Mom of 4 month old, bummed, low compliance, need "therapist"

[CAsleep]

I am in need of some advice here. I don't even know what my "question" is, but I can't figure out how to treat my apnea. I hate my cpap, I am dealing with a baby, and we want to have more, but it breaks my heart that my CPAP machine and the drama surrounding it is actually making me dread having more children. I don't want my family size to be determined by this apnea. I want to just live my life. Apnea's symptoms (extreme fatigue) have bothered me for farrrr too long, but now treating it (or trying to) is....not going well.

I think I have had apnea most of my life. I can remember as a child, people constantly telling me I snore. I was always an athletic, normal weight child who played sports and ate healthy. I can remember having mood swings and being drowsy during class in elementary school.

I finally got diagnosed at 27. My AHI was on borderline of mild and moderate, but the CPAP helped with my fatigue, greatly. When I don't wear my mask at night, i PAY!!!! I am sooo drowsy, and my eyes won't stay open. It's awful, reminds me of life before I got the CPAP.

I used Lunesta for the first year or two, to help me fall asleep with the CPAP on. Once I knew we were thinking about conceiving, I went off Lunesta, because you can't use it while pregnant.

I have never really been a happy camper with this CPAP thing. It just seems like no solution is good enough to actually stick. Now that I have children, I have too much at steak to just sit around in a dazed fog all day, like I did before.

Before i was pregnant, my sleep doctor made a comment to me (unsolicited), that my tonsils looked a little big, said I might benefit from the surgery, referred me to a good ENT surgeon. He had nothing to gain from me getting the surgery...he didn't even know the surgeon, and later on asked me what I thought of her, because he wasn't sure. I wasn't looking to get the surgery, had heard bad things about it here, but figured I'd look into it, since my compliance was waning. ENT surgeon said the tonsils weren't "that" big, but my uvula was long. She seemed to think it was worth a shot, if "I" was willing to go through with it, but warned me it was like 50/50, and the effects would probabloy wear off if I gained weight later in life, or maybe regardless. I ended up accidentally getting pregnant right before I was supposed to get the surgery. I was upset to miss the chance to have a pregnancy and "new mom" phase, where I felt well-rested. That was the goal. Even then, CPAP wasn't working out well, without the Lunesta. Even with Lunesta, I just don't sleep well attached to something. I figit to get things off me. It's how I sleep. I am hyper-aware of things on me. I sleep best on my stomach, and that's too hard with the CPAP mask.

Well...I have a baby now, and lately I am lucky to wear my CPAP 2 hours a night. I have gotten sooooo "over it." I REALLY want to wear it, but I hate it so much, that I fall asleep, meaning to put it on, but don't. Trust me, I want to wear it. I feel like crap the next day, and I can barely focus on being a mom, which i hate (not focusing). But I can't bring myself to fall asleep with it on.

I know that this forum is very "pro"-"make CPAP work." But, it is so difficult, getting up for nighttime feedings. I have that many more chances to fail to wear the mask (yet, also, to succeed). I have a hard enough time putting it on in a sleepy haze ONCE a night, let alone, after EVERY feeding (11:30 PM, 3:30 AM, 5:30 AM). Sure, my baby will eventually sleep through the night, but then I may not put it on even when I first fall asleep. Also, we would like to have 2-3 more children. I just can't imagine going through this infant phase again, struggling with my CPAP. It would be so much easier to have a surgery that could not only help my sleep quality but get rid of this drama where I never wear the mask, but deserpately try to. Every morning, I wake up pissed I didn't wear it. But, I can't fall asleep with it on, so I wait until I am really drowsy, which normally fails.

I am just looking for support. Is anyone else in my shoes? Went through the motherhood phase with your CPAP? I guess it could be worse, I could have undiagnosed apnea, then I'd be suffering with no answers. I wish I could just be a normal 30 year old and not worry about this. HAve more kids, and not struggle with either cpap compliance, or the negatives of the fatigue. It would be fine, if I was good at putting it on, and it all worked out.

