Taming the CPAP-Induced Insomnia Monster

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


Contents

  • Introduction
  • Signs That Your Problems With Getting to Sleep or Staying Asleep With the Mask on May Be Developing Into CPAP-Induced Insomnia
  • So What To Do About CPAP-Enhanced or CPAP-Induced Insomnia?
  • A Closer Look At Sleep Hygiene FOR CPAP-Induced Insomnia
  • Good Sleep Hygiene Part 1: The Bedroom and Sleeping Environment


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.

    46 comments:

    1. This was very helpful to me. I thought "CPAP insomnia" was a joke re: how tough it is to get used to the machine and mask and that you could become an insomniac trying to get the hang of it all. This article had good suggestions and advice. Thank you.

      ReplyDelete
    2. This wound up being really helpful to me personally. I thought "CPAP insomnia" was in fact a laugh re: how tough it will be get familiar aided by the machine and additionally masks and additionally to become some type of insomniac trying to get the hang of it all. This brief post got good pointers as well as also advice. Say thanks a ton.

      ReplyDelete
    3. Your words/advise greatly appreciated and comforting to someone who;s on their 3rd run at CPAP therapy since '04....never 'stuck with it' for numerous reasons.

      Do you have a sense for what percentage of CPAP users did not find benefit w/ using CPAP within the first month or two of usage? A point of frustration for me was having three very close people (father, mother in law, best friend) explain the very first night, they IMMEDIATELY felt better with CPAP therapy. It's encouraging to hear that CPAP therapy helps some very quickly/significantly, to the opposite it's extremely demotivating when I feel (felt) no benefit after a month +/- of usage. I consistently read "it takes some people longer to adjust to and feel better using CPAP therapy. I'm interested in learning:

      - what percentage of CPAP uses required over 30 or 60 days of consistant usage to feel benefit using CPAP therapy
      - what percentage of CPAP users, who have fully acclimated themselves to the product/therapy, feel little benefit (rested/awake/alert during the day)? I was told by a sleep specialist (Dr.) there is a potential (although somewhat unlikely) that even though a CPAP will most likely remedy my sleep Apena, I may not feel much benefit.

      I cringe at the idea that CPAP therapy will address/cure my sleep Apena (obstructive) and provide the physical benefit associated with it (make life easier on my body) but not remedy the fact I've been a zombie for 20+ yrs.

      Insight into the two questions above and words of support for someone making their 3rd run at CPAP therapy is greatly appreciated.

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    4. Excellent advice. Only my third night on cpap and I have averaged, in my estimation, only 4 hours sleep. I did keep the mask on all night on the 3rd night felt instinctively it was probably the right thing to do so I am encouraged by your comments that you shouldn't give in and try to get sleep without it.

      I shall probably just have to try and persevere. I will certainly follow your practical recommendations. You have made me feel much better after reading your blog. Thank you.

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    5. Thank you. This is a wonderful, info-filled post which helped me tremendously. I'm going to try again! (Probably with drugs.)

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    6. Very useful machine for casual breath during sleep. I guess we can get it online means cpap supplies every where across USA.

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    7. @Alisha Johnson: The place I would recommend as an on-line CPAP supply store is cpap.com.

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    8. @Anonymous: I am sorry that you have had such a rough time of trying to make CPAP work for you. If you are still trying to make it work, I would encourage you to join an on-line support community such as cpaptalk.com or apneasupport.org

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    9. I was just thinking that reading through a blooming cherry tree isn't that easy .

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    10. After almost 2 weeks of attempting to use the CPAP and coming to the realization that it has worstened my already severe insomnia I see your blog with information that confirms for me that CPAP can indeed cause more discomfort and insomnia and apparently only a small percentage of people actually feel any improvement in their sleep pattern.I do appreciate all of the suggestions for learning to live with this miserable technology..... Right before I began using the CPAP I rediscovered Melatonin and this had begun to help the insomnia.. That's why it was very obvious to me that I was now experiencing CPAP induced insomnia so I appreciate that you've named this syndrome. May I suggest that you might want to do a blog on CPAP induced clausterphobia also because sadly I believe that in addition tohaving the former syndrome I now also have the latter!!! With all of the amazing new discoveries in our Health care universe there just has to be a better device than a CPAP machine to treat this new money making diagnosis of sleap apnea. God Bless you for your attempts to help us<3

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      Replies
      1. Rosie,

        Most people who keep at CPAP for at least 1-3 months and who have significant daytime symptoms of OSA before they begin CPAPing do see real improvement in their sleep once they make it through the transition period.

