Need help - 2 years with CPAP and unable to sleep

[needsomesleep28]

If anyone can help, I would appreciate it. I've been struggling with CPAP for about two years. In general, I'm a very light sleeper, slight movements and sounds will wake me immediately. It is also difficult for me to fall asleep without CPAP. As such, it seems impossible with it. I am definitely more of a side sleeper, but try to sleep on my back because it seems to work best with the mask.

While using CPAP, sometimes I can sleep for a maximum of 3 hours, but still wake intermittently. I usually wake up about 2am with a dry mouth. At that point, I CANNOT fall back asleep with the mask (if I take it off I fall asleep pretty quickly). I've tried taping my mouth in case I'm mouth breathing, which I think is a possibility, but tape and larger masks make me feel extremely uncomfortable. Even with waking up after a few hours, if I could fall back asleep with CPAP in the middle night, it would help.

In two years, I've never slept a full night with CPAP. I've tried three different masks - definitely prefer the nasal pillows. I don't like meds... I saw an ENT who suggested surgery. He seemed to think I could benefit from various changes to my uvula, tonsils, and septum, but I've never heard anything good about the results of surgery. I really want to make CPAP work, but I've been at this for a while, and it is getting to be too much work without with any benefits.

Please let me know if you have any suggestions. Thanks

[Guest]

I have had great success with the Circadience Sleepweaver mask. It is a nasal mask made of fabric.

[suaug]

Surgery should definitely be the last resort, but if you have other obstructions to your breathing, the CPAP machine will not correct those. My husband had the uvula removed and his deviated septum corrected. It did wonders for his breathing! It might be time to go with a trusted ENT doctor! Good luck and get healthy. You won't believe the difference a good night sleep gives you!

[Julie]

If you wake with a dry mouth, you're most likely mouth breathing while asleep, which means you lose all the Cpap air and don't benefit from it. Try taping for a couple of nights and see if it helps, then (if so) look at full face masks to find what fits you best. And try to stay off your back - it allows the most apneas to surface.

[DreamOn]

Hello and welcome to the forum! I hope that you'll find the information and support here that you need to solve your sleep problems.

I see that you have a Respironics M Series Plus C-Flex CPAP machine. Unfortunately, this machine is not capable of reporting data such as AHI and leak rate, so that does make troubleshooting more challenging. It does sound like you are mouth-breathing/leaking, as evidenced by dry mouth. If you are losing too much therapy air due to leaks that will prevent you from getting the full benefit of your therapy. Since there's no way to tell from the machine's reporting what your leak rate may be, it's just going to take some trial and error to eliminate that.

I can understand your preference for nasal pillows masks. I find those to be the most comfortable too. What is your prescribed CPAP pressure? I solved my mouth leaks by using a PAPCap chin strap. It doesn't work for everyone though. My pressure is quite low and my mouth leaks weren't enormous, so that may be why it has worked so well for me. Some people use both a chin strap and mouthtaping. The only other solution to mouth leaks that I'm aware of is using a full face mask. There are also two "hybrid" masks, which have both nasal pillows and a cushion that covers the mouth. The InnoMed Hybrid seems to be working well for many: https://www.cpap.com/productpage/RespCa ... -Mask.html.

You could try experimenting with humidifier settings (both higher and lower or off), to see if that makes any difference.

It's entirely possible that your machine pressure isn't correct, and that's why you're not doing well enough. Many of us adjust our own machine pressure, but it can be very difficult to get that right when your machine cannot give you any results feedback. It's not likely that your insurance (if any) will pay for a new machine so soon, but if you can afford it you may want to consider purchasing a machine that's fully data capable. Here's a list of machines that are fully data capable, as well as the ones that are not: viewtopic.php?p=307168#p307168. You'd want to avoid the ones in red. The ones in blue are the better ones, and the APAPs would be best since you can use them to "self-titrate" to see what your optimal pressure may be.

Since you've been using CPAP for two years without success, perhaps it's time for a new titration sleep study to see what your current pressure needs are. You should also review your original sleep study results, to see if there were other sleep problems noted, such as periodic limb movements. It may be that there is something in addition to sleep apnea that's waking you up.

I hope this helps you. Please let us know if we can assist you further.

Best wishes,

DreamOn

[needsomesleep28]

Thanks for your response. I have moderate sleep apnea and my pressure is at 10.

[DreamOn]

Thanks for your response. I have moderate sleep apnea and my pressure is at 10.

I have mild/moderate apnea myself (depends on my sleep position). The untreated sleep apnea did a lot of damage to my body/brain over the years, and I've been amazed at how much better I feel with effective therapy. Don't give up hope, and keep working at solving the challenges one by one!

Your pressure isn't all that high. It's possible that a good chin strap may help you. Have you tried that yet? Like I said, the PAPCap has worked well for me: http://www.pur-sleep.com/products/produ ... category=6. Some people still need to tape even with a chin strap, but that hasn't been necessary for me. Other than that, my only recommendation for mouth leaks would be to try a full face or hybrid mask. Getting the proper size is very important and all the models fit differently, so try on as many as you can if you have a local DME supplier--under full pressure, while lying down.

