Newbie. Sleep is much worse with CPAP.

[owenkiri]

Hello all, I received my first CPAP two months ago, a REMStar Auto A-flex with a REMStar Heated Humidifier. The mask I use is a Zest Nasal Mask, then I changed to a Forma Full Face Mask.

When I first tried it, my sleep was no different than how it was before any kind of treatment. Then two nights later, my sleep quality declined such that when I woke up, I felt like I haven't slept at all. So then I would go back to sleep without the CPAP because I felt so tired. This means that I would sleep for about 18 hours a day. Needless to say, this is very disruptive for my day life. So I tried using different a-flex and humidifier settings, but to no avail. After 9 days of continuous use, I stopped using it and scheduled an appointment with my doctor. Since then, I've only used it once or twice a week up until now.

He said the problem was that I needed to get used to the CPAP, which takes a few months. The data recorded on my SD card showed a lower AHI compared to my baseline (found in the first sleep study), yet I feel the sleep quality is much worse when sleeping with the CPAP.

In another appointment, he decided to check if my mask was fitted properly, so I came in and he showed me how to do it. I asked him if there was a different treatment option in case this didn't work, and he suggested surgery to modify my mouth and nasal structures to maximize airflow, but not until I was older, because my cartilage hasn't solidified into bone yet. With the properly fitted mask, I still had no improvement.

I scheduled another appointment again because he offered to give me a different mask. So now I have a full face mask instead of a nasal mask. I asked him if it was possible that I had another disease because I also sleep at random times and more than once a day (for example: two 4 hr sections, and a 2 hr section). Note that I already told him about this in our very first meeting. He took it a bit too personally and said some things which basically called me an idiot. So I just tried the new mask, but it didn't help at all.

So now I'm thinking about withdrawing from school until I get this sorted out. This has certainly caused more problems than it solved. I'm also considering looking for a different doctor.

What troubles me the most is that he didn't inform me of this problem before prescribing me the CPAP. Is there really an adjustment period? How long was yours? How poor was your sleep during that time? DO you have any advice to give me?

I thank you all in advance.

[RandyJ]

Welcome to the Forum. Here you will find the help you are looking for; there are many wise people here who can help you with your issues. You will find support, a bit of hand holding, and lots of good advice.

Many have had a hard time getting used to cpap; you are not alone or unique in this.

If you haven't yet done so, I would recommend you read the threads at the top of the main page, such as "Especially for the newly diagnosed - dealing with change" and "Where a cpap newbie should start."

Also, search for "robysue"; there are links in her signature to her blog that offer great insights into the struggles many new to cpap encounter. I especially recommend the section "Taming the cpap induced insomnia monster" and the subsection there on good sleep hygiene.

Educating yourself about how to proceed with getting good therapy is the first step. You'll make it.

[Pugsy]

Welcome to the forum.

First I think you probably have chosen the wrong equipment in your profile. Easy to do be cause it is listed in the choices worded differently than you see on your machine. Look at your machine you have showing...does your machine look like your choice? Probably not. That Remstar Auto has not been supplied since pre 2007.
Your machine is likely this one...Philips Respironics Remstar System One Auto with AFlex and in the drop down menu choices it is shown as PR System One Remstar Auto CPAP with AFlex. Same with your humidifier...look for PR System One Heated Humidifier. All the PR System One choices are all together in one section in the drop down menu.
So let's fix that part so people will know what you are using.

There is software easily available for PR System One users. I have explained the options here with some examples.
viewtopic.php?f=1&t=64906&st=0&sk=t&sd= ... re+options
With software we can see some things that might need improving to help you adjust easier.

Some people do have a harder time adjusting to sleeping with this stuff stuck to our face. Some people slap the mask on and hit the road running with no problems at all. While it does take some time for some people that have a hard time...you won't ever adjust to it if you use the mask and machine one or two nights a week for a short period of time.

So what do we do? Let's figure out what is causing your problems.
Do you know your pressure settings? What are they?
Do you have the provider/clinical manual for your machine? Not the user manual but the provider manual.
If not, I have it in pdf format. If you will send me a private message with your private email address I will send it to you as an attachment. We can't do attachments here at the forum message system.

SleepyHead software is the quickest and easiest software choice to use.
http://sourceforge.net/projects/sleepyhead/

Can you be more specific about what is causing your sleep problems when using the machine?
Discomfort, pain, leaks, just wake up often and can't get back to sleep? Sleep but feel horrible?

With more specific information we can help you sort through issues so that you can get some more restorative sleep using the machine.

