Brand new to CPAP (and this forum), and have just gotten the machine set up and myself ready for bed. But I'm not at all sure that I'm ready for bed with CPAP.

What if it doesn't work? (What if it does work?) What if I screwed up all the humidifier connections and it winds up drowning me? (AFAIK, that isn't possible; but that doesn't stop me from being nervous about it.) What if I roll over in my sleep and break that shiny new $200 mask? (I sure hope that one's not really possible either.)

I've embarked upon plenty of new adventures in my time - just never any where the challenge and excitement were an integral part of the process of drifting dreamily off to sleep. But I can't stay awake forever just out of nervous trepidation, right? So I guess I'm off to medical-technology-assisted bye-bye dreamland - we'll see how it goes.

Hmmmm. We've gotta get you to RELAX! Acclimating to CPAP is all about ATTITUDE. Do you WANT it to work for you?

What brand and model CPAP do you have? If we know that we can most likely offer better advice and more suggestions.

Setting these PAPs and integrated humidifiers up isn't all that difficult. Its not rocket science. I can't think of a single thing you can do when connecting humidifier to PAP that is going to cause any serious problems and certainly NOT drowning. That "rain out" (condensation) you occasionally read about has NOTHING to do w/the connection of humidifier to PAP, it has to do only w/how cool the room and how warm the humidifier has been set. AND the amount of condensation and its reach to hose and mask can NOT possibly drown you or anyone. No more than a drippy nose can cause you to drown. Or drooling.

These masks are made for you to be able to toss and turn in your sleep w/o damage to them. Tossing and turning may well cause some mask LEAKS, but that's just escaping air from between mask cushion and facial tissue, nothing that is going to break anything - except your sleep.

Why don't you try taking the water tank out of the humidifier so it doesn't spill the water, carry your PAP into the family room or wherever, don your mask, turn your PAP on and sit and read a book or magazine, work a jigsaw or crossword puzzle, watch TV, whatever floats your boat and occupies your mind w/something other than I've got to get to sleep today during the day? Doing this will help you get acclimated to mask and pressure in a more relaxed atmosphere and reduce some of the stress you are anticipating when going to bed.

As CrohnieToo said, it really is an attitude game. I just started a little over a week ago and had the same nervous anticipations. You just gotta do the mind over matter thing...I don't mind cuz it don't matter. You gotta tell yourself that you're gonna do fine, it's normal, people do it all the time, it's gonna work, everything is going to be ok, etc. My first night I put the mask on and slept the entire night. Woke up once or twice and wanted to take the mask off but told myself to just keep it on and I fell back asleep with it and haven't taken the mask off once since starting.

I also put the mask on and turned the machine on about 20 minutes before going to sleep and read a book for that time until I was comfortable with the pressure and mask.

So, you'll do fine...as long as you are expecting to do fine.

Gorfram wrote:Brand new to CPAP (and this forum), and have just gotten the machine set up and myself ready for bed. But I'm not at all sure that I'm ready for bed with CPAP.

Ah, I remember that feeling all too well ... Sometimes still comes back 9 months into therapy. As others have said, though, attitude is part (but not all) of the process of making CPAP work for you. One thing I do on the bad nights is remember that I only have to worry about TONIGHT. I can deal with tomorrow night (and the night after tomorrow and the night after that ...) once it gets here. Focus on tonight and hope that tonight will be the charm.

What if it doesn't work? (What if it does work?)

That does seem to sum up all the trepedation of starting therapy doesn't it? Something to keep in mind: CPAP therapy is a process. While a few people see immediate improvement of their symptoms right from night 1, most people don't. For most new CPAPers the adjustment to therapy requires some real work and often some discomfort, which raises the "it doesn't seem to be working" fears and often magnifies them greatly. Fortunately most CPAPers start to see improvement terms of how they feel sometime in the first couple of months.

Some CPAPers, however, are unlucky and don't see any improvement for many, many months. Take me, for example: Severe insomnia set in almost immediately and the insomnia sucked out of me every thing the xPAP was trying to put into me. Add chronic migraines and vetigo were already getting worse just before xPAP and now need to be treated and stir thoroughly to get even more serious problems with sleep deprivation while trying to adjust to CPAP. And cap it all off with a nice dose of can't tolerate the migraine med du jour just to make stuff even more interesting. Almost 9 months into therapy, I can tell xPAP is doing something POSITIVE for my body on about half the days. And on the other half? Well I'm now up to feeling as well as I felt before starting therapy instead of feeling many times worse. But I've stuck with therapy anyway. Why? In all seriousness, I sometimes do ask myself that question. My usual answer is: There are too many things that untreated OSA can lead to for me to NOT give xPAP my very best shot AND at least now I am beginning to see some subtle signs that the CPAP is geniunely working for me.