        Unfortunately, most new PAPers are given little or no meaningful support once they start to hit entirely predictable (AND FIXABLE) snags in the transition period. Part of the problem is that most of the people treating us have never ever tried to sleep with this equipment. So they really have no comprehension of what they are asking us to do each night in our beds. Part of the problem is that CPAP has a very bad reputation and patients go into this crazy therapy expecting the worst, and things can become a self-fulfilling prophecy.

        It's a shame, really, that quality OSA education and patient support groups simply do not exist. It would really be nice if the model that is commonly used for newly diagnosed diabetics were to be adopted and appropriately modified for OSA patients: The typical newly diagnosed diabetic is given a lot of educational support in the form of classes focused on informing them of their dietary needs and the giving them the knowledge they need to properly monitor their blood sugar and adjust their daily medication accordingly. Patients typically also have the opportunity to participate in patient support groups where more experienced diabetics can provide real advice on how to make all the new "stuff" actually work in the context of ordinary life. And there's a real focus on teaching the new diabetic on learning how to feel like they can "control" the diabetes instead of feeling like the diabetes controls them.

        Contrast that with the typical OSA patient's experience: A brief meeting with a sleep doc where the patient is told "You stop breathing 30 times an hour when you are asleep. You need to use CPAP." and they're sent to a DME to get their equipment where someone shows them nothing but where the ON/OFF button is and warns them that "You have to use this every night and if you breath through your mouth you have to use a full face mask." And you're sent on your way to make this work entirely on your own with no sense of the patient being in control of anything: All too often, to the newbie, CPAP is something that is done TO you by OTHERS (the sleep doc, the DME, etc) instead of all those others teaching you how to use the CPAP to CONTROL the OSA so you can get on with living your life.

        Delete
      2. Tried APAP for ten weeks before giving up. I have never felt worse. Totally sleep deprived.

        I am sure the clinical trials that led to FDA approval were for less than 10 weeks and that most people who will see a benefit, do so in the first couple of weeks or less (for many, it is the first night or two). I think this idea that people need to stick with it for months or longer comes entirely from online forums and personal anecdotes, and not from any real medical studies, which in fact tend to show compliance continues dropping off over time for the majority of people.

        I know this blog is trying to be helpful but I have to question if there is any other medical therapy which is supposed to make you feel worse for many months before you feel better. I am not aware of any, not even surgeries or antidepressants, which are notorious for delayed benefits.

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    11. Great blog! I am glad to read your wonderful article. This would help those who have insomia. Great job RobySue!!!

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    12. I really like that last paragraph in your reply of 12/7/13 because that has been exactly my experience. I had insomnia at one time and I do all of the things one is supposed to to deal with it. Haven't had it in some time. Now I do again with the bi-pap machine. Refuse to give up though. Thanks for the blog. Wish it would continue an ongoing discussion of these issues.

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    13. Nice blog........Insomnia, or sleeplessness, is a sleep disorder in which there is an inability to fall asleep or to stay asleep as long as desired.

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    14. my cpap has now started making loud blowing noise

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    15. Hello,
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    16. @robysue: I am in my 7th year of C-Pap therapy, and I love my C-Pap. I will not sleep without it. In addition, I was on sleep meds for years due to chronic insomnia. I went off those meds in January of this year, and I was doing okay until recently, when I once again began waking up between 1:30 and 3 a.m. unable to go back to sleep. I have no idea whether a C-Pap issue is triggering the wakefulness, but I do not want to go back on sleep meds. Is it possible to develop C-Pap insomnia this far into therapy?

