Oh man I can't stand this thing!!!

robysue wrote:
And at the end of six months of hell and purgatory, a tiny reward finally came my way: In my sleep log for the fighting the insomnia monster, the phrase, "Woke up with no hand and foot pain this morning" started to appear on multiple mornings each week. I'd been waking up with hand and foot pain for years---the pain felt as though I'd been sleeping with my hands and feet tightly clenched in fists all night long. On the worst mornings I'd actually have to pry my hands out of fists when I woke up. This hand and foot pain would (slowly) get better as the day wore on, but it was there each and every morning pre-CPAP.

That actually reminded me of another benefit of cpap. My arms and hands used to fall asleep all the time because I have always been a tense sleeper. I would clench my fists while I sleep. I don't do that anymore. It's hard to notice these improvements because it is something bad that gets to be less common and then fades away. It isn't as noticeable as the things we hope for (more energy, sleeping straight through the night, etc).

Oh yeah been there! There were many nights I wanted to throw the mask against the wall. You just have to keep at it. Maybe talk to your DME or RT. They maybe able to help. Like everyone says, you gotta keep at it. Good luck!

Maybe try a different mask. I know its impossible for me to sleep with a full face mask.

zoocrewphoto wrote:

robysue wrote:
And at the end of six months of hell and purgatory, a tiny reward finally came my way: In my sleep log for the fighting the insomnia monster, the phrase, "Woke up with no hand and foot pain this morning" started to appear on multiple mornings each week. I'd been waking up with hand and foot pain for years---the pain felt as though I'd been sleeping with my hands and feet tightly clenched in fists all night long. On the worst mornings I'd actually have to pry my hands out of fists when I woke up. This hand and foot pain would (slowly) get better as the day wore on, but it was there each and every morning pre-CPAP.

That actually reminded me of another benefit of cpap. My arms and hands used to fall asleep all the time because I have always been a tense sleeper. I would clench my fists while I sleep. I don't do that anymore. It's hard to notice these improvements because it is something bad that gets to be less common and then fades away. It isn't as noticeable as the things we hope for (more energy, sleeping straight through the night etc).)(emphais added)

I've been PAPing for 3+ years. I've yet to sleep "straight through the night." Pre-CPAP I'd sleep "straight through the night" in the sense that I would not remember any wakes from the time I went to sleep to the time I woke up for the morning on most nights. The CPAP-induced insomnia monster has been an unwelcome addition to my lifestyle in this CPAP adventure. It's an on-going up and down battle. Some weeks and months, the insomnia monster is pretty well reined in and I feel pretty decent when I wake up in the morning. Some weeks and months, the insomnia monster grows fat and strong and affects the quality of my life in some pretty profound ways.

More energy? I'm one of those rare folks who was pretty asymptomatic before my diagnosis. Daytime energy was not a huge problem. Yes, I'd get physically tired (more from pain than anything else) every day, but I wasn't physically exhausted to the point of not wanting to do anything. And excessive daytime sleepiness was NOT a problem for me before my CPAP adventure began. In terms of energy, I have to say on the good days I'm back to where I was pre-CPAP: Functioning with enough energy to last the day and NOT being sleepy during the day. That's a huge improvement over how I felt during the first six months of PAPing when my daytime functioning went down the drain and I felt and functioned about 100 times worse than pre-CPAP.

But (and this is an important but): With the reduction in pain that can only be due to PAP (because nothing else was done to treat that hand and foot pain during the first six months of PAPing), I physically feel better now. And that is why I keep on PAPing: One less source of daily pain makes me feel better. Along with the fact that I no longer kick hubby every night and thrash around in bed tearing the covers up horribly. I keep on PAPing because in spite of the insomnia, I simply feel better on the best days because I have so much less pain in my hands and feet and everywhere else in my body. And intellectually I know that PAPing is doing the rest of my body some good in terms of minimizing my risk from some the nastier comorbidities of untreated OSA in the long run.

robysue, thank you for the update. We know that sleep apnea is associated with inflammation, and we know that pain is associated with inflammation, so it is nice to hear stories of reduction of pain with the use of CPAP. What the mechanism for the improvement is, we can't know at this stage. However, I know that when my migraine stopped/became less severe, I was VERY HAPPY to take that. Like eating a healthy diet or taking a good quality supplement, the use of CPAP does not miraculously cure whatever ails us - it is a slow process of recovery from a bad situation affecting much of our bodies. It takes a great deal of persistence to be able to wear the mask every night, to try and figure out just what is causing the leaks and arousals that so disturb our sleep. And to put the darn mask back on when we do wake up - especially if we don't remember taking it off. So congratulations on the progress you have made so far. For me, stress seems to play a huge part in how well my AHI stays low; that is also a work in progress! Good luck with your battles, whatever they are about.