As for the flip fear of What if it does work? I think the root of this fear is the fear of acknowledging the OSA diagnosis is real, is valid, and that this condition is a life-long condition which requires daily therapy to properly mange it---in essense the fear of having to confront your own mortality. And it also brings up a primal, unwelcome, and negative image of being chained to the mask for the rest of your life. The only way I know of dealing with that is one night at a time. And remembering there are lots of other less than pleasant things you do for your health on a daily basis. The idea is to adjust to CPAP well enough where it becomes a daily habit---one you don't need to think about all the time. I'm not there yet, but I think I am making some progress.

What if I screwed up all the humidifier connections and it winds up drowning me? (AFAIK, that isn't possible; but that doesn't stop me from being nervous about it.) What if I roll over in my sleep and break that shiny new $200 mask? (I sure hope that one's not really possible either.)

More charming newbie fears I don't mean to tease you, because again, I've got plenty of strange fears of my own at night. These fears share something in common with my long standing fear concerning the crack in the ceiling in my bedroom that lies right above my head: I know that crack is a surface crack in the plaster. I know that it has not changed one iota since we bought the house (with the crack visible) almost 14 years ago. And yet, on a restless night, my unconscious mind will still concoct elaborate scenarios of that crack suddenly opening up and the entire house suddenly falling down and burying my husband and me in all the debris ...

Like I do when my fear of the crack raises its ugly head, the best thing to do with these fears is to first of all acknowlege that they are stuck there in your mind, but that they are coming from the primitive and irrational parts of your mind. And so remind yourself that the fears are irrational. And even allow yourself a bit of levity in acknowledging the cleverness or the stubborness of your unconscious and irrational mind to let go of the fear that you know is ridiculous: There's no way that anybody will drown from the condensation from the humidified air---anymore than you'd drown if you fell asleep face up outside and it started to rain. Any "rainout" from the humidified air condensing in the hose will wake you up the same way that rain falling on your face would wake you up if you fell asleep outside with your face up.

Breaking the mask or pulling the equipment off the night stand are pretty common fears among newbies I think. But many won't admit that they're worried about these things. But do keep in mind: The designers of this equipment designed the equipment to be used by people while they are asleep and NOT fully conscious. And they know that folks with OSA are often very restless sleepers who toss and turn a lot---particularly at the beginning. And all that tossing and turning does pull on the hoses and "crush" the masks and hoses beneath various body parts of folks weight well over 200 pounds at times. It's actually pretty sturdy equipment.

Pulling the equipment off the nightstand, however, is a somewhat rational fear depending on how you've got things set up. So make sure the CPAP is as far away from the front edge of the night table as possible. A hose management system where the hose is tethered to the wall or headboard above your head not only may make the hose easier to deal with, but it may also make it much harder to pull the CPAP off the night stand. As an added bonus, it will also make it harder to get tangled up in the hose and thus reduce the irrational fear of the hose somehow getting wrapped around your neck.

I've embarked upon plenty of new adventures in my time - just never any where the challenge and excitement were an integral part of the process of drifting dreamily off to sleep. But I can't stay awake forever just out of nervous trepidation, right? So I guess I'm off to medical-technology-assisted bye-bye dreamland - we'll see how it goes.

Keep your wry sense of humor intact. It will help you tremendously on your new adventure into hosehead land. And the best of luck!

robysue

Thanks ChrohnieToo, Ameriken, and Robysue; for your encouraging and reassuring replies. :)

My morning report:
- Used the CPAP for six hours of (uninterrupted!) sleep, then slept 3 more hours sans CPAP.
- Did not drown.
- Did not break the mask (or anything else).
- And it did seem to work.

I feel tired and foggy-headed, but not nearly as tired and foggy headed as I did yesterday (and the day before, and the week before, and the years before...). I very vaguely remember this feeling of there being some solidly vibrant core in the middle of me, despite any ongoing external problems - kind of like a tree in wintertime, leafless and dormant but still very much alive.

The problems that did crop up were the Dreaded Eye Leak, and considerable annoyance to the cat.

I'm a side sleeper. I sleep on my side, usually my left side. I'm so much a side sleeper that it's almost part of my personal identity. But everytime I dozed off enough to snuggle relaxedly into the pillow, that would nudge the mask just enough to create a leak right onto my eye. I dialed the forehead support in, and then back out; and tightened the lower and upper straps repeatedly (the likely cause of today's mild headache). I eventually rolled onto my back and went to sleep, eye-leak-free, almost immediately. Woke up still on my back six hours later, better rested than I have been for a very long time but with the mild lower back pain I almost always get when I sleep on my back.

