struggling to find the answer...

[Pugsy]

They have my EPR set at EPR1

Okay. Minor pressure change and unlikely that is much of a factor if pressure changes are disruptive but you know what you can do? You might try higher EPR on the off chance that the easier breathing rhythm might be something your body likes.

It's obviously difficult to isolate the problem. Might try straight cpap...with and without EPR..might try APAP with EPR higher and a little higher minimum closer to the 95 % pressure.

And it may not be related to anything with cpap but it doesn't hurt to try to troubleshoot things in the hopes to find something that might help. There are several ways to get a nice low AHI but unfortunately a nice low AHI doesn't guarantee spectacular results. There are just so many more things that can and will mess with our sleep.

[robysue]

Qtrmidad ,

I bid you a very sad welcome to the CPAP&Insomnia club.

It sounds as though you've been through the wringer with your long term inability to stay asleep all night and to get back to sleep after that 2AM wake.

Many comments, but in three main groups.

Stuff directly tied to CPAP therapy and your current S9 machine
1) As others have said, "on and off" CPAP treatment is basically no treatment for the OSA. Yes, you are exhausted with trying to use the S9 Autoset and not sleeping very well, but it's important to figure out how to sleep with the machine every night all night long for as long as you do sleep. In other words, you need to commit to not allowing yourself to consciously go to sleep without the machine. Pain in the rear, yes. But it's critical to finally making a full adjustment to CPAP therapy after 7 years of less than compliant CPAPing.

2) Switching from APAP mode to CPAP mode may make a difference in your comfort level. Fiddling with the humidifier setting could make a difference. Are you using EPR? If so, what's it set to? Does it bother you or does it help? Some folks like EPR cranked up all the way to 3 and others can't stand it. So that's another thing to play with.

3) Have you looked at the data coming off the S9 Autoset? Do you know whether the machine is indeed controlling your apnea sufficiently well? Do you know whether you've got a major leak problem? If the data doesn't look good, then that's an obvious starting place. If the data does look good, then you know the machine is doing its job of preventing the apneas. And then the task is up to you to teach your body how to sleep better. (More on this later.)

4) Mask comfort issues? How would you rate the comfort and fit of your current mask? Have you tried other masks and other styles of masks?


Stuff tied to the insomnia
You write:

Prior to September I had been to my PCP a number of times because I was waking up around 2 am each night and had real trouble falling asleep.
...
I now know more med names than I care to! Ambien, Ambien CR, Trazedone, Alazapram, Adivan, Ropinerole,Nortriptyline, and I am probably forgetting some trials!

The latest test was 2 nights ago with 1 10 mg Ambien, 1 .25 Alazapram, and 1 10 mg Nortriptyline. Same sleep pattern wake at 2 to 3 am and do not fall back asleep and just toss every hour or so with my mask on and try.......

Last night was test per dx instructions add another 1 10 mg Nortrirtyline. Same results, but add now a sick stomach, and sweating, and shaky nervousness.

So no Nortriptyline tonight for me. 2 nights was no change in sleep and the side effects are not good.

So you and your doc have done extensive trials of pharmaceutical "solutions" to your insomnia problem, but none of them has provided you with any long term relief or made it any easier to sleep with your mask.

Maybe it's time to try a different approach altogether. As you and FarmGirl wrote:

Your body likes habits. If it's used waking up 4 hours after you fall asleep, it's going to take ALOT of work to change it.

Any ideas Farmgirl, I will try just about anything at this point. I even have given up my beloved 1 cup of coffee per morning.

Trying all the sleep habit stuff I have read as well.

Have you ever done any cognitive behavior therapy for the insomnia? In other words, have you ever tried a non-drug based approach to dealing with the insomnia?

The basic idea of CBT for insomnia is to reteach your body how to sleep without the need for drugs or at least with fewer drug. It's not easy and it takes time. But since none of the standard sleep drugs seem to be working for you, it doesn't seem like you have much to loose if you try something new. So if you get a chance to meet with a new sleep doctor, you might want to talk to the new doc about CBT for the insomnia in conjunction with dealing with adjusting to the CPAP to manage the OSA.