Sleepy... I hate the mask as much as you do and still struggle with it. Sometimes I route the hose over my pillow and sometimes it ends up strangling me and I pull the thing off in my sleep. Sometimes I throw it over my comforter. The key is to keep putting it back on no matter what... if you know you have taken it off. And if you don't remember, put it on faithfully the following nite. Sometimes (maybe 3 times in total) I have slept all night with it on. I did last night and I don't ache as much this morning. I hate the thing... but I know I need the oxygen it provides. I tell myself that every night as I try to get comfortable and fall asleep.

We should start a, "Who Really LOVES their Mask" thread. I doubt there will be many on that list!

Snufkin wrote:I've been trying to be upbeat about this, but I'm ready to crack. Every time I solve a problem, I hit a new problem. My new issue is just general annoyance, itching and tickling and little places where the seal feels lumpy. I find it difficult or impossible to fall asleep, especially after a first sleep cycle and awakening.

I will have to try mask liners, as people suggested, but right now I'm suffering from really low morale.

Every night my choice is between about 6 hours of unpleasant interrupted sleep (the first few with the mask, the last few without); or nine solid hit-the-pillow-and-pass-out hours of lower quality sleep. It feels like no contest, except that there's this promise of the machine delivering nirvana sleep, if I can just get used to it. Any words of wisdom would be appreciated.

Oh, and I'm about to lose my sleep center coverage. My employer is switching insurance plans, and they now "cover" the local sleep center at a usurious less-prefered-provider rate. (Which means I can claim that they don't have anyone in the network and make them authorize out of network.)

Maybe you've answered this somewhere else, but have you tried a different mask? Many people love full face masks. But a lot of people don't like them at all. Too many leaks when you move around, too much mask on your face, feelings of claustrophobia, facial rubs and sores, and on and on. Have you considered a nasal pillow mask? There's far less on your face. Less on your face means less chance that you'll be uncomfortable, and less likelihood that you'll yank it off your face after 2 hours. And some nasal pillow masks allow you to route the short hose up over the top of your head, keeping the hose out of your way during the night, so you can roll over like you used to do, unencumbered, like normal. A hose holder helps with that too.

When I switched from a nasal mask to the nasal pillow mask (1 week into my treatment) I found a world of difference in comfort. When I added the contour pillow, and made sure to sleep on the edge of it, with the mask in the cut-out area, even better. Routed the hose to the top of my head .. better still. Got a hose holder .. wasn't getting wound up or woken up anymore! All these little changes can add up to a good night's sleep. I strongly urge you to add these things to your lexicon.

The other thing I did was, I told myself, "You do not have permission to take the mask off at night. You must keep it on all night long. No excuses. Period." You'd be surprised at what a pep-talk to yourself can do to create a positive outcome. I stuck with it, all during those first few months of adjustment, and it worked.

I was diagnosed with severe obstructed sleep apnea. I didn't get a good nights rest in nearly 2 years. After having been diagnosed I struggled with various CPAP machines and masks. Upon extensive research along with trial-and-error I discovered the Resmed S9 Autoset with H5i, Climateline, and the Quatro Air Full Face Mask. It is by far the best CPAP/APAP machine I ever used. I sleep all night without any of the issues I had from previous machines.

I sleep with a washcloth next to me so if I get an itch, or I feel moisture on my face, I can quickly wipe under the mask. I also use pillows for my body and my head. It is important to fell comfortable, this means using the correct materials to improve your nights rest.

I use to micro-sleep, that no longer occurs. Whenever I would sit down I would fall asleep, that no longer occurs. I have regained the quality of life I had prior to acquiring sleep apnea simply by sleeping with the correct product.