[robysue]

owenkiri,

Welcome to the forum. And I also bid you a sad welcome into the club of folks who feel worse (sometimes substantially worse) on CPAP before they start to feel better. More on that in a bit.

First to piggy-back on pugsy's comments. We need you to double check which machine you really have. The naming of the REMstars is very confusing. You say you have an APAP, but the one you show is an older one. So look at these pictures.

Does your machine look like this? If so, then you've selected the right machine, but your DME set you up with a very, very old machine.

Or does your machine look like this? or this? If so, then the correct machine to select is the Resprionics REMStar M-series Auto with A-Flex and your DME set you up with an old machine.

Or does your machine look like this? or this? If so then the machine to select is the PR System One Auto CPAP with A-Flex and your DME set you up with the current up-to-date Auto CPAP (APAP) made by Philips Resprionics.

Next, it sounds as though your doctor has not done a very good job of explaining what OSA is, what your specific test results showed, and what to expect from CPAP. (You are not alone in this: Many of us are less than thrilled with how our sleep docs behave towards us.) In your case, I think that you do need to see the test results and have them explained very carefully to you. Maybe a follow up with a PA or nurse practioner in your sleep doc's office would help. In any case, you should request that the doc's office send you the full sleep report---both the doc's dictated interpretation of the report AND the summary data with graphs. Having this data in hand will help you come to grips with the reality of your diagnosis.

Next, you write:

I asked him if it was possible that I had another disease because I also sleep at random times and more than once a day (for example: two 4 hr sections, and a 2 hr section). Note that I already told him about this in our very first meeting.

It sounds as though you think you might have narcolepsy. But the thing is: These "fall asleep at random times and more than once a day" can be a really strong symptom of OSA. Now some people do have both OSA and narcolepsy, but the thing is the test for narcolepsy (the daytime MSLT test) can only be done following a NPSG (sleep study) that shows that the person got a reasonably normal, full night of sleep. And your diagnostic NPSG showed that you didn't get reasonably normal sleep at night without a PAP. Indeed, your diagnostic NPSG showed that your upper airway has a tendency to repeatedly collapse when you are asleep and that this leads to real, significant nighttime breathing problems. Now, if you continue to fall asleep at random times during the daytime after you are using the CPAP all night long, every night for a period of several months, then the doc may very well be willing to order another sleep test---one with a CPAP in place---that can continue to the daytime MSLT if your CPAP-aided sleep is reasonably normal and close to a full night of sleep.

Next, you write:

When I first tried it, my sleep was no different than how it was before any kind of treatment. Then two nights later, my sleep quality declined such that when I woke up, I felt like I haven't slept at all.
...
After 9 days of continuous use, I stopped using it and scheduled an appointment with my doctor. Since then, I've only used it once or twice a week up until now.
...
He [the doctor] said the problem was that I needed to get used to the CPAP, which takes a few months. The data recorded on my SD card showed a lower AHI compared to my baseline (found in the first sleep study), yet I feel the sleep quality is much worse when sleeping with the CPAP.

Nine days of continuous use is not enough for most beginners to notice any positive difference in the quality of their sleep. And MANY, MANY new CPAPers feel that the subjective quality of their sleep deteriorates very rapidly right after starting CPAP. After all, there's a lot to get used to in order to comfortably sleep with a six foot hose attached to your nose every single night. Adjusting to CPAP is a process: A lucky few take to it right away and feel better almost immediately. For most folks, it takes somewhere between a couple of weeks and a couple of months of using the CPAP every night, all night long before they start to feel their sleep is returning to normal and they start to notice positive changes in how they feel on a day-to-day basis. And the positive changes can be subtle enough that they are easy to miss.

Unfortunately some of us are unlucky enough to have extended adjustment periods of several months to a year or more: For me? I have worn the mask every single night since I first got my CPAP some 14 1/2 months ago, and I've worn the mask all night long on all but maybe two or three of those nights. The first four months were hell. But by the end of month six I was noticing that I was no longer waking up with pain in my hands and feet every morning. And that I was occasionally waking up feeling pretty normal and almost refreshed and somewhat rested. By the end of my ninth month of therapy, the number of days that I was waking up feeling almost refreshed or refreshed (and headache free) had started to out number the days that I woke up feeling like I'd fought the machine all night. Now, I'm about 14 1/2 months into therapy. Most mornings I wake up pretty good---better than I felt on a typical day before I started CPAP and much, much better than I did a year ago in my early adjustment days. I still have my problems: I can't seem to get to bed much earlier than 1:30 without it causing insomnia problems and I seldom get more than 6 1/2 hours of sleep. But the sleep that I now get is of sufficiently high quality that I once again feel like I'm alive.