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      Replies
      1. Carol Ann & others, one thing to watch for when waking up in the middle of the night after falling asleep with CPAP is if you are waking and throwing your bed covers off because you are feeling somewhat overheated ... especially in a cool bedroom. This could be a warning that your CPAP settings need to be re-evaluated or re-adjusted. Why? Because it could be that you are having some type of air limiting event, a hypopnea, breath flow limitation, or an obstructive sleep apnea event. When one of these occur, your saturated blood oxygen level could drop and even though you're sleeping some internal system in our brains detects that happening and says "Damn, we need to move or something or we aint gettin' enough air to survive!". And you get an internal kick of adrenalin so that you roll over, move to some other position or just plane wake up.

        This has been happening to me recently around 1:30 am, and when it does I'm like wide awake for about an hour. Then about 10 minutes after throwing the covers off, I realize that the room is actually cold and I'm pulling them back on.

        I picked up a monitoring pulse oximeter and sure enough, my SpO2 (saturated blood oxygen) levels had been momentarily dropping down to 87% ... which is way too low.

        If this is happening to you, you need to contact your sleep peeps right away because it's serious stuff. And follow @robysue's suggestions too ... if your brain gave your body a shot of adrenalin, you're not going to be sleepy for a while. Time to get up out of bed, go somewhere else to read or something (but no bright lights especially from phone screens that don't have the blue light blocked) and don't go back to bed until you feel sleepy again.

        Bottom line is that if it's a CPAP machine that's not adjusted correctly for YOU that's waking you up ... and we do change over time, meaning even if it's an Auto adjusting CPAP, it may not be set properly now even though it once was ... the problem then is not CPAP Induced Insomnia as described here in @robysue's blog, it's a CPAP machine that needs to have it's pressure settings readjusted.

        To conclude, one huge clue that it's not insomnia that's waking you is when you awaken in the wee hours and realize that you feel hot even when the room is cool, and then you're awake and alert for a while. (... or it could be a "hot flash" doin' it ... but I wouldn't know about such things ;-) )

        Delete
    17. This comment has been removed by the author.

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    18. I have "persevered", "given it more time", "been patient with myself and the cpap", talked to the doctor four times, practice impeccable sleep hygeine, tried CBT, self-hypnosis, "toughed it out" with the mask on all night regardless of insomnia and inadequate REM for 14 consecutive days (at the end of which I was so sleep deprived I was hallucinating voices and was unfit to operate a car or cook on a gas stove), been through seven different masks, moved out of my spouse's bedroom, bought a white noise generator, chamomile tea, melatonin, yoga, warm baths, and relentless "one more tries" for ELEVEN MONTHS since my apnea diagnosis and still suffer from cpap induced insomnia/inadequate sleep. I have more arousals per hour with the mask on due not to apnea but simple re-awakening of my brain than I did with having untreated sleep apnea. I once forced myself to stay awake for 48 hours so that I would simply pass out with the cpap mask on and it did not work.

      The truth is, some people can't tolerate cpap and those who are suffering this way need to be understood and given helpful information, not just lovingly encouraged to try a bit harder. I have lived for nearly a year in the unrelenting hell of having even my poor quality apneic sleep being taken from me, then being brushed off by the medical community as someone who just needs to "keep trying". I am now looking into a dental device to see if it provides any relief from the apnea. I was never told this was even an option by anyone at the sleep specialist's or at the DME-everyone just seemed happy to take my money for mask after mask and follow up doctor visits where I was patted on the hand and told to stick with it, dismissed as whiny and biled a fortune for my trouble. Just because it works for many does not mean that the few for whom it doesn't work are doing anything wrong, and there should be more study done to find better solutions for people who can't sleep with a cpap on.

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    19. Crud. I'm sorry, for some reason my last paragraph got cut off and this post sounds rude without it. Here's the rest of what I meant to say.

      If you are like me, and suffer from intense cpap insomnia, DO try all the tips listed above. If they aren't working, as they have not worked for me, continue to advocate for yourself with your doctor--as many times as it takes to get yourself heard. I had to switch medical providers to even be told that there's a viable dental option I can try. Do not let them simply continue to brush you off with a cheery, "keep trying you'll get the hang of it!"

      I would even like to exhort those who have managed to jump through the hoops of misery and manage to get by with their cpap treatment to keep giving the necessary demanding feedback to spur manufacturers into coming up with better products. It shouldn't be so uncomfortable for anyone to get used to cpap, I really belive the medical community can do better by us. Sleep apnea kills, and the treatment ought not to be torture.

