first night with cpap a total failure - what now?

[PhotoWolf]

Well, on Friday I got a cpap machine from my selected DME. ResMed AirSense 11 with a Evora EVF1XMLA full face mask, set for auto climate and 10cm pressure. I tried using it for the first time last night. Prepared it just the way the gent at the DME showed me, put on the mask, got into bed, and turned it on.

Time spent with the mask and machine on -- 1 hr 6 minutes
Time spent reading (on my phone screen) to try and settle my brain, get used to the mask, and get into a sleeping mood -- about 20-25 minutes.
Time spent trying to fall asleep and failing because I was too tense -- about 30 minutes
Time spent wondering if I should just give up because clearly it wasn't working -- maybe 10 minutes
Time spent actually sleeping -- 0 minutes

I didn't even try to count the number of times I had to moisten my lips because the steady wind kept drying them out. I could feel myself working to breathe against the airflow pretty much the whole time, except when the flow was ramping up.

I finally decided to quit when I noticed a pins-and-needles sensation in both hands and both feet. One hand or one foot 'falling asleep' for whatever reason isn't unusual, but I've had it in all four extremities only twice before in my life. The first time was during my episode of a-fib, when my heart rhythm was so erratic my systolic blood pressure dropped into the 80-90 range. The second time was after a colonoscopy, when I started bleeding into the GI tract and lost about a pint and a half in about five hours. I don't know what the cpap was doing to produce the same effect, but I doubt it was anything good. Like the man said: once is happenstance; twice is coincidence; the third time it's enemy action. I turned the machine off, took off the mask, and that was it for the night.

Suggestions on what to try next?

[Shnoozer]

It's a start.
It sounds like you need some time to settle into it, and spending time awake on the machine, etc. is still good - you will likely get used to it, even if slowly.

[Miss Emerita]

Anxiety can cause pins and needles, and I bet that was what was happening.

Your body needs some time to get used to the new experience. Please set your machine up outside your bedroom during the day or evening and use it while you read, watch TV, or use your devices. The idea is that you start getting used to all this without associating the process of acclimation with bed/sleep. It can really help.

I'd recommend that you do this for at least several days before trying again to use the machine at night. When the time comes that you want to give it a try, don't be looking at your phone or reading or anything else. Just go to bed, relax, and wait for sleep. If it doesn't come in about 20 or 30 minutes, get up and do something low-key until you feel sleepy, then go back to bed.

When you felt you had to work against the flow, was that when you were exhaling, or when you were inhaling, or both?

For your dry lips, try some lip balm. But here's a question: do you breathe through your nose or your mouth during the day?

[robysue1]

Suggestions on what to try next?

Perseverance. As in, you just keep trying to use the machine every night until it gets easier.

I know that's not what you want to hear right now. But learning to sleep with a CPAP machine is a process and it is not accomplished in one night.

You have to make a decision each and ever night before you go to bed: Tonight, just for tonight, I'll try to sleep with the dang thing again and see how it goes. And then you put the dang mask on and you try.

Now for some people, it's a journey with a lot of one or two steps forward, and then a step backwards. But eventually, if you just stick with it, it becomes easier. And once you finally start sleeping well with the machine, then (and only then) can the body start to heal and you start feeling better in the daytime.

For a typical new PAPer? Most new PAPers find the first couple of weeks kind of rough and then things start settling down and by a month or so, they start to notice some improvement in both the subjective quality of their sleep and in how they feel during the daytime.

For a few unlucky ones (like myself) it can take several months to sort out the various sensory problems they're dealing with before they finally start sleeping decently with the machine. But perseverance is the key.

You write:

Time spent with the mask and machine on -- 1 hr 6 minutes
Time spent reading (on my phone screen) to try and settle my brain, get used to the mask, and get into a sleeping mood -- about 20-25 minutes.
Time spent trying to fall asleep and failing because I was too tense -- about 30 minutes
Time spent wondering if I should just give up because clearly it wasn't working -- maybe 10 minutes
Time spent actually sleeping -- 0 minutes

For some people using the machine while awake and far from bedtime helps them learn to relax enough to sleep with the dang mask on their nose. For others, all that does is add to the anxiety of trying to get to sleep.

For what it's worth, I would suggest that you NOT spend time reading on your phone screen while in bed with the mask on in the hope of trying to get into a sleeping mood. The light from electronic devices actually tends to make us less drowsy and less sleepy. If you want to read in bed, then read an old-fashioned book rather than stuff on your phone's screen.

