Need Advice -- Having A Lot of Issues

Hi All,

I've had my APAP machine since July and have been struggling with it. At first it was due to something in my throat a sort of pop that would wake me up just as I was getting to sleep. This popping was happening while I was awake but I only noticed it a few times per hour. In any case I am living with it and found sleeping on my side seems to get me to sleep.

I had initially the P30i mask but found it to be suffocating me so I moved to a N30i. I've been using this up until two weeks ago after increasing the min pressure from 5 to 6 (initial setting was 5-15). I found my mouth opening with the N30i so I bought a chin strap. I think it is not tight enough and is getting in the way of doing the job because of the mask. I feel the air at times restricted. I did buy a F&P Solo mask and still felt the suffocating with it. Ended up opening the hole a little which helped. I think this mask may work but also tried a full face F30i. This one I believe might be a size too small for me as I am getting leaks when the pressure ramps up.

My main issues right now are:
Most masks are causing the feeling of suffocating (possibly sinus issues/I had auto temp auto humidity before it broke)
Leaking
Waking up 4-5 times a night

On top of all of this my heated hose stopped working (a new one is on the way) so things are just compounding right now. My APAP machine is no longer shutting off when I use the quick disconnect. I don't know if I did something messing with the settings or that drop this week from the nightstand (2 feet drop to carpet) did it.

I'm really sorry for all of this in one post, if someone has time could you review some of my older data this month and let me know what I can do to fix this? https://sleephq.com/public/teams/share_ ... 0b4741b9ae

I will also be reaching out to me DME to actually send this back. They of course never gave me what the full cost would be if my deductible was not met and I have a bill for $400. They charged me $186.12 for the Humidifier for S10 Airsense, S10 Auto CPAP $57.59 and the reset was the tubing, filters and head gear. If I need to keep it for a year I'll end up paying close to $4000 for this as it will be between two years of insurance deductibles. Should I go with the Airsense 10 or 11?

I am trying to get this to work for me but it is a very hard time adjusting. Also the nurse practitioner that I see for this mentioned to leave the settings as is for now and that everything looked good. What she told me when I said I didn't notice any difference was that some people just won't see a difference but will get the benefits of not having a heart attack or stroke. I'm not buying this BS.

Thanks for your time

I won't be able to make suggestions about all the issues you've raised, but let me take a crack at some of them.

First, I would suggest you raise your minimum to 7 so you can get the full benefit of your EPR at all times. (Your EPR is dropping your pressure by 3, but the machine can't go lower than 4.) That might also help a little with the feeling of not getting enough air.

Second, you do need to deal with your sinus/congestion issues. I hope the new hose will help, but you might also consider using Flonase (takes a week or two to kick in) and NeilMed sinus/nasal rinse. Have you ever seen an ENT?

Third, on some nights you are having a lot of breaks in therapy. What is causing you to stop/start the machine?

Fourth, the Airsense 10 Autoset is tried and true; some people feel the 11 doesn't have any real advantages and may even have a few disadvantages.

I hope others can help with your questions too.

Thanks so much for the replies.

I have visited an ENT a few years ago when I had a deviated septum. I had two surgeries, the first ENT was only able to clear the blockage while the second actually corrected it. The last checkup a few years ago he said everything looked fine.

I will try the Flonase to see if it helps. Worth a shot.

I am getting up anywhere between 3am and 5am. Sometimes I can fall asleep after going to the restroom and other times I just sit there for an hour or more until I can fall asleep. This has been happening to me for the past 10 years or so, just after I bought a new mattress and couldn't sleep on my side or stomach any longer. Some days my nose feels really congested until after I remove the mask and then it clears up in 20-30 minutes.

This congestion happens mostly when I am sleeping with or without the mask. I also have an an adjustable base but it I go over 15-20% incline I can't fall asleep (and the mattress sheets start untucking.

npolite wrote: ↑

Fri Sep 13, 2024 6:28 am

I had initially the P30i mask but found it to be suffocating me so I moved to a N30i. I've been using this up until two weeks ago after increasing the min pressure from 5 to 6 (initial setting was 5-15). I found my mouth opening with the N30i so I bought a chin strap. I think it is not tight enough and is getting in the way of doing the job because of the mask. I feel the air at times restricted. I did buy a F&P Solo mask and still felt the suffocating with it. Ended up opening the hole a little which helped.

