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Suggestions/Advice on getting used to CPAP

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Suggestions/Advice on getting used to CPAP

Postby Kelly022688 » Thu Jan 05, 2012 2:03 pm

Any advice will be greatly appreciated, I am at wits end. I am 23 and have been diagnosed with Sleep Apnea about 3 months ago. This is all new to me and I feel completely lost. I have had the CPAP machine for about a month now and have not been able to fall asleep with the mask on yet. I have a full face mask because I have bad allergies and just cannot breathe through my nose on most nights. I work from 8:30am-5:30pm Monday - Friday and every single night I try to fall asleep with the mask on but once it gets to be 2am I have to take it off to ensure I at least get some sleep. I am not sure what my issue with the mask is but I just can’t fall asleep with it on. Today is day 5 of getting less than 2 hours of sleep. I am beyond tired; every morning when I wake-up I burst into tears and instantly feel sick. I really really want the mask to work for me; I would love to know what it feels like to actually have energy for once and not constantly think about how excited I am to go to sleep. I am 23 and all my friends call me "the old lady" because I always need to go to bed early because of how tired I am. Any advice or helpful tips would be awesome, I don’t want to give up but it’s almost to that point. Thanks for listening.
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Re: Suggestions/Advice on getting used to CPAP

Postby Zeleni » Thu Jan 05, 2012 3:05 pm

I had similar problems getting to used to CPAP. I'm seven weeks in and just now feeling comfortable with it. I was not able to see how I could possible get used to it. This is what I did (based on a lot of help from the forum) - hopefully some of it works for you. Just know that not everyone takes to it so easily - you're not alone.

I wore the mask in the evening while awake and watching TV - just to feel comfortable with it on. I kept thinking about how I would have to wear this the rest of my life. But then I told myself I was just wearing it tonight. I let myself sleep with it for only a few hours at first, then four, then the whole night. I drank a lot of sleepy teas (with valerian, chamomile, etc) to calm me down and make me drowsy. I had a problem of waking up in the middle of the night and taking my mask off - so I took some melatonin to help me sleep soundly through the night. If I couldn't sleep after half an hour, I'd leave the bed and watch tv or read a book (especially a boring one that I used to read several times over to help me sleep). After distracting my mind, I'd go back to sleep.

Also, if you're having trouble breathing through your nose, I'd really suggest doing nasal irrigation if you don't already. I'd done it off and on for years, but now I'm doing it consistently and feeling a lot better. If that doesn't do the trick, follow up with your doctor to look into various nasal sprays. I'm finally on one that seems to do the trick.

I'm 28 and fall asleep watching action movies in the theaters. I know how it feels to be the old person in the group!

Good luck and keep at it
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Re: Suggestions/Advice on getting used to CPAP

Postby BlackNGold » Thu Jan 05, 2012 6:16 pm

Hope you end up sticking with the treatment. I can tell you, it was (and still is) a struggle for me to tolerate having the mask on my face, but it's worth every bit of it. I listened to my father gasp for air and watched him wake up soaked in sweat every night, and then die early of an enlarged heart - I'm certain that the apnea shortened his life. Not only that, but you really need to wear the mask for a while to appreciate just how much better your quality of life becomes once you're getting proper rest.

Having said that, here are some things I've done. I have really bad sinus trouble and sometimes couldn't even feel air making it through my nose into my mouth when it was open. After a lot of frustration, I ended up having sinus surgery to fix a deviated septum and turbinate reduction, which helped a lot. However, I still get a lot of congestion, so I end up putting one shot of nasal spray into each nostril just before I go to bed, which opens them up completely. I'm not saying this is the best way, but it's all that works for me. As far as tolerating the mask goes - that is VERY hard for me, too. I've been on this therapy for 8 years, now, and the only thing that will allow me to sleep is to take a Benedryl about an hour before bed. Again, probably not what a doctor would advise, but it makes me sleepy enough to fall asleep. I'd also recommend finding out what things might upset your stomach or cause indigestion and eliminate them, or at least, don't eat them after lunch time. I'm pretty active and like to jog, but I make sure I end my physical activity 3 or 4 hours before bedtime, or else it seems to effect my sleep. Lastly, I try to make sure that I have a bed-time routine and do something quiet right before falling asleep, like reading, TV, whatever soothes you. Don't be afraid to talk to your home health care provider and be vocal about trying new masks, and new sizes of masks. Each person is a little different and there are many to choose from - one might be best for you.

I know it's very frustrating and I wish I had all the answers for you, but I can tell you that it can be better if you stick with it. The benefits to your quality of life will be great over the long run - just keep experimenting and good luck!
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Re: Suggestions/Advice on getting used to CPAP

Postby facedown » Thu Jan 05, 2012 6:52 pm

Does your cpap have a ramp option. I cannot currently use my cpap for other issues, but my going to sleep problem was solved with the ramp. The cpap starts out very low and takes 30 minutes to get to my prescribed pressure. Also I changed from a full mask to one that just fits over my nose. It was easier to sleep with it but it dried out my sinuses pretty bad. I know several other people who are using the nose contraption without any issues. Good Luck and don't give up. Its about your health and you quality of life. take care.....
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Re: Suggestions/Advice on getting used to CPAP

Postby Kitatonic » Thu Jan 05, 2012 7:54 pm

I think that a FFM might be the hardiest to become accustomed to. Just because you have allergies and the nasal congestion, doesn't mean you won't tolerate nasal pillows that shoots air up those nostrils or a nasal mask. For me, the nasal pillow (with a dab of lanolin to prevent irritation) is so minimal that I didn't even need a sleeping pill. My husband likes the nasal mask as he turns over actively. Using a hose hanger unweights the mask off your face, so you don't tighten the straps so much. In this initial period, you have to force yourself to be compliant, so work with your DME/provider to try other masks. Even use a sleeping pill (Ambien SR or Lunesta) and an antihistamine nasal spray so you can get thru the night. You will feel like the 23 y/o you are after CPAP on ALL nights after a few months.
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Re: Suggestions/Advice on getting used to CPAP

Postby robysue » Fri Jan 06, 2012 1:33 am

Kelly022688,

Until you manage to start using the mask all night, every night, it's going to be very difficult to really adjust to sleeping with the mask and it will be very difficult to feel much improvement in your daytime symptoms of OSA. But it does get better in time---if you start by making a commitment to yourself to only sleep with the mask on. More on this later in my post.

