Frustration is setting in..

[brianrus]

This is my first time posting on the site, though I've been a CPAP user for a year now (almost exactly!) I was reading some other posts, and have started to see how much help the community can be in keeping each other informed and motivated to make the treatment work. So i don't think I really have a question, just simply wanted to tell my story, in case someone may have some advice or words of encouragement to keep me going.

All of my adult life I have struggled with sleep and sleepiness. While others could lie down and fall right to sleep, I would struggle laying there for hours at times, trying to get myself to sleep. While others would wake up ready for the day ahead, I would struggle to drag myself out of bed, always in need of seemingly hours more of sleep. While others would be able to persist through the day in a wakened state, with energy and focus, I would struggle with sleepiness, seemingly always on the verge of nodding off, until, of course, it came time to actually fall asleep at night, where the cycle would start again. When I was 25 (8 years ago) I finally went to get a sleep study done. Very much ignorant as to what the study was looking for, or what options there were out there, I was told that I was a light sleeper but did not have apnea. Years later when I got my medical records and looked through the report (now with an understanding of what the numbers meant), I can see that I had an arousal index of 22/hr with only 3 total apnea episodes throughout what I remember to be a very light night of sleep (constantly waking up from things going on in other rooms, the strange place, wires on my head, etc.) So I continued to try to treat the symptoms, rather than worry about any cause for the sleepiness I was always feeling. I found mild success by improving my sleep hygiene, using the bed only for sleep, trying to keep a consistent sleep/awake time, but for the most part still struggled with it.

Finally, after a friend with narcolepsy insisted that I go have another sleep study done upon hearing of my struggles with sleepiness all of my adult life, I was diagnosed with mild obstructive sleep apnea a year ago. The study revealed only 11 apneas per hour this time out of 29 total arousals per hour. At the time I was excited to find out that there may be a single cause to much of the misery I had felt with regard to sleep, daytime sleepiness, depression, high blood pressure, etc. This seemed like a silver bullet, so I went into it with high hopes. I had felt pretty good after the 2nd overnight study where I used the mask, and was told I went through all of the sleep stages successfully, so I was sure it would be the cure. Soon I realized, after weeks and months of struggling with adjusting to wearing the mask, playing with pressure and humidity levels, it was going to be more of a struggle and a process, than a switch to flip on.

I originally started with the Mirage Activa nasal mask, which I though was comfortable and I seemed to comply with at first, but I think I started to relax more and more and soon found out that I was no longer blocking my mouth with my tongue, so my lips were flapping in the breeze. I tried a chin strap, but it wasn't a mouth opening, but simply that I didn't seal the passageway with my tongue. So I switched to the Mirage Quattro full face mask. This was basically a 9 month struggle. I don't think I've ever felt conscious claustrophobia, but I know it was there. I had to wear the mask much tighter than the nasal mask, I had more itching (not from allergic reaction, more from the fact that I couldn't scratch it or maybe dryness), just more all around anxiety over wearing the thing. I even tried the Mirage Liberty hybrid, just to see if it would help to have less of my face covered, but that had too many leakage and itchy nostril problems. I slowly became more and more accustomed to the full face mask, but even to this day, I prefer the nasal mask and have my struggles with the full face mask. To the point where I got fed up a few months ago, wanted to make the treatment work, while eliminating any chance of air leaking out my mouth, so I took the small strips of tape used for stitching wounds and taped up my mouth while wearing the nasal mask. It actually worked, at least to make sure I kept the mask on and was comfortable all night. It wasn't perfect, as I'd really have to be clean shaven for the tape to hold, wasn't the most convenient thing to have your mouth taped shut, and it was a pain to do each night.. but even now, when worse comes to worse, I'll do it just to avoid the full face mask.

Throughout that time I was using the S8 Elite II machine, playing around constantly with pressure and humidity, always wishing I could have more detailed stats on how well it was working. So after getting new insurance, and asking my doctor, I just received a new S9 AutoSet the other day, so I am looking forward to some more detail in my data, along with the benefits that an APAP brings.

At this point I am simply just frustrated, confused, uncertain if this was all worth it (the nightly struggles, mental anguish, and financial burden the diagnosis has brought), and starting to wonder if I even have sleep apnea at all. Obviously the one test a year ago confirms I do, but after struggling through treatment, you start to wonder if it was a misdiagnosis, maybe a second test is in order, maybe it's all just a big scam?!? I don't feel that I have achieved any success in my treatment, despite my persistence and enthusiasm for making it work. I still wake up throughout the night, many times with the mask laying beside me blowing air out into the room. But even on nights where I do comply with wearing the mask the entire night, I will wake up after 5 hours, and then struggle unsuccessfully to fit more sleep in before the alarm. Some nights it's to urinate, some night's it's because of an itch on my nose under the mask, some night's a mask leak, and some night's there is no obvious explanation at all. Inevitably, after I am awakened, I go through this struggle to fall back asleep, I will finally be my most tired just at the time I am supposed to wake up, and then throughout the day battle extreme daytime sleepiness, to the point where I cannot function. I am still hopeful there is an answer in that hose, but I have yet to realize it.

