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

[Snufkin]

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.)

[zoocrewphoto]

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.)

Can you add your equipment to your profile (text please)? Then we can give you more help.

Things do get better. Back when I started, I would swear at my mask in the middle of the night when I had fitting issues and couldn't get it to fit without leaks, which kept me awake. It took about 6 weeks, but I mastered that problem.

I wanted to add that sleep without the cpap is not just lesser quality. It is causing long term damage because of oxygen deprivation. How bad depends on how many events you have, how long they last, how they are spaced, and how madly your oxygen level goes down.

Most of my nights are okay to good. On rare occasions, I have an awesome night. But if I have a few missed nights or partial nights in a row, I start feeling like crap again, like before I started treatment. I can feel the difference. Even my perception was that I slept well, I can feel the results of sleep apnea.

[Snufkin]

Can you add your equipment to your profile (text please)? Then we can give you more help.

Finally figured out how to do that. My machine wasn't listed, so I entered it in the comment box. I'll post this and see if it appears.

[RogerSC]

There are a couple of ResMed S9 VPAP entries under "manange equipment", one of them must be the one that you have *smile*. One of them is almost identical to what you've entered manually, so it probably doesn't matter.

For me, having the motivation to make it work was the key. I have some idea of what happens if you don't make it work, so that kept me going until I got it right *smile*. Although, every night it is the same thing, I know that I need to do this for my health and those that love and depend on me.

[zoocrewphoto]

Can you add your equipment to your profile (text please)? Then we can give you more help.

Finally figured out how to do that. My machine wasn't listed, so I entered it in the comment box. I'll post this and see if it appears.

I used to have a lot of tickles and odd sensations when I started. I also have the quattro fx. I think part of it is that we not used to having an alien stuck to our face, so every new sensation is weird and grounds to remove the mask. I had to try and force myself to ignore the tickle and soon found that it would go away. I also check carefully to make sure my mask doesn't have any cat hair inside before I put it on. Those tickles are real

[Jeannh]

Snufkin: how long have you been using it?

[johnthomasmacdonald]

i absolutely hated this whole thing and had no hope at all of ever managing it. It took me forever to fall asleep and then I would wake up after an hour or so and i felt much worse than i did before starting the whole process. The major change that worked for me was going over to the Resmed S9 bilevel machine which was so much more comfortable for me. I had been feeling like i was suffocating when trying to exhale against such high pressure. It didn't help my ahi numbers much but it gave be the hope that i could manage it. In the end, there were lots of little things - a poster by the name of Cosmo was a big help with all the various toys and devises he tried and shared the effects with us. I treated it more like a game. Things that helped me were going through many different masks until i found one that worked for me, the use of cushions from padacheek to make it more comfortable while reducing leeks, finally going over to an ASV machine to get my ahi number down.

What might help would be to post the problems that you are having in the most specific manner possible so that others here can try to provide you with very finely tailored solutions.

It took me about 6 months before it started to get better.

[Snufkin]

Snufkin: how long have you been using it?

On and off for about a month, first with the CPAP and now with the BPAP (or I guess it's a VPAP?)

[Snufkin]

There are a couple of ResMed S9 VPAP entries under "manange equipment", one of them must be the one that you have *smile*. One of them is almost identical to what you've entered manually

Weird, my drop-down list only shows one ResMed model, and that's the S8.

[Snufkin]

Thanks everyone for your input. This whole "it gets worse before it gets better" thing is just really hard to work through. Especially when you're already running on fumes. Reading other posts and replies to those posts really helps too.

[robysue]

Snufkin: how long have you been using it?

On and off for about a month, first with the CPAP and now with the BPAP (or I guess it's a VPAP?)

Snufkin,

You won't want to hear this, but the "trying on and off" is part of your problem. Every time you allow yourself to fall asleep without the mask on and sleep all night maskless makes it even harder the next time you do decide to try. By using the machine "off and on" you're making yourself repeatedly go through the "First night with PAP" problems every time you decide to try sleeping with the machine.

The first step towards making this crazy therapy work is to actually force yourself to use the machine (or at least make an honest attempt to use the machine) every single night for a few weeks to a couple of months. The only way your body, brain, and mind really learn to both accept the presence of the mask and to sleep with this alien thing on your face is to keep doing it night after night after night ...

