First night on CPAP did not go so well :Update- a breakthru!

lazer wrote:

robysue wrote: 1) What kinds of things can you remember about your pre-CPAP WASO patterns? How often did you usually wake up in the night? How often did you have trouble getting back to sleep after waking up in the middle of the night? How did you feel when you would awake in the middle of the night? Anxious? Tired? Rested? Coming out of a dream? None of the above?

About the same pre-CPAP. Just wake up for no apparent reason. Sometimes I wake up just once, other times up to several times during the night. Usually I can get back to sleep I would guess within 20 minutes if I am comfortable. When I awake during the night, I usually just feel tired and first think it is morning already until I look at the clock then I feel upset because I woke up. Can't remember the last dream I've ever had.

Bingo!

There's one "bad habit" problem identified. You're a clock watcher and you let the clock tell you how to feel. Get Sound Sleep, Sound Mind and work through the chapters on clock watching.

It's tough for the dedicated clock watcher to do, but you'll feel better in the morning and you may sleep better during the night if you put that clock somewhere where it is impossible to see when you are in bed. Think of it this way: You don't need to get even more upset, so why bother looking at the clock?

robysue wrote: 2) Is there something qualitatively different about the post-CPAP wake than your usual pre-CPAP wake ups? If so, how would you describe this difference?

Not that I can think of other than feeling like the mask must not be working because I woke up still with it running so I get frustrated not wanting to chance feeling uncomfortable and another barrier to get over getting back to sleep.

robysue wrote: 3) After you take the mask off for the night, do you continue to wake up periodically during the rest of the night? If so, how do you feel at those wakes?

Varies. Sometimes I wake up, other times I don't. When I do, I just feel frustrated at waking up early and tired.

As Pugsy said: CPAP won't fix bad sleep, unless OSA is the single sole cause of the bad sleep. Since you can't tell any real difference between the nightly wake with mask on (except to blame the mask for the wake) and all the other wakes that you experience, I don't think these wakes are the fault of the CPAP; they're simply the ol' insomnia monster raising his head yet again in your bedroom.

With as deep of a history of sleep problems as you have and with an AHI as low as yours, you've got to have reasonable expectations for the CPAP: If snoring arousals are really one of the many causes of your poor sleep, then CPAP can help---once you're actually starting to sleep better. But the CPAP won't make you sleep better all by itself. Rather it will potentially help you sleep better by eliminating one of the reasons your sleep is so poor. You still have to work on all the others before your sleep will improve. And sleep maintenance insomnia is big one of your problems.

You also appear to be easily frustrated once you become aware of the fact that you are awake. That's an insomnia problem, not an OSA/snoring problem. And you expect to have "barriers to get over" when it comes to getting back to sleep. That's also an insomnia problem, not an OSA/snoring problem.

So for now you've got the choice: You can either figure out a way to go back to sleep with the CPAP on or you can take it off. But you need to quit blaming these wakes on the CPAP not working.

As what to do about the general sleep maintenance problem? That's the $64,000 question isn't it. First, to adjust to CPAP, you really will have to quit blaming it for the wakes. And you need to work on not getting so frustrated when you find yourself awake in the middle of the night. And you might not be able to figure out what's going to work for you all by yourself.

I'll ask a semi-obvious question: How much experience does your psychiatrist have with treating insomnia? Some do work with treating insomnia and others don't. And is your psychiatrist open at all to other forms of therapy? Or is he/she primarily interested in pursuing pharmacological approaches to patients' problems? I ask because I strongly suspect that what you really need in order to fix your insomnia problem is a good CBT person with plenty of experience treating insomnia. And I think that your sleep will only start to improve when you start addressing the insomnia, the snoring/OSA, and any other sleep-related issues (such as the depression, the anxiety, and the meds and their side effects) all at the same time.

Some links to research papers that may be of interest to you:

Cognitive Behavior Therapy and Pharmacotherapy for Insomnia (The link to the pdf file for the entire paper is on the right hand sidebar; it can be downloaded for free.)
A Primary Care “Friendly” Cognitive Behavioral Insomnia Therapy
A comparison of rates of residual insomnia symptoms following pharmacotherapy or cognitive-behavioral therapy for major depressive disorder.

Thanks robysue and I'll try your suggestions. Right now I have an hour and 15 minutes to go till off work. Feeling very tired and irritable

Yes, when you're not sleeping well it affects everything. And there's something deeply unsettling about realizing that you've got to relearn how to sleep as a grown adult. And it takes time. But with a lot of hard work and support and time it does get better.