Where should I go from here? All I see when I look at my options, are the negatives. I'm a positive person, but this has me frustrated. I still want to try the surgery, but am nervous. I think not eating after the surgery would make me loose my milk supply. I would like to continue to have good supply until he's 6 months, then some milk supply up until my baby is 1 year, because otherwise, I will have to buy formula for the few liquid feedings they still require, which I don't want to do. But I still have 7 months to go. Then, I will have to recover with a 1 year old. It all seems like such a hassle. Then what if it doesn't work?

Wahh wah wah.....I know. Just looking for support. What would you do? I worry with a mouthpiece, I'd still have low compliance. I hate anything on me, while I sleep. It's hard to get me "go down." Harder than my baby.

EDIT: So, I just read through the post in the "sticky" part at the top....called "Dealing with Change." It talks about Denial, then Depression, then Head Acceptance and Heart Acceptance. I think I am posting, because I need help navigating where I am in this process, and what I should do about it. If you read that denial section, I say a lot of those things!!!! I wonder if trying to get the surgery is part of teh denial? Denying that I will be dealing with this my wholllllleeee life? I think that is what bothers me. No offense, but many of the people on this board are beyond me in years. That upsets me; makes me feel unlucky. I know many will say they dealt with the symptoms forever, but it still doesn't make me feel better. I am dealing with teh symptoms now, too. I feel that it's unfair that I have to deal with wearing the mask "now." My great grandmother just passed away, and she lived to be over 100. If I do the math right, that's over 70 years of wearing xPAP. I want 4 kids. I want my husband to find me sexy, and I want to fall asleep in his arms. Just one night. Which merges into two.....which turns into frustration because then I'm exhausted.

Should I just ACCEPT, and WEAR it? I can't get over the hump. And physically, having a hard time getting comfy wearing it. Like I said, I'm a stomach sleeper. Ideally, I like to be cuddled to sleep, then roll onto my stomach after about 30 minutes. How can I make that work!!!! I can't do either (cuddling or stomach sleeping) while wearing the mask. That is why I became a Lunesta dependant, just so I could fall asleep with it on. When I move, it pulls off. If I tighten it, it's too tight. I have found the best mask for me already.

How do I accept this? I think I am psychologically not allowing myself to ADAPT how I fall asleep.

But also, maybe surgery IS the best option for someone like me?

Is it denial?

[49er]

Hi CAsleep,

Welcome to the forum.

I am not a mother but have struggled big time with pap therapy and definitely can relate to trying to put on the mask in a haze. Long story as to how that happens.

Unfortunately, I don't have any great words of advise for you. But I urge you strongly to find a way to make pap therapy work no matter how you feel about it.

You don't want to be in my position as I am greatly concerned I am developing bothersome symptoms because of my problems. I knew that was a possibility but another part of me was in denial. There was always the next day to try again. Well, that next day is here and can no longer be put off.

Anyway, you are young enough that there will probably be great improvement to pap therapy during your lifetime. But if there aren't, it is better to wear a pap machine than deal with the conditions that result from apnea.

49er

I am in need of some advice here. I don't even know what my "question" is, but I can't figure out how to treat my apnea. I hate my cpap, I am dealing with a baby, and we want to have more, but it breaks my heart that my CPAP machine and the drama surrounding it is actually making me dread having more children. I don't want my family size to be determined by this apnea. I want to just live my life. Apnea's symptoms (extreme fatigue) have bothered me for farrrr too long, but now treating it (or trying to) is....not going well.

I think I have had apnea most of my life. I can remember as a child, people constantly telling me I snore. I was always an athletic, normal weight child who played sports and ate healthy. I can remember having mood swings and being drowsy during class in elementary school.

I finally got diagnosed at 27. My AHI was on borderline of mild and moderate, but the CPAP helped with my fatigue, greatly. When I don't wear my mask at night, i PAY!!!! I am sooo drowsy, and my eyes won't stay open. It's awful, reminds me of life before I got the CPAP.

I used Lunesta for the first year or two, to help me fall asleep with the CPAP on. Once I knew we were thinking about conceiving, I went off Lunesta, because you can't use it while pregnant.

I have never really been a happy camper with this CPAP thing. It just seems like no solution is good enough to actually stick. Now that I have children, I have too much at steak to just sit around in a dazed fog all day, like I did before.

