Help Please! I can not sleep

[tonycog]

I just spent night #5 with my bi-pap machine. In 5 nights, I have about 15 hours, at best, of sleep, only because of Ambien. After about 3 or 4 hours, the Ambien wears off and it's back awake.

I was diagnosed with Central Sleep Apnea with Cheyne-Stokes respirations. I am an otherwise-healthy 42 year old. I have a Respironics Auto SV Bipap. My initial pressure settings are: IPAP=10-20; EPAP = 10; Backup Rate = 12.

I have tried 5 different masks. All 3 of the full-face masks have leak issues that wake me up. I will seem to get it right, doze off, and within 5 minutes get a loud-flapping sound that completely wakes me up.

I have tried 1 nasal mask and 1 nasal pillow. My mouth comes open and the sound/feeling of rushing air out of my throat wakes me up. I have tried a chin-strap, but it's no good. It won't keep my lips together. I have tried denture adhesive strips to glue my mouth shut, but once the Ambien wore off, I have air leaking out and my "sleep" was finished.

I have been told "hang in there" and have tried to. In each of these episodes I 'hung in there' for between 4 to 6 hours, either trying to sleep, relaxing but not sleeping, finally dozing off for a couple of minutes only to have air leaks wake me up.

I can not sleep without a mask. The apneas wake me up gasping for a breath within minutes of dozing off.

My DME provider is getting close to the end of her list of options and I truly do not know what to do. I can not sleep and there is nothing that I even want to do except to sleep. But I can't. I have tried for hours at a time. There is nothing more frustrating than being completely exhausted and then finally dozing off only to be awakened within 3 or 4 minutes by a big air leak.

Help please and thanks,
Tony

[alnhwrd]

Tony,

Making sure that your face and mask are clean, and that you have the right size mask and that it is adjusted properly will solve most leak problems. But if you have done all that and are still having problems, here is something else you can try. I use a product called Mack's Silicone Ear plugs, and it was a godsend for me. You can buy it at most pharmacy/variety stores (Walmart, Walgreens, Rite-aid etc). It is sold as a soft, moldable plug to keep water out of the ear while swimming or as hearing protection, but you can also use it as a sort of gasket between your face and the mask to stop or greatly reduce leaks. It is sold in a six or twelve pack of small lumps of the silcone substance. Take one lump, break it in half, then roll the piece between your hands until it forms a rope about 1/8 inch thick. Do the same with the other half. Then take the ropes and lay them on the mask cushion wherever it contacts your face. Continue all the around the cushion, connecting the ropes by butting them up against each other until you have a gasket that goes all the way around the cushion. Then just put your mask on like usual and kind of smoosh it down on your face. I use a Ultra Mirage Full Face sometimes and this works pretty well with it, as well as on my nasal. I hope that this helps you and you can get to sleep soon!

[tonycog]

Thanks for the idea. I'm trying yet another mask tonight (this makes about 6 I think). It is called a "hybrid" style. I laid down with it this evening in my own bed for about 30 minutes and never had any significant leaks. I did not manage to fall asleep as I hoped, though. I guess I'll do another Ambien tonight and hope to find 6 or so hours of sleep.

[eudofair]

Yes, it is easy to have these problems. I've been able to sleep for a number of hours by
A. Padding the mask with Silicone Putty as recommended above. Another brand is Microban BioEars.
B. Fitting the mask at the highest pressure setting. That is temporarily setting the machine to CPAP only, max pressure and no ramp, fitting the mask and then resetting the machine to its normal setting.
C. Using a leg or two cut off of Ladies Tights to tie down the area of the mask in the area where it is leaking the worst.
None of these ideas were my own, I found them searching this great site which is filled with great people!
Eudofair.

[ozij]

Tony,
Hose management can make a tremendous difference - whether your hose hangs from above your head, or is routed under you covers. I need the hose routed from above my head.

Another important aid is the kind of pillow you sleep on. There are pillow made for cpap use like the PapPillow, and some people are very happy with a shapeable pillow found in Target's.

O.

[roster]

Tony,

If by "hybrid style" you actually mean a Hybrid mask, http://www.mergenetsolutions.com/hybrid/, here are some tips for sizing and adjusting the Hybrid - viewtopic.php?t=14422&highlight= . I emphasize the need to place your machine in front of a mirror and have it running at the top prescribed pressure while you are adjusting and testing the mask. Also, my mask works fairly well without the ladies tights fix, but I still use the tights every night and they absolutely prevent the pillows from ever popping out of my nares.