CBT for insomnia starts with such basic things as sleep hygiene. Has your doc or your sleep doc ever talked to you about your sleep habits and your lifestyle habits that may be contributing to the insomnia? But CBT doesn't end with sleep hygiene.

You say you're "trying all the sleep habit stuff" you have read. Specifically what things have you tried and how long have you kept it up?

Next, what do you do when you wake up and can't get back to sleep during the night? Your choice of how to react to those unwelcome nighttime awakenings matters a great deal when fighting insomnia.

How much stress are you under and how hard is it to bring some closure at the end of each day? Do you worry a great deal about things you cannot control when you are lying in bed NOT sleeping?

Have you ever been asked to keep a sleep log?

And do you wind up taking a nap or trying to catch up on sleep whenever you can? Those things can play havoc with trying to get yourself to be able to go back to sleep.

And, as a last resort, you can ask your new sleep doc about the idea of using a sleep restricted schedule for a short time in order to force your body to relearn how to sleep more continuously throughout the night. It's not fun to deal with, but using a sleep restricted schedule under the guidance of someone who understands its role in CBT for insomnia really can help your body to relearn the skills involved in getting to sleep, staying asleep, and quickly getting back to sleep when you do wake up in the middle of the night.

You can find out a lot more about things to try by reading my blog entry Taming the CPAP Induced Insomnia Monster. Even though your insomnia seems to have roots that are not directly tied to adjusting to CPAP, I think you may find lots of useful ideas to try if you read my essay. For what it's worth, this essay is largely based on my own struggles to rein in an insomnia monster that started when I first started CPAP. I can't say that I've cured my insomnia, but it is reined in to the point where I'm functioning on a daily basis and that was not true before I started the hard CBT work that I was doing a year ago.

And one of the best sources out there for ideas on how to deal with insomnia without drugs is Dr. Barry Krakow's Sound Sleep, Sound Mind.


Other things
1) Lots of medical conditions lead to poor sleep and daytime exhaustion. Sounds like the docs have already started eliminating some of them. But some obvious ones you haven't mentioned are thyroid problems, low vitamin D levels, and possibly low vitamin B levels or low iron levels. When was the last time you had a complete thyroid test done? What about testing your vitamin levels and iron levels? Have conditions like fibromialgia and chronic fatigue syndrome been ruled out as causes for your daytime exhaustion? Have you requested copies of all the results of your blood work?

2) Worry and stress plays a major role in how badly we sleep and how exhausted we are during the day. As hard as it sounds, are you getting any exercise at all during the day? Are you taking a bit of time to relax and enjoy something every day?

3) Have you got any pain issues? Headaches or joint pain can disrupt sleep very effectively.

Best of luck

[Qtrmidad]

Qtrmidad ,

Thanks for all the time and effort on this robysue! Let me try to answer under each comment that I know the answers.

I bid you a very sad welcome to the CPAP&Insomnia club.

Thanks~

It sounds as though you've been through the wringer with your long term inability to stay asleep all night and to get back to sleep after that 2AM wake.

Many comments, but in three main groups.

Stuff directly tied to CPAP therapy and your current S9 machine
1) As others have said, "on and off" CPAP treatment is basically no treatment for the OSA. Yes, you are exhausted with trying to use the S9 Autoset and not sleeping very well, but it's important to figure out how to sleep with the machine every night all night long for as long as you do sleep. In other words, you need to commit to not allowing yourself to consciously go to sleep without the machine. Pain in the rear, yes. But it's critical to finally making a full adjustment to CPAP therapy after 7 years of less than compliant CPAPing.

Yes agreed, I was only off for a while when i lost the weight during I think years 2 and 3. Was on fixed CPAP for 3-7th.

