Update: Sleep doc, frustration with self

[snuginarug]

I went to see the sleep doc for my follow up after having the machine for a month. He's a really good doctor. He looked at my data, he talked encouragingly about my progress, praised my efforts. But he just doesn't get it. I feel desperate and crazy. I am sleeping in two and three hour blocks. I'm so tired. I have dark circles under my eyes, which I never had before. I feel like crying, but I can only do that at certain times of the day because I have a nasal mask. Sort of like caffeine, no crying after lunch. Haha, I guess that's slightly funny. I do try to see the funny side of things, but with this it is getting hard. A month and I have improved from sleeping one hour at a time, to sleeping three hours at a time. It's improvement, but it's just not enough. Last night I talked to myself very gently and encouragingly, saying OK snug, you can do it, you can sleep for four hours tonight, it's OK, it's not all night, just a few hours, I'll stop if you want me to, but we really do need four hours to feel good. I managed to get three and a half hours of sleep, and I thrashed about for another half hour. It seems like my sleep is getting worse, even though I know in my logical mind it is getting better. I am not waking up dozens of times an hour anymore.... but I'm not sleeping very deeply either. I am always a tiny bit conscious of the mask. Things really are getting better, things really are progressing. I am having dreams, and some nights I truly do get refreshing quality sleep and wake up feeling good for the rest of the day. But I am so tired today, it is hard to see the forward movement. I just have fixed in my mind, as an unmoveable concept like gravity, that I must make this work. (If that makes any sense?) I keep telling myself it is all worth it. I keep telling myself that the bad days won't last forever. I keep telling myself eventually I will be able to sleep the night through. A problem with all of this is that I had insomnia before cpap. I would sleep four hours, get up, go back to bed and sleep two more. So really getting three and a half hours isn't so bad. But I am so tired now, tired like I never was before. A different quality of tired... not foggy and unconscious like before cpap. More like a really tired toddler, who is throwing a temper tantrum. I'm so tired.

[elena88]

Gosh snug,

Im sorry you are so darn tired.. I think this adjustment takes the wind out of you, even though its shoving it back in.. Its great you are having dreams,
and the quality of the sleep you DO end up getting, Im sure is much better than before.. but being an insomniac, I think it piles on a little more
difficulty with the adjustment. The bad days wont last forever. I know it seems like it sometimes, but you are progressing, and it hasnt been that long..
Keep being positive, and keep talking to yourself and your body, I think that is a fantastic cue..
Hope you get some good rest soon snug!

elena

[brazospearl]

Snug, honey, I wish I could sprinkle some magic sleeping dust on you so you could sleep for about 10 hours straight! The good news about your doctor's visit is that he sees you're making progress. You also see you're making progress, though it's much slower than you'd like. In my completely unscientific opinion, I think it's an excellent sign that the quality of your sleep has changed. You're sleeping better in your 3-hours-or-so at a time than you were previously, and you're tired because you're paying back a big sleep debt. You're on the right track, and you WILL feel better soon, although "soon" is likely to be more distant than you'd like. Stay strong and have sweet dreams!

[auntlala]

one thing you might do is see if your sleep doc can refer you to a specialist in behavioral sleep medicine - i believe i have also seen it referred to as a sleep hygienist. i started working with one when other fixes did not help and the broken sleep issue is gone for me and my quality of sleep has gone from an 8/10 (1 is best, 10 is worst) to a 3/10.

[snuginarug]

Elena, thank you for the kind words and encouragement. It means a lot to be understood.

keep talking to yourself and your body,

This was an idea Blackspinner gave me, to talk to myself. It seems to work better than getting mad at myself. I'm trying to coax my self along, and I'll keep at it.

brazospearl, you're always so kind and encouraging, I really appreciate it.

one thing you might do is see if your sleep doc can refer you to a specialist in behavioral sleep medicine - i believe i have also seen it referred to as a sleep hygienist. i started working with one when other fixes did not help and the broken sleep issue is gone for me and my quality of sleep has gone from an 8/10 (1 is best, 10 is worst) to a 3/10.

I will keep that idea on the back burner. My doc today suggested I try going to bed at midnight instead of 2 am, as I have done for years and years. I don't know. I don't want to hear that. I hate mornings and love night time. I am afraid a sleep hygienist will say the same thing. The idea of getting up at 8, much less 6am, makes me want to scream. So if all else fails, I'll definitely check that out. But it will be a last ditch effort.

Thanks to you all for responding. You guys are great!

