Help Please!!

[SteveL]

I was diagnosed back in October with sleep apnea. I ended up with the M series plus and the Hybrid mask. So far I have only used the machine 7-8 times and it always ends up the same way – I lay in bed awake until 4-5am then take the mask off in frustration and fall right to sleep. The next day I can barely keep my eyes open as I only got 1.5-2 hours of sleep. I figure 6-8 bad hours are better than 2 bad hours but that doesn’t seem like the only two options that should exist. Ideas? Help? Guidance?

PS – even with ambien I didn’t get much more than 2hrs. but it was at the beginning of the night instead of the last part.

PS again - my test results showed that my blood oxygen level was dropping to 70%. My doctor was a bit alarmed but I don't really know what that means. Does that mean I have a really bad case or it it pretty average for this condition?

[DreamStalker]

Check this link -

viewtopic/t22794/PurSleep-Trial-Offer-- ... rs-II.html

maybe it will help?

[Guest]

Welcome to the forum.

What's your pressure set to?
Is C-Flex configured on it?

You shouldn't be leaking with a Hybrid (or not much, anyway) so it may be a matter of getting comfortable with the pressure......or getting a pressure that's comfortable.

Do you have any history of GERD?

Do you have any idea of why you're waking up?

Best wishes,

Den

[Slinky]

Ideally, our 02 saturation should NOT drop below 90%, 88% minimum, for any length of time at all when sleeping. So your doctor's concern is understandable. BUT, it isn't JUST how low it drops, what is more important is how OFTEN it drops and for how LONG.

The number of apneas and hypopneas and their duration are the key elements in determining the severity of obstructive sleep apnea (OSA). So the minimum desaturation you encountered isn't the key element in determining the severity of your OSA.

Ambien worked well for me to GET to sleep, but it was only good for 4 hours and wasn't keeping me asleep or getting me back to sleep once I woke up. Ambien CR is supposed to be good for both GETTING you to sleep and for KEEPING you asleep. I haven't tried Ambien CR.

I assume that your DME supplier and your sleep doctor have just left you high and dry w/no further info. Have you contacted either of them and told them the problems you are having? What they don't know they can't help you with.

If you haven't contacted either of them about your problems I suggest that you do so ASAP. And while you are at it ask for a copy of the summary report (about 5-6 pages, some w/graphs) for both your sleep evaluation study and your titration study (or perhaps you did a split night study??). Also ask for a copy of the dictated results report from both AND a copy of your order (script) for equipment. They are a part of your medical records and in the USA you have a legal right to copies of your medical records. We can be of more help to you here if you have that information available. There may be something else going on w/your sleep than "just" sleep apnea.

It would also help if you would look at the top of your CPAP and tell us just which M Series CPAP you have. There are several M Series models. Do you have an integrated or stand alone humidifier? If you have registered as a member, click on Profile at the top of the forum page and enter your model M series and your Hybrid mask, allow Private Messaging as sometimes it is easier to respond via a PM than a post in a thread. This will help forum members advise you as well and you won't have to remind us in each post what equipment you have.

All that being said, for the time being, try wearing your mask WITH YOUR M SERIES turned ON while watching TV, reading a book, whatever helps to occupy your mind and distract it somewhat from laying in the dark TRYING to go to sleep. Do this during the day or evening before bedtime and on weekends. It will help w/the adjustment to using CPAP and mask.

Meanwhile, really think about what it is that is bothering you when using your CPAP and mask. Difficulty breathing? Mask irritation? What kind of mask irritation? Leaks w/air blowing in your eyes? Mask on too tight? The noise of the M Series or the nose of the mask "exhaust"? Sometimes we can offer advice to help w/that too but we need more specific info than you've given us.

Meanwhile, talk to your DME suppliers' RT and to your sleep doctor.

[SteveL]

The pressure is set to 13. C-Flex is on. No GERD and I'm not actually waking up (unless I've taken the ambien). I simply can't get to sleep. I lay in bed all night with my eyes shut just breathing and being bored. Now that I'm at work with 2hrs of sleep I could probably sleep quite well...

The mask doesn't leak much but does blow out on occasion. It seems that as the pressure builds it pops a hole between my cheek and the silicone. tightening the mask has helped quite a bit but any more and it will be too much. Not a big deal at this point as it isn't waking me up......

[SteveL]

Wearing the mask while watching TV - hadn't thought of that but I bet it will help some.