Before i was pregnant, my sleep doctor made a comment to me (unsolicited), that my tonsils looked a little big, said I might benefit from the surgery, referred me to a good ENT surgeon. He had nothing to gain from me getting the surgery...he didn't even know the surgeon, and later on asked me what I thought of her, because he wasn't sure. I wasn't looking to get the surgery, had heard bad things about it here, but figured I'd look into it, since my compliance was waning. ENT surgeon said the tonsils weren't "that" big, but my uvula was long. She seemed to think it was worth a shot, if "I" was willing to go through with it, but warned me it was like 50/50, and the effects would probabloy wear off if I gained weight later in life, or maybe regardless. I ended up accidentally getting pregnant right before I was supposed to get the surgery. I was upset to miss the chance to have a pregnancy and "new mom" phase, where I felt well-rested. That was the goal. Even then, CPAP wasn't working out well, without the Lunesta. Even with Lunesta, I just don't sleep well attached to something. I figit to get things off me. It's how I sleep. I am hyper-aware of things on me. I sleep best on my stomach, and that's too hard with the CPAP mask.

Well...I have a baby now, and lately I am lucky to wear my CPAP 2 hours a night. I have gotten sooooo "over it." I REALLY want to wear it, but I hate it so much, that I fall asleep, meaning to put it on, but don't. Trust me, I want to wear it. I feel like crap the next day, and I can barely focus on being a mom, which i hate (not focusing). But I can't bring myself to fall asleep with it on.

I know that this forum is very "pro"-"make CPAP work." But, it is so difficult, getting up for nighttime feedings. I have that many more chances to fail to wear the mask (yet, also, to succeed). I have a hard enough time putting it on in a sleepy haze ONCE a night, let alone, after EVERY feeding (11:30 PM, 3:30 AM, 5:30 AM). Sure, my baby will eventually sleep through the night, but then I may not put it on even when I first fall asleep. Also, we would like to have 2-3 more children. I just can't imagine going through this infant phase again, struggling with my CPAP. It would be so much easier to have a surgery that could not only help my sleep quality but get rid of this drama where I never wear the mask, but deserpately try to. Every morning, I wake up pissed I didn't wear it. But, I can't fall asleep with it on, so I wait until I am really drowsy, which normally fails.

I am just looking for support. Is anyone else in my shoes? Went through the motherhood phase with your CPAP? I guess it could be worse, I could have undiagnosed apnea, then I'd be suffering with no answers. I wish I could just be a normal 30 year old and not worry about this. HAve more kids, and not struggle with either cpap compliance, or the negatives of the fatigue. It would be fine, if I was good at putting it on, and it all worked out.

Where should I go from here? All I see when I look at my options, are the negatives. I'm a positive person, but this has me frustrated. I still want to try the surgery, but am nervous. I think not eating after the surgery would make me loose my milk supply. I would like to continue to have good supply until he's 6 months, then some milk supply up until my baby is 1 year, because otherwise, I will have to buy formula for the few liquid feedings they still require, which I don't want to do. But I still have 7 months to go. Then, I will have to recover with a 1 year old. It all seems like such a hassle. Then what if it doesn't work?

Wahh wah wah.....I know. Just looking for support. What would you do? I worry with a mouthpiece, I'd still have low compliance. I hate anything on me, while I sleep. It's hard to get me "go down." Harder than my baby.

EDIT: So, I just read through the post in the "sticky" part at the top....called "Dealing with Change." It talks about Denial, then Depression, then Head Acceptance and Heart Acceptance. I think I am posting, because I need help navigating where I am in this process, and what I should do about it. If you read that denial section, I say a lot of those things!!!! I wonder if trying to get the surgery is part of teh denial? Denying that I will be dealing with this my wholllllleeee life? I think that is what bothers me. No offense, but many of the people on this board are beyond me in years. That upsets me; makes me feel unlucky. I know many will say they dealt with the symptoms forever, but it still doesn't make me feel better. I am dealing with teh symptoms now, too. I feel that it's unfair that I have to deal with wearing the mask "now." My great grandmother just passed away, and she lived to be over 100. If I do the math right, that's over 70 years of wearing xPAP. I want 4 kids. I want my husband to find me sexy, and I want to fall asleep in his arms. Just one night. Which merges into two.....which turns into frustration because then I'm exhausted.