You write:
I have a full face mask because I have bad allergies and just cannot breathe through my nose on most nights.
You need to get serious about dealing with the allergies. Do you routinely breathe through your mouth or nose during the day? Once your allergies are genuinely under control, you may find the whole process of getting to sleep with the mask on your nose much easier to do. You might also find that you don't need to breathe through your mouth as much at night, and that may allow you to switch to a more comfortable nasal mask or nasal pillows mask.

So some questions about your allergies:

1) Do you know what you are allergic to? Is it possible to avoid your allergens?

2) What do you currently do for the allergies? Do you take OTC meds only when they get really, really bad and just suffer most of the rest of the time? Are you on any prescription meds? How well do they work and does the doc who prescribed them know that you're still pretty miserable most nights?

3) Do you use a decongestant nasal spray like Afrin a lot of the time? If so, you may be dealing with rebound congestion. And the fix for that is to wean yourself off the decongestant nasal spray.

4) Have you ever tried using a neti pot or sinus rinse bottle? For many people they provide substantial relief from the allergy symptoms.

5) Do you use a prescription nasal steroid spray like Flonase? They can do wonders for nasal allergies and they don't cause the rebound congestion that things like Afrin do.

6) Do you have an ultra-fine (allergy) filter on your CPAP machine or just a regular filter? If you don't know, go back to the DME and insist on getting an ultra-fine filter designed to filter out allergens like pollen.

7) Do you use the heated humidifier for your machine? Have you tried adjusting the humidity level? Some folks get congested if the humidity is too low. Some folks get congested if the humidity is too high. It takes some experimenting to find the humidity level that your particular nose wants.


Now onto the bigger issue: How do train yourself to wear the mask all night long so that the CPAP can do you some good?

As others have suggested, if the problem is anxiety about the mask, wearing the mask during the daytime when you are watching tv reading can help you get more comfortable with the way the mask feels on your face. But don't do that too close to bedtime or you might just make yourself get more anxious about the seemingly impossible task of getting to sleep with the mask on your nose.

About your problems getting to sleep and staying asleep with the mask on you write:
I have had the CPAP machine for about a month now and have not been able to fall asleep with the mask on yet.
...
every single night I try to fall asleep with the mask on but once it gets to be 2am I have to take it off to ensure I at least get some sleep. I am not sure what my issue with the mask is but I just can’t fall asleep with it on. Today is day 5 of getting less than 2 hours of sleep
Sounds like you've got some CPAP-induced insomnia going on.

It also sounds like you're doing two things that are making the situation worse instead of better. First, it sounds like you are lying in bed for hours fighting the mask and fighting to get to sleep every night. Second it sounds like you eventually give up, take the mask off, and then get a small bit of apnea-filled sleep before the alarm goes off. In order to stand a chance of actually adjusting to the machine and getting to where it can help you feel less tired in the daytime, you absolutely must break both of these habits.

It's critical that you make a commitment to yourself to NEVER allow yourself to fall asleep without the mask on: Because every time you consciously allow yourself to fall asleep without the mask on, you allow your unconscious mind, your conscious mind, and your body to continue to believe that you don't really have to adjust to sleeping with mask on. But that doesn't mean that you should lie in bed for hours on end wide awake with the mask on your nose and unable to fall asleep. All that does is get you angry and feed the insomnia and make it worse. The short answer about what to do is this is a variation on an old anti-insomnia strategy:

  • Give yourself about 30 minutes or so to fall asleep with the mask on your nose.
  • If you are NOT asleep at the end of what you estimate to be 30 minutes, assess the situation. If you are NOT making any progress towards getting to sleep, it's time to get out of bed and go to a different room. If you are almost asleep, give yourself a few more minutes before making yourself get out of bed.
  • Once you are out of bed, do something quiet and soothing to both calm yourself down enough to put the mask back on and try again and sleepy enough to have a chance to actually fall asleep within 30 minutes or so. Good things to try include sitting in the dark or semi dark and letting your mind wander; listening to some quiet music; making yourself a cup of warm milk or sleepy time tea; reading a boring book.
  • Only go back to bed when you are both willing to mask up again AND sleepy enough to fall asleep with the mask on. And then repeat the cycle.

At the start you will have some rough nights where it will feel that you are out of bed more than you are in bed. But if you stick with this strategy, you will eventually teach yourself that it is ok to fall asleep with the mask on and that it is ok to stay asleep with the mask on.

Please note that I had a long and difficult adjustment to CPAP mainly because of insomnia issues. Even before CPAP I was prone to bouts of insomnia whenever I was under much more stress than normal. And so I started out my battle with my own insomnia I wound up working with a PA in the sleep doctor's office for several months before finally starting to get my insomnia under control through cognitive behavior therapy. Along the way, I've written a lot about CPAP insomnia both here and on another CPAP forum. Because you write:

I am beyond tired; every morning when I wake-up I burst into tears and instantly feel sick. I really really want the mask to work for me; I would love to know what it feels like to actually have energy for once and not constantly think about how excited I am to go to sleep. I am 23 and all my friends call me "the old lady" because I always need to go to bed early because of how tired I am. Any advice or helpful tips would be awesome, I don’t want to give up but it’s almost to that point.