So your doc is right: It does take time to adjust to CPAP. And it can take several months before your adjustment is complete.

So then I would go back to sleep without the CPAP because I felt so tired. This means that I would sleep for about 18 hours a day. Needless to say, this is very disruptive for my day life. So I tried using different a-flex and humidifier settings, but to no avail. After 9 days of continuous use, I stopped using it and scheduled an appointment with my doctor. Since then, I've only used it once or twice a week up until now.

Two comments:

First---taking the mask off and sleeping with it only part of the night tends to prolong the adjustment period.

Second---trying to sleep with the mask only one or two days a week puts you into a cycle of NEVER fully adjusting to the mask. Each and every time you mask up, you are in reality starting right back at Square One: The First Night of CPAP as far as your mind and body's reactions to CPAP are concerned.

You see: The not so secret thing about CPAP therapy is that it is NOT a part-time therapy: You need to use the mask EVERY time you sleep for the ENTIRE time you are asleep. And it's not that easy to do at the start: There's a pretty steep learning curve involved. But the more often you allow yourself to consciously fall asleep without the mask on, the more your unconscious mind, your conscious mind, and your body remain stubbornly convinced that the mask is not really necessary. And until all three of them have come to accept the new reality that Time to Sleep = Time to Mask Up, you'll remain trapped in the hell of not being fully adjusted to therapy. And part of that hell is the constant awareness of the mask and all its discomforts for you. The only way out of the conundrum is to suck it up and put the mask on EVERY night when you go to bed. And to put the mask back on after EVERY wake up in the middle of the night before you go back to sleep. If you can't get back to sleep with the mask on, then it's time to get out of bed and do something soothing and calming and sleep inducing until you are both calm enough and sleepy enough to go back and mask up before returning to bed. Yes, it's hard to do this at the beginning. But it's the only way to end the constant chatter from your unconscious and conscious minds that the mask is not really necessary and that if you just take it off everything will be so much better for the rest of the night.

So I tried using different a-flex and humidifier settings, but to no avail.

How many different settings did you use in the 9 days of continuous use? Do you make changes almost every time you try to use the machine on your now "I use it once or twice a week" plan? Constantly playing around with the settings can lead to more discomfort instead of less. As a general rule, you should change one thing at a time and give it several nights in a row at the new setting before you decide something is not working.

DO you have any advice to give me?

1) Sleep with the mask EVERY night---not just one or two nights out of every seven.

2) Do NOT consciously take the mask off so that you can "finally get some sleep." See my Taming the CPAP-induced Insomnia Monster for lots of ideas on what to do when you feel like you can't sleep with the mask and you know you shouldn't just sleep without the mask.

3) Change only one thing at a time: Don't change the A-flex setting AND the humidity setting AND the min pressure setting all at the same time: If you feel better, you don't know which one was the critical one to change. If you feel worse, you don't know which one caused the new problems.

4) Make small changes and leave them in place for several days (at least three or four, preferably a week) before deciding whether the change worked as planned.

[turbosnore]

I was one of those who got used to CPAP (actually APAP) very slowly.
For me it took about half a year.

[owenkiri]

@RandyJ: Thanks, Randy. Those were quite informative, but I didn't really find what I was looking for. My main problem isn't really sleep hygiene or insomnia. I can go to sleep and stay asleep for 8-9 hours, but I'm wondering why I'm feeling very fatigued after using the CPAP.
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@Pusgy: Thanks for pointing that out. I knew I chose the wrong one, so I chose the one worded closest to what's on my CPAP. I didn't make the connection that "PR" stood for "Philips Respironics."

I downloaded the program and just ordered a card reader, so it'll take some time before I can post any data.

My pressure setting is 8-12 cm H2O with the ramp starting off at 4 cm H2O over 30 minutes. Those numbers were chosen by my doctor, except the the duration, which was by me. I only have a user manual. However, I'm renting the machine and one of their guys just told me how to use and wash it.

I don't know what's causing my problems. The main problem is that I sleep longer (8-9hrs with CPAP) and have less awakenings than I normally do, but when I wake up, I feel like I haven't slept at all. I feel so tired, I can't get up. Even making some very strong coffee the night before and drinking it in the morning can't get me out. My doctor gave me some Nuvigil samples, but that kept me up for about 2 hrs before feeling sleepy again. So I'm forced to go back to sleep without the CPAP for another 9 or so hours. Also, when I wake up, there's a huge headache deep inside my head. The doctor read my SD card and said the leakage was acceptable.