Perhaps I should be concentrating on the 18-19 "other" arousals (for which neither study has an explanation) in my sleep studies rather than the apneas?

[Muse-Inc]

Welcome aboard! Great folks, support, and info here.

Do you have a copy of your sleep study? If you do, how many arousals and for what reason; they interfer with restful sleep. Lots of things to investigate. Did you have a lot of restless leg movements?

[Julie]

And I'm wondering how well you've been checked for other causes entirely, anything from reasons for insomnia to thyroid problems, chronic (if mild) clinical depression, anemia, heart problems, a whole lot of other things. Whether or not you have 'mild' apnea (and I sort of wonder if you do, or if you have been shuttled into thinking so (not saying anyone's been dishonest, but possibly not 100% in the whole picture... what was your 02 saturation low point on your sleep study?). I would try one last time to be sure that, even if you do have apnea (and we'll all be quite happy to help with those issues) there isn't some other 'hidden' (latent to an MD) thing there.

[BrettAnd]

Hiya, Welcome and thanks for posting. Many ppl here have years on pap machines. They willingly share as they can or are able. I liked this site/forum because of that. I am reading and learning as my time allows also. I don't recall being able to sleep well for years either but it's a starting point, as I'm going on my second year also with my S8II Elite. As you become more comfortable relating to your detailed history, more ppl may like to jump in with useful advise. Like who and where were the studies done. Did you talk to a RT about your polysomnography? As you may have read, many hospitals are not as organised as we might like to believe on sleep disorders. In any event, asking questions is the right thing to do. Never quit.

[ChelseaChestnut]

I am right there with you. I was using my cpap very regularly for 2 months. The longest I ever kept the mask on was 6 hours. Usually I took it off 3-4 hours after first falling asleep. I never felt like I had gotten any better sleep than I had before, in fact, I think I got less sleep and more stress from dealing with it every day. I am tired of cleaning it, messing with it, etc. I had an anxiety attack and severe indigestion a couple of weeks ago and haven't been able to put the mask back on since. Not sure what to do now.

[robysue]

All of my adult life I have struggled with sleep and sleepiness. While others could lie down and fall right to sleep, I would struggle laying there for hours at times, trying to get myself to sleep. While others would wake up ready for the day ahead, I would struggle to drag myself out of bed, always in need of seemingly hours more of sleep. While others would be able to persist through the day in a wakened state, with energy and focus, I would struggle with sleepiness, seemingly always on the verge of nodding off, until, of course, it came time to actually fall asleep at night, where the cycle would start again.

<much deleted>

I still wake up throughout the night, many times with the mask laying beside me blowing air out into the room. But even on nights where I do comply with wearing the mask the entire night, I will wake up after 5 hours, and then struggle unsuccessfully to fit more sleep in before the alarm. Some nights it's to urinate, some night's it's because of an itch on my nose under the mask, some night's a mask leak, and some night's there is no obvious explanation at all. Inevitably, after I am awakened, I go through this struggle to fall back asleep, I will finally be my most tired just at the time I am supposed to wake up, and then throughout the day battle extreme daytime sleepiness, to the point where I cannot function. I am still hopeful there is an answer in that hose, but I have yet to realize it.

Please don't take this the wrong way. But it sounds to me that you need to do serious work on treating the INSOMNIA at this point. Maybe even more than the mild apnea. Have you ever done serious, hard work on establishing high quality sleep hygiene under the guidance of a sleep doctor or a PA who works for a sleep doctor?

Because it sounds to me (as a long term insomnia sufferer who has had to work hard on sleep hygiene myself) that you are doing a number of things that are feeding the insomnia monster. And the on-going struggles you're having with CPAP are most certainly feeding your insomnia monster as well. And so you're trapped in a vicious cycle: The insomnia makes it hard to adjust to CPAP, which feeds the insomnia, which makes it hard to adjust to CPAP, which feeds the insomnia, which makes it hard to adjust to CPAP, which ..... You won't be able to break the cycle without some help taming the insomnia beast from a sleep doctor.

