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[SleepingUgly]

Davis1, when you are ready to work on your sleep hygiene, Robysue has a wealth of information about this topic. She worked with a PA whose knowledge rivaled most Sleep Docs that I've met, and possibly exceeded it, and Robysue was exceedingly disciplined about following the PA's advice. The only correction I'd make to what she advises is where she says:

Step 1) Get up out of bed, go into a different room, and do something FUN and PLEASANT to try to relax both your mind and body whenever you find yourself lying in bed getting

I would argue that you should do something BORING when you have to get out of bed because you're not sleeping, and keep the lights dim. No TV or computer, and I wouldn't even read a very interesting book. You want to encourage sleepiness, not stimulation, and you want being awake at that time of night to be unreinforcing.

Although I'm a big fan of behavioral and cognitive behavioral approaches, I think under certain conditions, short term use of a safe sleep-promoting agent is the most efficient way to go to break a long cycle of insomnia and adjusting to CPAP. It's possible that once you're at a therapeutic pressure and are are sleeping with CPAP, the insomnia may resolve, or at least improve greatly, on its own.

In answer to your question, it's impossible to know the source(s) of your insomnia. OSA can cause insomnia by the mechanisms others have explained to you, and by causing peak melatonin to shift toward morning, as well. Obviously you may have other factors that may be contributing to your insomnia. My advice would be to get titrated appropriately, ask your doctor about the short-term use of a sleep aid, which can help you acclimate to CPAP, and of course, in as much as possible, try to improve your sleep hygiene.

[robysue]

SleepingUgly,

Yeah, ideally the activity chosen for being up in the middle of the night should be something quiet (as well as enjoyable) so that it encourages the feeling of sleepiness to come.

But after actually resorting to getting out of bed because they're not sleeping, some folks are extremely reluctant to do anything except sitting in the dark worrying about the fact they're up out of bed and not sleeping and start staring at the clock and then worrying more about the fact that they are not sleeping OR they figure since they are up anyway, they might as well start working on something that needs to be done, but is not particularly fun, such as job-related paperwork or housework and chores. In either case, it then becomes harder to force oneself to get out of the bed in the first place and easier to lie in bed NOT sleeping, which then tends to feed the insomnia and makes it worse over time.

For these folks, it is often better to intentionally chose a fun activity even if that activity is not particularly quiet or sleep-inducing. Once these folks learn that it's "ok" to get up in the middle of the night and NOT work or worry, then they can start focusing on reducing the stimulation due to the activity. This idea of choosing a fun activity, by the way, comes from Dr. Krakow's Sound Sleep, Sound MInd. And from the tone of the OP's posts, it sounds to me like he's likely one of these people who if they don't learn to consciously choose something enjoyable will default to sitting in the dark worrying about the very many and serious problems in his life, and hence, quickly come to the conclusion that getting out of bed is not helping him get any sleepier.

Good (possibly fun) activities for folks getting out of bed due to NOT sleeping include, but are certainly not limited to:

• * Listening to some quiet music, particularly in the semi-dark in another room
  * Reading a non-job related book outside of the bedroom
  * Working a crossword puzzle or a Soduko or similar kind of puzzle---on paper, not on-line
  * Reading a part of the newspaper that doesn't contain all the bad news---the comics, the Life section, the sports, etc.
  * Writing in a journal---if you don't focus on the negatives and the current worries and if writing is something you enjoy.
  * Flipping through a REAL (not computer-based) photograph album
  * Meditation or very light yoga/stretching or deep focused breathing to help soothe the spirit
  * Petting the cat or dog
  * Playing solitaire with REAL cards---not on the computer

[Davis1]

You guys and gals are fantastic..reading carefully.

I am going to check out a nasal pillow tommorow. My mask is not fitting well. Once I get a good fit, things should be better...

[Davis1]

I have taken every sleep hygiene step possible over the years. I read your lists and have done it all. Nothing has worked.

The CPAP is still doing squat. The mask is totally obstructive and I have to remove it after about an hour. The straps cut into the back of my neck, the nasal area is compressed. The air smells like a hospital, very plasticy and annoying after almost a month of wearing it. I cannot for the life of me fall asleep with the mask on.

I am really at my wits end. The CPAP devices seem like primitive machines. I cannot adjust my own pressure, every change requires 2 hours of combined travel and appointment making. I am going to delay my titration test. The hell of not only having wires all over me and wearing that cursed mask is just too much to bear.

The whole field of sleep seems about as advanced as microbiology in the 15th century. For a whole damned year I have been asking for help. My doctor says to read books. He refuses to give me any sleep medication. It took months to get an appontment with the sleep and alertness clinic. And they are just throwing sleep studies at me. The mask doesnt help me fall asleep at all, it just makes everything worse.