[auntlala]

I will keep that idea on the back burner. My doc today suggested I try going to bed at midnight instead of 2 am, as I have done for years and years. I don't know. I don't want to hear that. I hate mornings and love night time. I am afraid a sleep hygienist will say the same thing. The idea of getting up at 8, much less 6am, makes me want to scream. So if all else fails, I'll definitely check that out. But it will be a last ditch effort.

for me at least it was not that way at all - we did a lot of discussing of when i wanted to sleep - for my schedule - we did base what i "lovingly" call the rules on those times but she never told me to go to bed earlier. besides, as i am sure you have discovered going to sleep earlier doesn't necessarily work - for me going to bed an hour earlier just meant i woke up an hour earlier not an extra hours sleep - if it was that easy no one would need the doc's help

[snuginarug]

Things seem to be getting worse, not better. I slept 2:23 last night straight through, and then two one-hour slices. I spent about 6 hours in bed then gave up. I am talking gently to myself, telling myself we need more sleep, we need to stay asleep, we need to keep the mask on. After 2 or 3 hours, I always wake up and can't wait to get the mask off my face. My nose feels unpleasantly damp and the space between my upper lip and nose feels pressed upon. It needs to be pressed upon at least slightly in order to get a seal, I don't think i have the mask maladjusted. It just doesn't feel good. I tried the Quattro, small too small, medium too large. Should I try another mask? Is that the problem? I am still within the 30 day return period. I don't know, I was taking off the Quattro though too. Is the problem that I just don't like things on my face and simply need to go through an adjustment period? I am very tired. I'm still getting the first major benefit I noticed-- the swelling in my ankles continues to improve. So it is working well, and I am getting good therapy. My numbers are great, low AHI, low leak rate. I just can't keep the damn thing on. It's really hard to reason with myself in the middle of the night. The id just sort of takes over in bed. Last night, the best I could do when I felt reluctant was to clasp the mask to my chest and say You need to put this on. Then fell asleep.

Also, apart from the blatant whining, I have a question: my machine makes wheezy sort of dartth vader sounds, very quietly. Is this normal? or should the machine be perfectly quiet?

Auntlala, thanks for the info about your sleep specialist. It makes me less reluctant to ask about one for myself.

[robysue]

If mouth breathing is not an issue, you might want to try a nasal pillows mask. Much less mask and much less to press on your upper lip.

If your nose is unpleasantly damp, maybe you need to adjust the level of humidification?

[jweeks]

I slept 2:23 last night straight through, and then two one-hour slices. I spent about 6 hours in bed then gave up. I am talking gently to myself, telling myself we need more sleep, we need to stay asleep, we need to keep the mask on. After 2 or 3 hours, I always wake up and can't wait to get the mask off my face.

Hi,

I had issues staying asleep when I first started on the machine. It took me a while to build up to sleeping more than a few hours at a time. And it took 6 months to outgrow a habit of getting up for an hour or two after getting 2 to 3 hours of sleep. I think that my body was so used to getting bad or no sleep that once it got to 3 hours using CPAP, it was more sleep than I had gotten in the past decade. My body was happy and ready to get up and go.

What seemed to help me was two things. First, a personal rule that if I wasn't sleeping, I got up and did something. I didn't want to associate bed with frustration in getting to sleep. Second, I went to a totally flexible schedule. I went to bed when I was tired, and I got up when I felt like it. While I was out of sync with the rest of the world for a few weeks, I settled into a routine of going to be between 10:30 PM and midnight, and sleeping between 6-1/2 and 7-1/2 hours.

I do notice that I tend to sleep better on days where I get some exercise. At the same time, if I over-do it, and my legs are really tired, then I don't sleep as well.

I am really curious why you are waking up. There are lots of possibilities. One is that you are having events when you get to a certain sleep stage, and your machine isn't handling those events, so you wake up. It would be interesting to see your data at those times. There are lots of other possibilities. If your doctor isn't overly concerned about it, perhaps he/she is expecting this to clear up on its own. However, if it doesn't, then in a few weeks, I think you are going to want to ask for another sleep study.

I can only imagine how frustrated you must be. I know that I wanted to throw my machine through the window more than once. It wasn't the machine that was bothering as much as it was the masks. But the masks aren't heavy enough to break a window, so I was going to take it out on the machine.

-john-

[snuginarug]

If mouth breathing is not an issue, you might want to try a nasal pillows mask. Much less mask and much less to press on your upper lip.

If your nose is unpleasantly damp, maybe you need to adjust the level of humidification?

I tried nasal pillows at the dme, and hated them. About the dampness of my nose.... I am using no heat, just air passing over the reservoir. When I used no heat and empty reservoir it was too dry. It's like the Quattro, I fall just in between.

But the masks aren't heavy enough to break a window,

I haven't lost my sense of humor yet, that's one good thing.

One is that you are having events when you get to a certain sleep stage, and your machine isn't handling those events, so you wake up. It would be interesting to see your data at those times.

I just looked at data from last night and the night before, and I saw no correlations between events and waking up.

First, a personal rule that if I wasn't sleeping, I got up and did something. I didn't want to associate bed with frustration in getting to sleep

I adopted that rule about a year ago. I've been dealing with insomnia for years now. I used to stay in bed and meditate, but now I get up and do something innocuous. And it's not really a problem with getting to sleep, it's a problem of making my groggy half asleep self put the mask back on before falling back asleep. Kind of like pressing the snooze button in your sleep, and being a half hour late to work. I wake up, take the mask off, rub my poor nose and upper lip, then try to convince myself to put the mask back on. I frequently fall asleep holding the mask in my hand, or unconsciously hang it up in its spot without really waking up. All my best intentions and coaxing and sweet talking for naught.

