What to do?

I fall asleep very easily with my cpap mask on and like clockwork, every night, I rip the mask off while I'm still asleep, or awake to the point I don't remember. I've never once, in say 11 total months of trying, been able to keep it on asleep all night. I'm posting on a forum because I don't have much help from professionals. I really don't know what else to do. I'm not even sure if the cpap works for me, because I can't keep it on. Sometimes, I know I need to keep the mask on so much, that I'll rip the hose off, and just sleep with the mask on without pressure. Lol - I'll wake up thinking, "Yes, I kept it on all night," to look down, "All, dammit".

The professionals have me on pressure 6, but I've tried all pressures for more than enough time to see if they work. The very few times I actually wake up and catch myself taking it off, I'll force myself to keep it on, and struggle to fall back asleep for the next 3-4 hours. I may eventually fall back asleep for maybe a half hour after struggling. I almost never wake up, though, when I'm taking it off. It's a guarantee that I'll wake up with it off after easily falling asleep. I don't even try any more. It just feels like a waste of time. Oh, did I mention, life without sleeping normally, or sleeping like I do, really, really sux, to the point where I really can't even explain how much it sux! I desperately want this to work! What should I do??

Calm down, Honestly I mean it.

It seems like you have a lot of anxiety about the gear and the machine. This has become a "habit" so now in sleep it carries over. You have been through the Doctor grind and seems like you have tried a lot of things but haven't got any place so your pretty desperate. You can do this. Take a deep breath and forge on.

First things first, post your titrated sleep study recommended pressure, that will give us a place to start. Second, I started out with your machine and self titrated on it by feel. So I know the machine. 6 cmh20 seems pretty low as 4 is the lowest setting so that's why I am asking for your Sleep study pressure.

As to how to stop yourself from ripping off the mask? Well, its called practice. When ever your home and using the computer, watching TV, Listening to Audiobooks/music, just sitting around I want you to wear the mask and use the machine. WHAT !??? Yes just use the darn thing awake you wont get a medical benefit from it but what you WILL DO is work through and get over your anxiety in regards to your mask and the machine as well as the sounds it makes. Use it as much as you can during the day for a week or 2. Slowly over time your mind will adjust to the gear and you will get over it and your subconscious mind will also get use to it and you will stop pulling it off. The hose also might be to short so get a longer one. After you get use to the gear and post your Study pressure we can talk about pressure settings.

You might try a chin strap that fits over the mask straps. or...try taping the straps to your face so they do not come off easily.

Thanks for you post. It's hard to be calm when you haven't sleep good in four years. Every day is worst than the last, and worst part it just seems there's no way out. I have tons of anxiety and it's all from being so fatigued for so long.

I slept once at the hospital with a data machine and it said my average was a pressure at 11. This wasn't a sleep study; I just slept with the machine, and I actually got 5 hours. I've barely been able to sleep to actual sleep studies. I, also, tried the 'wearing it during the day' for 60 straight days and nothing every changed at night.

You might try a self hypnosis recording.

Here is a place that has them. They have one for sleeping deeply to help with sleep problems.
I think they also have some for anxiety which I believe is causing you to take your mask off.

http://hypnosisappstore.com/

I got one for total relaxation and I really like it.

Pretty inexpensive too. I think it only cost me $2.99 as I recall.

Nate,

Using a Cpap is probably one of the most unnatural thinks for a person to get used to. The only way that you will ever be successful is if you stop looking at the negatives and accentuate the positives. You have a means to relieve your sleepiness, and with a little work will start feeling better soon. There are many people here who can help you get started but first you have to help yourself! Changes should be made in small increments, and you should give it time before making any new ones. Here is what I would do.

1 find out what pressure gives me the best therapy and leave it there until you are used to the pressure and wearing the mask all night.

2 There is a ton of information on this site that can help you help yourself and many people here more qualified than me to help you tweak your therapy and become successful in your quest for better sleep. Post your questions and learn.

3 stay positive and look at each problem as a challenge and reward yourself as you overcome each of those challenges.

I was like you when I started my therapy and at that time there was no internet and little to no support. As tired as I was there was only one solution, get used to my Cpap or wither away and die at a young age. Good luck Taz

Thanks Willie. I willing to try anything and I'll give this a try.

Nate,

If you've had the same machine since 2009, consider upgrading now to a fully-data-capable auto. If you have been compliant (4+ hours per night for almost every night), your insurance may help you pay for it. Many people have had great success with the S9 Autoset. (Click my avatar for further details.) While the Remstar was a good machine, it's not nearly as quiet or adaptable as the S9 Autoset. It may even be worth getting a new lab titration, since it's been so long. Hint: don't go to the same lab you went to. If they put you at 6, but an auto titrated you at 11, they don't know what they're doing. Get suggestions for other sleep labs from cpaptalk users near you.

If this were my pressure and I knew that an auto had me titrated at 11 for overnight hospital observation, I would certainly not depend on a pressure of 6 to give me therapy. In fact, at 6, I'd feel like I wanted to tear the mask off because I couldn't breathe. Sound familiar? After my very first titration, I was sent home with my machine set to 7. I couldn't breathe. It took me months to realize I needed to crank it up.

It really helps to have a data machine because you'll be able to check trends in large leaks (most important) and then self-titrate to get the optimum pressure regime for your current machine. It also helps to make sure you have the right mask. For instance, with a data-capable machine, you'll be able to find out if you're mouth leaking. Mouth leaking may not show up at low pressures like 6, so you've already got that against you. If your pressure should be 11, then mouth leaks will more likely show up at that pressure. If you are mouth-leaking, you may want to consider trying a full-face mask.