I cannot believe how ignorant medicine is about sleep. How slowly the health care system moves to help me. Its just a big fat joke for them. I am cynical and fed up. Everything is a business, oh, look another sucker, lets sell him a 1500 dollar piece of crap, engineered by baboons mask and machine. Here, just breath into this idiotic appliance, that will help. OH, its not helping? Must be YOUR fault Mr. Patient. Everything, of course, is the patient's fault.

Just surrounded by morons, trying to get some help.

Sorry, but its just so pathetic. CPAP seems like some kind of scam to me.

[yrnkrn]

Sorry, but its just so pathetic. CPAP seems like some kind of scam to me.

I am sorry to hear about your terrible experience with CPAP. I think you have every right to be angry at the ignorant medical system you encountered. And yes, the sleep medicine field is relatively new and "primitive". This does not mean it's of no use. Quite the contrary, for many people CPAP is literally a lifesaver.

My experience - beyond the required sleep study, I measured my own satuartion going down to 75% tens of times times a night. That had been going for years. Sometimes I got up and not being able to do anything useful but go back to sleep.
Since I've been using the CPAP (for a month now) this doesn't happen anymore. My sleep quality is much better. My satuarion is 90something%. I wake up "sharp" every day. I am still looking for the optimal pressure settings (and maybe optimal machine) but the change in my life quality just from using CPAP had been extraordinary. I think this is the experience of lots of people on the board. Getting used to sleeping with CPAP isn't easy at all. the mask. The hose. The noise. For years I postponed using CPAP. Now I'm sorry for every night I slept without. There are tons of good advice on this board about sleeping with CPAP. For me, the most important "getting used to" was the mask. I couldn't bear any nasal or full face mask. But once I tried the nasal pillows type I knew I had a chance to sleep with it. This is highly individual.

Personally - I would not use a machine I can't adjust the settings. For most machines one can find the clinician manual on the net.

Read the board for couple of days, you'll learn way lot more than from your doctor.

That being said, I don't know if CPAP is right for your conditions and would it help it. But CPAP is most certainly not a scam.

[LSAT]

In order to be successful with CPAP you need a POSITIVE ATTITUDE. You also should look for a different sleep doctor.

[robysue]

I have taken every sleep hygiene step possible over the years. I read your lists and have done it all. Nothing has worked.

and

Firstly, it takes a long time to fall asleep, even with the mask. Second, I awake, just like I always did, about an hour into the sleep and even with the mask on, I cannot go back to sleep. I eventaully after an hour or more of tossing with the thing on my face, take it off and resort to my old method, move around a bit, smoke a bowl of weed and drift off at about 6:00 AM and sleep until 11:30ish or so, and try to catnap during the day.

As long as you are lying in bed for hours at a time NOT sleeping and resorting to pot (which is known to adversely affect the sleep cycles), you have NOT "taken every sleep hygiene step possible" You really need to enforce: If you are NOT asleep after 15 to 20 minutes of waking up or lying down at the beginning of the night, then GET OUT of the bed, go to a different room, and do something else until you start to feel SLEEPY.. And you need to learn the difference between feeling sleepy and feeling exhausted. They are NOT the same thing and you won't fall asleep if you are going to bed before you feel sleepy or lying in bed after you wake up and are not feeling sleepy enough to get back to sleep.

The CPAP is still doing squat. The mask is totally obstructive and I have to remove it after about an hour. The straps cut into the back of my neck, the nasal area is compressed. The air smells like a hospital, very plasticy and annoying after almost a month of wearing it. I cannot for the life of me fall asleep with the mask on.

Sounds to me like you are tightening the mask WAY TOO TIGHTLY. No mask should be worn so tight that "straps cut into the back of the neck." Try loosening those straps up some. And though it is counterintuitive most masks will also start to LEAK when they are tightened too tightly. Review the proper fitting proceedure for you mask and make doubly sure the mask is not too tight. If you can't find those instructions, then post here with your mask in the subject line asking for tips on how to fit the mask.

As for the smell of the air:

• How often do you clean the hose and how do you clean the hose? What you choose to clean the hose with will affect how the air coming through the hose smells.
  
  Have you tried aroma therapy? You can place things to generate pleasant smell (i.e. aroma therapy) near the air intake and that should also help with the "plasticy smell of the air.

I cannot adjust my own pressure, every change requires 2 hours of combined travel and appointment making.

Get the provider's manual and learn to do this yourself. Post here with the subject line: Need the provider's manual for <your exact machine> and you will quickly get links to where you can download the provider's manual.

I am going to delay my titration test. The hell of not only having wires all over me and wearing that cursed mask is just too much to bear.

In my humble opinion, this is a BIG MISTAKE. I know just how uncomfortable a full PSG is---I've had four of them in the last seven months. But the data that comes out of a PSG includes many more channels that the CPAP/APAP has and provides real insight into your sleep cycle structure. You need to find out whether the CPAP is effective and at roughly what level of pressure is needed to make it effective AND you need to find out if there are OTHER types of arousals that are frequent enough to be disturbing to your sleep. If you are worried about not sleeping at all during the test, you can get permission to take an Ambien or similar sleeping pill for the night of the sleep study. You also need to be aware that they only need a couple of hours of FRAGMENTED sleep to get some real data. And the WASO periods may be illuminating to you as well. Many insomniacs actually sleep more than they think they do. And on the other hand, if the WASO periods are as long as you think they are, you've then got data that indicates you may need professional, medical help in dealing with the insomnia. Have you ever really worked with a doctor, PA, or nurse on treating the insomnia? Or have you just been self-treating it unsuccessfully?