I think you need to see my full essay on dealing with CPAP-induced insomnia. Not all of it will apply to you and your situation, but I think that you will find much of what I write will resonate with you and I think you will find many of my tips worth trying. So here's the long version of my advice on what to try in order to get over the hump of adjustment.
********************

So now you're "sleeping" with the mask, only it doesn't feel like you'll ever get sleep (or stay asleep) with the mask on: Taming the CPAP-Induced Insomnia Monster

By RobySue.

INTRODUCTION
Sleeping with a six foot hose attached to your face is not exactly natural. And it's no surprise that lots of people have some trouble getting to sleep and staying asleep at the start of their xPAP therapy. After all, there's a lot to get used to:

    sensory overload triggered by the air blowing into your nose; the noise the machine makes; the sensation of the mask on your face; possible leaks waking you up, aerophagia; a dry mouth; a dry nose; skin problems triggered by the mask; a sore nose and/or sore nostrils; headaches caused by a mask being over tightened; an over awareness of your own breathing, etc. etc. etc.

    mask issues including properly tightening the mask (is it too tight? is it too loose?); mask leaks blowing into your eyes or onto your lips; exhaust flow from the mask bouncing off the covers and back into your eyes or onto your chest; removing the mask in your sleep; wanting to remove the mask so that you can get to sleep; worrying about leaks so much that you are not able to properly relax to get to sleep; and worrying about dislodging the mask to the point of feeling like you can't move around in bed as much as you'd like.

    pressure issues including a feeling that your breathing is so abnormal that you can't relax enough to fall asleep; difficulties with exhaling against the pressure; difficulties with feeling like you can't properly inhale or can't get enough air through the mask---particularly during the ramp period (if you use the ramp); feeling like the machine is rushing you to inhale when the exhale relief system is turned on; too much air in your mouth, swallowing air, aerophagia, etc.

    humidifier issues including rainout; congestion caused by too little or too much humidity; air feeling too warm, too wet, too cold, too dry; worrying that the humidifier may run dry.

    hose issues including getting tangled in the hose when you want to turn over; disliking the feel of the hose when your arms or chest bump up against it; weight of hose pulling the mask out of position; feeling tethered or trapped by the hose, etc.
And as this lengthy list makes clear: Some of us face a pretty step learning curve for learning to sleep and sleep well with a mask on our faces.

For most new CPAPers, it's only a matter of time before the problems with getting to sleep and staying asleep start to resolve themselves. And sleep begins to return to normal---in the sense of falling asleep in a timely fashion after going to bed at a decent bedtime; having few or no awakenings in the middle of the night; having no problems getting back to sleep quickly after these awakenings; sleeping through until morning and waking up feeling more rested and more refreshed than when you went to bed.

But for some new CPAPers, instead of slowly beginning to resolve themselves within the first month of therapy, these problems grow worse and worse. Eventually they may cascade into full fledged CPAP-induced (or CPAP-enhanced) insomnia: And this causes additional problems with sleep fragmentation and sleep deprivation. So in addition to the discomfort and trouble of dealing with all the physical aspects of adjusting to CPAP, these new CPAPers find themselves unable to fall asleep night after night or they wake up night after night feeling anxious, worried, angry, or simply deeply uncomfortable and desperate for sleep. Sometimes a sufferer of CPAP-induced insomnia trys to just gut it out, hoping that things will soon get better (and they don't). Other times, in the wee hours of the morning the sufferer will simply give into their baser instincts and rip the mask off (in frustration and disgust) so they "can get some sleep."

And until the sufferer of CPAP-induced insomnia starts to work on addressing both the the insomnia itself as well as the specific CPAP issues that may be triggering the insomnia, it will be very difficult to make a complete adjustment to CPAP. Moreover it may be difficult to subjectively feel any of the real benefits from CPAP until the insomnia is under control.


SIGNS THAT YOUR PROBLEMS WITH GETTING TO SLEEP OR STAYING ASLEEP WITH THE MASK ON MAY BE DEVELOPING INTO CPAP-INDUCED INSOMNIA
So how do you tell if your problems getting to sleep or staying asleep with the mask on are threatening to turn into full fledged insomnia? Here are some sure fire signs that what you are dealing with is becoming an insomnia monster:

    You've suffered from insomnia before and what you are going through feels like insomnia to you. If you've fought an insomnia beast before, you know what it feels like. Trust your instincts even if you're at the very beginning of your therapy. For me, my CPAP-induced insomnia was clearly settling in by my third night of using the CPAP machine. And I knew that it was starting to feel like my previous bouts with insomnia even though the trigger was quite different.

    Your problems with going to sleep or staying asleep are still around after a month of using CPAP and/or they are seriously affecting the quality of your life. This is about the standard time frame of when occasional problems with insomnia are considered to have become chronic problems. If insomnia problems have not started to resolve themselves within a month, they likely won't resolve completely on their own. You will need to do some work to tame the insomnia beast before it gets even larger.

    You start dreading going to bed night after night. And so you delay going to bed as long as you can.

    You lie in bed for what feels like hours on end unable to go to sleep (or get back to sleep) on many nights. And while you are lying in bed, you may also be focusing on just how uncomfortable the whole CPAP thing is: The mask is bothering your nose. Or the noise from the machine is keeping you awake. Or the air being blown down your throat starts to tickle the back of your throat. And so on and so forth.

    You consciously rip the mask off on many nights in order to finally get some sleep. Sometimes the decision is made early in the night after not being able to get to sleep for an hour or more. Other times, the decision is made much closer to dawn when you can't get back to sleep after awakening--often due to some CPAP-related issue like a leak.

    You feel more ALERT and AWAKE after you put the mask on for the night than you did before you masked up. And you can't seem to get yourself settled down and relaxed enough to fall asleep in a timely fashion.