I have little trouble going to and staying asleep, not much of a hassle. But the air is a bit dry and cold. One time, I put it on with no intention of going to sleep just to see what happens, I get that same headache mentioned above after about 2 hours. Putting the CPAP under the blanket and hose running up under my sweater reduces this discomfort, but it's still there. I take allergy medication (pill and nasal spray) because the doctor says it widens nasal air passageways and reduces the chance of airway collapse.

Another minor problem is that when I have it on after a while (say, more than an hour) grease from my skin accumulates around the area where the mask touches my skin. This makes it easier to slide off and leak from the sides of my nose because there's less friction. I fixed it by tightening the mask, but now it's a bit tighter than what my doctor showed me in his office, and just a tad more uncomfortable than before. I'm wondering if there might be another way to remedy this.

My nose gets runny after taking off the CPAP. Again, this isn't much of the problem, but it would be nice to lessen or eliminate it.
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@robysue: Yep, my machine is the last one. Now that I think of it, I no longer use the face mask because it's designed for squarer faces. I only use the nasal mask now. I should go change that.

What specific things should I be looking/asking for when I have my doctor explain it to me again? When he went over it, he used very technical terms and didn't let me speak until the very end, after I forgot everything he said and what I wanted to ask.

I don't think I have narcolepsy. I feel sleepy at random times. I want to sleep at random times, but I have some control over toughing it out until I find a more appropriate place to sleep. Sorry, I should've made that clearer. I think it's more of a circadian rhythm problem. But then again, I'm no doctor. When I asked my doctor, he paused and continued talking as if I hadn't said anything. I guess I should be more aggressive with these matters. I don't he even considered that possibility because he never mentioned a possibility of a MSLT. Yeah, both the diagnostic and titration study showed less than 5 hours of sleep each, both with Lunesta at the doctor's insistence. But I did tell him that I usually don't sleep at the same time as everyone else. Maybe I should ask for a daytime sleep study? This is very frustrating because I originally came in because I sleep at random times. I had very little concern over my sleep quality by itself and my snoring. (I don't snore that much anyway.) But I guess this means that he is tackling this using probability: curing the most prevalent sleep disorders first.

Several months is a really long time. If it didn't make me so sleepy upon wakening, I would be compliant. I feel so sleepy I'm forced to go back to sleep another 9 hours, this time without the CPAP. It pretty much ruins my day life (school, work, etc.). The other problems aren't so bad. I've already tried 150mg of Nuvigil and increasing doses of coffee (at one point, strong enough to give me really bad diarrhea). Do you have any advice for waking up and staying up? For easing and/or shortening the adjustment period?

In some other threads, I noticed changing the mask made a huge difference. While the mask I have now is sufficiently comfortable, I can't say for sure that there isn't an even more comfortable one. How should I go about trying out different ones (randomly select one?) and how long should I test it before deciding to if it's right or to move onto another mask? How many should I try before settling down? Will changing any other components make it easier?

I changed one thing at a time and pretended to go to sleep for about 10 minutes. Once it felt right, I slept with the new settings. I usually sleep with it two nights a week: one with old settings, the other with the new settings. Whichever works better becomes next week's "old" setting. After a month, one set of settings was consistently better than any others, so I stuck with it until now. However, I am willing to try out your method and sleep with the CPAP everyday.

I don't have any sort of CPAP-induced insomnia. I sleep longer and have less interruptions than I normally do. The main problem is just me feeling very tired afterwards.

I'll try making small adjustments and leaving them for a few days and sleep with the CPAP every night.

One last question: In your opinion, are the benefits of CPAP worth doing something such as taking a break from school and work for several months until you begin to reap the benefits? (Again, I'd like to say that before seeing a sleep doctor my main concern was the timing and fragmentation of my sleep. Sleep quality itself wasn't much of a problem. So my situation is slightly different from yours. There's no use treating a relatively asymptomatic, non-communicable disease if the patient has to suffer so much.) I'm asking this because I'm considering this option, but I'm still open to other suggestions.

Lastly, but certainly not least, thank you, all of you, for taking time out of your busy schedules to help a stranger in need!

[owenkiri]

@RandyJ: Thanks, Randy. Those were quite informative, but I didn't really find what I was looking for. My main problem isn't really sleep hygiene or insomnia. I can go to sleep and stay asleep for 8-9 hours, but I'm wondering why I'm feeling very fatigued after using the CPAP.
----------------------------------------------------------------------------------------------------------
@Pusgy: Thanks for pointing that out. I knew I chose the wrong one, so I chose the one worded closest to what's on my CPAP. I didn't make the connection that "PR" stood for "Philips Respironics."