Going to try more mask adjustments and a firmer, more shape-holding pillow for tonight. Plus another pillow to slip under my knees (which will help with the lower back pain) if I wind up sleeping on my back again.

The poor cat - usually bedtime is cuddle time, and he sleeps curled up about six inches from my face with one of my hands tucked under his shoulder or chin. Last night, he sniffed inquistively at the mask and hose until I turned the CPAP on. Then he gave me a disgusted "Well, if you're going to do something like that..." sort of look and stomped (as much as soft kitty paws on soft bedding can stomp) off to the other side of the bed. I think I was able to make it up to him during my CPAP-free nap, and we'll probably both eventually be able to adjust.

So last night was a success, if a qualified one, and I'm expecting things to go even better tonight.

Congratulations. Now that you made it through the first night, it should get much easier from here on out.

However, try and sleep the remaining 2 or 3 hours avec face mask. On my first night I too was tempted to take it off when I first woke up. I had 2 hours left and considered sleeping without it. However that means apneas and low oxygen levels for those two hours, and we already know that is what does damage to our hearts. Since I've already experienced several years of damage, I decided right from the beginning to not get into a habit of taking off the mask and doing more damage. Plus, those extra couple of hours could mean the different between waking up foggy and waking up less foggy.

So you've done great, and I encourage you to use the mask 100% of the time you sleep, be it a full night or a 30 minute catnap. Good luck and enjoy your sleep!

Robysue,

Thanks for such a detailed and reassuring reply. :)

robysue wrote:Some CPAPers, however, are unlucky and don't see any improvement for many, many months. Take me, for example: Severe insomnia set in almost immediately and the insomnia sucked out of me every thing the xPAP was trying to put into me. Add chronic migraines and vetigo were already getting worse just before xPAP and now need to be treated and stir thoroughly to get even more serious problems with sleep deprivation while trying to adjust to CPAP. And cap it all off with a nice dose of can't tolerate the migraine med du jour just to make stuff even more interesting. Almost 9 months into therapy, I can tell xPAP is doing something POSITIVE for my body on about half the days. And on the other half? Well I'm now up to feeling as well as I felt before starting therapy instead of feeling many times worse. But I've stuck with therapy anyway.

Wow. I'm really sorry to hear that you've been through such an awful struggle, and glad to hear that you seem to be turning the corner towards greater improvement.

As for the flip fear of What if it does work? I think the root of this fear is the fear of acknowledging the OSA diagnosis is real, is valid, and that this condition is a life-long condition which requires daily therapy to properly mange it---in essense the fear of having to confront your own mortality. And it also brings up a primal, unwelcome, and negative image of being chained to the mask for the rest of your life.

"Being chained to the mask." It really does feel like that. I've also got this sense of "What? You mean I don't know how to breathe? Everyone's supposed to know how to breathe."
(And what about sex? (Assuming my sex drive ever does comes back.))

For me, CPAP sucess would have huge life-changing potential. I have fibromyalgia/chronic fatigue syndrome so severe that I have been totally disabled for the last eight years. Along with stuff like chronic widespread pain
and muscle weakness, my symptoms include:
- unrefreshing sleep
- difficulty waking
- daytime sleepiness
- obesity
- high blood pressure
- headaches
- irritability
- depression
- cognitive dysfunction
- chronic debilitating mental and physical exhaustion
all of which CPAP might relieve or alleviate. I'd still have the other 50% or so of my symptoms, but I might be much better able to manage them.

Which would all be good - very, very good! - but still a breath-takingly large amount of change.

What if I screwed up all the humidifier connections and it winds up drowning me? (AFAIK, that isn't possible; but that doesn't stop me from being nervous about it.) What if I roll over in my sleep and break that shiny new $200 mask? (I sure hope that one's not really possible either.)

More charming newbie fears I don't mean to tease you, because again, I've got plenty of strange fears of my own at night. These fears share something in common with my long standing fear concerning the crack in the ceiling in my bedroom that lies right above my head: I know that crack is a surface crack in the plaster. I know that it has not changed one iota since we bought the house (with the crack visible) almost 14 years ago. And yet, on a restless night, my unconscious mind will still concoct elaborate scenarios of that crack suddenly opening up and the entire house suddenly falling down and burying my husband and me in all the debris ...