I speak from personal experience. I was largely daytime-symptom-free before my apnea diagnosis, but my apnea is smack dab in the middle of the MODERATE range. I've been struggling to adjust since the end of September and posting here at length about my battles with both CPAP and the insomnia monster. There have been numerous good responses and suggestions by the members not only on how to help make the adjustment to CPAP better, but also on how to try to cope with the insomnia. But the work that I am now doing with the PA in my sleep doctor's office concerning the insomnia is as critical as anything else as I have done in my struggle the last 3 1/2 months: At this point my sleep issues are no longer directly related to the BiPAP machine; they are now definitely first and foremost INSOMNIA issues. Grounded and triggered by the apnea diagnosis last August and the necessity to adjust to CPAP, yes, but now the insomnia monster is feeding on issues that range far and wide and are no longer exclusively due to my sleeping with the BiPAP. Hence the current treatment of the insomnia is no longer just focused on making the BiPAP easier for me to tolerate.

[brianrus]

Wow! Thank you so much for reading my way too long story, and responding so quickly! I can already tell that joining this community was a great idea! Most of all, I think this is the moment in my life when I finally start to try to take control of this problem and get to the bottom of it.

Here's my attempt at trying to answer everyone's responses:

Do you have a copy of your sleep study? If you do, how many arousals and for what reason; they interfer with restful sleep. Lots of things to investigate. Did you have a lot of restless leg movements?

I do not have a copy of my most recent sleep study from last year (I did one full night with no mask, and then 2 more with mask.) I do have a copy of my 2003 study, which I finally just went back to look over and in 2003 I had 22.2 total arousal/awakenings per hour, but an AHI of only 0.6, and those were all central apneas. The other arousals were not due to OSA's, restless leg, or in fact, anything, according to the study. It literally says that they found no cause for the arousals. I remember waking up a lot during that study and getting very poor sleep, mainly do to noise and things going on in other rooms, besides the awkwardness of being there. I do know from my most recent study that I had 11 OSA events per hour out of 29 total arousal/awakenings, but now that I went back and read my old sleep study, I'm going to contact my current sleep center and get a copy of the report.

And I'm wondering how well you've been checked for other causes entirely, anything from reasons for insomnia to thyroid problems, chronic (if mild) clinical depression, anemia, heart problems, a whole lot of other things. Whether or not you have 'mild' apnea (and I sort of wonder if you do, or if you have been shuttled into thinking so (not saying anyone's been dishonest, but possibly not 100% in the whole picture... what was your 02 saturation low point on your sleep study?). I would try one last time to be sure that, even if you do have apnea (and we'll all be quite happy to help with those issues) there isn't some other 'hidden' (latent to an MD) thing there.

You hit the nail right on the head. I think I've finally woke up (wow, unintentional bad pun) to the fact that there is more than just some apneas going on. I have had a history of chronic mild clinical depression, high blood pressure, an enlarged heart, and have struggled with insomnia. I think what happened is that I was looking for the silver bullet, and thought I had found it when they told me I had sleep apnea. "There's the cause of all my problems!" So instead of worrying about treating those other things, namely the depression and insomnia, and making sure to ask questions and be proactive with getting to the bottom of things, I just went along with it assuming all my troubles would go away once I strapped on the hose. When I've talked with my doctor about my frustrations since the diagnosis, she listens and understands, but I think she's been really concentrating on treating the apneas, rather than the other factors in my poor sleep quality. Thinking back on how much time I've spent struggling with the cpap treatment, not to mention the money, I would hope I'm not just being led in a direction without cause. She seems insistent that I have it without a doubt due to my study, but along the way I've had something in the back of my head saying maybe I need a 2nd study done (sans mask), and a 2nd opinion (if I can afford it!)

Hiya, Welcome and thanks for posting. Many ppl here have years on pap machines. They willingly share as they can or are able. I liked this site/forum because of that. I am reading and learning as my time allows also. I don't recall being able to sleep well for years either but it's a starting point, as I'm going on my second year also with my S8II Elite. As you become more comfortable relating to your detailed history, more ppl may like to jump in with useful advise. Like who and where were the studies done. Did you talk to a RT about your polysomnography? As you may have read, many hospitals are not as organised as we might like to believe on sleep disorders. In any event, asking questions is the right thing to do. Never quit.

I had my study done at the UMass Pulmonary Medical Center in Worcester, MA. They really seem like an excellent facility (at least I felt much better about it than my previous study at Gaylord Sleep Services in Fairfield, CT back in '03.) But I think I'm realizing that I need to be a bit more proactive and think of the whole picture rather than just accept the diagnosis for sleep apnea.