Should I just ACCEPT, and WEAR it? I can't get over the hump. And physically, having a hard time getting comfy wearing it. Like I said, I'm a stomach sleeper. Ideally, I like to be cuddled to sleep, then roll onto my stomach after about 30 minutes. How can I make that work!!!! I can't do either (cuddling or stomach sleeping) while wearing the mask. That is why I became a Lunesta dependant, just so I could fall asleep with it on. When I move, it pulls off. If I tighten it, it's too tight. I have found the best mask for me already.

How do I accept this? I think I am psychologically not allowing myself to ADAPT how I fall asleep.

But also, maybe surgery IS the best option for someone like me?

Is it denial?

[deerhound]

49er's right

[CAsleep]

Thanks. What about surgery? Given what I said, should I try that option at this point, and if it doesn't work, go back to trying this? No matter what, I'm sure the surgery will wear off and I'll be back to cpap, but maybe it'll be at a time in my life when I"m better at falling asleep with it. I think once I make the decision about surgery or no surgery, I'll be able to more fully commit to it, if that makes sense. Right now it doesn't seem like my only option, and I think that is why I can't "give it my all." Like right now I"m giving it maybe 80%. Still trying, but could try harder.....but the surgery dangling there in front of me is what's distracting me.

[49er]

Thanks. What about surgery? Given what I said, should I try that option at this point, and if it doesn't work, go back to trying this? No matter what, I'm sure the surgery will wear off and I'll be back to cpap, but maybe it'll be at a time in my life when I"m better at falling asleep with it. I think once I make the decision about surgery or no surgery, I'll be able to more fully commit to it, if that makes sense. Right now it doesn't seem like my only option, and I think that is why I can't "give it my all." Like right now I"m giving it maybe 80%. Still trying, but could try harder.....but the surgery dangling there in front of me is what's distracting me.

Hi again CAsleep,

Personally, since the success rates are 50/50 and can be quite painful, I would not do it. Also, if I remember correctly uvula surgery removal success rates are based on a 50% apnea reduction and not on whether the AHI is reduced to 5 or below which is the ideal standard.

If you really want to do this, please do your homework very carefully.

49er

[Mgsnorer]

Dear CAsleep,

You post is breaking my heart.  I don't blame you for feeling resentful of having to deal with this at this phase of your life.  While I have many health problems now, apnea being the least of them, I am so grateful that when my kids were little, I was really strong and healthy.  Having a 4 month old is difficult enough even without dealing with the CPAP.  The only advice I have is to perhaps wait until you are done nursing to make any decision about surgery.  A hasty decision might lead to many unanticipated results and all the guilt and regrets that go with them.  Keep your nutrition up and whatever else you can control to feel as good as you can.  I remember that when I was able to sleep 3 hours between feedings, I felt dramatically better.  Could you make that a CPAP goal, at night or during the day while the baby naps? Even for non CPAP moms, sleep was always a huge area of frustration at every mommy and me class that I attended. I hope you have a good circle of other mom friends as I always thought that the hardest place to be was at home. Letting the world entertain the baby might leave you feeling a little less guilty about being so tired.

Hang in there, this infant stage is brutal, but fleeting in the long run.

Best, Maureen

[ChicagoGranny]

Thanks. What about surgery? Given what I said, should I try that option at this point, and if it doesn't work, go back to trying this? No matter what, I'm sure the surgery will wear off and I'll be back to cpap, but maybe it'll be at a time in my life when I"m better at falling asleep with it. I think once I make the decision about surgery or no surgery, I'll be able to more fully commit to it, if that makes sense. Right now it doesn't seem like my only option, and I think that is why I can't "give it my all." Like right now I"m giving it maybe 80%. Still trying, but could try harder.....but the surgery dangling there in front of me is what's distracting me.

What kind of surgery are you talking about? You mentioned tonsils and uvula.

I would not let anyone touch the uvula or soft palate. Get a second opinion from another ENT surgeon about the tonsils. A good ENT who is experienced with sleep apnea can give you an opinion about whether or not tonsils removal would help reduce the severity of your sleep apnea.