Oh, you're perfectly right to tease me; because these are irrational, even silly fears. My brain sometimes handles anxiety too unspecific to put a name on, or too intractable to respond to logical thinking, by conjuring up perfectly absurd things to be afraid of so that I can try to set them aside as absurd, hopefully setting the underlying anxieties aside along with them. I kind of wish I had a crack in the ceiling like yours: as it is, I usually just lie awake on restless nights and worry about money.

Keep your wry sense of humor intact. It will help you tremendously on your new adventure into hosehead land.

Thanks - the sense of humor is something that I couldn't get rid of if I tried (and I have tried - not everyone has the good sense and excellent taste to appreciate it as much as you do ). I like the idea of being a "hosehead" - are there t-shirts? :)

Off to the "The Great CPAP Aventure: Night II",

- Gorfram

ameriken wrote:Congratulations. Now that you made it through the first night, it should get much easier from here on out.

However, try and sleep the remaining 2 or 3 hours avec face mask. On my first night I too was tempted to take it off when I first woke up. I had 2 hours left and considered sleeping without it. However that means apneas and low oxygen levels for those two hours, and we already know that is what does damage to our hearts. Since I've already experienced several years of damage, I decided right from the beginning to not get into a habit of taking off the mask and doing more damage. Plus, those extra couple of hours could mean the different between waking up foggy and waking up less foggy.

So you've done great, and I encourage you to use the mask 100% of the time you sleep, be it a full night or a 30 minute catnap. Good luck and enjoy your sleep!

Thanks, Ameriken.

I had actually woken up after those 6 avec-CPAP hours and thought I was awake for the day. I stretched out on the bed again mostly with the thought of providing the cat with the face-to-fur cuddles he'd missed due to the mask, and the sans-CPAP sleep just sort of happened...

I fully intended to be up to 8 CPAP-ed hours/night by the end of this week, maybe sooner. (I do need to get the mask better adjusted a to ease a little mild, quickly dissipated, sinus pain I had on waking and the mild, not-so-quickly-dissipated headache I had for the greater half of the day. But those are just little tweaks to a successfully working system.)

Looking forward to a world without fog,

- Gorfram

Gorfram wrote:Robysue,

Wow. I'm really sorry to hear that you've been through such an awful struggle, and glad to hear that you seem to be turning the corner towards greater improvement.

Thank you for your kind words. I always worry about posting my story to newbies, but I really think folks need to know about the outliers. I also think it helps to know some people do stubbornly stick with it in spite of problems and eventually DO start to benefit from CPAP.

As for the flip fear of What if it does work? I think the root of this fear is the fear of acknowledging the OSA diagnosis is real, is valid, and that this condition is a life-long condition which requires daily therapy to properly mange it---in essense the fear of having to confront your own mortality. And it also brings up a primal, unwelcome, and negative image of being chained to the mask for the rest of your life.

"Being chained to the mask." It really does feel like that. I've also got this sense of "What? You mean I don't know how to breathe? Everyone's supposed to know how to breathe."

Add to that (for me): "What, I have to re-learn how to sleep through the night without waking? Didn't I learn that when I was a baby?"

(And what about sex? (Assuming my sex drive ever does comes back.))

Three things here: First, yes untreated OSA really can suppress the sex drive. Second, once CPAP starts helping with the fatigue and energy levels, the sex drive should come back. Third, there's still the mental thing about "How sexy can I possibly be with a hose on my nose?" BUT (and it's a big huge, important but) partners are no where near as bothered by the hose as we hoseheads tend to think they might be. Really and truly: It's not just my husband---I've run across references to a scholarly paper about this somewhere.

For me, CPAP sucess would have huge life-changing potential. I have fibromyalgia/chronic fatigue syndrome so severe that I have been totally disabled for the last eight years. Along with stuff like chronic widespread pain ...

I do hope that after you've been on CPAP for a while that it does help relieve some of your symptoms. It sounds as though you've been living in a lot of pain, much of which is definitely caused by or severely aggravated by the untreated OSA. And now that you are treating the OSA, hopefully you will start to see some real improvement in some of those symptoms before too long. For me, the CPAP really has reduced low-grade body-wide inflammation which was triggering arthritis-type pain in my hands and feet. That was the first real positive change that I could attribute to the CPAP.

Keep your wry sense of humor intact. It will help you tremendously on your new adventure into hosehead land.

Thanks - the sense of humor is something that I couldn't get rid of if I tried (and I have tried - not everyone has the good sense and excellent taste to appreciate it as much as you do ). I like the idea of being a "hosehead" - are there t-shirts? :)

Love the idea of t-shirt and best of luck on your continuing adventures in hosehead land.

