental treatment (an ASV type) after the second night I was able to sleep the WHOLE night with the mask on. My AHI index dropped to around 0.0 most nights. No apneas at all! I now fall asleep within 5 minutes and have no hint of panic attacks. The brain has indeed found the mask is its friend and has accepted in fully. I actually look forward to going to sleep now instead of worrying if I will suffocate and not wake up.

Bottom line, is to have faith that if your treatment works at all, your brain will recognize this soon and gladly let you keep that mask on all night. The human body WANTS to live. When you are using it, keep repeating "The mask is my friend" and the subconscious will accept it eventually. This is assuming the treatment is really working. If not, like trying to mistakenly use a CPAP machine for central apneas, the brain will not be fooled and reject the mask as it well should.


If you haven't already, read my thread as see how I stumbled until I started analyzing my own data - and the surprising results when everything finally clicked. Become proactive, as you are doing, and you will surpass anything a DME can do for you.

viewtopic/t81612/ASV-RESULTS-and-Charts--Success.html

T

I also have the same machine. It does a great job.

[jjjmac]

Thanks for the replies, everyone. It does help to knw others have taken a while to adjust.

There is Sleepyheads for Mac, but the last I checked, it's not compatible with my cpap machine - yet. I figure that it won't be too long before it is though. BUT, if I'm not keeping the mask on for at lesst. 4 hours, then there isn't really any data to analyze is there? Or not enough of it to be helpful, I'd think? I am supposed to go back to the sleep lab in about 2 weeks for a data drop, but I'm probably going to postpone the appointment since I know there's next to no data to download (even less than the 4 days above 4 hours that I had last time).

I will admit that I've had less patience with keeping the mask on when I don't fall asleep in the last two weeks, since getting measured for the oral appliance. I want that to work so badly, but I know the odds are really against it. But thinking it might work is the only thing that's made me feel better since starting this whole thing (which it was actually Feb. when I started this pursuit, but didn't get the machine until June). My main issues are more RERAs than apneas, so I hope the oral appliance is enough. The idea of having to use both the appliance and the cpap is pretty horrifying! Original post with sleep lab results: viewtopic.php?f=1&t=79806&st=0&sk=t&sd=a

I've also had a lot of dental isssues in the last year or two....nothing really my fault, or caused by not caring for my teeth - just bad luck and poor genetics. So I think removing the mask might be due to my body just having had enough of anything to do with my mouth!

I will try raising the head of the bed a little. I'm not sure what to do about trying another mask. My insurance co. only offers one other FF mask, and it was much larger...can't really see myself liking that any better. The mask I have now, I feel comfortable with, breathing wise, and it seems to have few leaks....as long as I don't really turn at all. I am wondering if the mask itself should be a medium instead of a small? It seems to fit for the most part, with few leaks as I said, so it's probably fine..but it does seem to push on my nasal passages just enough to be bothersome, though I have gotten more used to that.Nin any case, I think I am "breathing quietly" and I do start out with the "friend" mindset, but after an hour of still being awake, and of knowing I have to get up for work without that hour of sleep, well, "friend" kind of goes out the window.

The ambien was helping a lot with that - being able to fall asleep with the mask on, and without stressing about it. But I think I need to stop taking that. I was really dizzy today, and a few other times, and it's probably from the Ambien. So I didn't take it tonight, spent an hour trying to fall asleep with the mask, ended up crying, getting up, and coming downstairs to type this all on my iPad (so, excuse the typos). At least I don't have to work tomorrow.

Also, I keep the humidifier on max (5) but I still will wake up with horrible dry mouth.

[Mundy]

I had a similar problem with insomnia at first. I forced myself to have the mask on for four hours even if it kept me awake the whole time. After the four hours, I took it off and went to sleep. I tried many suggestions from here on this board like cutting out all caffeine, not allowing myself to take naps, etc so I was exhausted when I went to bed. I think they all helped but the turning point for me was when I set the machine to give myself more exhalation relief. Before that I felt like I needed to push the air out.

You might see if you can get something for the congestion too. I used to be a mouth breather at night due to congestion but found that the airflow helped keep my passages open. I have a hybrid mask that I use when I'm feeling more congested. I try to breathe through my nose as much as I can with it to help with mouth dryness and to try to keep air passages open. Before I go to bed I use a nasal saline and lately I've been able to use a Swift fx mask much of the time. I like that so much more than the other masks. Surprisingly I can keep my mouth closed without a chin strap or other 'help'

[jjjmac]

Based on the few days of data that got collected last month, the tech said my machine settings were correct (and it feels correct). I just can't fall asleep with the mask on or keep it on when I fall asleep with sleeping pills.

I was thinking that maybe I'd try just sleeping in the mask, without the air being on/the hose being connected for a night or two? Maybe that will help me figure out if it's just the mask I have a problem with, or if it's the air pressure? I don't know.

Looking at my sleep study results, almost all my problems occurred when I slept on my back, and some on the right side, but hardly any when sleeping on my left side... well, at home I sleep on my left side 90% of the time. I only slept on my back and right side for the study because they told me to. I do roll over at home and end up in those positions sometimes though. I wish I didn't have to wait a darn month to get it! argh.

I have tried things for the congestion... different antihistamines, different steroid nose sprays, sudafed, using neti pots/saline rinses.... the different drugs seem to help a bit, but don't get rid of it completely. The nasal rinses help for about 30-60 minutes afterwards and then it's back to usual (which is, chronic cough). My dad has this problem too... not sure what causes it (chronic rhinitis) and sinus scans a few years ago came back normal. So I've pretty much accepted the congestion as a way of life at this point, but I think it probably does contribute to the apnea in some way?