I am right there with you. I was using my cpap very regularly for 2 months. The longest I ever kept the mask on was 6 hours. Usually I took it off 3-4 hours after first falling asleep. I never felt like I had gotten any better sleep than I had before, in fact, I think I got less sleep and more stress from dealing with it every day. I am tired of cleaning it, messing with it, etc. I had an anxiety attack and severe indigestion a couple of weeks ago and haven't been able to put the mask back on since. Not sure what to do now.

I know exactly what you mean. I have many times been "this" close to throwing the machine out the window and giving up altogether. When the benefits are bit slower in showing up and less obvious, it allows too much doubt to creep in.. and that's not a good place to be. But leaving the doubt aside, just the anxiety, mild embarrassment, and hassle alone involved with strapping that thing on every night can be extremely tough to overcome even if you were seeing results.

Please don't take this the wrong way. But it sounds to me that you need to do serious work on treating the INSOMNIA at this point. Maybe even more than the mild apnea. Have you ever done serious, hard work on establishing high quality sleep hygiene under the guidance of a sleep doctor or a PA who works for a sleep doctor?

Because it sounds to me (as a long term insomnia sufferer who has had to work hard on sleep hygiene myself) that you are doing a number of things that are feeding the insomnia monster. And the on-going struggles you're having with CPAP are most certainly feeding your insomnia monster as well. And so you're trapped in a vicious cycle: The insomnia makes it hard to adjust to CPAP, which feeds the insomnia, which makes it hard to adjust to CPAP, which feeds the insomnia, which makes it hard to adjust to CPAP, which ..... You won't be able to break the cycle without some help taming the insomnia beast from a sleep doctor.

I speak from personal experience. I was largely daytime-symptom-free before my apnea diagnosis, but my apnea is smack dab in the middle of the MODERATE range. I've been struggling to adjust since the end of September and posting here at length about my battles with both CPAP and the insomnia monster. There have been numerous good responses and suggestions by the members not only on how to help make the adjustment to CPAP better, but also on how to try to cope with the insomnia. But the work that I am now doing with the PA in my sleep doctor's office concerning the insomnia is as critical as anything else as I have done in my struggle the last 3 1/2 months: At this point my sleep issues are no longer directly related to the BiPAP machine; they are now definitely first and foremost INSOMNIA issues. Grounded and triggered by the apnea diagnosis last August and the necessity to adjust to CPAP, yes, but now the insomnia monster is feeding on issues that range far and wide and are no longer exclusively due to my sleeping with the BiPAP. Hence the current treatment of the insomnia is no longer just focused on making the BiPAP easier for me to tolerate.

You are exactly right, and after reading your post and the other responses, I am completely convinced that I have to stop thinking that the apneas (if they are even an issue at all) are the cause of all of my sleep problems. I have never worked with a sleep doctor or PA to establish a good sleep hygiene, and after looking through some guides online about proper sleep hygiene, I'm realizing that mine could use a lot of work. This is something I've probably known for a while, as most of it is common sense, but I suppose you always say to yourself, how much of a difference could it really make? My biggest violation is probably keeping an inconsistent sleep/wake time, but there are other things. This is something I'm going to have to get serious about if I really want to start to change my sleep quality, and then maybe after I've gotten that under control, I can go back to concentrating the apneas.


Thank you all so much for responding with great advice, questions and suggestions! As you can tell, just writing things out and reading your responses has opened my eyes to some things that I think I've been completely ignoring during this process. Mostly though, I'm realizing that I really have to do some work on my own to take control of the issue, besides getting back to my sleep doctor to discuss things a bit more thoroughly. I'm almost embarrassed that I went this whole year, just kinda going along with things, hoping that I found an answer, struggling with the cpap, without stopping for a minute to really evaluate what's going on!

[gm60]

I feel for you and am in the same boat. Been on CPAP for three weeks and can’t say I've slept one night any better than before CPAP.

I started out with the Swift FX but found out I’m a mouth breather so switched to the Mirage Liberty. I did like the FX but was not keen on taping my mouth shut or wrapping my head with an ace bandage (didn’t try the sleep cap). Now instead of waking up a few times a night with cotton mouth I wake up with air leaks from the main mask or nasal pillows. I’m a side/back sleeper and am pretty sure I’m disturbing the mask in my sleep. Once awake it is hard for me to go back to sleep. I’ve had the liberty since last Friday and have made it through the night with it on once. Very frustrating to say the least!

I would like to try the new Quattro FX.