My main issues right now are:
Most masks are causing the feeling of suffocating (possibly sinus issues/I had auto temp auto humidity before it broke)

I want to second Miss Emerita's suggestion of bumping the minimum pressure up to 7cm since you are feeling starved for air. I also want to add: Make sure the ramp is turned OFF.

I'll also mention this since you talk about sinus problems and nasal congestion: Some noses like a lot of humidity and will get congested when the humidifier setting is too low. But other noses like things on the dry side and will get congested when the heated humidifier setting is too high. So you need to think about this: If your nose is already a bit congested and you take a hot, steamy shower, does the congestion get better or worse? If hot steamy showers help your congestion, think about turning the humidifier way up and then deal with rainout (condensation problems) if/when it happens to you. If hot steamy showers make your congestion worse, think about turning the humidifier way down (or even off) to see if that helps.

npolite wrote: ↑

Fri Sep 13, 2024 6:28 am

On top of all of this my heated hose stopped working (a new one is on the way) so things are just compounding right now. My APAP machine is no longer shutting off when I use the quick disconnect. I don't know if I did something messing with the settings or that drop this week from the nightstand (2 feet drop to carpet) did it.

Do you know how to get into the clinical settings and see what they are so that you can figure out if you changed something that maybe you shouldn't?

Most of the time APAPs can stand a fall off the night stand without suffering significant damage. But if you are worried about it, you might want to report this to the DME who sold you the machine.

I will also be reaching out to me DME to actually send this back. They of course never gave me what the full cost would be if my deductible was not met and I have a bill for $400. They charged me $186.12 for the Humidifier for S10 Airsense, S10 Auto CPAP $57.59 and the reset was the tubing, filters and head gear. If I need to keep it for a year I'll end up paying close to $4000 for this as it will be between two years of insurance deductibles. Should I go with the Airsense 10 or 11?

The DME should have given you paperwork with the specific details about your contract with them. See if you can find the paperwork and read it carefully. If you don't understand the paperwork, let us know exactly what the contract says and we should be able to help you understand what the cost of your equipment is supposed to be.

Are you on an employer-provided health insurance plan? Or are you on Medicare? Medicare and most health insurance plans in the US have a "rent to own" contract for CPAP equipment. The rental period can be as short as 8-10 months or as long as 12-13 months and you get a monthly bill for your part of the monthly rental. (Your part of the cost will depend on your insurance company's policies for covering durable medical equipment and your deductible.) The humidifier is usually covered as a one-time purchase, not a monthly bill. The tubing, filters, and headgear are also purchases, not rentals. The insurance company will have a "replacement" schedule for each of the "consumables" (the tubing, filters, mask cushion, headgear, and humidifier tank), which says how frequently the insurance is willing to pay for replacements. Keep in mind: Tubing and humidifier tanks are likely to last longer than the replacement schedule indicates. Headgear and mask cushions may or may not last as long as they are "supposed to" according to your insurance plan's rules, and filters are cheap to buy out of pocket and many of us replace them far more frequently than our insurance will pay for them.

If I had to guess based on the numbers you posted, I would guess that the $57.59 is the only monthly charge that you should be responsible for paying, and that is probably your part of the monthly rental for the machine. And at the end of the rental period, that charge should no longer be passed off to you because at the end of the rental period, the machine should be owned by you, not the DME.

npolite wrote: ↑

Fri Sep 13, 2024 6:28 am

My main issues right now are:
Most masks are causing the feeling of suffocating (possibly sinus issues/I had auto temp auto humidity before it broke)
Leaking
Waking up 4-5 times a night

I'm really sorry for all of this in one post, if someone has time could you review some of my older data this month and let me know what I can do to fix this? https://sleephq.com/public/teams/share_ ... 0b4741b9ae

If this data is typical for you, the leaks are not actually that bad. And they're not really a problem unless you are waking up because of the leaks OR if you are experiencing serious problems with a dry mouth when you wake up OR if you wake up with severely dry eyes and suspect mask leaks may be blowing on your eyes.

So when you say leaks are a problem, what kind of problem do you think the leaks are causing?

npolite wrote: ↑

Fri Sep 13, 2024 6:28 am

My main issues right now are:
Most masks are causing the feeling of suffocating (possibly sinus issues/I had auto temp auto humidity before it broke)
Leaking
Waking up 4-5 times a night

Is waking up multiple times each night a new problem? Or were you waking up a lot before you started using the APAP machine? I ask because you also write:

npolite wrote: ↑

Fri Sep 13, 2024 12:04 pm

I am getting up anywhere between 3am and 5am. Sometimes I can fall asleep after going to the restroom and other times I just sit there for an hour or more until I can fall asleep. This has been happening to me for the past 10 years or so, just after I bought a new mattress and couldn't sleep on my side or stomach any longer.