Thanks robysue & Pugsy for your continued help, concerns, and suggestions. Here is the latest. My first successful night at keeping CPAP on all night! And I actually awaken at my first alarm feeling a bit different than normal and almost like I was better rested and ready to get right up and tackle the day.

So here is the what I did upon getting home last night. I moved the CPAP out to the couch. This is the first time I've used/tried it outside the bedroom. Felt like I really just needed to nap but ended up just laying and relaxing with it on and getting used to my breathing and how it felt outside of the bedroom. Now back when I first tried it a week or two ago, I had set it at 8cm and upon putting it on for the first time, immediately experienced the 'can't seem to exhaul' issue so after discussing with pugsy, ended up going up a size from the "small" to "medium" pillows along with lowering the pressure to 5cm. This certainly allowed me to get used to exhaling - not opening my mouth to feel like that was the only way to catch my breath... but during the following nights and getting adjusted to having the mask on, it started to feel like I wasn't getting enough air maybe so I slowly tweaked it back to 8cm about 1step up a night. So back to yesterday and my nap. I put it back on 7cm thinking maybe I went up too fast and needed lower again. Laying there on the couch, I could tell I wasn't going to fall asleep and although felt comfortable breathing for the most part - something just wasn't quite right. Before finally getting up off the couch to grab a bite to eat and get my shower for the night, I decided to take a guess and adjust it to something new for the night. I set it at 9cm and the 'fine adjustment, I think in decimals?... to a .5.

Went to bed last night around 10:30pm and guessing I fell asleep between 11 and 12 - not sure because I was also trying to start practicing the 'not watching the clock'. Well I can tell you that while I do remember waking several times during the night, it was very brief. Felt no discomfort from the CPAP until (and I'm guessing here because I was trying to avoid looking at the clock) about an hour before my alarm -say 5:30 am. I was having some major leakage and it was if the nasal pillows had become inverted or way too limber. So instead of taking off the mask, I manually adjusted them and kinda pulled out on the mask and re-situated it and got a seal. Fell right back to sleep. My first alarm goes off at 6:30, I spring up and for the first time I can remember in ages, I actually felt like I was almost ready to get out of bed! It was a remarkable feeling I can't quite describe because while I sit here at work still feeling a little tired, I feel a bit refreshed more-so than ever before.

To robysue - I think you are spot on about my insomnia issues though. I do over worry a lot about both my sleep - waking up - and life issues during the day - thus part of the whole reason I'm on both Neurontin and xanax for Anxiety issues. I will take your advice and follow up on that "Sound Sleep, Sound Mind". I forget, is that a book or do you mean the writing in your blog? My psychiatrist is more the "Prescription" oriented type. I actually came upon seeing him back about 7 years ago when my ex-wife left me after 24years of marriage and I had a breakdown and ended up in the hospital ward for 5 days. But prior to this, my PCP had been treating my depression with prescriptions.

I really feel my sleep disorder is due to various issues. But with that said and with my experience last night finally a positive with CPAP and keeping it on all night, I can see some form of daylight in it's potential to help me along with tackling the general "Insomnia". Again, I can't recall having that feeling of almost being ready to "get out of bed at first alarm" during a workweek for as far back as I can remember.

Oh, A little more history on me. I've had a bit of a deranged sleep schedule in my past dating back to my first job out of highschool. Spent 10+ years working a straight Night-turn shift. This really had my day/nights messed up for years after even. Then more recent, in 1998, I took to truck driving OTR which really had me sleeping all sorts of different hours. Did this for about 5 years until a couple of back injuries had me switch careers once again. Now finally, for the past 6 years, I've had/have a dayturn 8-5 Monday-Friday desk job working at a computer which has been my passion. I'm wondering if part of this is so much of my past sleep schedule being so erratic.

lazer wrote:I'm wondering if part of this is so much of my past sleep schedule being so erratic.

Very likely that past habits are part of the problem. Bad habits are real easy to make and double hard to break. My husband is OTR truck driver. His sleep at home is horrible. No way can he have any semblance of a normal sleep schedule. Work doesn't permit it. Be thankful you aren't doing it now with the electronic logs telling you when you can rest.

Glad you had a good night last night. You know you are farther along with your adjustments to having this alien stuck to your face than some people manage to be at this stage. If all this was easy..we wouldn't have a 50% failure rate for people shoving the machine in the closet because they just couldn't deal with it.

