Crisis

[bpayh]

Hello everyone,

I'm newly diagnosed with obstructive sleep apnea. A little about myself and my story: I'm a physician and I diagnosed myself. I've probably had this problem for years but my daytime sleepiness has been getting pretty bad lately. I set up the sleep study with a pulmonologist who is a friend / colleague. On my first night I had about 240 events in 6.8 hours of sleep. On the second night, the CPAP titration, I had 1 event in 7 hours of sleep.

I got my machine 13 days ago and had high hopes in being able to acclimate to it and receiving some benefit. Unfortunately, it seems as though just the opposite has occured. The first couple of nights were okay, I was able to sleep, albeit very lightly, because I assume I was still adjusting to the CPAP. Then I got an upper respiratory infection with nasal congestion bad enough that I couldn't breathe through my nose. (Yes it was a virus, not just sinuses opening up from positive pressure, because I also had a cough and scratchy throat and my kids got it too). But now that's been cleared up for several days and I'm still having problems.

I'm lying in bed with my CPAP on and I simply can't fall asleep. It doesn't matter how tired I am, I just won't fall asleep. I've been getting even worse sleep than normal these last few days. I'm typing this out before I leave for church, but I'm dreading going because I'll probably be doing the embarrassing "head bob" thing. Last night I wore the mask for 90 minutes without falling asleep, took it off and fell asleep quite quickly. I woke up about 3 am feeling very tired, put the mask back on, wore it for about 60 minutes, then took it off and fell back asleep. The last two nights I wore it for 2 hours each night before giving up on it.

My machine is brand new, I'll look up the specs for you later today. I'm caring for it as instructed. I changed out the filters, I keep it clean, all that stuff. My pressure setting is 6 cm. I've experimented with all the humidity settings. My mask is some kind of gel fit that, I was told, molds to my face. It seems reasonably comfortable to me. I take no medications and have no health problems. I practice good sleep hygiene.

I'm really discouraged right now. I was hoping to be able to finally get "real" sleep and feel like a new man. Instead I'm faced with the situation that to get any sleep at all I must do it without the CPAP and subject my body to the stress of apneic / hypopneic episodes. What can I do? Is anyone else familiar with these insomnia-like episodes?

[Pugsy]

Is anyone else familiar with these insomnia-like episodes?

Yes. Lots of people here have experienced same. One member especially and I am sure Robysue will stop by and offer some very detailed ideas that she has had to do to tr to sort through this very same problem. In the meantime I will try to find her insomnia post.

I just wanted to welcome you to the forum. Depending on your machine brand I can offer software aid. One handed typing right now with unreduced Colles wrist fracture so you are lucky and don't have to read one of my long winded novels.
And yes, one can mask up with one hand.

Edit to add this
OK here you go. Read Robsue's response here. She has been through a lot and as much more insight into insomnia than I can offer.
viewtopic.php?f=1&t=63967&p=596777&hili ... ub#p596777

[Slinky]

Welcome to the forum, bpayh.

I HAVE to ask, specifically BECAUSE you are a physician, just exactly what brand and model PAP device you have? I can't help it, I'm curious if the local DME provider opted to pawn off an entry level, compliance data only CPAP on a physician - or it they opted to provide a fully data capable CPAP, maybe even APAP, w/o your asking. I am assuming they know you are a physician.

All of which has nothing to do w/your current situation and problems. Just curiosity on my part.

You are SURE that your nasal congestion and upper respiratory infection are totally cleared up now? You've sat down, put your mask on, turned your PAP on and just breathed w/it w/no apparent problems? Some times when we lay on our back the sinuses start to "fill up" on us. You might consider some Ayr Saline Nasal Spray just before donning your mask for the night.

While severity of symptoms has no bearing on pressure need I do wonder about a pressure setting of 6 cms. That is pretty low for most people other than a starting pressure to get acclimated and I wonder if it is enough pressure. 8-10 cms seems to be the most common pressure need. But we are all different as you well know.

