3 1/2 Months In & Could Use Some Help

[Julie]

Oh leave him alone - sounds like he's got the food thing down.. just needs some help with the machine.

[ChicagoGranny]

just needs some help with the machine.

You don't have a clue.

You proved you are clueless when you saw results from three days of using straight CPAP and made this comment -

your results consistently show the pressure at or (wanting to go) beyond 11.

Sure, his results for those three days showed pressure "consistently at 11" - his machine was set to CPAP 11. lol

But, you would not understand that. And tell us how you knew "the pressure was wanting to go beyond 11"? lol

[KayakKid]

Julie & ChicagoGranny,

Thank you both for your help. Being a newbie I appreciate the advice. Without being very knowledgeable about all this I kind of thought that with the CPAP setting at a Max 11it would always show a consistent 11 once it came out of ramp.

I will give the new APAP settings a try for a couple nights and report back my progress.

Again, thank you BOTH for your input.

[palerider]

Hi - the green lines of pressure that move up to 11 and because they can't go higher on the graph, sit parallel to the top.

uh, that's because his pressure is set to a constant 11, in cpap mode.

[robysue]

KayakKid,

I bid you a sad welcome to the CPAP&Insomnia Club. May your membership in the club be short and may you soon be sleeping well with the machine.

There are a bunch of things that I want to say in response to what you've posted on this thread.

First an observation: Given your inconsistent usage patterns, I think you need to concentrate much more on working on getting the usage up to where it needs to be rather than how well the therapy numbers look on paper. Right now all tweaks to the CPAP machine settings need to be based solely on whether the new settings make it easier or harder for you to try to get to sleep with the machine. Until you are actually sleeping with the machine every night, there's no way that CPAP is going to "work" in the sense of making you feel any better in the daytime.

Next observation: You've had a lot of long term sleep problems that may go beyond the untreated OSA. In particular, you describe some sleep patterns that indicate a long standing problem with insomnia that continues now that you've been diagnosed with OSA and are trying to use the machine.

I have had trouble getting to sleep and staying asleep for the past 3 years. Originally thought it was due to a divorce I was going through but it didn’t correct itself after the divorce was over. I have been on and off Ambien (10mg) during that time and lately cannot get to sleep and stay asleep without it. I’ve tried Melatonin or taking nothing at all and end up staring at the ceiling til about 4AM when I finally pass out from exhaustion.

There's nothing inherently wrong with needing the Ambien to get to sleep as long as the Ambien works as desired. There is, however, something wrong with staring at the celing til about 4AM. What I mean by that is this: The more you lie in bed NOT sleeping for long periods of time, the harder it is to get and keep the insomnia under control.

Have you ever simply tried getting out of bed when you just can't get to sleep and you don't want (or can't) take an Ambien? One of the things I was taught when I was doing cognitive behavior therapy for insomnia (CBT-I) was to get out of bed if I was not asleep after 20 minutes of lying in bed. (And I was to "guess" what 20 minutes felt like rather than relying looking at the clock.) The idea is to teach your brain that being in bed means being asleep. If the brain won't let the body go to sleep, then you have to get up and go into another room. Sit quietly doing nothing (and do NOT look at a clock). Go back to bed when you start to feel sleepy.

Now I am at the point, for the past week or so, where I am wide awake at night and am completely exhausted in the morning, even after 8-9 hours of Ambien induced sleep.

I am now confused. If you are wide awake all night, then how are you getting 8-9 hours of Ambien induced sleep? Can you clarify what you mean here? Are you staying awake until 4AM and then taking the Ambien and sleeping til noon?

Also are you getting 8-9 hours of Ambien induced sleep without wearing the mask?

I’ve been on therapy since Jan 2016 and unfortunately have not woken up one morning yet feeling “refreshed” since I’ve been on the machine.

You also haven't actually gotten a full night's sleep with machine for the whole night. You won't wake up feeling refreshed as long as most of the sleep is without the CPAP.