I'll ask for copies. I do remember that the doctor said I was "waking up" every 60 seconds on average. We calculated that even when I'm asleep for 7hrs I was only really getting 1-2hrs of actual sleep. She thinks it is the cause of my weight gain and BP problems. She is very nice but doesn't seem to up on apnea.

i think my problem is related to many things -

• I normally sleep on my stomach which changes when weraing the mask.
  The pressure puffs my cheeks out and makes me think about my breathing.
  The pump is quite loud with its cycles.
  I'm wearing freaking SCUBA equipment to bed.

I think moving the machine to the den this weekend for some daytime use may help witht he last point.

[TerryB]

Stevel,
I have recently started using earplugs to eliminate the cycling sound of the machine, it also eliminates the AC cycle, etc. etc.
I use a chin strap and denture strips to keep my mouth fully closed and I think that the strap helps eliminate chipmonk cheeks too. You might want to give the elastic bad from chin to crown of head a try.

13 is a medium pressure, but using the ramp function to start the first minutes of the night at a lower pressure might help going to sleep. Don't recommend going much below 8 or so to keep from feeling like there is not enough air available.

Good Luck,

TerryB

[DreamStalker]

Also ... just to add a little more perspective.

If you had to sleep under water, you would be feaking if you didn't have SCUBA gear. Sleep apnea is a lot like getting water boarded (that is legal still isn't it?) ... so the PAP equipment should be a secure comfort that you will survive the night.

[Guest]

Wearing the mask while watching TV - hadn't thought of that but I bet it will help some.

I'll ask for copies. I do remember that the doctor said I was "waking up" every 60 seconds on average. We calculated that even when I'm asleep for 7hrs I was only really getting 1-2hrs of actual sleep. She thinks it is the cause of my weight gain and BP problems. She is very nice but doesn't seem to up on apnea.

i think my problem is related to many things -

• I normally sleep on my stomach which changes when weraing the mask.
  The pressure puffs my cheeks out and makes me think about my breathing.
  The pump is quite loud with its cycles.
  I'm wearing freaking SCUBA equipment to bed.

I think moving the machine to the den this weekend for some daytime use may help witht he last point.

Changing sleeping positions from what you're used to could be a big part of the problem.
I know that if I had to sleep on my back or stomach (I'm a side-sleeper), I'd never get to sleep, either. We have quite a few stomach-sleepers in this group.....maybe they can make suggestions.

Noise - Try positioning the machine below your head level. Some people have put styrofoam coolers over theirs (with cutouts for air intake) to buffer the noise.
Also, make sure all of the filters are in place.

If you still have problems, and if you have a decent relationship with your doctor, my suggestion would be to check with him/her about dropping your pressure to about 10 and then work up in 1 cm. increments. SOME pressure is better than NONE.


Den

[rested gal]

SteveL, there is a mask that will allow you to sleep comfortably on your stomach again. Or in any sleep position, for that matter.

EvoMedical's "Headrest" nasal pillows mask. Used to be called the Aura and the Twilight NP.
https://www.cpap.com/productpage.php?PNum=1717&PAID=215

That mask, and hanging the main air hose overhead as Roberto (DreamStalker) mentioned, will let you turn onto your stomach again.
LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

About this: "The pressure puffs my cheeks out"
You were talking about lying in bed awake and having that happen. Mouth filling with air is an almost sure indication that IF you did fall asleep, you're going to lose treatment air out your mouth. If you had been asleep when your cheeks puffed out (cpap air detouring into your mouth from the back of your throat) most likely your jaw and mouth would have been relaxed open and the detouring cpap air would have gone right out.

So....you may need to be ready to address the problem of mouth air leaks or mouth breathing when jaw relaxes in sleep. Not that you've been able to sleep with all the gear yet, but you will -- after you get a comfy mask and can turn onto your stomach.

Sometimes just a simple chin strap to help keep the jaw from dropping is enough to prevent mouth breathing in your sleep. But if that doesn't get the job done, below are links to many discussions about ways to stop mouth air leaks. Yeah, I know you're not leaking air out your mouth right now but consciously keeping the lips shut while awake is quite different from what happens when we get into relaxed sleep. Better you be forewarned about the puffed out cheeks while awake being a possible sign of later mouth air leaking problems to come when you DO finally get so you can sleep with a mask on.

Links to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

Links to topics about the Headrest (Aura/Twilight NP) mask:

LINKS to Evo Medical's HeadRest (previously named Aura and Twilight NP) nasal pillows mask topics
viewtopic.php?t=3098

If you'll use a soft, stretchy homemade strap horizontally around your head, placed over the nasal pillows and around the sides of your face, that could serve two purposes:

1. Keeping the nasal pillows steady at the nostrils

2. Keeping your cheeks flattened against the detouring cpap air entering your mouth from the back of throat. Preventing cheeks from puffing out will keep most of the detouring air from filling your mouth. The less build up of air in the mouth, the less chance of the pressure causing a "blow out" of air escaping from between loosely closed lips during relaxed sleep. Treatment air blowing out into the room can't help keep the throat open.