Gorfram wrote:The poor cat - usually bedtime is cuddle time, and he sleeps curled up about six inches from my face with one of my hands tucked under his shoulder or chin. Last night, he sniffed inquistively at the mask and hose until I turned the CPAP on. Then he gave me a disgusted "Well, if you're going to do something like that..." sort of look and stomped (as much as soft kitty paws on soft bedding can stomp) off to the other side of the bed. I think I was able to make it up to him during my CPAP-free nap, and we'll probably both eventually be able to adjust.

I am just finishing my third week of therapy. My wife and I have four Dachshunds that sleep with us in our king sized bed. Two are attached to her and two to me. I really thought they would have a hard time with it. It hasn't bothered them from night one. In fact the little girl, Princess, sleeps curled up against my armpit and she doesn't have any problems with it. Of course she is "The Princess" and ignores anything she doesn't like.

Gorfram,
My cat had the same reaction! He usually cuddles with me, and once I got the mask on he didn't like a) the slight noise of the machine and b) the exhalation breeze coming out of my mask. I even tried to keep my face tilted away from him while I was falling asleep so that the breeze wouldn't hit him (the things we do for our cats). Eventually, he has come back to sleeping on the bed each night, and I make sure he gets mask-free cuddle time so that he feels special.

Keep up the good work with using your CPAP. Wearing a hose and mask to sleep is a weird experience, but the benefits often can outweigh the troubles. And keeping positive helps - I now tell people that I am lucky enough to wear a *gorgeous* headpiece at night, like I'm priviledged to wear it!
:)

Gorfram wrote:Thanks, Ameriken.

I had actually woken up after those 6 avec-CPAP hours and thought I was awake for the day. I stretched out on the bed again mostly with the thought of providing the cat with the face-to-fur cuddles he'd missed due to the mask, and the sans-CPAP sleep just sort of happened...

I fully intended to be up to 8 CPAP-ed hours/night by the end of this week, maybe sooner. (I do need to get the mask better adjusted a to ease a little mild, quickly dissipated, sinus pain I had on waking and the mild, not-so-quickly-dissipated headache I had for the greater half of the day. But those are just little tweaks to a successfully working system.)

Looking forward to a world without fog,

- Gorfram

Sounds like both you and your cat are both acclimating to CPAP and doing well, congratulations! Your attitude sounds far better now than it did in your first post, and that's perhaps 90% of the battle.

I think for anyone who is embarking on CPAP therapy and reading this, one of the most important parts of this therapy is what CrohnieToo said: "Acclimating to CPAP is all about ATTITUDE."

Thanks to Robysue, tbone, bmorecat, and Ameriken for your replies.

Night II - Morning Report:

Went much better this time. Got in about 7 (uninterrupted! genuinely restful!) CPAP-ed hours, plus an hour or so of mask-free kitty-cuddle sleep. Slight sinus & forehead pain on removing the mask, but both dissipated quickly.

I spent some time before bed readjusting the mask, trying to get all the straps tightened evenly and the forehead support dial to just over halfway from "eye leak" to "chin leak." Side sleeping was a bust again; but slept fine on my back now that I have all the appropriate pillows handy. The main problem I had was making sure that the air flow was indeed "on" - it seemed so much less invasive and obnoxious then before (I must be getting used to it) that at first I thought I hadn't hit the right button on the CPAP machine.

The cat was much more accepting then last night - he slept right in between my face and the CPAP machine. He even tried to assert his dominance over the hose by sitting on it (turns out a CPAP hose can easily withstand 16 lbs worth of feline behind, which is a very good thing around here).

Hope to hit the 8 CPAP-ed hour mark tonight. :)

- Gorfram

I'd say you've just about got it licked. If you look at your first post and this last post, you'll see a huge difference in the two. You have the same machine, the same mask, the same bed and house, etc, and the only thing that's really changing is your attitude (and your cats attitude) toward using it. Great job!

One suggestion for succesful side sleeping...turn the pillow so you sleep on the end rather than the side. I have to do that since I'm not allowed on my back till this baby comes out of me in September. I found the first couple nights I had a hard time with the mask slipping till I slep on the edge of the pillow. Due to my husband's obsessive need for 10 pillows to himself, I don't have room to just shove mine to the side...so I turned the pillow sideways. Works perfectly. The mask stays off the pillow, which means no slipping. I also have another one under it to prop it up a little, turned the normal way, to help because if a pillow goes flat I get horrible neck cramps for a day or so.

I'm glad you're taking to the CPAP well. I've loved mine since the first night myself and it's amazing how much better I feel, even after the first day. Even my husband loves my machine and he doesn't get to use it. I think it's cause I don't snore so he can actually sleep rather than hope to fall asleep first just to not hear me.

Good luck in future nights!