I am currently averaging about 2 hours a night with the mask, which I know is not good. I either wake up during the night feeling upset/angry and take the mask off or I am subconsciously taking it off during the night. Sometimes when I do wakeup to go to the bathroom I don’t put it on again feeling that if I did I would not be able to fall back asleep. There have been nights where I have not used the machine at all (I know, not good) because I have needed to get somewhat of a good night’s sleep to be awake and alert for work the next day.

You are going to have to decide whether you are serious about making CPAP work or not. What you are doing right now is maximizing the chances of failure---as your behavior patterns are making it harder to get to where you can comfortably fall asleep with the mask on and sleep the whole night with the mask on.

I would suggest that you need to implement the following rules:

• If you wake up with the mask off, you put it back on before going back to sleep.
• If you need to get up in the middle of the night, don't go back to bed until you are willing to mask back up.
• If you wake up angry or upset, take the mask off and get out of bed and leave the bedroom. Settle yourself down in a different room. Do something to settle yourself down and go back to bed only when you are feeling sleepy enough to put the mask back on.
• If you been lying in bed for 20 minutes or so without getting sleepy, get out of bed and go into a different room and sit quietly until you start to feel sleepy.
• Get up at your normal bedtime even if you didn't get much sleep

The first couple of weeks that you use these rules will be tough. But you've got to get both your brain and your body to understand that if they want sleep, it's got to be with the mask. And if they want to be in bed, they've got to be willing to relax enough to fall asleep.

Unfortunately I experienced many of the same occurences with the smaller Mirage and switched out once again. I am now using the ResMed Airfit F10 (size large) This mask seems to be the best fit and most comfortable, but I still can’t get anywhere near 4 hours a night. I’ve only hit that mark a handful of times.

As long as you talk yourself into justifying taking the mask off or not putting it on in the first place, you're never going to get to where you are using the machine at least 4 hours a night, let alone all night long.

I am trying to be persistent and continue on, but nothing seems to be working.

Pardon my saying so, but I don't think you are really being persistent. I do think you are trying to be persistent. But "trying" and "being" are two different things. If you just cannot force yourself to put the mask on every night at the beginning of the night and back on after you get up to go to the bathroom, you may want to consider working with a CBT therapist to change your behavior towards the mask.

[KayakKid]

KayakKid,

I bid you a sad welcome to the CPAP&Insomnia Club. May your membership in the club be short and may you soon be sleeping well with the machine.

There are a bunch of things that I want to say in response to what you've posted on this thread.

First an observation: Given your inconsistent usage patterns, I think you need to concentrate much more on working on getting the usage up to where it needs to be rather than how well the therapy numbers look on paper. Right now all tweaks to the CPAP machine settings need to be based solely on whether the new settings make it easier or harder for you to try to get to sleep with the machine. Until you are actually sleeping with the machine every night, there's no way that CPAP is going to "work" in the sense of making you feel any better in the daytime.

Next observation: You've had a lot of long term sleep problems that may go beyond the untreated OSA. In particular, you describe some sleep patterns that indicate a long standing problem with insomnia that continues now that you've been diagnosed with OSA and are trying to use the machine.

I may have had OSA prior to the sleep study but chalked the symptoms up to the stress of my divorce. Prior to then I had ZERO problems falling asleep and staying asleep for 8 hours a night.

I have had trouble getting to sleep and staying asleep for the past 3 years. Originally thought it was due to a divorce I was going through but it didn’t correct itself after the divorce was over. I have been on and off Ambien (10mg) during that time and lately cannot get to sleep and stay asleep without it. I’ve tried Melatonin or taking nothing at all and end up staring at the ceiling til about 4AM when I finally pass out from exhaustion.

There's nothing inherently wrong with needing the Ambien to get to sleep as long as the Ambien works as desired. There is, however, something wrong with staring at the celing til about 4AM. What I mean by that is this: The more you lie in bed NOT sleeping for long periods of time, the harder it is to get and keep the insomnia under control.