I downloaded the program and just ordered a card reader, so it'll take some time before I can post any data.

My pressure setting is 8-12 cm H2O with the ramp starting off at 4 cm H2O over 30 minutes. Those numbers were chosen by my doctor, except the the duration, which was by me. I only have a user manual. However, I'm renting the machine and one of their guys just told me how to use and wash it.

I don't know what's causing my problems. The main problem is that I sleep longer (8-9hrs with CPAP) and have less awakenings than I normally do, but when I wake up, I feel like I haven't slept at all. I feel so tired, I can't get up. Even making some very strong coffee the night before and drinking it in the morning can't get me out. My doctor gave me some Nuvigil samples, but that kept me up for about 2 hrs before feeling sleepy again. So I'm forced to go back to sleep without the CPAP for another 9 or so hours. Also, when I wake up, there's a huge headache deep inside my head. The doctor read my SD card and said the leakage was acceptable.

I have little trouble going to and staying asleep, not much of a hassle. But the air is a bit dry and cold. One time, I put it on with no intention of going to sleep just to see what happens, I get that same headache mentioned above after about 2 hours. Putting the CPAP under the blanket and hose running up under my sweater reduces this discomfort, but it's still there. I take allergy medication (pill and nasal spray) because the doctor says it widens nasal air passageways and reduces the chance of airway collapse.

Another minor problem is that when I have it on after a while (say, more than an hour) grease from my skin accumulates around the area where the mask touches my skin. This makes it easier to slide off and leak from the sides of my nose because there's less friction. I fixed it by tightening the mask, but now it's a bit tighter than what my doctor showed me in his office, and just a tad more uncomfortable than before. I'm wondering if there might be another way to remedy this.

My nose gets runny after taking off the CPAP. Again, this isn't much of the problem, but it would be nice to lessen or eliminate it.
------------------------------------------------------------------------------------------------
@robysue: Yep, my machine is the last one. Now that I think of it, I no longer use the face mask because it's designed for squarer faces. I only use the nasal mask now. I should go change that.

What specific things should I be looking/asking for when I have my doctor explain it to me again? When he went over it, he used very technical terms and didn't let me speak until the very end, after I forgot everything he said and what I wanted to ask.

I don't think I have narcolepsy. I feel sleepy at random times. I want to sleep at random times, but I have some control over toughing it out until I find a more appropriate place to sleep. Sorry, I should've made that clearer. I think it's more of a circadian rhythm problem. But then again, I'm no doctor. When I asked my doctor, he paused and continued talking as if I hadn't said anything. I guess I should be more aggressive with these matters. I don't he even considered that possibility because he never mentioned a possibility of a MSLT. Yeah, both the diagnostic and titration study showed less than 5 hours of sleep each, both with Lunesta at the doctor's insistence. But I did tell him that I usually don't sleep at the same time as everyone else. Maybe I should ask for a daytime sleep study? This is very frustrating because I originally came in because I sleep at random times. I had very little concern over my sleep quality by itself and my snoring. (I don't snore that much anyway.) But I guess this means that he is tackling this using probability: curing the most prevalent sleep disorders first.

Several months is a really long time. If it didn't make me so sleepy upon wakening, I would be compliant. I feel so sleepy I'm forced to go back to sleep another 9 hours, this time without the CPAP. It pretty much ruins my day life (school, work, etc.). The other problems aren't so bad. I've already tried 150mg of Nuvigil and increasing doses of coffee (at one point, strong enough to give me really bad diarrhea). Do you have any advice for waking up and staying up? For easing and/or shortening the adjustment period?

In some other threads, I noticed changing the mask made a huge difference. While the mask I have now is sufficiently comfortable, I can't say for sure that there isn't an even more comfortable one. How should I go about trying out different ones (randomly select one?) and how long should I test it before deciding to if it's right or to move onto another mask? How many should I try before settling down? Will changing any other components make it easier?

I changed one thing at a time and pretended to go to sleep for about 10 minutes. Once it felt right, I slept with the new settings. I usually sleep with it two nights a week: one with old settings, the other with the new settings. Whichever works better becomes next week's "old" setting. After a month, one set of settings was consistently better than any others, so I stuck with it until now. However, I am willing to try out your method and sleep with the CPAP everyday.

I don't have any sort of CPAP-induced insomnia. I sleep longer and have less interruptions than I normally do. The main problem is just me feeling very tired afterwards.

I'll try making small adjustments and leaving them for a few days and sleep with the CPAP every night.