I can tell you about CPAP, once I committed to it and began to reap the benefits I vowed to never sleep another minute without it.

[Wulfman...]

I would suggest getting a fully data-capable machine so you can monitor your therapy. That should be priority #1. They're very reasonably priced and some lightly-used ones are frequently listed for sale here by reputable sellers or new ones can be obtained from CPAP(dot)COM.

I can't find where you've listed your pressure and other settings. That would help, too.


Den

.

[Julie]

See your other post for more answers.

[LSAT]

CAsleep....You joined this forum 3 years ago. What's been going on since then? If you were diagnosed and started treatment at that time...before baby...you would most likely be adjusted by now.

[chunkyfrog]

Four months after delivery: a mother can experience post-partum depression up to a year later.
See your doctor--if he brushes you off, see another doctor!
You may need more help than we can offer here.
But here's a HUG until you can get real help.

[BlackSpinner]

Four months after delivery: a mother can experience post-partum depression up to a year later.
See your doctor--if he brushes you off, see another doctor!
You may need more help than we can offer here.
But here's a HUG until you can get real help.

This!

You need help with the emotional adjustment. You need to see and talk to someone professionally. Nobody here can give you a one word solution. You have the solution in your hands but refuse to use it. That is post partum depression - there is help for that but you have to go and get it. Preferably not by driving through a barrier at the capitol.

[robysue]

CAsleep,

I wish you well as you continue on your own, individual journey of dealing with this hideous chronic condition.

I'm someone who has had a very long and very difficult adjustment to PAP therapy. I can identify with how you feel when you talk about the "drama surrounding [your cpap]" and your efforts to make yourself use the machine. And yet, one thing in your post stands out and even makes me envious of your situation: You write:

I finally got diagnosed at 27. My AHI was on borderline of mild and moderate, but the CPAP helped with my fatigue, greatly. When I don't wear my mask at night, i PAY!!!! I am sooo drowsy, and my eyes won't stay open. It's awful, reminds me of life before I got the CPAP. (emphasis added)

There are some forum members here who have never felt any better while PAPing every night. And there are those (like me) who felt horribly worse using the PAP every night, all night long than we did pre-CPAP for a very, very long time.

I point this out because you have been lucky enough to feel much better while PAPing than without it. And you know that. And you know that how you feel during the daytime after a night of PAPless sleeping, you feel rotten again.

So it seems to me that you need a way of keeping this fact front and center in your mind during your current struggles to use the machine on a consistent basis.

So what kinds of things could you (and your hubby) do that would help you remember how much better you feel when you do succeed in sleeping with the mask all night long. As silly as it sounds, maybe a visual reward system and/or a journal might help: A gold star on the calendar for every day you manage to sleep with the mask and some kind of silly, but fun reward when you get seven in a row for the first time might actually provide you with some motivation to simply put the mask on your face at night.

And a simple journal: Reflect for a few minutes at night on how you felt during the daytime: Enough energy to get through day in one piece? (And measure "enough energy" keeping in mind that no new mother really has "enough energy" in the objective sense.) In a good mood most of the day? Tired, exhausted, and sleepy all day---in the sense of "beyond what a typical new mother feels?" Cranky and crabby due to lack of sleep?

And then you need a strategy (that involves hubby) for bedtime. Does putting the equipment together for the night start the "I hate this" feelings? (It does for me when I'm really angry at the machine) If so, maybe hubby can take a bit of the pressure off. It sounds silly, but I usually ask my hubby to fill up the humidifier each night. Just that one little thing means that there's one less thing for me to deal with when I'm actually climbing into bed for the night. And get the equipment ready well before bedtime so that once it is time to fall into bed, all you need to do is pull the mask on (instead of doing everything that has to be done.)