2) Switching from APAP mode to CPAP mode may make a difference in your comfort level. Fiddling with the humidifier setting could make a difference. Are you using EPR? If so, what's it set to? Does it bother you or does it help? Some folks like EPR cranked up all the way to 3 and others can't stand it. So that's another thing to play with.

Something to try, thanks.

3) Have you looked at the data coming off the S9 Autoset? Do you know whether the machine is indeed controlling your apnea sufficiently well? Do you know whether you've got a major leak problem? If the data doesn't look good, then that's an obvious starting place. If the data does look good, then you know the machine is doing its job of preventing the apneas. And then the task is up to you to teach your body how to sleep better. (More on this later.)

Yes, I am using the sleepyhead software as I have a MAC. AHI is real low under 1. But you can see where I awaken, take of the mask and shut off, and come back on a few minutes later. Reason is I awaken and Doc has me trying another round of meds. If not doing one of med tests I don't stop and just try to get back to sleep with no luck.
I read that some say I should get up and go read in another room for a bit and then go back when tired? Thats sounds tough at 2-3 AM but I guess anything is worth a try.



4) Mask comfort issues? How would you rate the comfort and fit of your current mask? Have you tried other masks and other styles of masks?

It seems ok, the current mask is a ResMed Mirage FX. My leaks are much better than with my Ultra Mirage II. That data and testing i tried switching for a week and leaks wee much higher on the old UM II. I did have trouble getting the FX adjusted, but seem to have that down now.

Stuff tied to the insomnia
You write:

Prior to September I had been to my PCP a number of times because I was waking up around 2 am each night and had real trouble falling asleep.
...
I now know more med names than I care to! Ambien, Ambien CR, Trazedone, Alazapram, Adivan, Ropinerole,Nortriptyline, and I am probably forgetting some trials!

The latest test was 2 nights ago with 1 10 mg Ambien, 1 .25 Alazapram, and 1 10 mg Nortriptyline. Same sleep pattern wake at 2 to 3 am and do not fall back asleep and just toss every hour or so with my mask on and try.......

Last night was test per dx instructions add another 1 10 mg Nortrirtyline. Same results, but add now a sick stomach, and sweating, and shaky nervousness.

So no Nortriptyline tonight for me. 2 nights was no change in sleep and the side effects are not good.

So you and your doc have done extensive trials of pharmaceutical "solutions" to your insomnia problem, but none of them has provided you with any long term relief or made it any easier to sleep with your mask.

Maybe it's time to try a different approach altogether. As you and FarmGirl wrote:

Your body likes habits. If it's used waking up 4 hours after you fall asleep, it's going to take ALOT of work to change it.

Any ideas Farmgirl, I will try just about anything at this point. I even have given up my beloved 1 cup of coffee per morning.

Trying all the sleep habit stuff I have read as well.

Have you ever done any cognitive behavior therapy for the insomnia? In other words, have you ever tried a non-drug based approach to dealing with the insomnia?

NO CBT yet but will for sure discuss with the new sleep DX.



The basic idea of CBT for insomnia is to reteach your body how to sleep without the need for drugs or at least with fewer drug. It's not easy and it takes time. But since none of the standard sleep drugs seem to be working for you, it doesn't seem like you have much to loose if you try something new. So if you get a chance to meet with a new sleep doctor, you might want to talk to the new doc about CBT for the insomnia in conjunction with dealing with adjusting to the CPAP to manage the OSA.

CBT for insomnia starts with such basic things as sleep hygiene. Has your doc or your sleep doc ever talked to you about your sleep habits and your lifestyle habits that may be contributing to the insomnia? But CBT doesn't end with sleep hygiene.

You say you're "trying all the sleep habit stuff" you have read. Specifically what things have you tried and how long have you kept it up?

Stopped Coffee and any Caffeine, same Go to bed time as tight as possible, Relax before bed by reading, no bedroom except to sleep. Very little TV. No napping. Excercise is on the aware list but its been very hard being exhausted. Today I forced myself and did 30 minutes on the treadmill. NO eating too late. No spicey meals. I think that covers most of it so far.

