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Struggling
#1
Gross 
Struggling
Hello everyone,

I've been a member of this website for a bit, but this is my first time posting. I am having a lot of trouble with my BiPAP machine and am hoping that you all can give me some advice. 
I'm averaging about an hour and a half to two hours with the machine at night at night (I have an AirCurve 10 ST with an AirFit P10 nasal pillow mask). I keep taking the mask off in my sleep and I don't know why. Sometimes I have to take off the mask because I wake up in the middle of the night with a parched mouth; this seems to come and go. The rest of the time I end up just taking it off in my sleep and I don't know why. I have an average of 11 or 12 AHIs every night.
I've tried cleaning my face, cleaning my mask, increasing humidity, decreasing humidity, increasing pressure, decreasing pressure; I've tried different BiPAPs, lots of different masks, different trigger settings and different respiration rates, and nothing works. I've only been able to keep the mask on for 6-8 hours a handful of times. I am always tired and have a continuous brain fog. 

What do I do? I grow weary of the BiPAP; Its not like I just need to get used to it, I've been on it for a year! What other treatment options are out there besides the BiPAP machines? I've heard of people using a kind of mouthguard to prop their airway open. Is there anything else that can help me? I certainly have sleep apnea, but it seems like there is nothing I can do to make the BiPAP work. It seems pointless to keep trying.
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#2
RE: Struggling
G'day zrama. A belated welcome to Apnea Board.

This is a very common story, and I suspect most users who can't keep the mask on all night would have given up by now. So congratulations on your perseverance, Hopefully between us we can find a solution for you.

You're well over the initial acclimatisation period, so it's not just a matter of getting used to it. I've been on the hose over five years and sometimes (too frequently) I also wake up with the mask lying on the bedside table. Why? I don't know, but I suspect some or all of the following might apply:
  • The pressure gets too high for comfort
  • The pressure is too low and I'm starved for air
  • The ASV function is not synchronising with my breathing
  • The mask leaks, either blowing into my eyes or making "face farts", both of which disturb me
  • The hose is dragging on me, pulling the mask off my face or otherwise disturbing me
  • The headgear is too tight or too loose, or presses on a nerve pressure point causing discomfort
  • I've been breathing through my mouth, causing a dry mouth and parched throat
  • I've been roused by my bladder and "forgot" to put the mask back on afterwards
  • Etc

Do any of these sound familiar?

You might also like to post a daily page from SleepyHead and zoom in on the few minutes immediately prior to the end of session, to see if there's something which stands out in the charts.

Download Oscar: https://www.sleepfiles.com/OSCAR/
Oscar Help: http://www.apneaboard.com/wiki/index.php...OSCAR_Help
Organise your charts for review: http://www.apneaboard.com/wiki/index.php...ganization
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Struggling
Nasal pillows + dry mouth = mouth breathing.

It might not be all of it, but that much is pretty certain.

You remove the mask because it's an irritant.  We lash out at covers if they tickle us, or swipe at a spouse attempting to rouse us to stop snoring or to get to an early appointment.  We turn when we get sore and need to restore circulation to the arm under us.  We rise because we don't want to pee the bed. We might remember the walk to the bathroom later, but few of us will remember the other bits. The mask removal is because it gets in the way of your blissful sleeping.  As the previous poster suggests, you may get blow-by and it often goes upward and into our eyes.  The blow-by comes from deformation or displacement, and that happens because of contact between a part of us or (the pillow) and the mask. One other possibility is that your hose gets too.....ummm…...cuddly.  Do you have the odd time hour hose is wrapped around you, your arm, your neck...?

Think about these things.  Somewhere there-in lies the solution to at least some of what is preventing you from getting the full benefit of your therapy.
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#4
RE: Struggling
There are two basic things that happen with CPAP treatment: the first is the actual treatment and reducing the AHI. at 10-12 AHI you are still working on this, Your setting still need to be tweaked. Get your Doctor to help or read up on posting your charts. It's not all that difficult and it does supply real technical information to the great people here. They can and will help