Old insomnia trick: If you're not asleep after trying for 30 minutes, the body is not ready to actually go to sleep (yet). But rather than just giving up, an appropriate strategy is to go ahead and get out of bed and move to a different room. Do a quiet activity that gets your mind totally off the CPAP. Once you are yawning, go back to bed, put the mask back on, and try to get to sleep again.

Yes, this is irritating. Yes, this is hard to do. But just taking the mask off and going to sleep is rewarding the part of your consciousness that does not want to accept CPAP as the new normal. And right now? Your brain is actively working on finding all kinds of excuses for why CPAP can't possibly work for you rather than working on figuring out ways to make it work.

I didn't even try to count the number of times I had to moisten my lips because the steady wind kept drying them out.

For the lips: Licking your lips to moisten them only results in more chapping. It's better to slather them with Lansinoh nipple cream before masking up. Lansinoh nipple cream is a lanolin based cream that is sold to nursing mothers for soothing nipples that have gotten sore, dry, and cracked from nursing. It's sold in the baby aisle of most grocery stores and drug stores. A generic brand will do.

Next, consider the mask. If your lips are getting super dry in a full face mask, there's a decent chance that the mask has sprung an unintentional leak somewhere. So feel around the edges of the mask. The only place where you should feel any air flow out of the mask is at the exhaust vents. If you find mask leaks, then resist the temptation to just tighten the headgear straps. Usually that doesn't work and it can make the leaks worse. Instead, try to pull the mask slightly away from your face and let go so the mask can settle back on your face with the air cushion fully inflated.

You also may want to consider whether you really need a full face mask in the first place. Some DMEs push them on everybody, and discourage people from trying nasal masks or nasal pillows masks. If you are not a dedicated mouth breather during the daytime, there is no good reason to think you need a full face mask at night.

I could feel myself working to breathe against the airflow pretty much the whole time, except when the flow was ramping up.

This is a sensation that I remember all too well from my early days.

It is normal to feel like you are having to work harder to breath against the airflow when you are starting CPAP therapy. And the reason is simple: Your diaphragm and chest muscles are doing some extra work to breathe with the CPAP machine. It takes some practice to get them into shape where breathing with the machine no longer seems weird and where it no longer feels like you're working harder to breathe against the airflow.

But it is also important to try to distinguish between two different sensations: Do you feel that you can't exhale completely and/or that the machine is trying to make you inhale more air that you want to inhale? Or do you feel that you can't inhale completely without working hard to "suck" additional air in and/or the machine is trying to make you exhale more air than you want to exhale? These are both common new CPAPer problems, but they have different "fixes" so to speak. And the fixes for the first problem are likely to make the second one feel worse and vice versa.

It would help us help you if we knew whether you are using a ramp, and if so, what the ramp settings are. (Auto or timed ramp? Starting ramp pressure?)

It would also help to know whether you have EPR turned on and what the EPR setting is. For most people, EPR = 3 makes it easier to exhale fully against the pressure. But if the pressure increase when you start inhaling seems to be out of sync with your breathing, using EPR at a lower setting or turning it off might be a better choice.

I finally decided to quit when I noticed a pins-and-needles sensation in both hands and both feet. One hand or one foot 'falling asleep' for whatever reason isn't unusual, but I've had it in all four extremities only twice before in my life.

My guess is that you were attempting to lie as still as you could possibly lie in bed while trying to get to sleep during those 30 minutes when you were getting more and more anxious about the CPAP. And if that's the case, then as silly as it sounds, your hands and feet probably both did just fall asleep.

A lot of new PAPers have been "active" sleepers when their OSA was untreated: People with untreated OSA often move around a lot in bed simply as part of the body's response to constantly trying to find a sleeping position to minimize the chances of the upper airway collapsing. And then when they put a mask on their nose? Those same people try to fight the urge to just move around in bed, mainly because they're terrified they'll pull the machine off the night table or they'll pull the mask off their nose and trigger a leak. But if your hands and feet are used to moving around a lot in bed, then lying so still that they don't move can easily lead to them falling asleep and starting to tingle. The answer is to move around more in bed instead of trying to remain motionless.

I often tell new PAPers that you need to figure out a way of sleeping in your favorite positions (plural) with the mask on your nose. And if you are an active sleeper who moves around a lot, you will (eventually) figure out how to move with the mask and not create additional problems. (In the meantime? Don't worry too much about leaks and try to make sure that the machine is not so close to the edge of the nightstand that it is easy to pull it off the table.)