So the problem with waking up between 3:00 and 5:00 AM and not being able to get back to sleep for an hour or more is not new. That means we can conclude that this part of your bad sleep is not being caused by your rough adjustment to CPAP therapy.

The question is: What caused the problem way back when it first started?

Related questions include:

Did you buy the new mattress after you developed problems with trying to sleep on your side or stomach? Or did you buy the mattress first and then discovered that you could not seem to sleep on your side or stomach when using the new mattress?

What happens when you try to sleep on your side or stomach? Reflux problems? Or something else? And what, if anything, have you done to try to alleviate the problems that prevent you from sleeping on your side or stomach?

You also write:

I also have an an adjustable base but it I go over 15-20% incline I can't fall asleep (and the mattress sheets start untucking.

Since you have an adjustable base, I'm going to assume that you got this bed with the adjustable base because of reflux problems. A 15-20% incline is a pretty steep incline and it's not a surprise that the mattress sheets start untucking at point.

What happens if you try to use a more gentle incline of 5-10%? Is that enough to relieve the problems that caused you to buy the bed?

What happens if you try to sleep in a flat bed---i.e. with no incline at all?

The reason I'm asking all these questions is this: CPAP only fixes sleep disordered breathing problems. If there are any other things in addition to sleep disordered breathing that are causing your sleep to be bad, then using an APAP may fix the sleep disordered breathing, but it ain't gonna fix the bad sleep all by itself. You have to fix all the other problems with your bad sleep in addition to fixing the sleep disordered breathing before your sleep can become good sleep. (And even then, you have to have reasonable expectations of what good sleep means.)

So in order to get a decent night's sleep, it's important for you to start with teasing apart your other old, preexisting sleep problems from any new sleep problems that have started since you started using the APAP machine.

Let's tackle the two wake-after-sleep-onset (WASO) problems separately for a minute:

Old problem: A wake on most nights somewhere between 3:00 and 5:00 AM where you often get up to go to the bathroom. On a better night, you can get back to sleep, but on a bad night you can lie in bed for an hour or more not sleeping. When you find yourself unable to sleep for a lengthy amount of time, do you do a lot of clock-watching? Do you get upset or angry or anxious or tense and start thinking about how little sleep you've gotten and how soon you are going to have to wake up?

Old problem: Not being able to sleep on your side or stomach. This is only a problem if you would like to sleep on your side or your stomach and you can't. So is back sleeping comfortable for you? Or would you rather sleep in a different position?

New problem: Multiple wakes, some (or all) of which may be caused by leaks waking you up or other sensory stimuli coming from the machine. Can you pinpoint reasons for why you keep waking up? Is it because leaks? If so, can you tell where the leaks are occurring? Is it because you feel like you are suffocating? If so, is it because there is too little air coming through the mask to be comfortable or too much air? Is it because you want to move around in bed, but you are (unconsiously) afraid of pulling the machine off your night table again? Is it because you feel like you have a stomach that is bloated and full of air? Is it something else? When you wake up do you have trouble getting back to sleep? Do you turn the machine off and then back on because the pressure feels "too high"?

Finally you write:

npolite wrote: ↑

Fri Sep 13, 2024 6:28 am

I am trying to get this to work for me but it is a very hard time adjusting. Also the nurse practitioner that I see for this mentioned to leave the settings as is for now and that everything looked good. What she told me when I said I didn't notice any difference was that some people just won't see a difference but will get the benefits of not having a heart attack or stroke. I'm not buying this BS.

Many people using CPAP/APAP don't feel much of a difference for several weeks to several months even when everything goes well.

But if you've got other sleep problems in addition to the sleep disordered breathing, then you most likely will not feel much of a benefit from APAP until you get those other sleep problems under control. In other words, the reason you are not yet feeling any better is because you are having too many wakes in the middle of the night and it is taking you too long to fall back asleep. And no matter how perfect your APAP settings are, sleeping with an APAP is not going to fix the problem of those middle of the night wakes.