    You start sleeping irregular hours in an attempt to get "caught up" on your sleep. Once you finally get to sleep at some ridiculous hour in the early AM, you are very reluctant to wake up and get out of bed at your normal wake up time---because you need the sleep. Only getting up late in the morning then causes more problems with getting to sleep the next night ...

    You worry about all kinds of things when you are in bed or preparing to go to bed: You find yourself worrying about all the CPAP stuff; worrying about how little sleep you are getting; worrying about how long you've been lying in bed trying to get to sleep; worrying about how soon morning will come; worrying about whether the CPAP is doing anything for you or not; worrying about the fact that your sleep subjectively feels much worse now than it did before you started using CPAP; worrying about the worrying itself; etc. etc. etc.
And if any of these behaviors describe what's happening to you, then here's my advice as someone who's been there and done that: Don't ignore the CPAP-induced or CPAP-enhanced insomnia. Because until you start to work on addressing both the specific issues that may be triggering the insomnia and the insomnia itself, it will be very difficult to make a complete adjustment to CPAP, and you may very well not be able to subjectively feel any benefits from CPAP until the insomnia is under control.


SO WHAT TO DO ABOUT CPAP-ENHANCED OR CPAP-INDUCED INSOMNIA?
The first thing to do if you think that CPAP-induced insomnia may be setting in is to not ignore it. Start by using standard self-help tips for all insomnia suffers. But in addition to the standard tips, be aware of how the CPAP itself may be adding to the insomnia and work on addressing those issues as well. Start dealing with the CPAP-induced insomnia by taking the following steps:

    Pay attention to your sleep hygiene. If you've never fought a battle with insomnia before, you may not be aware of sleep hygiene. But there are common behaviors that tend to aggravate insomnia (particularly once it starts) and sleep hygiene is all about replacing those behaviors with ones that will help tame the insomnia rather than feeding it. A typical set of good sleep hygiene guidelines can be found at http://www.umm.edu/sleep/sleep_hyg.htm . Read through the list and critically examine your own behaviors when you can't fall asleep to identify which of the good sleep hygiene practices may be most important to implement immediately and which you can work on over time. Sleep hygiene practices and CPAP use are discussed in more detail later.

    Identify specifically what kinds of things are triggering the insomnia. Write down a list of everything that you think is making it hard for you to both get to sleep and stay asleep. Write down specific things that you can identify. Keeping a sleep log for a week may help if you can't already identify which parts of CPAP are causing you to lose sleep. And start working on CPAP problems such as leaks, mask fit, masking the noise of the machine, etc.

    Use a sleep log. The use of a sleep log may help you focus on which of the insomnia triggers are most critical to address and solve and which can wait. It may also help you see subtle, but positive changes in how you are feeling with the use of CPAP. And it will help you determine whether the insomnia is getting worse, stabilizing, or beginning to get better. Keeping a sleep log is not all that difficult. You can use a notebook or a spreadsheet to do it. Here's how to do it:

      Every MORNING after you get up write down the following information:
      • What time you actually went to bed
      • Estimate of how long it took you to fall asleep (See Note 1 below)
      • Estimate of how many times you woke up during the night
      • Time you got up for the morning
      • Estimate of total time you slept during the night (See Note 1 below)
      • Comments on how you feel upon waking up for the day (See Note 2 below)
      • Additional comments on any wakes that you feel were disruptive or problems you had getting to sleep. They don't need to be very long or elaborate. Something like: "Woke up twice with mask leaks bothering eyes" is plenty enough detail.
      NOTE 1: The time estimates are just that: Estimates. The accuracy of these estimates is not important---what's important is your subjective feeling about how long it took to fall asleep and how long you actually slept during the time you were in bed. So don't base the time estimates on data generated by looking at a clock. Looking at the clock is a BAD idea since it tends to create worrying about how little sleep you're getting and how little time there is left before morning.

      NOTE 2: The comments about how good or bad you feel when you wake up are critically important. When your adjustment to CPAP starts to go better, you will likely start to see some (minor) changes in how you feel when you wake up. It might be as simple and as minor as "usual headache seems less intense this morning". For me, the first noticeable positive change due to CPAP was that I was no longer waking up with low grade pain in my feet and hands every single morning.
    Make a CONSCIOUS decision each and every night to sleep with the mask on JUST FOR TONIGHT. Yes, it's easier to sleep without the mask on---particularly at the beginning. But every time you consciously choose to sleep without the mask, you are making it that much harder to mask up the next night. Tackle the "I can't believe I have to sleep with a hose for the rest of my life" issues one night at a time.

    Report the insomnia to the sleep doctor's office. Ask to speak with a nurse or a PA and give them as many specific details as you can about what's causing the problems with getting to sleep and staying asleep. If all you can say is, "I can't seem to sleep with the CPAP on," they will simply say, "Give it more time." But if you can give them specific problems, that gives them something to work on.


A CLOSER LOOK AT SLEEP HYGIENE FOR CPAP-INDUCED INSOMNIA
The basic idea behind good sleep hygiene for a new CPAPer with insomnia problems is to help you teach your mind and body to make a deep triple association that

    Being in Bed = Time to Sleep = Time to Mask Up
Many insomniacs make their insomnia worse by falling into certain behavior patterns that either make it more difficult to fall asleep or more difficult to remain asleep. Good sleep hygiene practices are designed to break these behavior patterns by replacing them with behaviors that are more conductive to encouraging sleep. Many of the good sleep hygiene practices are nothing more than common sense. But some of them are counter intuitive and require some effort to implement. But they all focus on the need to teach your mind and body to make the deep association that Being in Bed = Time to Sleep.

