A Telling Experiment

[Madalot]

My husband and I are both hoseheads, me being on the Trilogy Ventilator (2/2010) and him using a PRS1 Bipap in cpap mode (11/2011). Since my husband has crappy insurance, I set him up (with the help of several forum members) by titrating him on a borrowed S9 Auto. I found the PRS1 on Craigslist.

Recently, he hasn't been sleeping or feeling quite as good as he had been, but I couldn't really pinpoint a reason for it. With all the rain we've been getting this week, we decided to sleep without our machines for one night (we love listening to it rain and with all the machines going, it's impossible to hear it). When neither of us could feel much difference the next day, we went second night without our machines.

For me, I felt pretty crappy the second day. He felt more tired yesterday, but couldn't say for certain if not using his machine was the cause. But neither of us felt well rested or peppy yesterday.

Hubby and I both agreed to USE our machines last night. BOTH of us feel better today than yesterday. Even if SEEMS that we aren't sleeping/feeling as well as we think we should using our machines, it IS obvious that it's worse without them.

Even though I can't confirm that my new Droid Smartphone will work with the Zeo Mobile, I found one on ebay for a good price and ordered it. Maybe that will shed a bit of light, for both me and hubby, why we don't feel quite as good as we want.

[jweeks]

With all the rain we've been getting this week, we decided to sleep without our machines for one night.... When neither of us could feel much difference the next day, we went second night without our machines.

For me, I felt pretty crappy the second day.

Madalot,

Be aware that there is a delayed effect of stopping CPAP. Your body adjusts to using the machine, and it takes a while to go back to the pre-CPAP state after stopping. For example, I recently had a new baseline study done to see how I am doing if I wasn't using CPAP at all. My doctor asked me to stop CPAP for a minimum of 3 days before the sleep study, and ideally go 5 days without the machine. Once I started again on my new prescription, it took me about 10 days to adjust to the new lower pressure and start feeling really good again.

The net-net is that it is hard to judge skipping just one or two nights unless your sleep ends up severely disrupted when you stop using the machine. On the same token, it is probably not a good idea to skip a single night once you get into a groove. Any additional desaturations hurt because the impact is cumulative over your lifetime.

-john-

[Madalot]

John,

Valid points you bring up. I have learned, through this forum, that everyone is different and responds differently ON cpap and then OFF it. Some people feel immediate improvement, some time take, some never seem to feel better. Some people get a headache ONE night off cpap and others don't seem to feel any different one way or the other.

The second night, my hubby was snoring, snorting, slightly gasping. He seemed very restless, more so than on cpap, although he has been VERY restless ON cpap.

For me, I felt 80% better THIS morning than I did the last two. I asked hubby this morning how he slept and is response was "I think better. I wasn't laying there awake so much."

*We* may not feel the way we want ON our machines, but two night OFF convinced us we're better off ON them.

I'm excited to try the Zeo, but more interested in using it on my husband. See *IF* something is amiss in HIS sleep cycle.

[wildflowertx]

I went to a new-to-me sleep doc on Monday, who also has sleep apnea. He mentioned in the course of the visit that once upon a time he'd had cause to not use his machine for 2-3 nights while away from home, and slept/felt awful without it. Even I, in my only 7 weeks of treatment, have noticed a difference the next day on the two occasions of single nights that I didn't use my machine.

So while it may take some people long periods of time to notice a difference, your, my and my doc's experience of noticing a difference immediately isn't out of the norm, either. As you said, the usual "your mileage may vary" applies to this reaction, as always.

[chunkyfrog]

Since April, 2010, I have only been without on 3 occasions:
Twice, we had power outages; once, I forgot to turn the machine on.
Otherwise, I've dozed off a couple times while RIDING in the car--that really sucks.
I only need 10 minutes of no therapy to feel the pain.