      There. I'm sorry that this bit didn't post at first. I'm not trying to criticize the tips here, they are actually the only things a person can do to mitigate the torment of cpap. I only wished to add that there are some of us for whom cpap just fails altogether, and that the industry benefits from the mistaken belief that everyone can accommodate cpap and if you can't it's your problem alone.

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      Replies
      1. Thank you for sharing your story. My experience has been almost exactly like yours and I agree with everything you've said. Did you get a dental device, and if so, did it help?

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      2. This is exactly how I feel. It is so hard. Knowing that I want to use it,need to use it, but can't use it is hard. I started with just OSA bit now have central sleep apnea as well

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      3. I hear you loud and clear, compadre. Insomnia was always an issue, plus I had MAJOR spinal surgery as a kid and can only sleep on my stomach and on one side (so face mask is unbearable). So I'm using the nasal prong kind, but I wake up after only a few hours and can NOT go back to sleep. Without CPAP, I wake up and can go back to sleep easily. 3 weeks in and I look tireder than I EVER have.

        Delete
    20. I have never been able to sleep more than 6 hours with CPAP therapy. It's been two months on the REsmed S10 APAP full mask. When I am really tired, it is easier to go to sleep with the mask on and my AHI readings daily are going well for the duration of each night's sleep. I frequently find myself taking the mask off around the 4-6 hour mark and sleeping an extra hour without it. . One of the symptoms I do feel is being "MORE AWAKE" more "MORE ALERT". It seems like I can go longer without sleep now. But the problem is getting to sleep on some days when I am not feeling too sleepy. One big issue for me is I used to enjoy sleeping on my side and having my face kind of buried into a small pillow at times giving me a very nice comforting feeling when i need it as I go to sleep. Now, I can't do that. So the times when I about to fall asleep, I don't have that reinforcement of that pillow pushed against part of my face comfort factor when I am moving around positions. So it kind of stalls my routine as I fall into sleep.

      So over the last week,I have been regressing and not even getting those 5-6 hours daily sleep with the CPAP. More like 4 hours one day and then no luck the next , so I end up sleeping on my couch for 3 hours unwittingly as I think I can't go back to sleep. I wish they could design a "CPAP Chamber" so I won't need a mask!!! Yeah, that would be more expensive too I guess and less portable.

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    21. Thanks for great information you write it very clean. I am very lucky to get this tips from you

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    22. This article was very informative and addressed many of the anxieties and issues I didn't even realize I had with the machine. I use the nose piece because the thought of the mask was just too much for me to handle. I remember in the beginning it was hard for me to even fathom using it and I had to have a long, extended ritual before bedtime that included several laps walking around the pool and the house until I realized that it was only working me up further. Also, I was paranoid about the machine stopping working and my going right back to gasping for breath or stopping breathing altogether (me suffocating in my sleep) to the point that I had to have someone watch me as I slept and check on me regularly throughout the night. I still need someone to check on me throughout the night and sometimes need the comfort of someone staying with me until I go to sleep to make sure the machine doesn't shut off.

      I've been regressing from the 7-9 hours I was getting at one point to now 4-6 hours per night.

      But this article has helped me understand that many of the issues, fears, and anxieties I've been experiencing are in fact normal for people adjusting to a CPAP and that I'm not alone in this. It has also helped me better understand the root causes behind these anxieties. As someone already diagnosed with generalized anxiety disorder, it is important that I understand that while my fears and concerns are valid, they have solutions.

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    23. Is there anything in particular about oral CPAP and insomnia? I love my nasal pillows and sleep very well with them. But they dry my eyes out terribly and have caused a kind of chronic conjunctivitis. My doctor switched me to oral CPAP to avoid the air getting to my eyes. I really like it, it is quieter and more comfortable. Just one problem, I can't sleep! Went to bed at 9:00 a.m. last night, exhausted because I only slept three hours the night before, and had to get up at 1:00 a.m. and switch back to the nasal pillows because I had not yet fallen asleep. This baffles me. I don't understand why I can sleep so well with one and not the other. Anybody have any ideas?

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    24. CPAP is a real salvation, but there are side effects.