When the doctors don't have answers, many of us take our therapy into our own hands. I hope you'll find decent sleep soon.

Nate, just as a tip, I downloaded the mp3 file and then transferred it to my Sansa Clip player which is very small and easy to use with earbuds while laying in bed.

Here's a link to Sansa Clip players in case you don't have something similar.
I have the 8GB model but you wouldn't need one that big necessarily.

http://tinyurl.com/32axcaa

Thanks for the post Dream, but no insurance though.

Nate154 wrote:Thanks for the post Dream, but no insurance though.

Nate, I'm curious. Did you get your machine in 2009? I seem to remember it being phased out before that. Is this a second-hand machine?

Bought it used off Craigslist.

Nate154 wrote:Bought it used off Craigslist.

Okay, working with what we've got, this is what I would do if this were my machine*:
I know that this machine has some data, since it's a plus. We can still make use of that data.

First:
I make sure I have the correct altitude and pressure settings:
viewtopic.php?p=176769&highlight=remsta ... x+settings
If I don't have a manometer, I don't have to do the fine-tuning on the pressure.

Second:
1. Keep a journal of my nightly AHI. Just write it down every morning of the LCD, plus the weekly average, if that's available.
2. If separate apnea and hypopnea readings and leak data are available, I'd write them down each morning too.
3. If my mask were over a year old, I'd consider buying a new mask. If you cannot afford that, consider buying a mask from a friend in a local cpap users group. It's easier to determine large leaks using a full face mask, so I would consider getting a full-face mask. Some very nice person on this forum might even send you a slightly-less-worn, second-hand mask to try or keep, if you need it.

Third:
Since I have reason to believe my pressure on an auto was 11 under previous hospital conditions, I'd seriously consider upping my pressure to at least 10. Then I would try on the mask for a couple hours while awake, reading or sitting up watching television. Whatever it takes to get used to having the mask while awake could make me feel more comfortable having it on at night. I'd also get used to feeling what large leaks feel like. For instance, as my cheeks relax while I'm reading, perhaps air starts blowing in my eyes, going around the edge of my mask, or leaking out around the bridge of my nose. I'd play with the strap adjustments of my mask until this stopped. By actively wearing the device while awake, the idea is that you're making your subconscious understand it's okay to actually wear the device. This may help reduce the likelihood of subconscious-night-mask-removal.

Address Large Leaks:
The next step would be for me to relax on the bed in positions I'd be likely to sleep in. Really relax my facial muscles to see where any natural large leaks might come out and adjust my straps accordingly. If I can't afford a chin strap or a papcap, I would use a rolled up hand-towel under my chin to keep my mouth closed while the mask is on. It's really important to get rid of all large leaks before playing too much with pressure changes because I'm not getting therapy or a correct reading on AHI until large leaks are under control.

After my large leaks are under control: Self-Titrate!
If my AHI is not below 5 after about a week at a pressure of 10, I would then raise my pressure to 11. As I approach an AHI of 2 or less, I would decrease the increment by which I raised the pressure, perhaps by 0.2 cm increments. If I start seeing a drastic rise in AHI after raising the pressure, I would realize I'm now likely seeing central apneas and that I need to reduce the pressure a little. Of course, it's best to just look at the average AHI for the week when considering this kind of self titration.

Others may chime in with caveats. I hope I've hit the highlights. I hope this helps.

*I am not a doctor and cannot prescribe anything. I'm just suggesting what I would do given the same circumstances. What you do is entirely up to you.

A lot of good info here for you.

If the auto went for 5 hours and reported 11 then yeah 10 is a good place to start. I have Severe OSA and for me if its under 14 I feel like I am struggling to get a breath when laying on my back. Yes, side sleeping might be better but my thoughts when I was doing this was if I was in the worst position and I at least felt comfortable it can't be bad. If this was my machine I would start at 10, put on the mask in a seated position, take care of any leaking and then lay down on my back for about 10 or 15 minutes and just breath. If I felt uncomfortable IE needing air I would up the pressure by 1 or 2 and do it again. When I first did this on my Old Remstar I got to 14 and felt ok and could breath easily without feeling like I wasn't getting enough air. I then tried this setting for 2 weeks and the night time trips to the bathroom went from 5 to 8 down to 2 or 3 a night. I knew I was on the right track so I turned it up to 15 for a week and it went down to 1 or 2 night. I then went to 16 and the bathroom trips stopped during the night and the headaches in the mornings slowly went away. I used the Remstar plus for 3 or so months at 16 until I found someone willing to loan me the 600$ for the Remstar Apap with data. I then confirmed that 16 was my pressure. Later after I got medicare/medicaid I had a PSG and for 2000$ again confirmed for my sleep Doctor that my pressure was indeed16cmh2o.

You can do this as well but until you can wear the mask consistently at night there is no way to figure out a pressure for you without getting an Apap or going to a Doctor and getting a PSG. You have to work on breaking through the anxiety. I really like the MP3 player idea and if nothing else I do use Ear plugs as I have roommates that like Bass and they can be bought at Wal-Mart for 40 for like 2 bucks. This kills any machine noise except large leaks on the hose that come through as vibrations. Good Luck and keep trying.

If many of your wake-ups are from mask leaks, a mask liner may help.
Just take an old, soft t-shirt, cut out a gasket a half inch larger all around than the cushion to your mask.
Fold in half and cut a hole in the middle just barely big enough for your nose and mouth (it will stretch)
Fabric quiets the noisier leaks--especially on warm nights when perspiration happens.
Quite a few liners can be made from one shirt--you can even plan around pre-existing holes.