Now it's also worth mentioning that even with less than good sleep, the fact that the APAP is preventing the apneas and hypopneas from happening is a net plus for your body: Each apnea is in fact a mini-suffocation. And each hypopnea is a mini-near suffocation. At best, your body responded to all the apneas/hypopneas in your untreated sleep by going into a fight-or-flight mode with lots of cortisone being released as your body was also constantly arousing (for 30 seconds or less) just to restart the breathing. At worst, your body was suffering significant drops in O2 saturation after every apnea or hypopnea. Regardless, your untreated sleep disorded breathing sleep was very hard on your circulatory system and your brain. So yes, people with untreated OSA have a much higher risk of having a heart attack or stroke. And using a CPAP fixes the sleep disordered breathing, which in turn eliminates all the mini-suffocations and mini-near suffocations, and this reduces the physical stress on the body which in turn reduces the risk of a heart attack or a stroke.

But knowning all that does not make it any easier to figure out how to sleep well with the mask on your nose. And until you work out the problems and teach your body how to sleep well with mask on your nose, you won't feel much benefit from using APAP in terms of daytime sleepiness or daytime tiredness/exhaustion.

And so i come back to this: You need to work on reducing the number and length of the night time wakes that you remember each night. For now, I think that means you need to try to figure out exactly how you are feeling when you find yourself awake in the middle of the night and what do you do when you can't get back to sleep in a timely fashion. If you can give me some insight into what's going on when you first realize that you are awake in the middle of the night, I may be able to give you some ideas to try for reducing the number of night time wakes and the length of time that it takes to get back to sleep.

You're in good hands with robysue1! It might be helpful if you could say more about the nights when you have multiple breaks in therapy, some of them fairly long. You mentioned getting up to go to the bathroom; do you do that more than once a night? Do you take your mask off when you're feeling air-starved and then fall back asleep for a while with it off? Or ....

@robysue1

Thank you for all of the information. It is a lot to take in so I will give you a bit of an update:

As far as the insurance, I spoke with the DME and they said after the initial cost, the monthly charge for the CPAP machine will be 57.00 per month. My insurance now will cover 90% since I met the $400 co-pay. I still don't understand it all because I have a deductible of $2000 but in any case they said my bill for August will be $5.95 or something under $6.

I've set the humidity on auto and heat on auto and will monitor my sinus issues. I think things were thrown off a bit because the heating tube broke this week. Odd thing though is that if I keep the tube in the machine and power-cycle it will register fine on startup. I think too much humidity for me causes issues as in the past when there is tropical humidity outside and the windows are open I have terrible sleep due to congestion. I probably need just a right balance, not too much and not too little.

Here is using my n30i with the chin strap last night at min level 7. I did wake up only once but was able to fall asleep. I think I was out for 8-8 1/2 hours last night.



Thanks again to the community for helping me out!

Miss Emerita wrote: ↑

Sat Sep 14, 2024 11:28 am

You're in good hands with robysue1! It might be helpful if you could say more about the nights when you have multiple breaks in therapy, some of them fairly long. You mentioned getting up to go to the bathroom; do you do that more than once a night? Do you take your mask off when you're feeling air-starved and then fall back asleep for a while with it off? Or ....

Sometimes after going to the bathroom I may end up going downstairs and sadly getting a 1/2 shot of whisky. This calms me down a little so I can sleep again. Other times I also eat some peanuts just to make my stomach a bit full which also helps. I know drinking alcohol at night isn't ideal but I have been struggling for the past 10 years with this so it will be a bad habit to break. I also had a terrible job which ended at the beginning of the year so I'm sure it is going to also factor into all of this and will also take time to recover.

This week has been the first week where I actually took the mask off and fell asleep without it. It might be with the outside air too. I just don't know what is causing this because I don't have allergies and am fine throughout the day. I had the A/C turned on last night and slept with only 1 major (and 2 to shift position) interruption but fell back asleep immediately.

Did you buy the new mattress after you developed problems with trying to sleep on your side or stomach? Or did you buy the mattress first and then discovered that you could not seem to sleep on your side or stomach when using the new mattress?

I developed problems after I had switched mattresses. It wasn't immediate but within 6 months I started having these issues not being able to sleep well and the fatigue.

Alcohol can really mess with sleep. It does make it easier to relax and fall asleep, but then as you metabolize it, it can cause wake-ups. There’s more information here:

https://www.sleepfoundation.org/nutriti ... -and-sleep

These habits can be hard to break, and it can take a month or two before you see the benefits. But you’d really be doing yourself a favor by having no alcohol for at least four hours before you go to bed and none during the night.

Keeping the bedroom on the cool side can help people sleep better, so keep that up.