Have you ever simply tried getting out of bed when you just can't get to sleep and you don't want (or can't) take an Ambien? One of the things I was taught when I was doing cognitive behavior therapy for insomnia (CBT-I) was to get out of bed if I was not asleep after 20 minutes of lying in bed. (And I was to "guess" what 20 minutes felt like rather than relying looking at the clock.) The idea is to teach your brain that being in bed means being asleep. If the brain won't let the body go to sleep, then you have to get up and go into another room. Sit quietly doing nothing (and do NOT look at a clock). Go back to bed when you start to feel sleepy.

I have gotten out of bed when I can not fall asleep and spent hours in a another room waiting to feel sleepy. Sometimes it does not happen until 3 or 4AM

Now I am at the point, for the past week or so, where I am wide awake at night and am completely exhausted in the morning, even after 8-9 hours of Ambien induced sleep.

I am now confused. If you are wide awake all night, then how are you getting 8-9 hours of Ambien induced sleep? Can you clarify what you mean here? Are you staying awake until 4AM and then taking the Ambien and sleeping til noon?

I am awake all night when I DO NOT take the Ambien. This happens whether I have the mask on or off. No difference. Because I am a single father with a business to run I can not afford to go for several nights without sleeping. For me, going for several nights without sleep means that my mind goes to places where I do not want to go. I feel as if I'm losing my mind. The condition I have been waking up in the past week feels as if I have an "Ambien Hangover" if there is such a thing.

Also are you getting 8-9 hours of Ambien induced sleep without wearing the mask?

I can get 8-9 hours of sleep on Ambien with or without the mask on. At this point, I am less concerned with the quantity of sleep than I am with the quality of sleep.

I’ve been on therapy since Jan 2016 and unfortunately have not woken up one morning yet feeling “refreshed” since I’ve been on the machine.

You also haven't actually gotten a full night's sleep with machine for the whole night. You won't wake up feeling refreshed as long as most of the sleep is without the CPAP.

I am currently averaging about 2 hours a night with the mask, which I know is not good. I either wake up during the night feeling upset/angry and take the mask off or I am subconsciously taking it off during the night. Sometimes when I do wakeup to go to the bathroom I don’t put it on again feeling that if I did I would not be able to fall back asleep. There have been nights where I have not used the machine at all (I know, not good) because I have needed to get somewhat of a good night’s sleep to be awake and alert for work the next day.

You are going to have to decide whether you are serious about making CPAP work or not. What you are doing right now is maximizing the chances of failure---as your behavior patterns are making it harder to get to where you can comfortably fall asleep with the mask on and sleep the whole night with the mask on.

Maybe you have some suggestions on how I can stay asleep for an entire night. I am limiting my liquid consumption with a 6PM cutoff to try to eliminate wakeups due to having to go to the bathroom.

I would suggest that you need to implement the following rules:

• If you wake up with the mask off, you put it back on before going back to sleep.
• If you need to get up in the middle of the night, don't go back to bed until you are willing to mask back up.
• If you wake up angry or upset, take the mask off and get out of bed and leave the bedroom. Settle yourself down in a different room. Do something to settle yourself down and go back to bed only when you are feeling sleepy enough to put the mask back on.
• If you been lying in bed for 20 minutes or so without getting sleepy, get out of bed and go into a different room and sit quietly until you start to feel sleepy.
• Get up at your normal bedtime even if you didn't get much sleep

The first couple of weeks that you use these rules will be tough. But you've got to get both your brain and your body to understand that if they want sleep, it's got to be with the mask. And if they want to be in bed, they've got to be willing to relax enough to fall asleep.

I don't know if you have ever taken Ambien yourself, but for me, it has some strange effects. One of them being subconscious night eating, which thankfully has been minimal as of late. Another is that I really do not know what I am doing at night when I wake up. I may go to the bathroom and come back to bed and just not put the mask back on. It's as if I'm really not cognizant of what I'm doing.