A little background;
I've had sleep issues since a teenager. They have just gotten worse as I have gotten older, more stress for starters. I've always had a problem turning my mind off at night and am very sensitive to noise and light.
I've been on sleep medication for at least the last 10 years. Problem is I have built up a tolerance to the meds over the years, I'm on 12.5 mg ambien cr, 5 mg ambien, and 10 mg Clonazapam and these have a minimal effect . I am on a Thyroid medication, it’s a little low, have been checked for heavy metals in my tissues. DR’s have tried various meds, many for depression but they either had side effects or little effect on my sleep. My goal is to get off the sleep meds and get a decent nights sleep!

Just turned 50, weight is 180, height 5’10”
Married with three sons 19, 18, and 16.

First sleep study showed;
368 minutes total sleep, 88% efficiency, sleep onset after 12 minutes, absent slow wave sleep, REM onset latency at 159 minutes was prolonged.
RDI was 11 per hour, supline RDI 27, REM RDI 5.
Total apnea 2, total hypopnea 18. Hypopnea index 3.
Baseline O2 sat 96%, O2 de-saturation with sleep disordered breathing averaged 95% with NADIR of 86%.
Spontaneous arousal averaged 15 per hour.

CPAP Titration summary;
Sleep time 333 minutes, sleep latency 5.5, REM latency 136, sleep efficiency 91.3
# REMS 3, # stage shifts 36, awakenings 9
7 supine resp. events, AHI 1.3. No non-supine events, 0 REM events, O2 sat 93-94%

They have my CPAP setting 6, C-Flex setting 3.

I have the REMSTAR PR1 with C-flex for three weeks, it is ok. A little noisy, no data collection, minimal adjustability.
Had my follow up with the DR and she wrote me a prescription for the ResMed 9 Autoset which is what I wanted due to the features and noise level. DME says she needs to get approval from her boss! Asked me why I wanted it! Sound, varying pressure, EPR, data collection all features I fell will help me sleep. If I have to have a machine for 5 years I want one that will be flexible for me.

I’m tired and frustrated and understand where you are at.

Good luck!

[robysue]

A little background;
I've had sleep issues since a teenager. They have just gotten worse as I have gotten older, more stress for starters. I've always had a problem turning my mind off at night and am very sensitive to noise and light.
I've been on sleep medication for at least the last 10 years. Problem is I have built up a tolerance to the meds over the years, I'm on 12.5 mg ambien cr, 5 mg ambien, and 10 mg Clonazapam and these have a minimal effect . I am on a Thyroid medication, it’s a little low, have been checked for heavy metals in my tissues. DR’s have tried various meds, many for depression but they either had side effects or little effect on my sleep. My goal is to get off the sleep meds and get a decent nights sleep!
<lots delted>
I’m tired and frustrated and understand where you are at.

That's a lot of sleep meds. Good luck with your goal of getting off of them.

As you are adjusting to CPAP, please be open and honest and timely in your communication with your sleep doctor's office about both the sleep medicine you are currently taking and any problems you are having with leaks or other things either keeping you from getting to sleep in the first place or waking up after you intially fall asleep. Do NOT allow yourself to start lying in the bed for hours at a time fighting the machine and the insomnia trying unsucessfully to get to sleep.

By the way, the sleep latency and sleep efficiency numbers you posted for both the diagnostic test and the titration test (First sleep study showed: 88% efficiency, sleep onset after 12 minutes and CPAP Titration summary: sleep latency 5.5, sleep efficiency 91.3) are actually pretty decent, so the meds must be helping the quantity of your sleep even though there were plenty of other problems on the diagnostic night with sleep structure. On my three sleep studies, the sleep latencies have been like 57, 67, and 88 minutes and sleep efficiency has ranged from 28% (on my bi-level titration when the insomnia monster decided to show up in full glory) to 78% on my first titration study.

[jweeks]

At this point I am simply just frustrated, confused, uncertain if this was all worth it (the nightly struggles, mental anguish, and financial burden the diagnosis has brought), and starting to wonder if I even have sleep apnea at all. Obviously the one test a year ago confirms I do, but after struggling through treatment, you start to wonder if it was a misdiagnosis, maybe a second test is in order, maybe it's all just a big scam?

Hi,

Welcome to the forum.

I am a problem solver. When I see a problem, I like to solve it. In this case, about $2500 would answer the question in the form of a new sleep study. If insurance will not cover it, then call around and see what kind of a deal you can get. I went to a major cardiac center nearby, and I was able to negotiate for 47% off of the rack rate by taking a Sunday night slot and paying cash up front. If you have any doubts, that should answer the question for you.