The first time was during my episode of a-fib, when my heart rhythm was so erratic my systolic blood pressure dropped into the 80-90 range. The second time was after a colonoscopy, when I started bleeding into the GI tract and lost about a pint and a half in about five hours. I don't know what the cpap was doing to produce the same effect, but I doubt it was anything good. Like the man said: once is happenstance; twice is coincidence; the third time it's enemy action.

If you are that worried about it, you should report the problem to your PCP and to the sleep doc responsible for prescribing the CPAP in the first place and the DME who set you up with your equipment.

But as I said earlier, my guess is that your hands and feet fell asleep because you were lying so still in place in an attempt to not cause a leak or pull the machine off the night stand.

I turned the machine off, took off the mask, and that was it for the night.

You're here, and hopefully that means you are sincerely wanting to make CPAP work. If so, read what I've written and try some ideas and keep in mind that it is a very, very rare new CPAPer who puts a mask on their face and has "success" the first night in any meaningful sense of the word "success."

If you're looking for validation for just up and quitting after one night where you didn't ever fall asleep with the mask on? This is the wrong group.

[Jdougc74]

If you can't give up reading on your device, whether you have an iPhone or Android device, you can reduce the amount of blue light being emitted. This can help you fall asleep.
https://www.digitaltrends.com/mobile/ho ... ter-phone/

[Anonynose]

Another tip for reading, besides just a regular book as has been mentioned, might be a kindle paperwhite? I assume they are still ambient light ... I have an old one and it's more like a book than a blue-light eyeblasting device.

And as noted, make sure you really need the full face mask.

I'm pretty new to this myself, and I was rather pleased that I can at least fall asleep using most masks -- if they are nasal only (and small as possible), cushions/pillows/bleep.

When I tested a full mask.. not so great for me... Sort of curious why they set you up with a full mask from the start, unless it's a pressure thing?

[SMenasco]

Get an Airfit nasal pillow rig. It will solve your problem.

[super7pilot]

My sleep Dr. said that it isn't even close to being normal that folks can just slap on a mask and breath high pressure air and fall into a restful sleep right away. She said it is fine to put on the mask and if it bothers me an hour later. Just take it off and try again the next night. IT TAKES TIME.

She also said that I have been dealing with a loss of restful sleep for years. And that even when I can wear the mask all night. It will take some time to regain that sleep deficit.

What could help is to get a microwave heated bag and lay down in bed and put that warm bag put over your eyes.The darkness and warmth can/should help you relax. Don't put on the mask and hop into bed. Take a couple of Magnesium glycinate pills an hour before bed. Magnesium is known to help calm the nerves and promote relaxation.

[robysue1]

My sleep Dr. said that it isn't even close to being normal that folks can just slap on a mask and breath high pressure air and fall into a restful sleep right away. She said it is fine to put on the mask and if it bothers me an hour later. Just take it off and try again the next night. IT TAKES TIME.

You've got a gem of a sleep doctor!

I am convinced that far too many sleep docs don't tell their new CPAP patients this. And I do think that some of problem of people just giving up is that too few sleep docs are as honest as yours is.

She also said that I have been dealing with a loss of restful sleep for years. And that even when I can wear the mask all night. It will take some time to regain that sleep deficit.

Again, you've got a gem of a sleep doc!

[super7pilot]

My sleep Dr. said that it isn't even close to being normal that folks can just slap on a mask and breath high pressure air and fall into a restful sleep right away. She said it is fine to put on the mask and if it bothers me an hour later. Just take it off and try again the next night. IT TAKES TIME.

You've got a gem of a sleep doctor!

I am convinced that far too many sleep docs don't tell their new CPAP patients this. And I do think that some of problem of people just giving up is that too few sleep docs are as honest as yours is.

She also said that I have been dealing with a loss of restful sleep for years. And that even when I can wear the mask all night. It will take some time to regain that sleep deficit.

Again, you've got a gem of a sleep doc!

https://pulmccsm.uw.edu/people/faculty/justina-gamache she works with the Puget sound VA. In her phone consult with me. She was the one who planted the seeds of doubt about the hyper-reliance on the FL chart. Her words "don't worry about the FL's unless you are on bi-pap and APAP is not Bi-pap"

[PhotoWolf]

Night four report: I went to bed - with mask - at 10:30 and spent the next four hours lying in bed wide awake, every muscle tight and every nerve tense, because I _need_ to be functional at work today, but sleeping was absolutely out of the question as long as that damned wind was blowing up my face like a cheap balloon. The insurance company says I need to use it at least four hours a day for twenty-one of the thirty days after I get it. This was the fourth of those days. So far I've managed to accumulate a total of seven hours over those four days. I have exactly five days left in which to "learn to tolerate" the bloody thing and start meeting quota or the insurance company will call it a failure and cut me off -- and for all I know, that includes any and all further treatment.