As I mentioned, your problem could also be due to incorrect CPAP pressure. They don't always get that correct during the titration study, and our pressure needs can vary over time (weight changes, aging, etc.). And many people continue to have problems due to periodic limb movements, medications that can interfere with sleep architecture, or other factors. If you don't have it already, be sure to get a copy of your sleep study so you can understand if there are any other sleep-related problems that may account for your frequent awakenings.

I sure do hope you find something that works for you. We all know how miserable it can be when we don't get restful sleep!

[kteague]

Two years is a long time to be struggling with ineffective treatment. If getting a data capable machine is not an option right now, short of a sleep study, you could ask your doctor to order a 2 week home trial on an auto titrating machine to see if 10 is indeed adequate pressure for you. I did that at one time. If 10 is not adequate, that could account for continuing difficulties. However, before going to those lengths, resolving any mouth leaks or breathing could prove to be sufficient. There are tips on the board for tweaking different masks and for altering sleeping pillows to better accomodate masks, it can take some trial and error to find what works. I personally feel I would rather find a way to sleep in my accustomed position rather than force a switch unless there was no choice. Is there any chance you're on any meds that can cause sleep problems? And to reinforce what was posted prior, limb movements can be a cause of continued poor sleep even when cpap is working. Just from having walked this path of having trouble with cpap treatment, it's probably most practical to go back to the basics and methodically rule out problems, to me meaning first addressing mask leaks and mouth breathing, then if need be possible pressure issues (with data confirming when treatment is therapeutic). Doing that can avoid a wild goose chase looking for outside causes, and the flip side is it can confirm the need to look outside OSA for additional contributors. Hopefully you can now break that two year streak, and start counting the weeks, months and years of effective treatment. Best wishes.
Kathy

[montana]

Get a regenesis buckwheat pillow . They are heavy and don't move. Put it to your back so you sleep on your side. And yes dry mouth means mouth leak. You may have to try some full face masks and turn down humidifier to 2 or so.

[mdintx]

There are several things you can try:

1) The PapCap as previously suggested.
2) A hybrid mask such as the Liberty or Hybrid (see cpap.com)
3) A different nasal pillows mask such as the new Swift FX and tape that it comfortable.
4) Working at reducing your reactivity to stimuli (noises/sensations)

Good luck...

[SleepingUgly]

4) Working at reducing your reactivity to stimuli (noises/sensations)

Do you have a recommendation for how she could do that? I can't imagine, but I'd be the first to line up for that treatment.

[DreamOn]

4) Working at reducing your reactivity to stimuli (noises/sensations)

Do you have a recommendation for how she could do that? I can't imagine, but I'd be the first to line up for that treatment.

It depends on the stimuli. Earplugs if sound is a problem. My husband is hypersensitive to sound and has used them every night for years. Room-darkening window treatments/eye mask, if light is the issue. I use a sheepskin mattress pad, which moderates body temperature, is very cozy, and helps with discomfort from pressure points that can awaken some people.

[DoriC]

I'm really sorry you're still struggling but with an auto data-capable machine you could know pretty quickly if you're leaking, what your AHI is, if you need to adjust pressure. You could do a self-titration with a range of pressures to get a good idea of what your needs are. You would need the software as well although you can get some data from the machine's LCD screen. You might also need to experiment with a different mask, FF if you mouth breath. The right bed pillow is also important. After you do some research here you might check the cpapauction site or Craig's List for good deals.

[mdintx]

4) Working at reducing your reactivity to stimuli (noises/sensations)

Do you have a recommendation for how she could do that? I can't imagine, but I'd be the first to line up for that treatment.

It depends on the nature of the sensitivity. One could be a light sleeper out of hyper vigilance. Where that stems from can be different for each individual; fear of harm, a sense of protectiveness, a negative attitude. All these things can prime one to be on alert. Understanding the attitude can help to develop a strategy to modify it and be more calm.

Sometimes, it's physical. As previously recommended, ear plugs can help. Darkening a room (my last apartment was SOOOO bright from the lights in the complex). Things like that...

[ww]

I have been a CPAP user for two years also. Fortunately, I was able to solve the exact same problems with the help of many people in this forum.

A $10 box fan from Walmart directed away from you will most likely keep you from being disturbed by any sounds.

You need to get a full face mask such as the Ultra Mirage Quattro to solve the mouth breathing problem, which is of utmost importance and is keeping your from actually getting the therapy you should get from your pressure setting. Taping your mouth shut may be a viable option until you can get a full face mask. CPAP auction is an inexpensive place to get a Full Face mask IF you know what size to get.

Sleeping on your side is much preferable to sleeping on your back and you can do it with the mask you have if you take a foam pillow and cut a big semi-circular cutout on each side of your pillow so your mask will not touch your pillow when you are sleeping on your side.

Stay at it and post daily until you get this figured out to your satisfaction!!!!!