For new CPAPers, there is the additional challenge of teaching both mind and body to make a further deep association that Time to Sleep = Time to Mask Up. And unfortunately, many newbies who find sleeping with the mask is causing them further problems with fragmented sleep and daytime exhaustion and sleepiness, choose behaviors that seriously undermine establishing the critical association that Time to Sleep = Time to Mask Up.


GOOD SLEEP HYGIENE PART 1: THE BEDROOM AND SLEEPING ENVIRONMENT
Remember the basic idea behind good sleep hygiene is to help you teach your mind and body to make a deep association that Being in Bed = Time to Sleep.

In order to make this deep connection: Do NOT use the bed for anything except sleep and sex. Lying in bed reading, watching tv, web browsing, texting, talking on the telephone, and eating are all teaching your body that the bed is NOT a special place reserved for sleep and sex. And that it is perfectly ok to be in bed and wide awake doing things that can be done in many other places in your house or apartment.

So---kick the tv and other electronic gadgets out of the bed room. Try to avoid reading in bed.

Take the time to make sure your bed is comfortable. And that the room is sufficiently dark for sleeping for your entire sleep period. If outside lights are a problem, consider getting blackout shades or learning to sleep with an eye mask.

Quietness is important as well---although it can be too quiet if you have tinnitus or if the noise of the CPAP starts to bother you. In that case a bit of white noise or soothing music played at a very low (almost inaudible) volume may help. Earplugs will make tinnitus worse and may make the noise of the CPAP machine worse if the noise is being conducted through your hose. Keep the temperature in the bedroom cool enough where you won't get hot, but not uncomfortably cold.


SLEEP HYGIENE PART 2: GOING TO BED AND GETTING TO SLEEP
The first and most important rule of good sleep hygiene is: Only go to bed when you are sleepy.

Sounds simply enough. But note that feeling sleepy is not the same as feeling tired or exhausted. It is nearly impossible to fall asleep if you are not sleepy regardless of how tired or exhausted you feel. And so it is critically important to learn to distinguish between feeling sleepy and feeling tired. Sleepiness is involves both your mind and your body. It is a positive feeling for most people. For many people, sleepiness is characterized by yawning, stretching, and the eyes getting droopy and heavy. Tiredness and exhaustion tend to be more related to how the body feels rather than how the mind feels. And being over tired or over exhausted can make it harder to fall asleep.

Other important things to keep in mind about going to bed:

Take time to establish a bed time routine. This helps both the mind and the body start to relax and feel sleepy. What your routine consists of is entirely up to you.

If all the new CPAP-related stuff that needs to be done before you mask up for the night is making you MORE AWAKE and LESS SLEEPY at bedtime, then do as much of the CPAP stuff early in the evening. Fill the humidifier up and put the mask, hose, and machine back together for the night around supper time. Prefit your mask in need be. Wash your face right after supper time instead of waiting until bedtime. All of this will minimize the fussing with the machine right at bedtime and minimize the tendency of taking care of the equipment waking you up right before bedtime.

Don't go to bed angry---and this includes anger directed at the CPAP or the OSA itself. It's hard to be sleepy and angry at the same time. Work out the anger and then go to bed.

Try to establish a reasonable and consistent wake up time and a reasonable and consistent bedtime. Waking up and going to bed at more or less the same time all seven days a week helps the body and mind start to get sleepy at the right time each night. It also helps the body know when to wake up and that in turn helps it sleep better during the hours that it is in bed. Pick the wake up time first---be sure it is something you can live with on both weekdays and weekends. Then count backwards by the amount of sleep you typically need to function at your best in order to determine the bedtime. While it's important to get enough sleep every night, it's also important to realize that oversleeping can leave you groggy and not at your best. Most people seem to need somewhere between 7 and 9 hours of sleep each night. If you don't know how much you need, guess that you need about 8 hours.

If you are NOT sleepy at your regular bedtime, wait until you ARE sleepy before going to bed.. Remember: You can't fall asleep if you are NOT sleepy. So if you are NOT sleepy, you don't belong in bed. If you are not sleepy at bedtime, try to do a quiet relaxing activity that will let you wind down and become sleepy. A cup of warm milk might help. A bit of bedtime reading (but not in bed) might help.

Get up at your regular wake up time regardless of how much or how little sleep you got the previous night. If it was a bad night for the insomnia, you will be tired and exhausted during the day. But sleeping late to make up for a bad night will make it harder for you to go to bed on time the next night because you will likely not be sleepy at bedtime. And that perpetuates the insomnia.


GOOD SLEEP HYGIENE PART 3: WHAT TO DO WHEN YOU CAN'T SLEEP BECAUSE OF THE CPAP
Remember: The basic idea behind good sleep hygiene is to help you teach your mind and body to make a deep association that Being in Bed = Time to Sleep.

And the basic idea of adjusting to CPAP itself is to teach your mind and body to make a deep association that Time to Sleep = Time to Mask Up.

So in dealing with CPAP induced or enhanced insomnia, the goal becomes to make a triple deep association:

    Being in Bed = Time to Sleep = Time to Mask UP
So anything that undermines this (triple) goal has to be dealt with. Common things that CPAP-induced insomniacs do that undermine this triple association include:

Lying in bed AWAKE for hours fighting with the mask. It takes time to master all the details of masking up every night. But lying in bed for hours while awake and fighting with the mask is counterproductive: It's teaching your body how to stay awake and resist the mask instead of sleeping with the mask. So allow yourself to spend about 30 minutes fighting the leaks or the mask straps or the feeling that you cannot stand to have the mask on your face. But at the end of 30 minutes, if you are not sleepy and still actively fighting with the mask, get out of bed, go into a different room and do something that will help you get your mind OFF the mask and CPAP problems and that will also help you start to relax and feel sleepy enough to try going back to bed and masking up again.