I don't have six months to get used to it.

I don't have three months to get used to it.

I have five days.

What can I do?

[D.H.]

I absolutely hate the ramp, but it might benefit you.

[Anonynose]

Night four report: I went to bed - with mask - at 10:30 and spent the next four hours lying in bed wide awake, every muscle tight and every nerve tense, because I _need_ to be functional at work today, but sleeping was absolutely out of the question as long as that damned wind was blowing up my face like a cheap balloon. The insurance company says I need to use it at least four hours a day for twenty-one of the thirty days after I get it. This was the fourth of those days. So far I've managed to accumulate a total of seven hours over those four days. I have exactly five days left in which to "learn to tolerate" the bloody thing and start meeting quota or the insurance company will call it a failure and cut me off -- and for all I know, that includes any and all further treatment.

I don't have six months to get used to it.

I don't have three months to get used to it.

I have five days.

What can I do?

Is it 21 days of the first 30 days, or 21 days of any 30 day period within the first 3 months? Or compliance data isn't compiled until after the first 30 days?

https://www.uofmhealth.org/conditions-t ... compliance

Yeah, try ramp on. And wind shouldn't be blowing up your face unless your mask is loose? I guess you mean the pressure is so great that you feel like a balloon, but wouldn't think you'd feel that balloon-y with a good seal... although perhaps it'll take some getting used to.

And again, are you certain you need a full face mask? Most suppliers let you swap to a new mask if you dislike the one you currently have.

[robysue1]

Night four report: I went to bed - with mask - at 10:30 and spent the next four hours lying in bed wide awake, every muscle tight and every nerve tense

Lying in bed for four hours NOT sleeping is counterproductive. You are training your brain to resent and resist the CPAP. In general, if you haven't fallen asleep in about 20 minutes or so, you need to just get out of bed and leave the bedroom. Settle yourself down and wait until you are yawning uncontrollably to go back to the bed and put the mask back on.

In all seriousness, if you do that two or three times at the beginning of the night, there's a good chance that you will finally fall asleep.

If not, after making several good faith efforts to fall asleep, it may be best to throw the towel in just for tonight. And start over the next night.

The fact that you are lying in bed with "every muscle tight and every nerve tense" also indicates that you need to learn how to move around in bed with the mask on your face. The longer you lie in one position not sleeping, the more uncomfortable it becomes and the harder it is to finally relax enough to fall asleep.

,but sleeping was absolutely out of the question as long as that damned wind was blowing up my face like a cheap balloon.as long as that damned wind was blowing up my face like a cheap balloon.

For most people if the mask is properly sealed, there's very little sensation of wind blowing inside the mask. So the first thing to check: Are you sure the mask is sealed properly? Because even a small leak can make it feel like there's a mighty wind blowing through the mask and hitting your face.

Next, it's important to realize that you may feel a wind coming out of the exhalation vents, and on some masks that exhaust venting can seem like a jet stream. If that's what's bothering you, then you need to switch to a mask with a diffused exhaust venting system. Yes such masks exist. And they can be a godsend for folks like me who can't stand the exhaust flow hitting my arms and chest or bouncing off the covers and back into my eyes. The difference in exhaust venting between the Swift FX (jet plane engine!) versus the P10 (fully diffused and imperceptible) is like night and day.

Finally, you are using a full face mask. It may be much, much easier to get to sleep if you tried a nasal mask or a nasal pillows mask. Why were you set up with a full face mask? Do you breathe through your mouth or your nose when you are awake? If you don't breathe through your mouth during the day, insist on trying a nasal mask or a nasal pillows mask with a diffused exhaust vent.

The insurance company says I need to use it at least four hours a day for twenty-one of the thirty days after I get it. This was the fourth of those days. So far I've managed to accumulate a total of seven hours over those four days. I have exactly five days left in which to "learn to tolerate" the bloody thing and start meeting quota or the insurance company will call it a failure and cut me off -- and for all I know, that includes any and all further treatment.

As Miss Emerita has suggested: The easiest way to get those compliance hours is to just use the machine during the daytime or evening when you are NOT trying to sleep with it. The dirty little not-so-secret is that insurance companies don't typically care when the four hours per 24 hour period occur.