Second is comfort and I would be that this is hitting you also, in the post above is listed some of the common indicators for discomfort, but there should be others. Doctors can't help here other that providing a method for tracking it down. Not all require sleeping, you can test many thing just laying down with the machine running, relaxing and paying attention to what is going on. Can you feel something that might annoy you? when you tweak settings does it stay the same, get worse, or get better. This takes time, it's not going to be like lemon juice in the eyes. it's things that don't actually keep you from sleeping, but instead they keep you from getting deep sleep, so you are sleeping but are always tired. You are not getting restful sleep and it is because something is making you just uncomfortable enough. You need to find out what it is.
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#5
RE: Struggling
following up on what mesenteria said: dry mouth = lip/mouth leaks.

some people tape their mouth shut, some use a chin strap. others figure out how to master the tongue suck technique. these didn't work for me but a soft cervical collar does. not perfectly, I still get some deep-sleep-slack-lipped-balloon-cheeks-belching-blow-out leaks (and not necessarily at higher pressures), but overall, for me, the collar is the difference between success and failure with cpap. oh, and some people suck on something called xylimelts (sp?). lots written here on the forum about each of these techniques. you might try keeping a journal or voice recorder next to your bed to note thoughts or memories about problems with and removing the mask. having others check on you occasionally if possible could lead to useful observations. a video camera even better.

posting your oscar charts will help others' help you. sometimes things we are unaware of are visible in the data. there are many many possible reasons for waking, not feeling refreshed, feeling uncomfortable and otherwise potentially failing cpap therapy. in my case, it's unrelated to apnea: I suffer from arousals from periodic limb movement. I'm not suggesting that's your problem, just using it as an example of something that leaves me tired despite managing my apnea pretty well (finally!).

each of us is unique; solutions are the result of trial and error and perseverance. for many of us it is a struggle to get everything working just right, especially in the beginning. but our circumstances change over time so it's also possible that some of us will have to monitor and adjust at least occasionally throughout our cpap lives to reach and maintain optimal efficacy.

if nothing else, using the mask and machine while awake and doing whatever you can to keep it on longer and longer, may just solve the problem eventually. I hesitate to suggest this but obviously whatever you do is up to you: maybe restrict or restrain your hands for a night (good to have someone nearby just in case...). maybe a safer suggestion: if you can stand the heat, try mittens or socks on your hands to make it more difficult to remove the mask. maybe it'll wake you enough to notice what's motivating you to rip it off.
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#6
RE: Struggling
In addition to socks, one other little trick I’ve read is to position some tape so it bridges your face and your mask straps. That way you’ll feel it pull if you try to take the mask off.
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#7
RE: Struggling
zrama,
Please post some data from OSCAR if you have it set up.  If not, then post from SleepyHead.

You’ve suffered with this for a year?  Are you going this alone or are you under a doctors care?  
Did you have a sleep study done?  

The bottom line is that an AHI of 11 or 12 every night is not good.  Do you know the breakdown of that AHI number?  Are you experiencing more Obstructives, Hypopneas, or Clear Airways?  

Post a screenshot of the daily page. It might be a matter of your pressure settings needing adjusted for a more comfortable sleep.

Follow the instructions in my signature line to guide you in posting a screenshot.

And a belated Welcome to Apnea Board!
OpalRose
Apnea Board Administrator
www.ApneaBoard.com
Dreaming


https://www.sleepfiles.com/OSCAR
OSCAR Chart Organization
Using Attachments to Post ScreenShots.




INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: Struggling
Hi db, thanks for the advice! And thank you to everyone else who responded! I will do a general reply here.
I can relate to a lot of those things db mentioned and struggle with them periodically. I called my medical supplier this week and ordered a new hose, new nasal pillows and a chinstrap to keep my mouth shut at night. 

Concerning my pressure setting: I am operating at this current pressure because its basically the highest I can go; if I go any higher the BiPAP machine pumps my stomach full of air.

I attached some screenshots of my data last night like you suggested and downloaded OSCAR.



           
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#9
RE: Struggling
I was also wondering if using a mouth-guard can cause issues with the BiPAP? I clench my teeth when I sleep, so I have to use a mouth-guard; the mouth-guard works by moving my jaw just a little bit forward or back so that I can't clamp my jaw down very hard. Is it possible that this slight change could be obstructing my airway?

Thanks
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#10
RE: Struggling
Hi Zrama. Obviously you're still experiencing a lot of hypopnea events. But we can't see the full story because of the way the charts are set up. Could I ask you to reorganise the charts and re-post them please?

The instructions are here: http://www.apneaboard.com/wiki/index.php...ganization
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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