Yes, getting out of bed is counter intuitive. But it's really important: That's the only way to reinforce that being in bed is reserved for two very special biological functions: Sleep and Sex.

Consciously taking the mask off (often because of frustration about not being able to fall asleep with the mask on) and then sleeping part of the night without the mask on. The ultimate goal for the OSA sufferer is to make using CPAP a daily habit---something you don't over think and over worry about---sort of like brushing your teeth each night. (And yes, I know how ridiculous that sounds.) But every time you allow yourself to consciously fall asleep without the mask on, you are teaching your conscious mind that it does NOT really need to accept sleeping with the mask. And that in turn makes it that much harder to both mask up the next night and fall asleep with the mask on the next night.

So if you absolutely cannot stand the thought of having the hose on your nose for one more minute, it is time to get out of bed, go into a different room, and settle yourself down. This will involve dealing with the anger or anxiety you may be feeling toward the machine. You can't fall asleep if your mind is angry or over anxious. If the problem is discomfort triggered by the machine, try to think about how to solve the problem while you are out of bed. Return to bed only after you are calm enough to mask up again and sleepy enough to be in bed.

Watching the clock tick away. Wake up, look at the clock, and worry about the time, and how the clock time tells you how little sleep you have gotten so far; how little time remains for sleep before morning comes and the alarm goes off; and how difficult it will be to get through the day because of how little sleep you will have gotten during the night. This is a common behavior pattern for insomniacs; it is counterproductive because it allows your mind to continue to believe that it is OK to be in bed and be wide awake worrying about the time (and other things) instead of being asleep in bed.

For CPAP induced insomnia, watching the clock also leads to worrying about compliance time. (Have I got my four hours in for the night?) Which in turn leads to a habit of taking the mask off at the end of four (sleepless) hours and deciding to try to get a bit of (badly needed) sleep without the mask before the alarm goes off. Which in turn leads to worrying about how much harder it is to sleep with the CPAP than without it, and worrying about how much worse you feel in the daytime with CPAP than without it.

The only solution to watching the clock is to get rid of the clock! For many folks, simply turning the clock so that it faces away from the bed is enough. But if you find yourself waking up and turning the clock around to find out what time it is, you will need to move the clock away from the bed to a spot where you cannot see it from the bed when you wake up.

If you normally sleep well past dawn and you find yourself awake in the bed in the early morning and worrying about the time (and how little you have slept during the night) because the room is now light, you may need to get some black out shades for the windows so the dawn's early light doesn't give you time clues about how much or how little time you've been asleep. Black out shades will also eliminate waking up because of the morning light shining in your eyes as well.


SLEEP HYGIENE PART 4: ADDITIONAL RULES FOR NEW HOSEHEADS
These rules are designed to help teach your body and mind to make that deep association that Time for Sleep = Time to be Masked Up.

Never consciously go to sleep without the mask on your face. Every time you choose to consciously go to sleep without the mask on your nose, you are allowing your mind and body to continue to deny the need to learn to sleep with the hose. So don't do it.

Do NOT consciously remove the mask at night so that you can "finally get some sleep." For the same reasons as the first rule, obviously. If you are tempted to just remove the mask so you can "get some sleep," it's time to get out of bed, go to a different room, and settle yourself down. Do some kind of quiet, soothing relaxing activity to take your mind off the mask. And return to bed only after you are both sleepy enough and calm enough to face masking up again.

If you wake up without the mask on, calmly put the mask back on, turn the CPAP back on, and try to get back to sleep. Don't bother to analyze why you took the mask off in your sleep during the middle of the night. While you are fully responsible for decisions you make when you are awake, you can't control what your unconscious mind does when you are asleep. However, make notes about this behavior in your sleep log the next morning and during the daytime, try to trouble shoot the problem.

Try not to dwell on the "I have to do this forever" aspect of adjusting to CPAP. Yes, being diagnosed with OSA and prescribed a CPAP seems like a life sentence. But tackle the problem one night at a time. Each night at bedtime, make the decision just for tonight to sleep with the hose one more time. Don't worry about tomorrow night (and the following night and the night after that and so on) until that night gets here.


WHEN SLEEP HYGIENE IS NOT ENOUGH
Sometimes following the self-help guidelines is not enough to slay the insomnia beast. In general, you should seek help from your sleep doctor if your CPAP-induced insomnia:

  • becomes severe enough to cause serious problems with your daytime functioning,
  • is causing you to think seriously about abandoning CPAP therapy altogether because you believe you sleep better without CPAP than with it,
  • is caused by serious CPAP adjustment issues, such as aerophagia or mask leaks or air getting into your eyes that you have not been able to fix or address sufficiently well on your own or with help from forum members,
  • has not responded sufficiently well after using self-help guidelines for several weeks, or
  • is continuing to get worse in spite of using self-help guidelines.
When you contact your doctor's office, you should ask to speak to a nurse, PA, or the doctor about the combination of CPAP adjustment problems and insomnia. This is particularly important if the doctor who is tracking your progress with adjusting to CPAP is your PCP and not a sleep specialist. If asked what the problems are, try to give the receptionist a short list of the major problems, but don't be overly vague either.

When you get a chance to talk or meet with the nurse, PA, or the doctor, be prepared to discuss the things you believe are feeding the insomnia. Include both CPAP and non-CPAP issues if the insomnia is being fed by multiple things going on in your life. Also be prepared to discuss at length what measures you've already taken to treat the insomnia---either on your own or with the advice of your PCP if you are now talking with someone in the sleep doctor's office.

If you have been keeping a sleep log, use it to refresh your memory about what issues seem to be triggering the insomnia. Bring a copy of the sleep log with you to give to the nurse, PA, or doctor at your appointment. If possible see if you can drop the sleep log by the doctor's office one or two days in advance of your appointment so that the person you are seeing has a chance to review it before the appointment. If you don't already keep a sleep log, the nurse, PA, or doctor will likely suggest that you start one.