I would imagine you would have one devil of a time finding the time to do one thing that can be the most helpful in getting comfortable w/that mask on your face and pressure blowing but I'll suggest it for you to try as you see fit. Weekends, early evenings, late afternoons, whenever you have some "free" time: remove the tank from your PAP so there's no spill and take your PAP and mask in to the living room, family room, den, wherever; don your mask, turn your PAP on and read a book, magazine, newspaper; work a crossword or jigsaw puzzle, watch TV, anything that occupies your mind in place of "I've got to get to sleep"!!!

If you were a non-physician I would suggest that you talk to your family doctor about a very low dose of an anti-anxiotic such as Xanax 0.125 mg (half a 0.25 mg tablet), just enough to relax you and relieve any "stress" you may be experiencing w/donning that mask and turning the PAP on and trying to sleep.

Is your mask the same mask and same size as the one you used during your titration study? You say it is comfortable other than you can't seem to relax and get to sleep w/it on so at this point I don't know that it is even worth considering trying another mask.

I'm fresh outta ideas for the time being. But we have more experienced PAPpers who will jump in shortly and offer some suggestions. RestedGal is one savvy member who may have some excellent suggestions for you. Hang w/us, we'll help you "over the hump".

[GumbyCT]

I also wonder about the 6cm - was that the outcome of the titration? It does seem low and could be the cause of your anxiety.

Do tell us what make/model of your machine and mask.

And welcome to THE Best forum on the internet.

[AndyCelt]

I too am new and having trouble getting to sleep with me nasal pillows. I have been taking benadryl (which is not uncommon for me anyway as it is allergy season in Texas) partly to help make me tired so I can ease into sleep.

On my machine I can ramp up the pressure over time and it starts at a pressure of 4cm. I can barely feel the pressure at 4 cm and feel almost short of breath at that pressure - which wakes me up because of anxiety. Maybe the low pressure is making you feel shortness of breath making it hard to sleep?

[robysue]

I'm lying in bed with my CPAP on and I simply can't fall asleep. It doesn't matter how tired I am, I just won't fall asleep. I've been getting even worse sleep than normal these last few days. I'm typing this out before I leave for church, but I'm dreading going because I'll probably be doing the embarrassing "head bob" thing. Last night I wore the mask for 90 minutes without falling asleep, took it off and fell asleep quite quickly. I woke up about 3 am feeling very tired, put the mask back on, wore it for about 60 minutes, then took it off and fell back asleep. The last two nights I wore it for 2 hours each night before giving up on it.

... It seems reasonably comfortable to me. I take no medications and have no health problems. I practice good sleep hygiene.

I'm really discouraged right now. I was hoping to be able to finally get "real" sleep and feel like a new man. Instead I'm faced with the situation that to get any sleep at all I must do it without the CPAP and subject my body to the stress of apneic / hypopneic episodes. What can I do? Is anyone else familiar with these insomnia-like episodes?

I bid you a sad welcome to my world of CPAP & Insomnia. I hope your stay is much shorter than mine has been since I still feel in purgatory on many days.

The "short" version of my own story is that my insomnia exploded on Night 3 of using CPAP. And I've been fighting it ever since---for 8 1/2 long months now. Sometimes more successfully and sometimes less.

I've refused to take Ambien or Sonata on a nightly basis, although the PA who has been put in charge of my care by the sleep doctor's office pushed for that early on. I have my personal reasons for not wanting to take sleeping pills on a nightly basis and I explained them to her. Since New Year's I've been doing serious CBT to improve my already good sleep hygiene and have been on a sleep restricted schedule to consolidate my sleep cycles. I made real progress from Jan. 1 through about the middle of March, when the trees started to pollenate and my seasnonal allergies kicked in. And in April the side effects of the depakote that I'd been put on for chronic migraines started to become significant and among them was additional problems with bedtime insomnia. The neurologist took me off the depakote in early May and ordered a genetic test for MTHRF and the migraines returned while I was waiting for the results, which in turn continued to feed the insomnia. I'm now on a prescription vitamin supplement called deplin because of the result of the genetic test; the neurologist hopes the deplin will bring the migraines under control, but it's way to early to tell yet since I've been taking the deplin for less than a week. Bedtime insomnia continues to be a problem.