The whole field of sleep seems about as advanced as microbiology in the 15th century. For a whole damned year I have been asking for help. My doctor says to read books. He refuses to give me any sleep medication.

Have you actually done ANY of the work the doctor has ask you to do? Because in my humble opinion, your doctor is actually practicing good medicine here: Rather than resorting to a chemical-based "solution" to merely mask the insomnia problem, he wants you to work on the behavior patterns that are causing the insomnia so that it goes away for good without you getting hooked on the sleeping pills. There is a place for sleeping pills---but they really should NOT be the first line response to treating insomnia in my opinion.

It took months to get an appontment with the sleep and alertness clinic. And they are just throwing sleep studies at me. The mask doesnt help me fall asleep at all, it just makes everything worse.

Lots of medical tests take a long time to schedule (not an excuse, just reality) and it's sad that you've been forced to wait so long.

As for "throwing sleep studies" at you: Full PSGs reveal more about your sleep than your baseline AHI. It may help your doctor come up with more effective ways to deal with your insomnia as well. Have you got the report and summary graphs of your diagnostic sleep study? If not, request a copy for your records and LEARN from them. If you don't fully understand what the report and summary graphs say about your sleep, post the results here: People will be happy to help you learn how to read them.

Just surrounded by morons, trying to get some help.

Sorry, but its just so pathetic. CPAP seems like some kind of scam to me.

It is sad that you've had such a negative experience so far. But for now, CPAP is the most reasonable approach to treating OSA: It uses a benign substance (slightly pressurized room air) to prop the upper airway open and prevent the vast majority of apneas and hypopneas once treatment is optimized. But that's ALL CPAP is designed to do. It will not and *cannot* address your insomnia issues all by itself because your untreated or improperly treated OSA is only ONE insomnia trigger among many and numerous serious causes of your insomnia.

[Pugsy]

Did you ever get the nasal pillow type of mask to try? You mentioned trying it a few days ago.

I cannot wear any mask that covers the bridge of my nose. The least little pressure on my nose and sinus area causes immediate congestion. The straps around the back of the skull with over the nose masks hurts my neck.

I can easily wear the nasal pillow type of mask. Strap placement is different and doesn't require extreme tightness to keep a seal and no congestion from pressure on the nose bridge/sinus area.

[roster]

The CPAP is still doing squat. The mask is totally obstructive and I have to remove it after about an hour. The straps cut into the back of my neck, the nasal area is compressed. The air smells like a hospital, very plasticy and annoying after almost a month of wearing it. I cannot for the life of me fall asleep with the mask on.

I am really at my wits end. The CPAP devices seem like primitive machines. I cannot adjust my own pressure, every change requires 2 hours of combined travel and appointment making. I am going to delay my titration test. The hell of not only having wires all over me and wearing that cursed mask is just too much to bear.

The whole field of sleep seems about as advanced as microbiology in the 15th century. For a whole damned year I have been asking for help. My doctor says to read books. He refuses to give me any sleep medication. It took months to get an appontment with the sleep and alertness clinic. And they are just throwing sleep studies at me. The mask doesnt help me fall asleep at all, it just makes everything worse.

I cannot believe how ignorant medicine is about sleep. How slowly the health care system moves to help me. Its just a big fat joke for them. I am cynical and fed up. Everything is a business, oh, look another sucker, lets sell him a 1500 dollar piece of crap, engineered by baboons mask and machine. Here, just breath into this idiotic appliance, that will help. OH, its not helping? Must be YOUR fault Mr. Patient. Everything, of course, is the patient's fault.

Just surrounded by morons, trying to get some help.

Sorry, but its just so pathetic. ....

OK, now you have demonstrated you know how the professional side of the equation works, so get over it and start working on what the patient side can do to take control of the process and be a winner.

It is often that CPAP patients are initially prescribed the wrong machine, the wrong machine setting, and the wrong mask. Since you delayed the titration study, do something even better and get a data-capable machine and software and get your CPAP therapy optimized on your own like many of us did. Look at the charts in this link, viewtopic.php?f=1&t=60874&st=0&sk=t&sd=a , which gives some examples of therapy as prescribed and therapy after optimization by patients using data-capable machines and software.

The straps cut into the back of my neck, the nasal area is compressed.

This sounds like some combination of improperly sized and/or adjusted mask. These are problems solvable by you with help from this forum.

BTW, at some point you will begin to know how and when to use the limited capabilities of the medical profession to help in your control and optimization of this process and your good health.