Good job...it does get better and it does get easier.

lazer,

Congrats on your first full night of sleeping with the mask!

You write:

Well I can tell you that while I do remember waking several times during the night, it was very brief. Felt no discomfort from the CPAP until (and I'm guessing here because I was trying to avoid looking at the clock) about an hour before my alarm -say 5:30 am. I was having some major leakage and it was if the nasal pillows had become inverted or way too limber. So instead of taking off the mask, I manually adjusted them and kinda pulled out on the mask and re-situated it and got a seal. Fell right back to sleep.

See? That's exactly what I told you: Solve the obvious problem, don't worry about the time, and you'll get back to sleep!

It's much more satisfying than taking the mask off, looking at the clock and spending precious sleep time worrying about why you're awake and how soon the alarm will go off isn't it?

You also write:

To robysue - I think you are spot on about my insomnia issues though. I do over worry a lot about both my sleep - waking up - and life issues during the day - thus part of the whole reason I'm on both Neurontin and xanax for Anxiety issues. I will take your advice and follow up on that "Sound Sleep, Sound Mind". I forget, is that a book or do you mean the writing in your blog?

Sound Sleep, Sound Mind is a self-help book for insomniacs written by Dr. Barry Krakow. The first part of the book primarily deals with all kinds of non-drug based strategies for helping a chronic insomniac first figure out what it is they are doing while in bed that's preventing them from getting a sound night's sleep and what they can do differently to teach their body how to get a sound night's sleep. The second part of the book is a careful look at OSA and CPAP/BIPAP and how OSA/UARS and snoring can be a significant underlying cause for chronic insomnia in many individuals. There's a bit of a preachy tone hear since Dr. Krakow knows that many of the folks in his audience are deep in denial about the possibility that they have sleep disordered breathing. But it's still chock full of useful info on just how a CPAP might be a useful tool in addressing chronic insomnia. Not a magic bullet---but a useful tool. It helps that Krakow is himself a user of a PAP machine.

My psychiatrist is more the "Prescription" oriented type. I actually came upon seeing him back about 7 years ago when my ex-wife left me after 24years of marriage and I had a breakdown and ended up in the hospital ward for 5 days. But prior to this, my PCP had been treating my depression with prescriptions.

Sounds like the depression has been serious enough to warrant the meds.

About your insomnia you write:

I really feel my sleep disorder is due to various issues. But with that said and with my experience last night finally a positive with CPAP and keeping it on all night, I can see some form of daylight in it's potential to help me along with tackling the general "Insomnia". Again, I can't recall having that feeling of almost being ready to "get out of bed at first alarm" during a workweek for as far back as I can remember.

Yes, it's a good sign all around: It could be that the CPAP made a difference now that you've slept with it for a whole night. It could be that working on "not watching the clock" made a difference and that helped prevent some of your wakes (and the last wake in particular) from deteriorating into a major middle-of-the-night anxiety and worry-filled, anxiety-laden episode of insomnia. My best guess is that BOTH these things are JOINTLY responsible for why you felt so much more close to being ready to get out of bed this morning. There's a synergism at work here: The chosen improvement in sleep hygiene (no clock watching) allowed you to sleep with the CPAP for more than an hour and sleeping with the CPAP allowed you to be more rested and more capable of continuing to choose to NOT clock watch through the subsequent wakes. The net result? You got both more sleep (because of the "no clock watching") and better sleep (because the CPAP eliminated the snoring/OSA related arousals).

And that's been my point all along: For your complex sleep disorders, you need a multiple approach strategy. It will involve the CPAP for addressing the snoring and OSA. It will continue to involve treatment of the depression and anxiety to minimize the night time worrying. And it will involve continuing to work on addressing the insomnia through improving your sleep related behaviors so that your body and mind can form a deep association that Time in Bed = Time to Sleep.

And so my question about the docs is this: Who is treating the insomnia? And what kind of an approach have they used? Or has the insomnia by and large been seen as merely a symptom of the depression?

Because in addition to treating the depression as a medical condition and the OSA/snoring as a medical condition, I think you need to treat the insomnia as a medical condition in its own right. Only I don't think you need to add a long term prescription sleeping pill to your long list of meds. I think you need a referral to someone who's got some experience using CBT to treat insomnia. The CBT for insomnia will literally help you retrain your body and mind so that they can and want to sleep soundly during the night.