And work with hubby to find a way to cuddle. This took my husband and I many many months of work. And part of that time was spent in some serious miscommunication: At the time I started PAPing, hubby started sleeping on the far, far side of the bed and never touched me. I thought he was "rejecting" me; he thought I needed to not be disturbed by him at all because of my nightly struggle just to get to sleep with the hose on my nose. After a talk that way, way overdue, he was able to tell me exactly why he was choosing to sleep so far away and I was able to tell him that I needed him to cuddle. After that talk we started working (together) on figuring out a way for me to cuddle into him. (It's actually much easier if the PAP-less spouse can just curl around the PAPer; but I didn't like that since hubby wound up putting too much of his weight on my side)

And finally start working on the anger. Anger has been one of my biggest issues. And for me, it's one issue that keeps on going like the energizer bunny at times. And yet, anger is capable of eating you up from inside. About a year after starting to PAP at the suggestion of my then sleep doc's PA I started seeing a psychologist who specializes in CBT for learning how to deal with the anger. It's helped some, but even now the anger comes and goes in waves. And when the anger threatening to rage out of control, everything is much much harder, including the task of masking up each night. Some of the things that I do to try to manage the anger include: Yoga and meditation; deep breathing and consciously trying to step back from the situation when I'm really mad; and being more conscious of the words I use to describe my anger: As stupid as it sounds, consistently substituting language such as "I really don't like using the PAP at night" instead of "I hate the machine" allows the anger to fade over time rather than feeding it. And that can help. Have I "solved" my anger problems? No, not by a long shot. But at least my bedtime is no longer a nightly battle between me and the machine that is constantly threatening to explode into a raging hissy fit on my part.


You also say you have real problems getting and staying asleep with the CPAP on. And you've used Lunesta in the past to try to get over this hump. Some of your comments include:

I used Lunesta for the first year or two, to help me fall asleep with the CPAP on. Once I knew we were thinking about conceiving, I went off Lunesta, because you can't use it while pregnant.
...
Even then, CPAP wasn't working out well, without the Lunesta. Even with Lunesta, I just don't sleep well attached to something. I figit to get things off me. It's how I sleep. I am hyper-aware of things on me. I sleep best on my stomach, and that's too hard with the CPAP mask.
...
Well...I have a baby now, and lately I am lucky to wear my CPAP 2 hours a night. I have gotten sooooo "over it." I REALLY want to wear it, but I hate it so much, that I fall asleep, meaning to put it on, but don't. Trust me, I want to wear it. I feel like crap the next day, and I can barely focus on being a mom, which i hate (not focusing). But I can't bring myself to fall asleep with it on. (emphasis added)
...
It would be so much easier to have a surgery that could not only help my sleep quality but get rid of this drama where I never wear the mask, but deserpately try to. Every morning, I wake up pissed I didn't wear it. But, I can't fall asleep with it on, so I wait until I am really drowsy, which normally fails.
...
I worry with a mouthpiece, I'd still have low compliance. I hate anything on me, while I sleep. It's hard to get me "go down." Harder than my baby. (emphasis added)
...
Should I just ACCEPT, and WEAR it? I can't get over the hump. And physically, having a hard time getting comfy wearing it. Like I said, I'm a stomach sleeper. Ideally, I like to be cuddled to sleep, then roll onto my stomach after about 30 minutes. How can I make that work!!!! I can't do either (cuddling or stomach sleeping) while wearing the mask. That is why I became a Lunesta dependant, just so I could fall asleep with it on. When I move, it pulls off. If I tighten it, it's too tight. I have found the best mask for me already.
...
How do I accept this? I think I am psychologically not allowing myself to ADAPT how I fall asleep.

CAsleep, I'd encourage you to really read these comments you've made and reflect on them. I remember feeling very much this way for the first 6 months of PAPing, when my daytime functioning when from "fully functional pre-CPAP" to "waking dead" with PAP. And bits and pieces of these feelings still come back to haunt me at times, but they no longer overwhelm me.

So how to get over this hump?

First of all, you do need to ACCEPT your situation both rationally and emotionally. And you do need to ACCEPT that the mask is currently the gold standard for treating OSA. Surgery may or may not work at all; if it works, it may work for 2 years or 5 years, but it probably will NOT work for the rest of your life. Surgery can make it harder to use a CPAP in the future---particularly when "trimming" the uvula is involved. An oral appliance may be a solution for you and many, but certainly not all, patients feel that an oral appliance is "less invasive" when it comes to their sleep environment. (But compliance is an issue with oral appliances since some patients do experience real pain. And verification that the oral appliance is indeed working therapeutically is also an issue.)