It is not uncommon for patients to be abandoned by the system and left to drift. In fact, 50% of Apnea patients give up within the first year. When you look at the damage that this disease can do, and the risk of stroke, heart disease, and brain damage, it is far too serious to give up. If you have a family, don't do CPAP for yourself, do it for them. They need you. We need you.

If you have a data capable machine, please get the software, do a download, run a report, and post that report here. While no one can give you a medical opinion here, folks can and do comment on what might be going on, and that might give you what you need to solve the problems, or at least give you something to take back to your sleep doctor. It would not be unusual for some cluster of smaller problems to be ganging up on you, and it might be relatively easy to sort it out and get to a workable treatment. I know that in my case, the machine very nearly went through the window a few times. The folks here helped talk me down off the ledge. That was 2 years ago, and I cannot imagine living any other way now.

-john-

[Julie]

Just a last thought - your depression could well be due to apnea as it is common to feel depressed when not getting enough sleep!

[brianrus]

I feel for you and am in the same boat. Been on CPAP for three weeks and can’t say I've slept one night any better than before CPAP.

I think it is really tough, when you are a light sleeper to begin with, to add in this contraption that will disturb your already fragile sleep state. The only sleep med I've tried is melatonin, and it helps to at least get me asleep, but it doesn't necessarily keep me asleep, so I end up with the groggy hangover that lasts all morning. Even when I take a miniscule amount. I'm also very sensitive to caffeine, light, noise, and have a very time turning off my mind. If there's anything going on around me, a conversation, a song playing, a tv on, I have to listen to it and cannot sleep until it is gone. So I think we share that same frustration that we have trouble falling asleep and are unable to get deep into sleep enough to ignore those disturbances around us, which at the moment could be constant when a mask is strapped to our faces leaking air.

I am a problem solver. When I see a problem, I like to solve it. In this case, about $2500 would answer the question in the form of a new sleep study. If insurance will not cover it, then call around and see what kind of a deal you can get. I went to a major cardiac center nearby, and I was able to negotiate for 47% off of the rack rate by taking a Sunday night slot and paying cash up front. If you have any doubts, that should answer the question for you.

It is not uncommon for patients to be abandoned by the system and left to drift. In fact, 50% of Apnea patients give up within the first year. When you look at the damage that this disease can do, and the risk of stroke, heart disease, and brain damage, it is far too serious to give up. If you have a family, don't do CPAP for yourself, do it for them. They need you. We need you.

If you have a data capable machine, please get the software, do a download, run a report, and post that report here. While no one can give you a medical opinion here, folks can and do comment on what might be going on, and that might give you what you need to solve the problems, or at least give you something to take back to your sleep doctor. It would not be unusual for some cluster of smaller problems to be ganging up on you, and it might be relatively easy to sort it out and get to a workable treatment. I know that in my case, the machine very nearly went through the window a few times. The folks here helped talk me down off the ledge. That was 2 years ago, and I cannot imagine living any other way now.

I could use some problem solving! The troubleshooting of this problem is difficult due to too many variables going on at once! I am going to be getting a copy of my sleep studies from last year (the initial, the follow up with mask, and another with mask + next day) so I can have some more data for myself. I'm also going to push for a new sleep study, which should be possible since I switched insurance companies since my last one, meaning I can splurge a bit! I want that 2nd one to verify the findings of the 1st. I may try to get it done at a different facility for a 2nd opinion, but think it might actually be better to compare apples to apples, by using the same sleep center.

I just got the S9 AutoSet, mainly because it is data compatible, so I will definitely be looking at what comes out of that. I'm still unclear how to download the data from it, but even just the on screen data is very helpful. I was even thinking of setting the pressure to the lowest possible setting (4.0), use the machine all night, and then see what AHI it comes up with as sort of a psuedo-sleep study, even though it isn't even close to having the real thing.

Just a last thought - your depression could well be due to apnea as it is common to feel depressed when not getting enough sleep!

Trust me, I've gone through the whole chicken or egg (or even chicken & chicken!) argument over and over in my mind. Once I was diagnosed with sleep apnea, I actually ended up weening off the anti-depressants I was taking, just so I'd have a "clean slate" to work from. My thought all along has been, if I am finally getting good sleep, maybe the depression will no longer be an issue. So I've suffered from a pretty bad year of depression as a result. I've been on the verge of going back to medicating the depression for months (and actually took some back in the summer that disturbed my sleep even more), but since I still have not been able to achieve better sleep quality, I have been waiting to at least give that a chance. So I'm basically going to try everything I can to fix my sleep hygiene and continue to comply with the cpap treatment for at least a month, see where I'm at and then go from there. I know they're undoubtedly related, so I want to do everything in my power to avoid meds, until I know for sure that it's the only solution for the depression. It just takes time obviously, and in the meantime you suffer while you "experiment".