Second, I went to a totally flexible schedule. I went to bed when I was tired, and I got up when I felt like it. While I was out of sync with the rest of the world for a few weeks, I settled into a routine of going to be between 10:30 PM and midnight, and sleeping between 6-1/2 and 7-1/2 hours.

I am going to try this. Did this include sleeping during the day when tired? I am waffling about the issue of naps. I am bipolar, and my psychiatrist wants me to get sleep any way I can, since the insomnia has been so intractable. So she advocates naps. But I have refrained from naps for the most part since getting my machine, in the hopes it will help me stay asleep.

And it took 6 months to outgrow a habit of getting up for an hour or two after getting 2 to 3 hours of sleep.

I am confused as to whether this is my root problem, just getting used to the whole thing. Or am I having some other problem? We can rule out events waking me, as my perusal of the data indicated no correlation. Is my mask the problem? Something else?

What do you guys think?

[Duckie]

I am trying a sleep hygiene technique my sleep Dr. recommends. I am to get up the same time everyday. So after you have that time she counted back 7 hours ( I was used to 10 hours in bed). I am allow to sleep seven hours only, no naps. I have been doing this for a week and I have had some hard time with it but it is getting better. The am wake up is getting better but do have periods that I would kill for a nap. I am to keep doing it for a month or two. If I am still not sleeping through the seven hours it will be cut back a hour. until I sleep through the 7 hour. I am sleeping longer now. still wake up at time but have been able to go back to sleep. Her other rule is if you can't sleep then get out of bed and sit in a darken room no stimulus at all. When you then get tired go back to bed. The reason for this is so you are so tired when you go to bed, you only associate sleep with bed. She also say a bedtime ritual is good to help with sleep

[snuginarug]

I am trying a sleep hygiene technique my sleep Dr. recommends. I am to get up the same time everyday. So after you have that time she counted back 7 hours ( I was used to 10 hours in bed). I am allow to sleep seven hours only, no naps. I have been doing this for a week and I have had some hard time with it but it is getting better. The am wake up is getting better but do have periods that I would kill for a nap. I am to keep doing it for a month or two. If I am still not sleeping through the seven hours it will be cut back a hour. until I sleep through the 7 hour. I am sleeping longer now. still wake up at time but have been able to go back to sleep. Her other rule is if you can't sleep then get out of bed and sit in a darken room no stimulus at all. When you then get tired go back to bed. The reason for this is so you are so tired when you go to bed, you only associate sleep with bed. She also say a bedtime ritual is good to help with sleep

So, Duckie, was your problem not being able to fall asleep, waking up and not being able to get back to sleep, or sleeping too long? Or all of the above? My problem is staying asleep. I go to bed at the exact same time very night, have been doing so for years. When I started this bed time (2am) I used to sleep until about 10am. Then I started having trouble falling asleep. At some point this shifted, mainly due to prescription sleep aids helping me fall asleep. Now I fall asleep just fine, without sleep aids. Before cpap, I would sleep until 4 to 6am, stay up for an hour or so, then go back to sleep for another couple of hours, averaging a total of approx 6 hours of sleep. My psychiatrist was satisfied with this, as far as preventing a trigger for mood swings. Of course, I was a mess because of the OSA. I have never done anything in bed except sleep for about 4 years now.

Argh, this is so frustrating.

[Jaylee]

Snuggie, I can't remember if you have tried a FFM yet or not. I like it better because the nasal mask presses on my teeth and makes them hurt the next day. I hope you find a solution, this sounds miserable.

[snuginarug]

Snuggie, I can't remember if you have tried a FFM yet or not. I like it better because the nasal mask presses on my teeth and makes them hurt the next day. I hope you find a solution, this sounds miserable.

I tried the Mirage Quattro ffm. Small was too small, medium was too big. I liked the mask just fine, but it leaked like a sieve, in both sizes. FFMs have that advantage, not pressing against your teeth. But I find it much easier to sleep on my side with the nasal mask. I don't know, I may try the pillows again, try a little harder to actually get the darn things placed. The sensation of trying to put them in made me crazy. I actually pushed the RT away from me bodily. But I could try harder to tolerate putting them in. I have adjusted nicely to my pressure, and once I have my mask on, the pressure doesn't register at all. Maybe it would be the same with pillows.

Thank you all for listening to my ramblings. You guys are awesome!

[DoriC]

Snug, It doesn't sound like your mask is very comfortable,what does your leak rate look like? Can you try the UltraMirageFF which may not leak if it's fitted and adjusted properly. As for that Darth Vader sound, we have the M Series and the cflex disturbed my husband's breathing pattern so we turned it off and as a bonus found the machine much quieter. Hope you get some good sleep soon.