The nurse, PA, or doctor will likely offer you a prescription for sleeping pills of some sort or suggest doing serious behavior therapy work on cleaning up your sleep hygiene, dealing with any anxiety issues, and consolidating your sleep cycles. Or he/she may suggest combining the two approaches. So you need to know how you feel about taking sleeping pills or doing behavior therapy work before you talk to your medical practitioner.

The BEST approach to therapy for CPAP-induced insomnia depends on YOU.
Different people have different comfort levels with taking daily medication and with their reactions to the commonly prescribed sleeping medications. You need to think carefully about which approach is most in line with your own preferences for your medical care. And the right choice for me may well be the wrong choice for you.

It's also important to remember that the treatment of your combination of insomnia and CPAP adjustment problems is NOT an either/or decision: Drug based treatments may be more effective with a bit of an effort to change some particularly counter productive behaviors. And even the most committed of CBT patients may need a small bit of drugs as a back up measure to prevent too many disastrous nights in a row for example.

Drug based treatment.
You may be comfortable with trying a short course of prescription sleeping pills such as Ambien, Lunesta, or Sonata. You might also be comfortable taking a supplement like melatonin on a nightly basis or an OTC sleeping pill. But at the same time, be sure to educate yourself about the pills you are using: What's the correct way to take them? How long should you expect to take them nightly---several weeks or months or permanently? How likely are they to cause rebound insomnia? When should you try to wean yourself off the pills? What's the proper way to wean yourself off them? All these are things that you will want to discuss with your specialist---even if you are using OTC sleeping pills.

And when you're given that prescription for a nightly sleeping medication, your doctor will still likely tell you to pay attention to the most basic rules of sleep hygiene: Don't watch tv or read in bed. No caffeine after lunch. Try to get up at the same time on weekends. etc. Follow the suggested rules. They will help the sleeping medication be more effective and make it easier to discontinue it when that time comes.

Anxiety and claustrophobia may still be issues even if you are taking a nightly sleeping pill. If simply using the CPAP causes the anxiety for you, you may need to do some cognitive behavior therapy to get over the anxiety of masking up. Likewise if you are claustrophobic and the mask aggravates that you may need to work on simply getting used to putting the mask on your face. The most commonly suggested thing is to drag the cpap machine out of the bedroom in the daytime and use it when you are watching tv or reading. If the anxiety or claustrophobia is severe, you may even have to start with simply holding the mask over your nose for a few minutes at a time. And in severe cases, the specialist you see may suggest a prescription anti-anxiety medication. Or formal cognitive behavior therapy or both.

Cognitive Behavior Therapy for Fighting Insomnia
If prescription sleep medication is something you are not particularly comfortable with your specialist is likely to stress a cognitive behavior therapy approach to treat both the insomnia and the CPAP adjustment issues. Such approaches usually focus heavily on a collection of behaviors know collectively as good sleep hygiene as well as dealing with any anxiety issues you might have with behavior therapy: There are ways to slowly overcome anxiety that is induced by putting the mask on for example.

If you decide that you want to fight the insomnia largely through CBT rather than relying on sleeping medication, here's what you need for it to be successful:

  • a great deal of patience: CBT is a long term solution---you'll see improvement over the course of weeks and months not days
  • self discipline: If you cannot force yourself to do the hard work of changing your behavior (permanently) then CBT will likely not work for you.
  • a desire for a drug-free or largely drug-free approach to fighting the insomnia: If you have no problems with taking sleeping medication (and many people don't), a combined plan of attack with moderate amounts of expectations of changed behavior may work far better than trying to make serious, long lasting changes in your behavior patterns.
And here's what to expect from a CBT approach to fighting insomnia:

  • Strict adherence to all the standard good sleep hygiene rules, with further restrictions on things like caffeine consumption
  • Keep a detailed sleep log to establish the slow, but steady progress
  • (Temporary) sleep restricted schedule for several weeks to several months: Your time in bed may be artificially restricted to six hours (or less) in an effort to consolidate your sleep cycles. The time in bed will be increased only after your insomnia begins to abate in the sense of latency to sleep onset, number of night time awakenings, and estimated total sleep time.
  • Gradual return to a normal sleep schedule: Once the sleep cycles are looking like they've begun to consolidate, the increase in time in bed will be done incrementally by very small amounts---in my case, the increments are 15 minute intervals. And if any problems arise, it's back to the previous bedtime until the problems resolve themselves.
  • Inevitable (temporary) set backs and plateaus: There's a lot of two steps forward, one step back in the process.
  • A willingness to consider some occasional use of prescription sleeping medication to prevent too many disastrous nights in a row from piling up: You may be asked to consider taking an Ambien, Sonata, Lunesta, etc. the night AFTER you've had a particularly bad night. Or possibly the night after you've had two particularly bad nights in a row. Typically you get to define what "particularly bad night" means in terms of the insomnia.
  • A willingness to consider melatonin or herbal supplements that may be more acceptable to your notion of how much medication you are willing to take.
In a CBT approach, your caretaker will also spend time talking to you about how insomniacs often over estimate the time they are awake during the night and underestimate the time they are asleep. Simply knowing that you are likely drifting in and out of sleep during restless periods where you're not WIDE AWAKE enough to warrant getting out of bed is very useful in controlling the worries in the middle of the night. And this knowledge may allow you to focus more positively on the sleep you got instead of negatively on the sleep you wish you'd gotten.