Many new CPAPers do find dragging the machine out of the bedroom and setting it up by a comfy chair and using it there to be very, very helpful. Watch TV with the mask on. Or read in the chair with the mask on. Or web browse. The idea is to sit there in the chair NOT trying to fall asleep while using the mask. This allows your face and your brain to learn how the CPAP feels. It also allows you to learn how to best fit the mask and whether small, but persistent leaks are what's driving the feeling that the dang machine is blowing air at your face. For the time being spend at least 2 hours each evening wearing the mask while sitting in your chair that is outside your bedroom with no pressure on yourself to try to fall asleep.

I don't have six months to get used to it.

I don't have three months to get used to it.

Every person here has had to make compliance during the first month or two or three. Even those of us who had exceptionally difficult adjustments. You are not the first person to face this problem.

It's also worth double checking with your insurance: Most insurance policies have a 60 or 90-day period in order to meet compliance: In other words, most insurance companies don't demand that you have 21 days with at least 4 hours of usage during the first 30 days of having the machine. Rather, they demand that there is a 30 day period in those first 90 days where you met compliance for at least 21 days. In other words, if you manage to use the machine for 21 days during the second or third month, that usually meets the "compliance" requirement for the insurance company.

I have five days.

What can I do?

Call the sleep doc's office TODAY and report that you are having real difficulty falling asleep with the mask on your face and ask for an emergency follow-up meeting with the sleep doc or a PA or nurse to discuss how difficult you are finding it to fall asleep with the CPAP. There are adjustments (mask, pressure setting, even swapping the machine if you don't have a AutoSet) that they can make in an effort make it easier for you to learn how to sleep with the machine. The sleep doc's office can also document that you are making a good faith effort to become compliant and they can run interference with the insurance company in terms of meeting compliance.

The sleep doc (or his PA or nurse) may also suggest using a short course of prescription sleeping medication. If that happens, give it some serious consideration: Some people benefit a lot from taking a prescription sleeping pill for the first couple of weeks. The idea is that the sleeping medication may make it easier to relax enough to fall asleep.

Specifically ask the DME that set you up with the equipment for a different mask. They should do this for free. Sometimes switching the mask works wonders---it's hard to get to sleep with a mask that is genuinely uncomfortable. But masks are in the nose of the beholder: Person A's dream mask can be a nightmare for Person B and vice versa. If you do not breathe through your mouth during the daytime, insist on switching to a nasal mask or a nasal pillows mask. Since "wind" is an issue, insist on being set up with a mask that has a diffused exhaust system.

Turn the AutoRamp feature on if you are not using it. The "wind" at 4cm H2O is significantly less than the "wind" at 10cm. And AutoRamp won't start increasing the pressure until the machine thinks you are asleep because your breathing has settled down into a nice, regular sleep breathing pattern. Timed ramps start increasing the pressure right from the start, and given how tense you are about the whole thing, I'm willing to bet that you're sensitive enough to detect that steadily increasing pressure during a timed ramp period. (I know I was, and back then, there was no AutoRamp.)

For building compliance hours, use the machine during the evening when you have no intention of trying to sleep with it.

Learn more about your machine: Is it a Resmed AirSense 11 AutoSet? Or a Resmed AirSense 11 Elite? Or just a Resmed AirSense 11 CPAP? The label for the exact machine you have is on the left (black) side of the machine right below the SD card slot. These three Resmed AirSense 11 machines have different capabilities, and if you have a Resmed AirSense 11 AutoSet, it's worth asking the sleep doc to switch you from straight CPAP at 10 cm H2O to APAP with a range that would allow you to have lower pressures for some of the night.

Note: If you got stuck with a Resmed AirSense 11 CPAP that doesn't have the word "Elite" on it, you should ask the sleep doc's office if they would write you a script that specifies the Resmed AirSense AutoSet or Elite. The reason why is simple: The plain CPAP records no efficacy data so neither you nor your sleep doc have any idea of whether the machine is "working" on those rare occasions when you manage to fall asleep with the machine. Once upon a time lots of newbies were set up with plain CPAPs that recorded only compliance data and no efficacy data; we used to call those machines "bricks" around here, and the standard piece of advice was to fight hard to get the brick exchanged for an AutoSet if at all possible.

[Anonynose]

I'll also mention that if for some odd reason your supplier won't provide you with a different mask, and if you want to try a nasal, I have some extras that pugsy sent me to try out (being newish here too myself). I'll check the sizes again, most seem small, but maybe you'd want to try one... just PM if interested... free, just asking for shipping costs.

Depends on why you were given the full to begin with ... if for some reason you absolutely have to have it.