Unfortunately I experienced many of the same occurences with the smaller Mirage and switched out once again. I am now using the ResMed Airfit F10 (size large) This mask seems to be the best fit and most comfortable, but I still can’t get anywhere near 4 hours a night. I’ve only hit that mark a handful of times.

As long as you talk yourself into justifying taking the mask off or not putting it on in the first place, you're never going to get to where you are using the machine at least 4 hours a night, let alone all night long.

I am trying to be persistent and continue on, but nothing seems to be working.

Pardon my saying so, but I don't think you are really being persistent. I do think you are trying to be persistent. But "trying" and "being" are two different things. If you just cannot force yourself to put the mask on every night at the beginning of the night and back on after you get up to go to the bathroom, you may want to consider working with a CBT therapist to change your behavior towards the mask.

[Jane Jetson]

ChicagoGranny's list is terrific.

I would add make sure the room is dark. Heavy curtains help. It can also be beneficial to remove your phone/laptop/computer from the room. I removed my computer because the little green light that pulsed annoyed me. It was tiny but a nuisance. I have a friend who puts a towel under the door so no light can enter. If you use your phone as an alarm or must be available for work, place a wash-cloth over it. You will still here the alarm but not be bothered by it.

[KayakKid]

ChicagoGranny's list is terrific.

I would add make sure the room is dark. Heavy curtains help. It can also be beneficial to remove your phone/laptop/computer from the room. I removed my computer because the little green light that pulsed annoyed me. It was tiny but a nuisance. I have a friend who puts a towel under the door so no light can enter. If you use your phone as an alarm or must be available for work, place a wash-cloth over it. You will still here the alarm but not be bothered by it.

Thanks Jane. ChicagoGranny's list was very comprehensive. My room is definitely dark enough. I've been told that I live in a cave. I always shut my phone off at night. No blinking lights.

[palerider]

I removed my computer because the little green light that pulsed annoyed me.

http://www.lightdims.com/

[Midnight Strangler]

Kayak, The majority voice is right - you need to figure out why you can't sleep more before you worry too much about the machine settings. After you are sleeping more hours, it will become more apparent whether the machine settings need to be changed.

Good luck.

[PEF]

I have long bouts of extremely bad insomnia also. I know what you mean by trying hard (maybe too hard) to get to sleep, feeling jumpy like just not tired (although feeling tired enough when you went to bed), getting out of bed and sitting quietly (I live right on the ocean and just relax listening to the waves and wind), going back to bed, still can't fall asleep. You end up in sort of a zombie state where you are very relaxed, tired while you are up, but not tired enough to fall asleep once you go back to bed. It is like your mind is playing tricks on you.

I take Ambien also, but I don't think it really helps. I take a very small dose because a larger does does not help anymore than a smaller dose. My pills are 7.5 and I can take a quarter of a pill and get to sleep and take a whole pill and not get to sleep. I don't know if it is the Ambien or not, but in the past I would never think of eating when I got up at night and I could not anyway because, before using APAP, I would sometimes get acid reflex. Then, about a year ago, I started eating after getting out of bed due to sleeplessness, but only certain things like brownies or cookies. I discovered that, if I ate, I would fall asleep almost immediately after I went back to bed. It worked better than any medication I have ever taken for sleep. Mainly, I don't like to do this because it is not good for my teeth (I usually brush before going back to bed) and I think it causes some minor nasal congestion in the morning. But I do this when I need to which is once or twice per week. In fact this habit is helping me sleep better generally. Both my husband and doctor encourage me to do it.

I also took an on-line course in something called "Somatic Experiencing". This is taught by Psychologists to try to get information about subconscious feelings. This is very complicated to explain, but it has helped a lot with my sleep problems and the food issue ties into it.

Another ting that works well for people who cannot sleep is to get up and WRITE down everything that comes into your mind. Keep it up until you are very tired. Then say to your mind "Thanks for telling me that and now I am going to go to sleep". You would be surprised how much this works!