Let's assume that you decide to make another effort at trying to make CPAP work for now. After all, you've already got the equipment and you also know that when you use the CPAP at night, you feel better then next day. That should be powerful motivation to get beyond the current hump on compliance and figure out a way of getting yourself to use the damn machine every night.

1) Hypersensitivity issues
I remember the "I can't get to sleep with this thing on my nose' problems all too well. Simply putting the mask on my nose made me wake up faster than a triple shot of expresso. But you need to do some real analyzing what the problems are. You say you can't sleep with anything touching you. OK: Does that mean you sleep nude? (Some people do and some of them do sleep nude because they really can't stand PJs touching their body.) Do you sleep without any covers on top of you? When you snuggle, does hubby's stubble bug you? In other words, you need to analyze just how pervasive the "I can't sleep if things are touching me" feeling really is. If it's largely confined to the PAP machine---i.e. you can get to sleep while snuggling into hubby's two-day beard stubble and wearing fuzzy pjs and lying underneath a bunch of blankets---then you know the problem is actually the CPAP-induced sensory overload instead of a general oversensitivity. But if sensory issues are a serious problem even when you have no intention of using the CPAP, then you know that general hypersensitivity is an issue.

If the problem is largely combined to the feeling of the CPAP itself, you can work on acclimating yourself to the machine during the daytime. Try using the machine while awake for 15-30 minutes while watching tv or reading for a few days and slowly up the amount of time you spend with the mask on your nose during the daytime to an hour or so. This may help your brain sort out how things are supposed to feel with the machine on and it could cause less stress at night when you put the mask on your nose. If you can't handle 15 minutes of daytime PAPing, then start with 5 or 10 minutes. If need be, start by simply holding the mask near your nose as long as you can stand it.

If the problem is not the feeling of the mask itself, but rather assorted other sensory things that occur when you put the mask on in your bed at the beginning of the night, what to do depends on the problem(s). Common sensory stimuli that bother some, but not most, new CPAPers include: the noise(s) in a quiet bedroom; the feel of the exhaust flow hitting your arms or chest; the touch of the plastic/silicone against your skin; rainout problems; a feeling of too much air being blown down the throat; a feeling of not enough air coming through the mask to breath comfortably; a feeling that the breathing is just not quite "right"; difficulty exhaling against the pressure; air getting into the digestive track; air tickling the back of the throat; leaks waking you up; worrying about leaks; worrying about moving triggering leaks; getting tangled in the hose when turning over; air being blown into the eyes; air rushing into the mouth; feeling like the pressure is blowing your mouth wide open; and more. The thing about all of these sensory problems is this: While most new PAPers don't experience most of these problems, enough PAPers experience any one of these problems that you can get useful tips on what to try. But you need to be able to identify specifically what kind of sensory things are bugging you.

But if CPAPing is just part of a more general problem with hypersensitivity, it may help to figure out whether you are simply a "highly sensitive person" and learn some coping techniques that may help with areas of your life beyond simply getting use to CPAP. You can start by looking at the things that Elaine Aron has posted on her website [url=http://www.hsperson.com/]The Highly Sensitive Person. Some of what helps is just being able to understand that the hypersensitivity is basically one end of a normal range of sensitivity in human beings. Another thing that helps is knowing that even a highly sensitive person can grow accustomed to a new (and initially) unwelcome set of sensory stimuli simply by giving themselves enough time and exposure to the new, (initially) uncomfortable, but necessary stimulus. As someone who is highly sensitive about a huge number of things, I think the thing that ultimately got me over the hump was nothing more than persistence: I simply kept using the dang thing long enough for my highly sensitive body to finally grow accustomed to the feel of the mask on my nose each night.


2) Sleep hygiene issues
Since you know that you have real trouble falling asleep with the machine on your nose, you will need to be conscious of sleep hygiene issues. Some of the recommended things for sleep hygiene are simply impossible with a new baby in the house, but others are not. One thing that you do need to work on is making the bedroom and bed an inviting environment instead of a hostile one. And right now, you regard your bed and bedroom as hostile because of the machine. And that's more of a psychological problem than anything else. Tone down the anger towards the machine and do the maintenance away from bedtime and that should help.