One last question: In your opinion, are the benefits of CPAP worth doing something such as taking a break from school and work for several months until you begin to reap the benefits? (Again, I'd like to say that before seeing a sleep doctor my main concern was the timing and fragmentation of my sleep. Sleep quality itself wasn't much of a problem. So my situation is slightly different from yours. There's no use treating a relatively asymptomatic, non-communicable disease if the patient has to suffer so much.) I'm asking this because I'm considering this option, but I'm still open to other suggestions.

Lastly, but certainly not least, thank you, all of you, for taking time out of your busy schedules to help a stranger in need!

[Janknitz]

If you can use the machine for 8 or 9 hour stretches but you wake still feeling very tired you could be having a combination of issues:

1. Your therapy is not effective because the pressure settings are not yet optimized to treat your apnea. Your doctor's response that your AHI was improved is pretty vague. With the software you'll be able to see for yourself. But meanwhile you can get a general idea by looking on the screen data as long as you have not been locked out of that setting.

2. Your mask may be leaking too much to get effective treatment. Again, your doctor's statement was vague. You'll be able to look at the data and see for yourself.

BTW: why did you have to "order" a card reader? SD card readers can be found anywhere under $10, probably even your school bookstore or the electronics department of any store (Target, Walmart, Kmart, CVS, Walgreens, etc).

3. You have a big sleep deficit to pay off and once you are getting quality treated sleep you may find yourself more tired because your body is craving that deep, restorative sleep.

Finally consider that if you are only using your machine 2 nights a week you are causing ORGAN DAMAGE to yourself 5 nights a week plus the additional hours you are sleeping without CPAP on those two days. That's like taking a blood Pressure pill only two days a week while you constantly eat tons of sodium each and every day. So just how well do you expect your blood pressure to improve?? Makes no logical sense, right? Why do you think CPAP will be different?

[BlackSpinner]

Two weeks is no where near enough to get used to it or to over come something referred to as "sleep debt" It can take up a month for your brain to allow you to sleep deeply and comfortably.

If you broke your leg and was in a cast you wouldn't expect to be jogging up and down stairs with it the first few days now would you.

Go to your school admin offices, ask to speak to a counsellor and work at adjusting your schedule so you can spend a week or two just sleeping with your cpap for as many hours a day as you need to. You have a medical issue and they will help you deal with it. That is their job. They should also be able to provide you life style counselling to deal with the emotional effects of the change.

[Pugsy]

OP needs card reader/adapter because no SD slot in computer. So we wait on software reports.
In the meantime APAP is set to 8 min and 12 max. What is the humidifier set at? That might explain some of the runny nose. Some people need more humidity and some people need less...so might alter setting on humidifier one way or the other to see if that helps.

Headaches and such? We can't even begin to expect them to go away until you can sleep with the machine all night long and every single night AND make sure that the therapy is even optimal (that's where the software helps). So a lot of things have to fall into place. Then to top it all off...even if everything is optimal, sometimes it simply takes a long time to see the improvements we want. We read about people having these overnight miracles where they feel like a completely new person but those people are just darn lucky. Most of us it takes a while to see even a slight improvement. I turn pea green with envy every time I read about one of those miracles.

Mask and oily face and leaks? Think about adding a mask liner to help or even a different mask type.

[robysue]

@RandyJ: Thanks, Randy. Those were quite informative, but I didn't really find what I was looking for. My main problem isn't really sleep hygiene or insomnia. I can go to sleep and stay asleep for 8-9 hours, but I'm wondering why I'm feeling very fatigued after using the CPAP.

As others have pointed out, for some of us, making up the sleep debt is a very real part of adjustment. However, you also are not using the machine every night, all night long. And so there's a lot of two steps forward (nights with CPAP) and five steps backards (nights without CPAP) on a weekly basis. CPAP is simply not a part time therapy: In order to fully adjust and eventually start to feel some positive benefits, you actually have to sleep with the machine 100% of the time. As long as you are sleeping far more without the machine than you are with the machine, your body and mind will continue to fight sleeping with the machine. And until both your conscious and unconscious minds genuinely accept sleeping with the machine as the new reality, it will be hard to fully relax and get into high quality, deep sleep.

I don't know what's causing my problems. The main problem is that I sleep longer (8-9hrs with CPAP) and have less awakenings than I normally do, but when I wake up, I feel like I haven't slept at all. I feel so tired, I can't get up. Even making some very strong coffee the night before and drinking it in the morning can't get me out. My doctor gave me some Nuvigil samples, but that kept me up for about 2 hrs before feeling sleepy again. So I'm forced to go back to sleep without the CPAP for another 9 or so hours.