Let us know if you actually have the Hybrid and how it goes tonight. The Liberty mask is sometimes called a hybrid-type mask, but it is a copy of the Hybrid and IMO, the Liberty is inferior to the Hybrid.

Many of us went through what you are struggling with and eventually became successful. If you are like us, you went a long time undiagnosed/untreated and are worn down. This makes it very difficult and frustrating to implement CPAP. As you get your therapy working well and get some sleep, things will start to get easier.

Come back often with updates and ask questions.

Regards,

[tonycog]

Yes, that is the exact mask I have. I just took it off out of frustration. I laid in bed for more than 30 minutes earlier today with it on and had no leak problems. So I go to bed for real tonight at 10:00 and by 10:30 I have serious leakage with flapping rubber and that 'fart sound' coming from both sides of the mask. The noise only strikes as I just begin to doze off into blessed sleep.

I'm running out of options, patience and sleep-deprived energy right now. This is my 7th night with this cursed machine. My DME nurse is trying to be a good professional but it is clear that she doesn't know what to try next.

Thank you for your interest and input. I keep thinking that one these nights I'll get 6-8 hours of good sleep and my wife & son will get glimpse of their husband and daddy again. (sigh) Your help is appreciated very much.

Thank you all,
Tony

[roster]

Tony,

What are the other two full face masks you have?

[tonycog]

At this point I have only the Hybrid and a Respironics Comfort Gel Full. The Comfort Gel seems like it would be by far the most comfortable, but I have had zero luck in getting it sealed. (Loud fart noises.)

Thanks,
Tony

[Wulfman]

Yes, that is the exact mask I have. I just took it off out of frustration. I laid in bed for more than 30 minutes earlier today with it on and had no leak problems. So I go to bed for real tonight at 10:00 and by 10:30 I have serious leakage with flapping rubber and that 'fart sound' coming from both sides of the mask. The noise only strikes as I just begin to doze off into blessed sleep.

I'm running out of options, patience and sleep-deprived energy right now. This is my 7th night with this cursed machine. My DME nurse is trying to be a good professional but it is clear that she doesn't know what to try next.

Thank you for your interest and input. I keep thinking that one these nights I'll get 6-8 hours of good sleep and my wife & son will get glimpse of their husband and daddy again. (sigh) Your help is appreciated very much.

Thank you all,
Tony

Sounds to me like you need a different bed pillow. There are a number of them that are designed for use with this therapy and then there's the one in my profile (Chiroflow water-based pillow).

Den

[computerguy2202]

Hang in there...I have tried every mask ResMed and Respironics makes and not one has not leaked (about 20 masks). Ask your DME if they have any older models you could try. Talking to the ResMed sales guy, the new masks have some material cut away, and the old ones may work. I have one coming tomorrow to try out.

[tonycog]

My DME and another here in my town have both given up in trying any more masks. She told me there is nothing more that she can do and that I need to talk to my doctor (which I am in 3 days).

I tried to take a nap this afternoon with the Hybrid Mask. I got the same "face fart" sounds. I did notice WHEN it happened, which I hope might be helpful. As I was dozing off, my Bi-PAP would increase it's high-end air pressure even higher. The high pressure during sleep becomes higher than when I am awake. It is at this high-point of highest pressure that my mask loses its seal and begins to be noisy. I can lay there awake with the machine at it's lower high levels and the mask won't leak. This explains why it would never leak at the DME's office.

I am going to ask my doctor to reduce the pressure. Any other ideas, anyone? It's only been 7 days (though it has seemed like 100 since I can't sleep) and I am still trying to figure out this Bi-PAP stuff.

Many thanks for all of your input,
Tony

[ozij]

Any other ideas, anyone?

You have been give at least three ideas that have nothing to do with the type of mask - I'll repeat them:

Hose management can make a tremendous difference -

Another important aid is the kind of pillow you sleep on. There are pillow made for cpap use like the PapPillow, and some people are very happy with a shapeable pillow found in Target's.

Mac's silicone earplugs

O.

[Guest]

how do internet vendors help here? LOL. Someone please tell me.

[Guest132334]

Have you tried actually using earplugs - little foam ones you roll up and put in ears. Made a huge difference for me.