You also need to reserve the bedroom for sleep and sex. And if you're lying in bed AWAKE for more than 30 minutes because you have the mask on, the answer is NOT to take the mask off and go to sleep. (That teaches your brain and body that you really don't believe you need to make this work.) Rather, if you find that you're still AWAKE and unable to get to sleep with the mask on, you need to leave the bed and bedroom. Go do something quiet, relaxing, and fun until you feel sleepy enough to return to bed an put the mask back on. Yes, at the start this is highly frustrating. That's why you need to do something fun when you get out of bed---you don't want to view getting out of bed as "punishment" for doing something wrong. Rather, it's just an acknowledgement that the body is just not sleepy enough yet get to sleep.

Turn the clock around and do NOT look at it when you wake up in the middle of the night. Clock watching often makes an insomnia problem worse. If you don't look at the clock, you won't start calculating how much time you think you've been awake during the night.

Make sure you get some kind of fresh air and exercise everyday---even if it's just a brief stroll around the block with the baby. Try not to nap unless the baby is napping. For now---I'd say don't worry too much about napping PAPless. But if you wake up more exhausted from the PAPless nap than you were before taking it, then you know that you will need to make NAP=PAP in the not too distant future.


3) Don't worry so much about succeeding; but do worry about trying.
Life with a new baby is chaotic enough. And sleepless enough. You need to focus your daytime energy on your family and enjoying the baby even with all the responsibilities that come along with parenthood. During the daytime you should try to not focus too much on the OSA and the nightly battle with CPAP. Use all the new baby stuff (the feedings, the diapers, and the playing with baby and everything else) to keep you from focusing on the OSA and CPAP. In other words, try to chill out about the CPAP. Try to get to the point where you don't think about it after you get up for the morning until it's time to spend a few minutes putting the equipment together (say right after supper). And then don't think about the OSA or the CPAP after that until it really is time to crawl into bed.

If you decide to get compliant with CPAP therapy, you will be able to make it work. It may take some time. But remember: You are one of the lucky ones who can tell a big difference in terms of daytime functioning when you sleep with the CPAP. Use that to keep yourself motivated.

[Janknitz]

Good advice above. I second the notion that you need to be checked for postpartum depression. It manifests in weird ways. I was having such difficulty nursing I made an appointment with my doctor to demand bilateral mastectomies. Fortunately he would not agree to refer me to a surgeon, but he failed to recognize the postpartum depression. I suffered two more years before someone finally pushed me to get treatment when I was actively suicidal. And I was not dealing with CPAP!
Even if you don't think that's it, please talk to your doctor now.

Have you heard of the Tap Pap? It's a nasal pillow mask held on with a mouthpiece (like a "boil and bite"). No straps. With that and a hose hanger you could move around much more easily and perhaps even sleep on your stomach. And without straps or headgear it's much easier to put on. With very little touching your face. That might be more comfortable than anything else, less obtrusive. It might be worth a try.

You sound determined to try the surgery. You don't need our permission. You understand it has a poor chance of success as you define it--meaning getting off CPAP. But you see that as your only hope. If you can find a willing surgeon and you're ready to accept the risks then go for it. Maybe you'll be the one it really helps. But I think you won't be happy until you find out. Just make sure it's a rational decision, not the irrational product of postpartum depression.

[ems]

This is going to sound lame after reading the above posts, but I'm going to mention it anyway. Have you considered trying a different mask... along with the above suggestions. I spent $$$ on a CPAP bed pillow only to find that an old foam pillow was better than any pillow I tried. I use the Swift FX for her... and found that I can put it on in less than 10 seconds, and I can "bury" my head in the foam pillow. I sleep on my side but I'm sure you can sleep any way you'd like with this mask and foam pillow. Also, google Bella Loops. The Bella is used with the Swift FX but instead of the straps it comes with, the Bella has tiny silicone straps that go around your ears. I think the easier you can make this for yourself, the faster you'll start using the mask every time you go to sleep.

I wish you the best in finding what works for you.