Ok, something doesn't add up here: Are you really saying that this is what happens when you use the CPAP:

• You sleep soundly for 8--9 hours WITH the CPAP on in the sense of fewer awakenings. As in you go to sleep WITH the CPAP at something like 11:00pm and wake up at 7:00 or 8:00 and feel like you haven't slept much and can't manage to get up. So you take the mask off and then return to sleep and sleep another 8--9 hours. In other words, you wind up "waking up" around 3:00--5:00 in the afternoon. And then you can get up and stay up for how long? In other words, can you give us an idea of your typical 24-hour day: What time is bedtime for the night? What time is "wake-up" time supposed to be? What time do you actually manage to drag yourself out of bed by? How many hours (in a 24-hour period) are you awake?

I do remember when I was a newbie: After sleeping with the mask for 7--9 hours, I would often wake up feeling as though I'd been running a marathon in my sleep---and that left me severely exhausted. And it was difficult to pry myself out of bed. And I had to give up morning coffee due to burgeoning insomnia.

So keep that in mind as I make these suggestions:

• Crazy as it sounds, you might want to give up the coffee. Or at least give up the coffee after noon. Caffeine can severely and adversely affect the quality of our sleep for some of us---even if it's been hours and hours since we last had any.
• You absolutely have to break that habit of sleeping 8 or 9 hours without the mask. Every time you sleep without the mask you are allowing the apnea to continue to damage your body. And you're also undermining the effort to actually get used to the mask as well. And the only way to break this habit is too force yourself not to do it: If you really can't get up after 8 or 9 hours of sleeping with the mask and you want to go back to sleep, then you need to go back to sleep WITH the mask on. Every single time. Will it be hard? Yes. Will you manage to get through it? Yes. With a some help from your friends---both your real life ones and the ones you have here at cpaptalk.

Also, when I wake up, there's a huge headache deep inside my head.

Headache deep inside your head? Could be the mask is too tight. Or that your body is still being super-vigilant about sleeping with the mask on your nose and you're simply not getting into enough Stage 3 sleep. Or it could be that you are still having too many apneas and that's a CO2 headache. I know that this is all still very, very new to you: But can you at least tell us what the machine's LCD says the 7-day AHI is?

The doctor read my SD card and said the leakage was acceptable.

You need to look at the data yourself. An "acceptable leak rate" as far as therapy goes does not automatically mean leakage is not a problem: Many of us are disturbed by small leaks that are not enough to affect therapy, but are enough to affect the quality of our sleep. All it takes is a small, but irritating leak to keep some of us tossing and turning and not feeling fully rested in the morning.

I have little trouble going to and staying asleep, not much of a hassle. But the air is a bit dry and cold. One time, I put it on with no intention of going to sleep just to see what happens, I get that same headache mentioned above after about 2 hours. Putting the CPAP under the blanket and hose running up under my sweater reduces this discomfort, but it's still there. I take allergy medication (pill and nasal spray) because the doctor says it widens nasal air passageways and reduces the chance of airway collapse.

The plot thickens: What humidity setting are you using? If it's not set to 5, turn the humidity setting up all the way and see if that helps. In addition to running the hose under the covers, get yourself a hose snuggly. It will insulate the hose so the warmed air from the humidifier doesn't get so cold. You could also consider getting a heated hose. The Aussie heated hoses do cost $$, but may be worth it. Or you could see if the DME would be willing to switch your PR System One Pro for a Resmed S9 Elite. That way you could use the heated ClimateLine hose Resmed makes for the S9. If your doc thinks you need the heated hose, that may make it easier.

[JointPain]

As all the others have said, rule number 1 is to never sleep or nap without your CPAP.

The main problem is that I sleep longer (8-9hrs with CPAP) and have less awakenings than I normally do, but when I wake up, I feel like I haven't slept at all. I feel so tired, I can't get up.

That is pretty normal for new users. Either get up or sleep some more with the CPAP. When I first restarted CPAP I had some days like that. I just got up anyway, but I did stuff pretty slowly.

So I'm forced to go back to sleep without the CPAP for another 9 or so hours.

You may really, really want to, but no one is forcing you. Do not give in. Either get up or mask up. Remember rule number 1.

Also, when I wake up, there's a huge headache deep inside my head. The doctor read my SD card and said the leakage was acceptable.

It could be lots of things: mask too tight, air too cold, humidification not right, pressure range not right, mouth breathing, subconscious mind not letting you get a deep sleep, etc. I think you're on the right track gradually experimenting with little changes. Eventually you'll find out what works for you. In the meantime, the headaches may be a pain, but your sleep apnea is no longer destroying your body and it will begin healing. Take pain relievers for the headaches.