[DoriC]

As some of you may know, I was able to set up our aide with our old machine/mask when she told me she had OSA but had never followed through. After looking at her sleep study report and getting her settled on a good pressure , she did very well for a few months,low AHIs, good mask fit, and had lots of energy. Lately I notice that she's yawning for the 2-3hrs she's here,circles under her eyes,moody. She said she was using the cpap but I knew different. I finally asked her again the other day if she was using the machine and she said No because "I don't feel any better when I use it". When I pointed out that she's yawning again and out of sorts she said it's not because of OSA but other problems. It's leaving me very frustrated because I have enough to deal with without dealing with the effects of her untreated OSA. She's trying to hide her symptoms now and is being pleasant because she knows I'm on to her. I gave her back her good health on a silver platter and she's not appreciating it!. On the other hand, she takes very good care of Mike and he adores her! I'm thinking of asking for my equipment back but you know I won't do it! This post really is on topic except for the rant!

[SleepingUgly]

As some of you may know, I was able to set up our aide with our old machine/mask when she told me she had OSA but had never followed through. After looking at her sleep study report and getting her settled on a good pressure , she did very well for a few months,low AHIs, good mask fit, and had lots of energy. Lately I notice that she's yawning for the 2-3hrs she's here,circles under her eyes,moody. She said she was using the cpap but I knew different. I finally asked her again the other day if she was using the machine and she said No because "I don't feel any better when I use it". When I pointed out that she's yawning again and out of sorts she said it's not because of OSA but other problems. It's leaving me very frustrated because I have enough to deal with without dealing with the effects of her untreated OSA. She's trying to hide her symptoms now and is being pleasant because she knows I'm on to her. I gave her back her good health on a silver platter and she's not appreciating it!. On the other hand, she takes very good care of Mike and he adores her! I'm thinking of asking for my equipment back but you know I won't do it! This post really is on topic except for the rant!

What do they say about leading a horse to water?! Tell her you want the water back if she's not going to drink! I wonder if she'll admit that she's on it anymore... If she is on it, she needs her therapy tweaked or she really has something else going on. She shouldn't be "moody" to her employer, though.

[DoriC]

She shouldn't be "moody" to her employer, though.

Exactly how I'm feeling at this point. I'm running a bit low in the "do good" department, don't have the patience or energy although I I know she does have personal problems. Deciding to have a non-family member in my home every day took some courage on my part and she knows part of her job is to ease my stress level. Sorry for the hijack.

[SleepingUgly]

She shouldn't be "moody" to her employer, though.

Exactly how I'm feeling at this point. I'm running a bit low in the "do good" department, don't have the patience or energy although I I know she does have personal problems. Deciding to have a non-family member in my home every day took some courage on my part and she knows part of her job is to ease my stress level. Sorry for the hijack.

I hear you! If I had someone in my home each day, I would want them to be next to invisible and soundless, magically knowing what needs to be done and doing it...silently! It's so awkward to have a conversation with her about this, but you may need to... Unless what you said turned things around already.

[Madalot]

Exactly how I'm feeling at this point. I'm running a bit low in the "do good" department, don't have the patience or energy although I I know she does have personal problems. Deciding to have a non-family member in my home every day took some courage on my part and she knows part of her job is to ease my stress level. Sorry for the hijack.

No worries, Dori! You're such a dear to help her and it's sad that she stopped using the machine. It would bother me as well, especially having her come to your house and you being able to see that she's not doing very well. Tough situation.

It makes me appreciate my hubby all the more. Yes, he didn't use the machine for two nights and he does comment about the mask and hose being a PITA during the night, which I agree with. But he DOES see and admit that using the machine is a help. And even if he didn't, he uses it because it stops that daggoned snoring that drives me insane.

Our power went out last night with the snowstorm so no machine for him again last night. I woke him up at least 2 times (that he knew of) and about 5 or 6 other times that I nudged him awake but he didn't realize it.

Even though he says he isn't feeling as good as he was at first (something a lot of us can certainly relate to) he is willing to be honest with himself and continue using it since it still helps him some. Now if we can only figure out why he's not doing quite as well as he was at first.