[robysue]

I feel for you and am in the same boat. Been on CPAP for three weeks and can’t say I've slept one night any better than before CPAP.

I think it is really tough, when you are a light sleeper to begin with, to add in this contraption that will disturb your already fragile sleep state. The only sleep med I've tried is melatonin, and it helps to at least get me asleep, but it doesn't necessarily keep me asleep, so I end up with the groggy hangover that lasts all morning. Even when I take a miniscule amount. I'm also very sensitive to caffeine, light, noise, and have a very time turning off my mind. If there's anything going on around me, a conversation, a song playing, a tv on, I have to listen to it and cannot sleep until it is gone. So I think we share that same frustration that we have trouble falling asleep and are unable to get deep into sleep enough to ignore those disturbances around us, which at the moment could be constant when a mask is strapped to our faces leaking air.

These are ALL reasons that paying really serious big time attention to ALL aspects of sleep hygiene are critically important parts of solving the overall problem of poor overall sleep. You've got a nasty chicken-and-egg cycle going on here: ... poor sleep makes it hard to adjust to CPAP, which further degrades the quality of your sleep, which makes it harder to adjust to CPAP, which makes further degrades the quality of your sleep, which makes it harder to adjust to CPAP, which further degrades the quality of your sleep ....

And as I said in my previous post, this vicious cycle cannot be broken without getting serious about dealing with the insomnia issues in which both brianrus's and gm60's case's seem to pre-date the start of CPAP treatment.

I truly empathize and sympathize with both brianrus and gm60 and all the other folks who find getting used to xPAP triggers insomnia-related issues. I am a life-long light sleeper with insomnia issues of my own who has had a very rough 3 1/2 months of adjusting to xPAP therapy. It took the first 2 1/2 months of xPAP therapy to properly address numerous xPAP issues of aerophagia, pressure-in-eye problems, tickle-in-throat problems, and extreme exhaustion beyond anything I ever faced with just insomnia, etc. But even after a switch to BiPAP that largely resolved my xPAP related issues, the insomnia remained (and still remains). At this point, I can honestly say that on a good day, I am now feeling no better than I felt before I started CPAP---i.e. I'm back to my old not-so-great, but not-so-bad self from last summer. I can make it through the day and I don't fall asleep during the day (unless I only get 3 1/2 hours of sleep), but I don't feel particularly good or refreshed or have much energy for really enjoying life on most days. Some days, I actually do enjoy things---such as skiing. But at this point, I know my remaining problems with energy levels and exhaustion stem from my old nemesis: insomnia, which alas, has grown much stronger during my long, protracted, and difficult adjustment period to xPAP.

Properly dealing with the insomnia is EXCEPTIONALLY HARD work: It takes AS MUCH or MORE self discipline (and time) to properly deal with the insomnia as it does to learn to sleep with the CPAP mask and machine. But I know that for me, I will only begin to reap the full benefits of xPAP therapy after I have indeed tamed the insomnia beast and he no longer sucks away all the gains that BiPAP is providing my body.

[brianrus]

I completely agree with you robysue. The worst part is that these are things I've probably known all along, but chose to ignore, hoping I could just throw on a mask and feel better. But it's true, without dealing with the insomnia and sleep hygiene issues, you'll never get to the point where the cpap can be truly effective.

So I've already started my climb towards conquering the insomnia monster by making some changes to get myself on the right track. I've only just begun since earlier in the week (with the weekdays being the easiest to comply) but it seems to already be paying dividends. Today is saturday, and I got up at my normal weekday time, worked out, doing laundry, etc. and I feel pretty damn great actually! Doesn't hurt to have that fresh start of a new year to motivate you! Here are the steps I'm taking:

1) Wake up at the same time every day (7am, though I'm going to move to 6am as I get settled in)
2) Have to be in my bedroom by 9pm, in bed by 10pm. I'm allowed to read in a chair in my bedroom, but nothing else.
3) Removed the TV from the bedroom, no laptop in bed, no reading in bed.
4) Started back up on my p90x workout routine as of Tue.