I've been writing here about my experiences ever since I started CPAP, including many, many posts about my insomnia and what I've learned about keeping it marginally under control---which is how I'd describe the situation right now: In my sleep restricted six-hour time in bed period, I do manage to get to sleep within 5--10 minutes most nights. I now typically wake up no more than 3 times and long wakeful periods during the night occur on less than half the nights. But getting to bed "on-time" remains a problem since I am frequently not yet sleepy enough to go to bed at 1:30AM in spite of pretty consistently getting out of bed by my regular wake up time of 7:30AM and doing my absolute best to not take naps during the day.

As to what to do about the CPAP-insomnia? As someone who has been in the trenches fighting this war, I've written a lot of posts to others asking that question. Eventually a poster named JanKnitz asked me to put together patient-written guide to what to try to do when faced with CPAP&Insomnia for her blog. I've included that piece at the end of this message. Some of it may not be relevant to you, but some of it may give you ideas on what to try to get ahead of your insomnia.

Since you are a doc, I'm sure you already know all about insomnia and the need for good sleep hygiene for trying to get and keep ahead of insomnia. And while taking the mask off allowed you to get to sleep, it also makes it take that much longer to genuinely and fully adjust to it.
As you say, you already practice good sleep hygiene---although I will point out that lying in bed for 90 minutes fighting for sleep goes against the common suggestion of getting out of bed if you're still awake at the end of 30 minutes and still making no progress towards falling asleep.

So take the time to read what I've posted below. While some of it may not directly apply to your particular circumstances, some of it will likely strike a chord in you and it may provide you with ideas on how to get through your adjustment period.

robysue, the unofficial, but honorary reluctant president of the CPAP&Insomnia club

**********
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

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.

[KimberlyM]

Welcome to the forum! Unfortunately, most of us can relate to how you feel right now. I am now sitting at 6 months of CPAP use and can honestly say it took me 4 of those months to adjust to treatment. Now I look forward to sleeping with my CPAP because the sleep is so restorative. I am hopeful you will feel the same in just a few months.

Do you feel like you are getting sufficient air through your mask? As others have stated, 6 cm is a low pressure. Since the titration study is for a short duration, it is sometimes inaccurate. If your machine has autoset capabilities, it may be worthwhile to put it on auto and see what the 95 percentile pressure is. That is what my sleep doctor had me do after he suspected my lab titration was incorrect.

The other issue I would address is the mask. Is it a full-face mask or a nasal mask? Mask comfort is a huge issue. You may benefit from contacting your DME and trying a few different masks. I suffer from migraines and couldn't stand the pressure on my face. I am now quite comfortable with nasal pillows. My first was the Swift LT and my current is the Swift FX. They fit lightly on your face. Once the pillows are in place, you don't feel the air blowing, just the slight pressure from where the pillows are sealed. I can toss and turn with no problems and sleep on my side comfortably now. Take the time to experiment with different masks, you will be surprised at how differently they all fit and what your comfort level is.

Lastly, it does take time getting used to. I take Singulair for allergies before bedtime and it has a sedating component. Someone else here mentioned Benadryl. It may be worthwhile taking something just for a short term.

[quietmorning]

I haven't read all the replies, yet - running short on time, I'll try to do so later - please forgive if I duplicate anything.

I'm also at a pressure 6 and found that at first the change upset my sense of falling asleep. I was used to falling asleep the minute I hit the pillow from being so sleep deprived - when I first got the machine, it was an hour or more. Then when I fell asleep, I'd wake up later in the night with another hour to get back to sleep.

I don't change anything when I wake up, or when I can't fall asleep. I stay right were I am and simply put my mind on something other than what actually woke me up, for me, it's prayer. I've done this for decades as I can be quite the insomniac, and I've learned if I change ANYTHING, I'll NEVER go back to sleep and my brain will reinforce that there IS (when there actually isn't) an issue . . . setting me up for a vicious cycle of insomnia.