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    25. You're talking about the full face mask causing insomnia? Yeah me too but I've had chronic insomnia most of the time for the past 3-1/2 yrs. I've been on a small dose of benzo (for 18 mos) to help me get some sleep which is also for restless legs and nocturnal myoclonus most likely caused by the undiagnosed sleep apnea. It took years of seeing doctors off and on before coming across an intelligent enough NP who decided to send me for a sleep study last January. Right now I have better luck getting some sleep with nasal pillow mask but still usually get about 5-5.5 hrs sleep with 0.25 to 0.5 mg of clonazepam. I don't get dry eyes. I take it you must have a leak and maybe you should try a size larger nasal pillow that will seal better. Or maybe you've resolved it by now. Chin strap works good for me along with the nasal pillow, I was trying to mouth breathe prior to using that.

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    26. Thank you Roby for such great advices about insomnia treatment. Insomnia is not a great condition of any person for his well being and normal life. I am also a chronic insomnia sufferer. Few weeks back I was suffering from severe insomnia. Then I tried some yoga like Kapalbhati. Although yoga can let me go to sleep, but I was not getting enough sleep and would often wake up early in the morning and would keep changing the sides. My memory power and natural IQ was also lost. Then one day I met a person called Sam Oakes who told me that if you want to get your earlier who told me that your mind needs a stage 4 NREM sleep for proper functioning of your mind and I know a plan called Outsmart Insomnia Protocol that can bring your mind to this stage during sleep. I didn’t waste time and bought that plan and guess what? I was cured within few days of following it. I thought why not share it with some people like me who are suffering from the dangerous effects of sleeping pills.

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      ReplyDelete
    27. Thank you Roby for all of the great advice provided on this website. I will link to it once we launch the blog on www.monstercpap.ca

      ReplyDelete
      Replies
      1. was supposed to be http://www.monstercpap.ca/
        Not sure why it didn't add the link?

        Delete
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    29. Thank you for the encouraging presentation. Much more thorough and empathetic than the admonitions to just stick with it. I have resorted to afternoon naps without the mask, but I may change my approach after reading this.

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    30. When my son was 23 years old, he developed chronic insomnia, having consistent sleeplessness. This had made him tremendously suffer from great tension and devastating health. He was suffering from a life resulting from a lot of bad choices he made as a messed up person. He was addicted pleasing others. I let the doctors put him on drugs. After going through a lot of drugs, this is what he ended up on daily for a few years: (enough to put down an elephant): 3 mg Ativan, 900 mg Seroquel, 300 mg Topamax, 3 mg Klonopin. I would follow anyone’s advices that came along my path. I had tried my very best and every method for him to be cured of insomnia, but unsuccessful. I therefore had stopped seeking any treatments for him to take any pills or medicine, and turned to live sarcastically ruined life instead. He ended up in a 4 day stay at a mental hospital because I was afraid he would kill himself. They also took him to receive treatments as far as china in the hope that his severe sleeplessness would be healed. However, his insomnia problems were still unsolved despite an enormous pile of pills plus Chinese herbal medicine he had taken. But everything started to get easier from the point we came across Vihaan Herbal Medicine. Luckily, everything seemed to be okay after he took an Herbal Medicine. I wish I could say that’s the end of it because he havn't had any symptoms since then.
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    34. have read what you have said now and find it helpful, but am still having trouble getting to sleep.

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    35. have seen many of my sleep problems addressed here, especially with the mask adjustment each night.

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    36. Its been some 3 months now since writing a few words, mainly because I had not much to say, going through some of the vast problems associated with sleep apnea has not been an easy journey.

      March 2017 was when I became aware of my apnea at the age of 60, by pure chance may I add, after seeing a specialist I was put on a CPAP machine without a sleep study being done, the data from the machine as far as I am concerned has bee miss-read by doctors, it worked out that I have had 18 months of hell trying to adjust to using the CPAP machine, and believe me I have tried every which way to cope with the incorrect pressure and mask problems, all may I add with no help from the doctors, as they could not be bothered to help, so since the 1st October 2018 at MY INSISTENCE I have gone from CPAP to APAP.

      This transition has been the best thing ever for me, and has encouraged me to write to everyone here on the site and urge them never to give in to the problems you have face or are about to face, take advice from what you read here, and talk to your specialist and get the help you need.

      Good luck with all you do.

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