I've already had the struggles of coming home from work not wanting to workout, but did anyways and felt great. I was asked repeatedly to go do something "out" fri night, meaning I wouldn't be in bed until past 1am, but avoided it to keep to the bed time routine. (already got asked to go out to watch football tonight, and it was only 10:30am on sat! But seeing as the game won't be over until almost midnight, I declined. I'll DVR it and watch in the AM.) The watching TV in bed, laptop or reading in bed will be easy to remedy since I rarely did that anyways, except maybe the reading which will be part of my pre-bed routine to wind down and keep my mind clear. Using the chair instead of lying in bed to read will be key. I know I can make sure to not just lie in bed when not actually sleeping. And I know I will be able to maintain the exercise routine (though I'd like to move it to mornings at 6am before work rather than after.) The hardest thing will be the pressure, both from my peers and my own desires, to go out late on weekend nights. It's been a part of my life for the last 15 years or so (since college), so that will be a very hard habit to break. I know that after a month or so on this routine, I can start adding back in some late nights, as long as I make sure to wake up at the same time the next day, but for the most part, I will have to cut that out of my life. Hopefully I can find things to do that start/end earlier in the day/night, so that I can keep to my schedule.

I don't want to completely lose those fun times in my life, even just late nights spending time with family, but I have to come to the realization that I'm not able to be quite as free-going and flexible as I think I can be with sleep. And hopefully it'll just mean I'm a lot more fun during the daylight hours from this point on, rather than some moody, sleepy, slouch all day who can't "wake up" until after 8pm!

Thanks again for the guidance and advice! Wish me luck!

[robysue]

brianrus,

Sounds like you really are making some very positive changes in regards to sleep hygiene. You might want to also pick up Sound Sleep, Sound Mind: 7 Keys to Sleeping through the Night by Barry Krakow. It was recommended by other posters on a thread I started (The insomnia monster raises its head again and again ....). I've picked it up and and started it; it's been an interesting read.

And working on the insomnia while you can still successfully sleep from 10 pm until 7 am is the time to do it! I don't have the luxury of going to bed at 10 pm these days because my insomnia is too severe. I know how ironic that sounds---just keep reading for the full irony to kick in

Here's food for thought to keep you motivated to keep your current bedtime and wake up times in place regardless of what attractive entertainment offers get tossed your way. Over the years my own sleep patterns have gotten so badly disrupted that I seem to be physically incapable of sleeping more than 4 to 6 hours at a time on the vast majority of nights. Hence a major goal of the regime my sleep doctor's PA has put me on for establishing regular wake up and bedtimes is to teach my 52 year old body how to sleep soundly for six hours at one stretch and to consolidate my sleep and REM cycles into something that resembles "normal". This is what my current regime looks like:

• Because of my spring semester as a college professor, I was allowed to choose my wake up time to be 7:30 AM. I must get up at 7:30 seven days a week regardless of how much or how little sleep I get during the night.
  
  My bedtime was then determined by the PA to be 1:30 AM---6 hours earlier. I am NOT allowed to go to bed any EARLIER than 1:30 AM. I must be sleepy when I go to bed. If I have not fallen asleep within 30 minutes of going to bed, I must get out of bed and go into a different room and do something quiet and non-work related until I feel sleepy enough to try again.
  
  If I wake up during the night and cannot fall back asleep withing 30 minutes, I am to get out of bed and go into a different room and do something quiet until I get sleepy enough to try again.
  
  I have to keep a sleep log of when I go to bed, when I get up, how many times I wake up, and how long I think I sleep each night.
  
  The "30 minutes" rules are NOT based on watching a clock. The clock in my bedroom cannot be visible from my side of the bed. The "30 minutes" rules are based on when my brain thinks I've been trying to get to sleep for "30 minutes" without success. Accuracy of that "30 minutes" is unimportant. The important thing is that if my brain believes that I've spent a half an hour unsucessfully trying to get to sleep, it's time to get out of bed, go to a different room, and do something else until I get sleepy enough to try again.
  
  If I get mad at the BiPAP for any reason when I'm in bed, I have to get up and leave the bedroom until I'm settled down and am calm enough to come back and try again.
  
  No naps during the day under any circumstances.
  
  No caffeine after 10AM.
  
  If I have one or two really bad nights, then I should take Ambien the next night. I get to define "really bad night." This allows me to be charge of how many sleepless nights in a row I have to endure before getting a decent Ambien-enhanced night's sleep.

So whenever you need an extra boost of motivation to say no to a late night invite when you know it's really better for your health to go home and go to bed and go to sleep, just remember that the treatment for really, really BAD insomnia is to limit time in bed at BOTH ends of the night: I can't go to bed EARLY and I can't get up LATE just because I feel tired.

Best of luck in getting the sleep hygiene under control while your insomnia is not yet severe. You're on the right track and if you can maintain your regular bedtime and wake up time schedules 7 days a week along with the other changes you've made, I think in several weeks or months you WILL start to see real improvement!