So the first night, I kept the mask on, despite my brain insisting that something was 'different' and I better 'wake up and pay attention'. After a aprox 10 days my brain got bored with the request and is now ignoring it.

I have also found that the ramp (reduced force during beginning sleep) is actually less helpful for me than the regular pressure since I'm at a low pressure any way. The ramp starts out at a pressure of four and I feel like I'm suffocating with it. I end up gasping for air within the first 15 minutes. Sometimes this bothers me, sometimes it doesn't. It really depends on how awake I am when I get into bed. It seems that the more awake I am, the less comfortable I am with this feature.

I'm on C-Flex. The inhale is at 6 and exhale is set at 3 - this is so comfortable for me. After the initial adjustment period, I had to check to see if the machine was on and working because I couldn't tell that air was entering into my air passages.

Hope you can find something in my experience to help you.

[M.D.Hosehead]

RobySue is a wonderful asset to this board. Bear in mind she has had a more difficult time with xpap+insomnia than average.

It was couple of months before I could sleep through the night with xpap and no meds. It took several months to find a mask that worked for me. Even after a year, discomfort or leaks sometimes wake me up. I still use trazadone 25 mg on the night after a particularly bad night, to function better the next day.

Literally millions of people have had trouble sleeping when starting xpap, and then adapted to wearing the apparatus.

I'm a physician, and, like you, I knew I had SA, but put off starting xpap because I knew it wouldn't be pleasant. I developed GERD, atrial fibrillation and R atrial enlargement. I should have started xpap much earlier.

I don't think I'd have been successful without the knowledge and help I got on this forum. Join up, list your equipment, ask questions.

[archangle]

What do you think the problem is that's keeping you from sleeping? What feels wrong? Too much pressure? Difficulty breathing? Can't sleep in your normal position? Strange thing strapped to your face? Suffocating feeling? Air leaks?

You might try wearing just the mask (no hose) around the house while not sleeping. Or hook up and do CPAP while reading, watching TV, etc. to get yourself used to it. Always take the water tank out before moving the machine.

[bpayh]

Whew,

I'm pretty shocked with all the amazing replies and support you all have to offer. I haven't even had time to read through it all yet!

My machine is a REMstar pro. The mask is a comfortgel blue nasal mask. I think I'm unable to fiddle with the pressure settings, it's set by prescription via a memory card.

As to what I think the problem may be, it's hard to say. One particularly bad night I did feel like I was gasping for air, and I had a sensation of air hunger in my chest, and a mounting urge to rip the mask off of my face. I'm almost embarrassed to admit it, but I think there was an anxiety component. It's hard to be sure because it's thankfully quite a foreign sensation, but on the other hand, as one who interacts with patients every day, I can recognize the symptoms and put two and two together. I just always assumed that I wasn't "the type" to get a feeling of anxiety.

Thankfully that was just one night. The other recent nights, I can't really pinpoint what the cause may be. I do recognize that lying in bed for 90 minutes is not proper sleep hygiene, it was just new territory for me and I wasn't sure what to do. I kept thinking, "Relax, think of something else, let your mind wander, you'll doze off."

Can't sleep in my normal position might be playing a factor. I haven't been able to sleep on my back for a long time now. Over the years I've rotated over to my right side, and from there I've rotated further so that I sleep on my stomach with my head turned. It's hard to adopt this position with the mask and keep a good seal, although it can be done if I get my face hanging off the edge of the pillow just right... Yeah it doesn't really work out well.

[GumbyCT]

There are several Remstar Pro models. Write down exactly what is written on top of your machine. All of the words.

[Janknitz]

The photo icon you've posted shows an older model Remstar now discontinued (still available but no longer current). Did your DME dump that on you?

You may very well be experiencing the air hunger you describe if the ramp feature is set on your machine to start you at a low pressure and slowly increase it. That's supposed to be a comfort feature for newbies, but it quickly becomes a discomfort feature.

You may be locked out of the clinician's menu to change settings but we have our ways . . .