Next, what do you do when you wake up and can't get back to sleep during the night? Your choice of how to react to those unwelcome nighttime awakenings matters a great deal when fighting insomnia.

I either get up for 5 minutes and take a med as directed, or stay in bed and try to get back to sleep, think of a nice place or nice things.

How much stress are you under and how hard is it to bring some closure at the end of each day? Do you worry a great deal about things you cannot control when you are lying in bed NOT sleeping?

It very well could be the culprit. I have very high job stress. And my personality is what my wife would call anal. Even reading these boards and the data for the machine she would consider anal. But I am I must admit......I will use her words anal. I worry and plan a ton, and my job has a lot of stress. Its just really hard for me to figure out, even without any meds at all, I fell asleep fine, and seems most nights I still can fall asleep fine, I just can not stay asleep. When I awaken, I am not thinking about anything and there is no dreams, or panic or such. But our minds can do funny things I guess.


Have you ever been asked to keep a sleep log?

No, but i may very well start.

And do you wind up taking a nap or trying to catch up on sleep whenever you can? Those things can play havoc with trying to get yourself to be able to go back to sleep.

No naps, its strange, even if I am watching tv on rare occasion like a ball game, my head will bounce in and out of falling asleep. I think its a reaction to knowing I am not on my machine, so better not nod off. Long ago. 7 years ago, my whole key to having a sleep study was my snoring and waking my wife, and she witnessed me not breathing for short periods then snortng out of it. SO i have this mind training really that I don't like to NOT HAVE MY MACHINE and take it everywhere.

And, as a last resort, you can ask your new sleep doc about the idea of using a sleep restricted schedule for a short time in order to force your body to relearn how to sleep more continuously throughout the night. It's not fun to deal with, but using a sleep restricted schedule under the guidance of someone who understands its role in CBT for insomnia really can help your body to relearn the skills involved in getting to sleep, staying asleep, and quickly getting back to sleep when you do wake up in the middle of the night.

I think you mean to push the got bed time later in the evening right? They had me try that. Even pushing it later, it just means the awaking happens at the same time interval. Which to me is really strange. I seems to me that it is times at a certain fixed timing between cycles.


You can find out a lot more about things to try by reading my blog entry Taming the CPAP Induced Insomnia Monster. Even though your insomnia seems to have roots that are not directly tied to adjusting to CPAP, I think you may find lots of useful ideas to try if you read my essay. For what it's worth, this essay is largely based on my own struggles to rein in an insomnia monster that started when I first started CPAP. I can't say that I've cured my insomnia, but it is reined in to the point where I'm functioning on a daily basis and that was not true before I started the hard CBT work that I was doing a year ago.

I will surely read the whole thing and I have seen previous posts referring to different points in it. From what I have read your very talented.

And one of the best sources out there for ideas on how to deal with insomnia without drugs is Dr. Barry Krakow's Sound Sleep, Sound Mind.


Other things
1) Lots of medical conditions lead to poor sleep and daytime exhaustion. Sounds like the docs have already started eliminating some of them. But some obvious ones you haven't mentioned are thyroid problems, low vitamin D levels, and possibly low vitamin B levels or low iron levels. When was the last time you had a complete thyroid test done? What about testing your vitamin levels and iron levels? Have conditions like fibromialgia and chronic fatigue syndrome been ruled out as causes for your daytime exhaustion? Have you requested copies of all the results of your blood work?

I know they tested iron, and B levels. I am not sure about Thyroid and for sure i am going to ask. They have sure done enough other more expensive testing!

2) Worry and stress plays a major role in how badly we sleep and how exhausted we are during the day. As hard as it sounds, are you getting any exercise at all during the day? Are you taking a bit of time to relax and enjoy something every day?

I have to answer honestly, It seems my work is all consuming and seems to be all I do. I am trying to read more, and trying hard not to work on the weekends.