Another minor problem is that when I have it on after a while (say, more than an hour) grease from my skin accumulates around the area where the mask touches my skin. This makes it easier to slide off and leak from the sides of my nose because there's less friction. I fixed it by tightening the mask, but now it's a bit tighter than what my doctor showed me in his office, and just a tad more uncomfortable than before. I'm wondering if there might be another way to remedy this.

Overtight mask could cause headaches or leakage. Try a mask liner. You can make a temporary one by cutting up an old t-shirt.

Can you test your mask for leaks at treatment pressure? Your starting pressure is very low (I can't breathe comfortably at 4) and have a long ramp, so you might be asleep before you get to treatment pressure.

My nose gets runny after taking off the CPAP. Again, this isn't much of the problem, but it would be nice to lessen or eliminate it.

Try changing your humidification level. I had to increase mine to get rid of this, but it probably works the other way in some people.

In some other threads, I noticed changing the mask made a huge difference. While the mask I have now is sufficiently comfortable, I can't say for sure that there isn't an even more comfortable one. How should I go about trying out different ones (randomly select one?) and how long should I test it before deciding to if it's right or to move onto another mask? How many should I try before settling down? Will changing any other components make it easier?

You can sleep 8-9 hours in it, so it's not terribly bad. If you are having bad leaks and these can't be fixed by tweaking the mask, it might be necessary to change, but we don't have any evidence to that effect yet (the doctor says they're okay, and while most of us probably have more stringent goals, your leaks probably aren't a huge concern at this very early stage). I would not worry about changing the mask until those things change or you've got past your initial acclimatization phase.

I changed one thing at a time and pretended to go to sleep for about 10 minutes. Once it felt right, I slept with the new settings. I usually sleep with it two nights a week: one with old settings, the other with the new settings. Whichever works better becomes next week's "old" setting. After a month, one set of settings was consistently better than any others, so I stuck with it until now. However, I am willing to try out your method and sleep with the CPAP everyday.

Not just her method. I think we nearly all agree you should always mask up unless there's a specific reason like a bad head cold that prevents it.

I sleep longer and have less interruptions than I normally do. The main problem is just me feeling very tired afterwards.

It sounds like you're doing moderately well. Many others would love to be able to sleep like that so soon. The tiredness is normal and will eventually pass.

I'll try making small adjustments and leaving them for a few days and sleep with the CPAP every night.

Perfect.

One last question: In your opinion, are the benefits of CPAP worth doing something such as taking a break from school and work for several months until you begin to reap the benefits? (Again, I'd like to say that before seeing a sleep doctor my main concern was the timing and fragmentation of my sleep. Sleep quality itself wasn't much of a problem. So my situation is slightly different from yours. There's no use treating a relatively asymptomatic, non-communicable disease if the patient has to suffer so much.) I'm asking this because I'm considering this option, but I'm still open to other suggestions.

Absolutely no point in taking time off until you've committed to using the CPAP every time you sleep or nap. I would wait until after a minimum of 2 weeks after you start sleeping like that before making any longer term decisions.

There's no use treating a relatively asymptomatic, non-communicable disease if the patient has to suffer so much.

Every time you sleep without CPAP you are damaging multiple organ systems in your body. Try holding your breath for 30 seconds every 2 minutes for 8 hours. Every time you have an event, your body is going into emergency mode and pumping hormones into your system to get your brain awake enough to breathe, then it's relaxing and repeating all night long. Your heart is going into overdrive all night long when it should be puttering along sedately. You're not getting any effective deep sleep. Your blood pressure is going up. Your kidneys are failing. You are suffering brain damage, which will eventually be irreversible.

And this shouldn't be treated because you're asleep when it happens and don't notice it? No.

Remember rule number 1 and good luck. A bit of perseverance and you should soon be a seasoned CPAP user who loves their CPAP.

[cindjo717]

I am having problems with leaks, how would I go about making a mask liner that would stop most of this problem? Thanks guys.

[JointPain]

A quick search found the following (among many others):
viewtopic/t70605/viewtopic.php?f=1&t=68 ... on#p632423

[nobody]

I don't think I have narcolepsy. I feel sleepy at random times. I want to sleep at random times, but I have some control over toughing it out until I find a more appropriate place to sleep. Sorry, I should've made that clearer.

Not saying you have narcolepsy, but it's not always impossible to delay sleep when you do have it.

I think it's more of a circadian rhythm problem.

You could try using a light box