If stress, anxiety and/or claustrophobia are also issues feeding the insomnia, your sleep specialist may also recommend getting CBT from a CBT specialist for learning how to better cope with those issues that go beyond the scope of the sleep specialist's training.
current settings Min EPAP = 4, Max IPAP = 8 and Rise time = 3

8/1/2010 sleep study results:
AHI = 3.9 [AHI = (#OA +#CA + #H w/desat) per hour]
RDI = 23.4 [RDI = (#OA +CA + #H w/desat + #H w/arousal) per hour]
Dx: Moderate OSA
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Re: Suggestions/Advice on getting used to CPAP

Postby zephyr » Mon Jan 09, 2012 2:38 pm

Just one other suggestion:

Since you have Perennial rhinitis, have you tried a (prescription) corticosteroid nasal spray?

I've always had that problem I also have asthma and am told its all related. I have used two products:

1) Rinocourt aqua (Budesonide)
2) Avamys (Fluticasone Furoate)

Both work well for me. (I find liquid suspension spray works better the dry powder version.)

One note:

This weird but you have to point the spray in the nose toward the back of the head, not strait up the nose. I just learned that recently. I didn't realize the sinus run back under the eye socket not strait up from the nostril.......
Resmed S9 Elite / Humidaire H5i Heated Humidifier
Swift LT nasal Pillow mask
diagnosed Sept 2010
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Re: Suggestions/Advice on getting used to CPAP

Postby Kelly022688 » Mon Jan 09, 2012 3:35 pm

Thank you all so much! Especially zephyr with all the extremely useful info! I have made some decisions that I think will help me get through this. First off I have a Dr. appointment this week to discuss with my doctor my issues with breathing through my nose. I bought a few nasal sprays over the counter but I feel like they sometimes make it worse so I will try to get something appropriate prescribed to me by my doctor. It’s interesting that you said asthma has something to do with your Perennial rhinitis because I also have asthma and never put two and two together. I figured out my issue with the full face mask is that once I finally get comfortable and start to nod off somehow the mask moves just the slightest bit and air goes shooting into my eyes and I am now wide awake. As far as the insomnia goes I feel like that may have had to do with the extra stress I have been under lately. I took down advice from all of you and made a list of things that will help me fall asleep faster and it did help. Some suggestions didn’t work too well since I live in a studio apartment but I did what I could. I have been taking benedryl before I go to bed to promote extra sleepyness, I am sure that’s not all that great for me so I will be discussing that with the doctor as well. I am still trying to sleep with the full face mask on but haven’t had much luck because of the leakage into my eyes. After I fix the issues with my nose I am going to try either a nasal mask or nasal pillows. Does anyone have any suggestions on which works better? I remember trying the nasal pillows and not liking them too much, but I am afraid that if I use the nasal mask I will have the same issue with the leaking air.
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Re: Suggestions/Advice on getting used to CPAP

Postby Vicki » Mon Jan 09, 2012 6:27 pm

Kelly,

If your mask is leaking into your eyes, it probably just needs a simple adjustment. Lay down, turn on your PAP and adjust the straps for the top part of your mask a little bit tighter until your mask doesn't leak. A lot of leaks are just adjustment issues. You have several options, if your leaks can not be compensated by adjusting the straps, there are a lot of full faced (FF) masks on the market. If you want to try a nasal mask, then you have to be sure your nose issues are under control or else you will open your mouth which will negate your therapy. Read my sticky post at the top of this forum called "Sinus Irrigation How To". I wrote it mainly for people with allergies and other congestion. I have allergies and congestion as well. I also had my sinsus roto routed and turbinates reduced and that will help you a lot with CPAP compliance. Besides corticosteriodal nasal sprays, which I also used for years, you could try Pantanase, which is nonsteroidal. I switched to Pantanase and it works for me as well as the steroidal sprays. It doesn't taste too pleasant however

Vicki
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Vos Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Re: Suggestions/Advice on getting used to CPAP

Postby zephyr » Tue Jan 10, 2012 10:24 am

I'm glad to hear this has been helpful. There were some really well thought out replies posted.

It was actually my Sleep doctor who told me the same mechanisms that cause asthma causes the rhinitis. He said it all the same system and similar tissues from the nose though the respiratory tract.

He told me that after i mentioned, I has asthma. It turned out he had studied under the respirologist I was seeing at time. I was one of "lucky few" who caught H1N1 and landed in ICU with a serous pneumonia. It was a respiratory tech there who suggested I get sleep study done when I was asking about my snoring. It's fumy how things connect.

Don't be afraid to try few different products, if the first one doesn't work, it can be a bit of a trial and error process to find whats right right for you. I've had good success with ones I mentioned.


My primary mask is a swift LT nasal pillow style so the sprays are key to my being able to use it. I did pick up a secondary mask for when I get a cold or if for some other reason if my nose is to congested to use the LT. I chose the swift Lt because on my sleep study I had nasal mask that blew in my eye whenever I laid on my side...nasty..... I was wary of the quarto as a backup but it actually didn't leak on me. That said the repository tech who fitted me did mentioned it generally didn't work well for people with a low nasal bridge especially people of Asian decent because they tend to have trouble getting good seal .

It might be worth a second visit to the place that fitted you to verify that the adjustment is correct.

You might also find if your successful in treating the rhinitis you will be able to use nasal or pillow style mask.

Best of luck and please follow up and let us know how things are progressing for you.
Resmed S9 Elite / Humidaire H5i Heated Humidifier
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Re: Suggestions/Advice on getting used to CPAP

Postby newpap » Wed Oct 24, 2012 7:18 pm

Oh, boy. I've been having the exact same problem. Last night was my second night. First night I took it off at 2:30 a.m. or I would have gotten NO sleep. Last night I know I slept for about 20 minutes or so, but my breathing became labored so I took the mask off at 4:30. I find it very hard to imagine a way this will ever get better.
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Re: Suggestions/Advice on getting used to CPAP

Postby Xney » Thu Oct 25, 2012 2:13 am

What is your machine & settings?
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