Anyway, I absolutely agree that, you must only go to bed with your mask on. If you don't do this, your mind will just keep you awake or wake you up to take it off, IF it knows that you will take it off. Sleeping without the mask cannot be an option.

[Mudrock63]

You were diagnosed with an AHI of 81 and are only getting sporadic therapy. No wonder you don't feel any better. Most masks allow you to just unclip the hose. So you can go to the bathroom without totally removing the gear. Then clip the hose back in when you get back to bed. If Ambien is what it takes to get you through the night with the mask on, so be it. I would at least use it until I am totally used to sleeping and staying asleep with the mask. I don't believe it is supposed to be physically addictive. An AHI of 81 is pretty damn high, so you need to prioritize training yourself to be comfortable sleeping with the gear so you can get consistent therapy. That is the key to feeling better. From the shots you posted, it looks like you are getting pretty decent therapy, when you are getting it. But if you get two hours of good therapy, followed by six hours of sleeping with that AHI, you are going nowhere. I use my machine even when I am just lying down to "close my eyes" for 10 minutes.

Divorces, raising kids, working.....sounds like you might have a lot of stress and worries weighing you down. You have to find a healthy way to deal with the stresses in life. I walk almost every day anywhere between 3 and 5 miles. That is my me time and when I work out the things in my head. Exercise also helps me sleep and I have a consistently lower AHI when I do exercise. If you can't leave the house to do it, get a used treadmill or stationary bike and MAKE yourself do it at least 30 minutes a day. Then maybe you will be tired enough to sleep more and worry less when you are trying to sleep.

You have plenty of time to maximize your therapy. But I agree with the others that you need to work on using it consistently first.

[KayakKid]

Midnight Strangler, PEF & Mudrock63,

Thank you you all for your input. I know I have many issues to work out, other than just the machine settings, and that is why I joined this forum. I know that it is a process, and depending upon circumstances, could be a long one. That is another reason why I am going to be seeing a pulmonologist/sleep medicine doctor next week. To hopefully give me some guidance. I am starting to think that maybe one or both of the blood pressure medications I am taking could be having an effect as well. When you go all your life "sleeping like the dead" and then all of a sudden you can't sleep at all and you're constantly fatigued it is a huge adjustment. Not that I need to tell any of you that. Thank you for all your words of wisdom and I look forward to being a productive member of this CPAP society.

KayakKid

[robysue]

Have you ever simply tried getting out of bed when you just can't get to sleep and you don't want (or can't) take an Ambien? One of the things I was taught when I was doing cognitive behavior therapy for insomnia (CBT-I) was to get out of bed if I was not asleep after 20 minutes of lying in bed. (And I was to "guess" what 20 minutes felt like rather than relying looking at the clock.) The idea is to teach your brain that being in bed means being asleep. If the brain won't let the body go to sleep, then you have to get up and go into another room. Sit quietly doing nothing (and do NOT look at a clock). Go back to bed when you start to feel sleepy.

I have gotten out of bed when I can not fall asleep and spent hours in a another room waiting to feel sleepy. Sometimes it does not happen until 3 or 4AM

and

Now I am at the point, for the past week or so, where I am wide awake at night and am completely exhausted in the morning, even after 8-9 hours of Ambien induced sleep.

I am now confused. If you are wide awake all night, then how are you getting 8-9 hours of Ambien induced sleep? Can you clarify what you mean here? Are you staying awake until 4AM and then taking the Ambien and sleeping til noon?

I am awake all night when I DO NOT take the Ambien. This happens whether I have the mask on or off. No difference. Because I am a single father with a business to run I can not afford to go for several nights without sleeping. For me, going for several nights without sleep means that my mind goes to places where I do not want to go. I feel as if I'm losing my mind. The condition I have been waking up in the past week feels as if I have an "Ambien Hangover" if there is such a thing.