Treating each of these conditions (the depression/anxiety, the OSA/snoring, and the insomnia) is, by itself, a necessary condition to solving your sleep problems. But treating any proper subset of these of three conditions is not sufficient to solve your sleep problems: You've got to address all three of them simultaneously in order to solve the whole of your sleep problems.

And finally you write:

Oh, A little more history on me. I've had a bit of a deranged sleep schedule in my past dating back to my first job out of highschool. Spent 10+ years working a straight Night-turn shift. This really had my day/nights messed up for years after even. Then more recent, in 1998, I took to truck driving OTR which really had me sleeping all sorts of different hours. Did this for about 5 years until a couple of back injuries had me switch careers once again. Now finally, for the past 6 years, I've had/have a dayturn 8-5 Monday-Friday desk job working at a computer which has been my passion. I'm wondering if part of this is so much of my past sleep schedule being so erratic.

Yep, unlearning the "bad habits" acquired through the years of "deranged sleep" will be another necessary (but not sufficient) condition for you to get to where you are genuinely sleeping well every single night, all night long. And CBT for Insomnia is the way to unlearn these bad habits you've acquired through the years of "deranged" sleep schedules.

robysue wrote:And so my question about the docs is this: Who is treating the insomnia? And what kind of an approach have they used? Or has the insomnia by and large been seen as merely a symptom of the depression?

It's been pretty much left up to my psychiatrist. He had me on Trazadone for awhile at night in addition to the xanax and it initially helped some but didn't last more than a couple months, then we upped the Trazadone from 50mg to 100mg but it still didn't seem to help so I stopped taking it. Other than that, just following my PCP's advise in limiting my caffeine intake and losing the weight. Looking back while some of this has helped, it's been hit and miss. Some nights I can get to sleep when I want to, others, I just lay in bed tossing and turning. One big mistake I've been guilty of is getting in bed and watching tv for an hour or two. I see now I have to eliminate that completely for any chance at success.

I will be ordering that book you mentioned. Thanks for the extensive and continued help it's very much appreciated.

An update as far as my new DME. They have/had a tentative appt set for me Monday to come in and fit me with equipment BUT I was to call back this morning to confirm, which I did and was told they were calling back "central" to get their approval I guess on proceeding with me and the insurance dilemma of the AHI not meeting criteria but having a pre-auth in place and my doctor's backing. I'm going to call them back as they were to get right back to me and its been over four hours now. I want an answer because I already have a script in place from my doc at Cpap.com and am ready to just proceed with this on my own if need be.

lazer wrote:

robysue wrote:And so my question about the docs is this: Who is treating the insomnia? And what kind of an approach have they used? Or has the insomnia by and large been seen as merely a symptom of the depression?

It's been pretty much left up to my psychiatrist. He had me on Trazadone for awhile at night in addition to the xanax and it initially helped some but didn't last more than a couple months, then we upped the Trazadone from 50mg to 100mg but it still didn't seem to help so I stopped taking it. Other than that, just following my PCP's advise in limiting my caffeine intake and losing the weight. Looking back while some of this has helped, it's been hit and miss. Some nights I can get to sleep when I want to, others, I just lay in bed tossing and turning. One big mistake I've been guilty of is getting in bed and watching tv for an hour or two. I see now I have to eliminate that completely for any chance at success.

That's why I think you need to see if either of them is willing to refer you to someone who uses a comprehensive CBT approach to managing the insomnia. You might want to show both docs those papers about CBT for insomnia that I posted links to earlier. There really is some scientific evidence that CBT gives better long term results for managing insomnia than sleeping meds do.

You can do it on your own of course. But that's harder because there's no "outside person" that can hold you accountable. I found the monthly meetings with my sleep doc's PA were critically important on keeping me honest about what I was doing right and wrong during the worst part of my War on Insomnia.

Best of luck with the new DME. I hope you get an answer soon so you can move on to the new machine one way or the other.

robysue wrote:

lazer wrote:

robysue wrote:And so my question about the docs is this: Who is treating the insomnia? And what kind of an approach have they used? Or has the insomnia by and large been seen as merely a symptom of the depression?

It's been pretty much left up to my psychiatrist. He had me on Trazadone for awhile at night in addition to the xanax and it initially helped some but didn't last more than a couple months, then we upped the Trazadone from 50mg to 100mg but it still didn't seem to help so I stopped taking it. Other than that, just following my PCP's advise in limiting my caffeine intake and losing the weight. Looking back while some of this has helped, it's been hit and miss. Some nights I can get to sleep when I want to, others, I just lay in bed tossing and turning. One big mistake I've been guilty of is getting in bed and watching tv for an hour or two. I see now I have to eliminate that completely for any chance at success.