[Slinky]

I suspect more and more that that 6 cms of pressure is not enough pressure for you and that DOES cause a little bit of anxiety (which would be only natural if you feel like you aren't getting enough air to breathe!). Or it may be that the Ramp feature is turned on and if Ramp is set to start at 4 cms ..... you're just not getting enough air when starting out.

Well, your DME didn't exactly bend over backwards to give you the best CPAP, but, at least they did provide a fully data capable CPAP, assuming that what you have is the PR SystemOne Pro w/C-Flex. It would have been nice if they had provided you w/the PR SystemOne Auto w/A-Flex. But .... hey, fully data capable is fully data capable. You're ahead of the game, you didn't have to fight to get full data capability! I can't imagine a local DME provider would be stupid and ignorant enough to try to pawn off an outdated CPAP on a local physician!!!

Personally, and I'm not a physician, just an average every day plain Jane American patient, I'd take that Pro back and tactfully INSIST on an Auto w/A-Flex. And I would ask that your script be changed to a starting pressure of 5 and a top pressure of 10. Let the auto PAP auto titrate your pressure need at home in your own bed and familiar surroundings. Keep in mind this is YOUR health, YOUR sleep, YOUR therapy, YOU are paying for it, whether thru insurance or out of pocket is immaterial. YOU are paying for it.

Insurances pay by HCPCS (insurance) code, NOT by brand and model. An entry level compliance data only CPAP, a fully data capable CPAP and a fully data capable APAP are all CPAPs: HCPCS code e0601. The DME provider gets paid one set fee for that code, regardless which brand and model CPAP provided (bi-levels, etc. are a different HCPCS code). Of course, the entry level compliance data CPAP costs the DME provider less than the fully data capable CPAP or APAP costs them but the difference in cost is not all that much and they are aware that some of the PAPs they provide are going to have to be fully data capable or APAPs when they negotiate and/or accept the insurance contract rate.

I suppose, as a physician, you will have to buy the EncoreViewer 2 or EncorePro 2 software. At least as a physician you can write your own script for either one. EncoreViewer runs about $99 online. You will need that software to take full advantage of the data your Pro (or, hopefully, Auto) can provide.

[PST]

As to what I think the problem may be, it's hard to say. One particularly bad night I did feel like I was gasping for air, and I had a sensation of air hunger in my chest, and a mounting urge to rip the mask off of my face. I'm almost embarrassed to admit it, but I think there was an anxiety component. It's hard to be sure because it's thankfully quite a foreign sensation, but on the other hand, as one who interacts with patients every day, I can recognize the symptoms and put two and two together. I just always assumed that I wasn't "the type" to get a feeling of anxiety.

***
Can't sleep in my normal position might be playing a factor. I haven't been able to sleep on my back for a long time now. Over the years I've rotated over to my right side, and from there I've rotated further so that I sleep on my stomach with my head turned. It's hard to adopt this position with the mask and keep a good seal, although it can be done if I get my face hanging off the edge of the pillow just right... Yeah it doesn't really work out well.

There are few feelings as bad as air hunger, and nothing more likely to stimulate anxiety. A full face mask might help. I recall during my titration feeling so much anxiety with a nasal mask that I had to ask for help and make a change. I just didn't feel like I could always suck enough air through my nose not to suffocate. This is despite the fact that if I wake at night, my mouth is always closed and I'm breathing through my nose, but when first getting into bed, after tossing a bit and getting myself settled, not being able to pull some extra air through my mouth was disturbing. I also agree with those who have noted what a low pressure 6 cm is. That would also leave me feeling like I couldn't get enough air. I don't even like starting to ramp up at 6.

There are many threads here on sleep position and pillows. In many ways side sleep is ideal. Some people use pillows designed for CPAP that have a fairly firm, abrupt edge that is easy to hang a mask off of. Others (including me) like a thick, fluffy "side sleep" pillow, and find we can nuzzle the mask in without blocking a vent or causing discomfort. Still others succeed in sleeping on their bellies. Check the wiki for the falcon position.

There is a frustrating period of adjustment for almost everyone, but members of the forum really are happy to help, as you have seen. It isn't often we get to turn the tables and offer advice to a doctor. We're going to love this.