[Snufkin]

You won't want to hear this, but the "trying on and off" is part of your problem.

The "on and off" was because of unsolved problems, like swallowing air which led to incredible discomfort, waiting way too long for the supply company to get me a different mask or the new machine I'd been prescribed, etc.

But now, with those major problems solved, yes, I'm suddenly hittting a wall where all my early commitment and enthusiasm seems to have drained away. You are totally right, I should not be doing nights where I "cheat," but for the past week or so that's what's been happening. I've got some gnarly other stuff going on in my life right now because, you know, life happens. The upshot is that at 8:30 when my kid falls asleep, I feel like I have absolutely no decision-making power left in my brain, and I fall asleep too.

I know I've got to get back on the wagon. That's what motivated me to look up this forum.

[Jeannh]

I know just what you mean. I promised myself i'd give it 3 months; I'm 9 weeks in. I've tried a bunch of masks (thank you cpap.com for having generally-free return insurance). I scrutinized every leak, every central, got a hose-holder, used it, then didn't, then tried it again. Tried liners and cozies from pad-a-cheek (which I HIGHLY recommend). Swore off all headgear, then accidentally found one that I don't even notice. Turned the humidifier all the way up, then down too far before I found the spot that didn't give me a dry cough or use up all the water.

Most of all, I have this patient, kind group here that answers every question I can think of. And, they never told me to stop whining, which I do :).

Convinced it wouldn't work for me, I started talking to people I know, and guess what? Everyone I talked to that used xPAP every night told me it changed their life! I couldn't figure out what I was doing wrong...then just last week, people were telling me I looked more rested, and I realized it was getting better, VERY slowly.

I still leak, but less. I'm still tired, but can now go out after dinner. I no longer get up at 4:30am. I can finally turn from side to side without a big interruption in sleep. Last night I slept ALL night, without even getting up too pee! That was the very first night- so know there IS sleep waiting out there for you !!

Keep at it, every night. It took us years to learn to sleep badly, it's bound to take a while to learn to sleep well again. And, in addition to feeling better, we get to stop starving our brains and hearts of oxygen.

Keep at it, every night. Keep posting, people will help.

[hegel]

Keep problem solving! Often one simple thing--finding the right mask, the right pressure--takes you right through that horrible wall! For me, it was nasal pillows.
This style mask might help you with the itching, etc.

But yeah, after sleeping one way all of your life, suddenly having to adapt to cpap...it can take time.

[robysue]

You won't want to hear this, but the "trying on and off" is part of your problem.

The "on and off" was because of unsolved problems, like swallowing air which led to incredible discomfort, waiting way too long for the supply company to get me a different mask or the new machine I'd been prescribed, etc.

Guess what. I went through three months of hell when I first started PAPing with monstrous aerophagia that felt and looked like I'd swallowed a basketball almost every single night. And an insomnia monster growing fat and strong on the aerophagia and the bedtime dread the aerophagia inspired. After a switch to BiPAP at three months into PAPing, the next three months of PAPing were more like purgatory than hell, and I was content to call that "progress."

All in all, it took me six months, a change from CPAP to APAP to BiPAP, two additional titration studies, and something like five different changes to my official pressure prescription to rein in my aerophagia more or less for good. (I still get aerophagia on occasion, but it no longer feels or looks like I swallowed a basketball.) And yet---I didn't take a single night off from PAPing. I knew myself well enough to know that if I quit for even one night it was going to be two or three times harder just to make myself mask up the following night.

But now, with those major problems solved, yes, I'm suddenly hittting a wall where all my early commitment and enthusiasm seems to have drained away. You are totally right, I should not be doing nights where I "cheat," but for the past week or so that's what's been happening. I've got some gnarly other stuff going on in my life right now because, you know, life happens. The upshot is that at 8:30 when my kid falls asleep, I feel like I have absolutely no decision-making power left in my brain, and I fall asleep too.

As I said before: The first three months of PAPing were hell for me. And the next three months were purgatory. And yet I didn't take a single night off from PAPing because I knew that if I did "cheat" even for one or two nights, it was going to be two or three times harder just to make myself mask up the following night.

In the end, a significant part of my motivation to keep on PAPing during the darkest of the dark nights in first six months was the fear that if I didn't mask up tonight, I'd never find the courage to mask up again and that I'd never succeed in making this crazy therapy work.

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.