That's why I think you need to see if either of them is willing to refer you to someone who uses a comprehensive CBT approach to managing the insomnia. You might want to show both docs those papers about CBT for insomnia that I posted links to earlier. There really is some scientific evidence that CBT gives better long term results for managing insomnia than sleeping meds do.

You can do it on your own of course. But that's harder because there's no "outside person" that can hold you accountable. I found the monthly meetings with my sleep doc's PA were critically important on keeping me honest about what I was doing right and wrong during the worst part of my War on Insomnia.

Best of luck with the new DME. I hope you get an answer soon so you can move on to the new machine one way or the other.

Thanks. And I'll definitely be looking into that CBT approach more and talking to my doctor(s) about it. Called back the new DME and the guy I needed to speak with was out (on the road) with patients. The lady I spoke with looked through the notes and says I'm still down for my appt. on Monday. I told her I would still call back before leaving work Monday to confirm with the guy that is supposed to be assigned to me. I fully expect a last minute surprise but at least I know I have another way of getting started if so and can place an order online if they don't want to work with me.

Been going well ever since I left it on that whole night I've been 100% compliant every night. Tried to downsize the nasal pillows from medium to small last night thinking they might stay sealed and fit my nose better but had too much trouble exhaling with the smalls so went back to the mediums. I actually dreamed a little last night for the first time in ages.

Just got back from my appointment with my new DME which is going to work with me. Spent an hour there getting fitted with mask (Swift FX) and showing me machine (loaner) - Philips Resperonics - Remstar Auto w/ A-Flex and heated humidifier set to 4cm - 20cm. He said at worst if for some reason the insurance declines to pay for anything, I would just be charged for the mask and tubing which I would get to keep. No charge for the loaner machine. He said he will be in touch with me to follow up how I'm doing and about what insurance says and I can call him anytime. A whole different experience with this DME than my initial one which refused to do anything for me. Oh and he even said if this helps me and insurance doesn't cover that they in fact have (used) units they could offer me to purchase - Again, unlike the original DME that closed the door on me completely.

Good job.
That software I sent you...it will work...you can also use SleepyHead if this machine isn't the 60 series machine. If it isn't...don't worry about the lack of heated hose thing. That is easily remedied if needed later.

lazer, reading your posts is almost like looking in a mirror except I am only taking setraline and I have zero insomnia problems to the point that I am about half a step from being narcoleptic.

I just switched from the Swift LT to Swift FX nasal pillows, i find the FX much more comfortable.

Good luck!!

JoeP wrote:lazer, reading your posts is almost like looking in a mirror except I am only taking setraline and I have zero insomnia problems to the point that I am about half a step from being narcoleptic.

I just switched from the Swift LT to Swift FX nasal pillows, i find the FX much more comfortable.

Good luck!!

Hi Joe, Actually that is exactly what I'm switching from. The used Swift LT that Pugsy kindly sent me to get started on the "old" straight Cpap machine given to me from a coworker to a new Swift FX from my DME. What exactly is setraline? Guess I could google it

Pugsy, How do I identify if this machine is the 60 series or not? And would there be any harm in my removing the SDcard to do my own data checking via SleepyHead or that software you sent me? As in, would the DME, Insurance, or Dr know I was reading it on my own or anything by removing it?

Thanks.

The 60 series machines are a different color.
A darker gray on the face..https://www.cpap.com/productpage/pr-sys ... -tube.html

The regular PR S1..what appears as white here on the face...is really a light silver gray.
https://www.cpap.com/cpap-machine/respi ... -flex.html

Won't hurt a thing to try the SD card after tonight and see what SH says.
No changes are made to anything that would impact your compliance or insurance or whatever.
Even using EncoreBasic which does have the ability to change pressure with it.. it is deliberate and no way you can make a mistake unless you inadvertently tell the software to erase the card..there is that choice there but right next to it is the choice to return the card to the patient.

So won't hurt a thing to look at your data.. I know you are dying to see it anyway. I would be biting at the bit to see it.

BTW I think you will like the Swift FX.....just don't make that top strap too tight. It is real easy to overdo it.

I honestly can't tell. The face around the dial appears a sort of "off white".

Setraline is generic Zoloft.