3) Have you got any pain issues? Headaches or joint pain can disrupt sleep very effectively.

I do have some bulging discs that have been a problem in the past, but I do not go to bed with any pain that I am aware of.

Best of luck

Thanks and you spent a lot of time on this post....Thanks a lot!
G

[Qtrmidad]

I dont think responding the way i did works real well,

Sorry robysue, still learning how to use this board being a newbie. My replies are all buried in your post.

[Pugsy]

Go in and just edit your report portion of the content and change the font color...then it will be easily seen.

At first I missed it but I went back and saw it. If you change the font color...it will be super easy to spot.
Click on Edit....highlight your response...choose font color and it will be easily spotted. Use preview to see it or click submit for final change.

[robysue]

I dont think responding the way i did works real well,

Sorry robysue, still learning how to use this board being a newbie. My replies are all buried in your post.

I found your answers well enough. Just returned from an evening of skiing and I need to not get myself side tracked by blogging too much. But I will take the time to answer you back tomorrow.

I would suggest that when you wake up and can't get back to sleep that you give yourself a reasonable amount of time to get back to sleep. The usual suggestion is to allow yourself about 20 or 30 minutes ESTIMATED in your mind---DO NOT LOOK AT A CLOCK! And if you are still wide awake and making no progress towards getting back to sleep, then, yes, it's time to get out of bed, go into a different room and do something quiet and relaxing. And return to bed once you start to get sleepy again. Yes, it's tough to make yourself get up out of a nice warm bed. But the idea is that lying in bed AWAKE is rewarding that unconscious part of your brain that keeps waking you up and that will not allow you to get back to sleep in a timely fashion.

You said you went to bed at the same time every night. Do you also get up at the same time every morning---even on weekends? When's bedtime and when's wake up time? And do you read in bed to relax?

[Qtrmidad]

I dont think responding the way i did works real well,

Sorry robysue, still learning how to use this board being a newbie. My replies are all buried in your post.

I found your answers well enough. Just returned from an evening of skiing and I need to not get myself side tracked by blogging too much. But I will take the time to answer you back tomorrow.

I would suggest that when you wake up and can't get back to sleep that you give yourself a reasonable amount of time to get back to sleep. The usual suggestion is to allow yourself about 20 or 30 minutes ESTIMATED in your mind---DO NOT LOOK AT A CLOCK! And if you are still wide awake and making no progress towards getting back to sleep, then, yes, it's time to get out of bed, go into a different room and do something quiet and relaxing. And return to bed once you start to get sleepy again. Yes, it's tough to make yourself get up out of a nice warm bed. But the idea is that lying in bed AWAKE is rewarding that unconscious part of your brain that keeps waking you up and that will not allow you to get back to sleep in a timely fashion.

You said you went to bed at the same time every night. Do you also get up at the same time every morning---even on weekends? When's bedtime and when's wake up time? And do you read in bed to relax?

10:30 bedtime, read only on the sofa and bed is only for sleep, the awakenings are like a clock, if I do by Dx request move the bedtime the awakening just moves in step.

Tested that as doc asked and recordered awakening.

I do like the log suggestion. I am going to need it!

[robysue]

You said you went to bed at the same time every night. Do you also get up at the same time every morning---even on weekends? When's bedtime and when's wake up time? And do you read in bed to relax?

10:30 bedtime, read only on the sofa and bed is only for sleep, ...

Let me see if I have this correct:

Bedtime about 10:30 every night. You have no real problems getting to sleep at 10:30.

You wake up around 2:00 AM every single night---about 3 1/2 hours after you first go to sleep. And you have serious trouble getting back to sleep when you wake up. Right now when you wake up you either:

• get up for a few minutes to take a prescription pill that typically either doesn't work or creates serious side effects with how you feel in the morning and during the day, OR
• you lay in bed not sleeping for long periods of time, but you don't get particularly anxious or upset about not sleeping

So my questions are:

What time do you get up for the day each morning? Do you sleep later on your days off?