[Slinky]

Steve, for 52 years I was a tummy sleeper. A whiplash in 1994 ended that. And my sleep problems BEGAN in 1994 after that whiplash. I had to train myself NOT to even TRY to sleep on my tummy due to my neck. To this day my neck does not allow me to sleep on my tummy. I still do not sleep for beans. And it is not all due to sleep apnea. Unfortunately, it has taken until now for me to convince my sleep doctor that there is MORE to my fragmented sleep than "just" sleep apnea.

My sleep and titration studies have been erratic at best. Severe leg movements some nights, only a few other night. I have COPD so that was their next reason for the fragmented sleep. Yet I can have some nights on CPAP and room air as good as good nights on CPAP and 02 supplementation and then turn around and have opposite results another night. CPAP does usually GET me to sleep. Staying asleep is another matter. Getting BACK to sleep is hit or miss.

CPAP has defintely helped. Altho the first 30 days w/CPAP were WORSE than prior to CPAP. I am now sleeping better and feeling much more rested than before CPAP but I still have a way to go.

I'm now seriously considering a second opinion from one of two sleep labs, both of which are a two hour drive from my home. I'm hoping that my current sleep doctor, a sleep/critical care specialist pulmonologist, can help me determine which of the two labs might be my better choice under the circumstances.

RestedGal gave you some excellent sources to check out. In addition, you might want to post a new thread w/Tummy Sleeping or Tummy Sleepers in the subject line. That should catch the attention of other tummy sleepers that may have missed or not chimed in on previous post regarding tummy sleeping and CPAP.

Good luck and God bless!

[Panhandler]

I'm using the Fisher & Paykel Infinity nasal interface and getting along pretty well on my stomach. I do have to hang the front of my face off the pillow a little.

[geoDoug]

I simply can't get to sleep. I lay in bed all night with my eyes shut just breathing and being bored.

I used to have the same insomnia problem (problems getting to sleep, as opposed to waking up and not getting back to sleep). Think of insomnia as an "awake problem" instead of a "sleeping problem." You want your mind to associate the bed with, "it's time to go to sleep now." To that end:

First, don't do anything in bed except sleeping and that other activity. No TV in the bedroom!

Second, if you're lying in bed and can't sleep (say if you spend more than 15 minutes in bed without sleeping) get out of bed and do something relaxing in another room like reading a book that puts you to sleep until you are tired. Then go back to bed. Lather. Rinse. Repeat. For this to work, you really need to be consistent about it, since you're training your brain to think differently.

Third, if at all possible, stay on a regular schedule. Go to bed and wake up at the same time every day. Again, it'll get your body used to being tired when it's supposed to be.

Fourth, if it's a problem of your mind "racing," spend a few minutes at the end of the day doing "worry time." (This little item had a huge impact on me.) Write down what needs to happen tomorrow or the next day or whenever, so you don't have to think about it when you're lying there. If something does occur to you when you're in bed, get up and write it down so you don't obsess over it.

Doug.

[SteveL]

You folks are very helpful. I think I need to find a good sleep disorder doctor here that I can talk with - my doctor is good but this isn't her specialty.

I'm going in tomorrow to see about a nasal pillow. I think something like the aura and some tape should do the trick for comfort. I think I'll watch TV with the mask on this weekend and see if that does any good.

I wasn't too worried about mouth breathing since I use the Hybrid but it is a different story with the pillow system.

[goose]

Hey Steve - geoDoug makes very good points -- you have to retrain your brain to accept your new situation.

Number 4 used to be my big bugga-boo. When I was younger I did a lot of meditation (I'm an aging hippie like my sig says). I found that blanking the mind was a great trick to use. Thinking of nothing -- it's not an easy task, but is quite relaxing once learned.
One way it used to work for me was visualizing a large oak tree in a meadow -- just concentrate on the tree. While concentrating on the tree I would just start relaxing my body parts -- starting with toes, feet, legs, midsection, fingers, hands, arms, and lastly my head -- by the time I was at my head I was thinking of nothing and pretty much asleep (It's also a method of self-hypnosis).

I don't recall who's suggestion it was, but earplugs are an excellent idea to not hear the machine. I use them so I don't have to listen to my wife snore, but I also don't hear the machine.
But that said, I can also concentrate on the rhythm of the machine and do the relaxing exercise -- it's whatever works for you.
Sounds goofy, but retraining the brain is a mental exercise

Good luck!!!! Keep at it and I'm sure it'll work for you!!!! Let us know how you're doing!!!!

cheers
goose