Sounds to me like you need to talk to the sleep doc (or whoever prescribed the Ambien). You may have a delayed sleep phase problem instead of or in addition to insomnia. Delayed sleep phase is when your circadian rhythm is far enough off to cause problems with your life. It can be handled with cognitive behavior techniques as well as the use of sleeping medication.

Also if you can't get to sleep at all without the Ambien, you might as well take it every night. Some sleep beats no sleep. And yes there is such a thing as Ambien hangover. That's part of why my sleep doc switched me from Ambien to Belsomra. My sleep doc has also helped me to understand that since I really have a very tough time getting sleepy early enough to maintain my desired sleep schedule that it is ok to take the Belsomra (and the Ambien before that) on more days than not. It took me a very long time to accept that I'm better off taking the sleeping pill almost every night.

As for dealing with the Ambien hangover: Cutting the dose may help. Or asking the doc to switch you to a different sleeping pill may help.

Maybe you have some suggestions on how I can stay asleep for an entire night. I am limiting my liquid consumption with a 6PM cutoff to try to eliminate wakeups due to having to go to the bathroom.

Sometimes the best thing to do about middle of the night wakes is to accept them as not being pathological. What I mean by that is that people with normal sleep patterns do wake up at night. Sometimes they even wake up and then decide to go to the bathroom. But they don't start fixating on the fact that they're awake. Rather, once they take care of their business, they quickly go back to sleep. And if the total wake lasted less than 5 minutes or so, they don't even remember the wake in the morning.

So if you can get back to sleep in a reasonable fashion, the wakes can be ignored. If you can't get back to sleep, particularly even on the nights where you take Ambien, then you need to do something about them. CBT-I can help. But a huge part of CBT-I requires working on teaching your body/brain that if they won't go back to sleep quickly, they're not going to be allowed to lie in bed. Which is hard.

If getting to sleep without a sleeping pill were not the problem, there are some shorter acting prescription sleep medications that can be taken even if there's only 4 hours left in the time in bed window. But you can't take them and take something at the beginning of the night. Switching to a controlled release version of Ambien might also help.

I don't know if you have ever taken Ambien yourself, but for me, it has some strange effects. One of them being subconscious night eating, which thankfully has been minimal as of late. Another is that I really do not know what I am doing at night when I wake up. I may go to the bathroom and come back to bed and just not put the mask back on. It's as if I'm really not cognizant of what I'm doing.

I was on Ambien for over a year before my sleep doc was able to switch me to Belsomra. Yes, I know about some of the weirdities that Ambien can cause. And yes, there was a night where I not only took my mask off in an Ambien-haze, I apparently put it back on very badly in the same Ambien haze. And woke up about 20 minutes later to a very large leak. So I adjusted the mask and went back to sleep.

Here's the thing: If you really aren't cognizant of what you're doing in the middle of the night, that's one thing: You can't control what you don't know you are doing. But if/when you wind up waking up later without the mask on, you've got to force your self to put it back on.

Essentially your brain has not yet fully accepted the mask. It's still learning that sleeping with the mask is a good thing, and not a bad thing. Until it accepts that, you are likely to continue pulling the mask off at times. But until you always put the mask on when you ARE aware that you're ready to sleep, your brain won't be able to learn the lessons that it needs to learn.

[Mudrock63]

Midnight Strangler, PEF & Mudrock63,

Thank you you all for your input. I know I have many issues to work out, other than just the machine settings, and that is why I joined this forum. I know that it is a process, and depending upon circumstances, could be a long one. That is another reason why I am going to be seeing a pulmonologist/sleep medicine doctor next week. To hopefully give me some guidance. I am starting to think that maybe one or both of the blood pressure medications I am taking could be having an effect as well. When you go all your life "sleeping like the dead" and then all of a sudden you can't sleep at all and you're constantly fatigued it is a huge adjustment. Not that I need to tell any of you that. Thank you for all your words of wisdom and I look forward to being a productive member of this CPAP society.

KayakKid

Sounds like you may be on the right track. Let us know what the doctors say.