Do you use an alarm clock?

And just how long do you lie in bed after the 2:00 AM wake up if you don't get up to take the pill?

the awakenings are like a clock, if I do by Dx request move the bedtime the awakening just moves in step.

So if you wait until 11:30 to go to bed, the middle-of-the-night wake up happens at 3:00?

When you tried moving the bedtime later, did you keep your normal morning wake up time? Or did you get up later in the morning?

[kteague]

Do you have copies of your sleep studies? Do they say anything about limb movements?

The report shows movement for about an hour and a half and then goes away for the night, they started when the CPAP was placed on, lasted for an hour, then gone, Sleep study showed in September Sleep efficiency was 73.5%, Total Sleep time was 353 minutes, stage 1 sleep was 9.5% stage 2 45.6%stage 3 and 4 combined 15.7 % and REM was 29.2

Sleep latency was 86 minutes and latency to REM was 67.5 minutes.
Not sure if that above is good or bad
Thanks for the question.....

I'm not quite sure if I've got things in the right order, but was the hour of movements the same time frame as the latency to REM of 67.5 minutes? What exactly did the report say about those limb movements?

[Qtrmidad]

Do you have copies of your sleep studies? Do they say anything about limb movements?

The report shows movement for about an hour and a half and then goes away for the night, they started when the CPAP was placed on, lasted for an hour, then gone, Sleep study showed in September Sleep efficiency was 73.5%, Total Sleep time was 353 minutes, stage 1 sleep was 9.5% stage 2 45.6%stage 3 and 4 combined 15.7 % and REM was 29.2

Sleep latency was 86 minutes and latency to REM was 67.5 minutes.
Not sure if that above is good or bad
Thanks for the question.....

I'm not quite sure if I've got things in the right order, but was the hour of movements the same time frame as the latency to REM of 67.5 minutes? What exactly did the report say about those limb movements?

The report said nothing at all except the figures of movement there were like 40 per hour and none with arousal. Nothing more in the report.

[Qtrmidad]

You said you went to bed at the same time every night. Do you also get up at the same time every morning---even on weekends? When's bedtime and when's wake up time? And do you read in bed to relax?

10:30 bedtime, read only on the sofa and bed is only for sleep, ...

Let me see if I have this correct:

Bedtime about 10:30 every night. You have no real problems getting to sleep at 10:30.

You wake up around 2:00 AM every single night---about 3 1/2 hours after you first go to sleep. And you have serious trouble getting back to sleep when you wake up. Right now when you wake up you either:

• get up for a few minutes to take a prescription pill that typically either doesn't work or creates serious side effects with how you feel in the morning and during the day, OR
• you lay in bed not sleeping for long periods of time, but you don't get particularly anxious or upset about not sleeping

So my questions are:

What time do you get up for the day each morning? Do you sleep later on your days off?

Do you use an alarm clock?

And just how long do you lie in bed after the 2:00 AM wake up if you don't get up to take the pill?

the awakenings are like a clock, if I do by Dx request move the bedtime the awakening just moves in step.

So if you wait until 11:30 to go to bed, the middle-of-the-night wake up happens at 3:00?

When you tried moving the bedtime later, did you keep your normal morning wake up time? Or did you get up later in the morning?

Hi Robysue,

I do get upset about not sleeping, but I am trying to stay in bed to try to get back alseep, not wake my wife up, and keep the mask on and try try try.

Our alarm is set for 7:30 AM.

When I did the go to bed later test, i did get out of bed at the same time 7:30 AM, but the awakening just moved ahead an hour plus or minus always 20 -30 minutes.

Thanks for the interaction robysue. Getting real frustrated. Last test was a med called Mirtazapine. The first night was Monday night. I did all the same routine and slept from around 11:10 until 6:AM It was very hopeful and the best in months. Tuesday night, same med same schedule and awakening was at 3:06 AM and no return to sleep. I am getting restless arms? which is strange. I am wondering now if its back disc related or Neuro.

G