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Two good nights of sleep in a row... - John [entries|archive|friends|userinfo]
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Two good nights of sleep in a row... [Feb. 20th, 2015|07:40 pm]
John
... and all I had to do was stop using the blasted CPAP! This is annoying as blazes.

But I have learned some things.

If I use the ramp-up feature - where it slowly builds up the air flow - it's significantly harder to breathe than without it on at all. This strikes me as incorrect. The whole point of the damn thing is to help me breathe during my sleep - what kind of crappy design would it be if I had to start having a *harder* time breathing unassisted?

But this doesn't seem to be my imagination. If I turn off the ramp-up, I feel I can breathe normally.

I definitely need to learn a different sleep position, looking up slightly, or at least straight ahead. "Looking up?" you ask. Yes, I have a tendency to curl up a bit for sleep - which means my head is positioned as if I'm looking down. But this tends to make it easier for air to flow into the mouth and esophagus - bloating from swallowed air is a common complaint. So I need to try to tilt my head as if I was looking up a bit. Those of you who learned first aid "old school" might remember this as part of rescue breathing - tilt the head back, lift the chin/jut the jaw.

I've had two, good nights of restful restorative sleep, mostly by guarding against congestion, and using tricks to stay off my back. (I was using a waist pouch stuffed with socks. Not the best option, because it's big enough that I usually wake up when I want to switch sides. Then again, when I do switch sides, I go right back to sleep.

But a few nights when I used the CPAP successfully, I noticed something.

My left shoulder stopped hurting - I was spending far too much time on that side, because it is the easiest for breathing. (My deviated septum is on the left - and the lower side of your nose tends to be more congested because of blood pooling due to gravity. So my 'good' nasal passage is most open.) And the hideous, horrible, dear-lord-can-dry-eyes-damage-your-sight? dry eyes have been healing.

So: the CPAP is doing something. Of course, the other thing it's been doing is making it take longer for me to fall asleep, and making me wake up 5-7 times during the night!

So I have to admit, I'm torn between continuing to experiment with it, or returning it and saying "let's try this again *after* I prove that other interventions are insufficient".

Because the way they normally do it is, you rent it for N months - with my insurance, it's 3 - and then it becomes a purchase. Well, I'm halfway through that, and I simply can't experiment with it on a work night - I've had too many crappy work days because of short sleep due to the CPAP already. And I find myself turning away from using it on weekends because, damn it, I deserve a good weekend!

So it might be best to find out if we can reset the clock, while I try avoiding sleeping on my back, or using the wedge pillow, or tilting my bed (or getting an adjustable one), etc..

That'll have to wait until Monday - it's been a very busy week, so I didn't write this up for my sleep doc this week.
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[User Picture]From: bkwrrm_tx
2015-02-21 07:16 am (UTC)
I can't use the ramp. I have my settings exactly where I like them - put my face-sucker on, and go to sleep. End of story.

IF you're a mouth breather, you might need to get a full face mask (assuming you're using a nose mask). I sleep curled up on my side, kind of looking down but don't have a problem with it.

I hope you get it figured out soon, because I've used mine for 10 years and literally can't sleep without it. Literally, meaning literally. I just had to do my 30 day compliance report for surgery and my NP told me I had the only 100% report she's ever seen.
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[User Picture]From: kshandra
2015-02-21 07:38 am (UTC)
I'd be happy to mail your NP a copy of mine, so she can say she's seen two. ;-) (Just had my data read because we've been noticing I'm not sleeping as well recently; I suspect it's just a case of my headgear being stretched out, so I've ordered a new one, but I wanted to have them take a look in case something more was going on.)

Second the recommendation for a different mask and/or a chinstrap to combat any mouth-breathing tendencies you may have; I used mine once or twice when I was first getting accustomed to the machine, and keep it around for nights when I'm extra congested (though I've had MUCH fewer of those since I started using the face-hugger.)

And I do hope you find the solution for your sleep problems, whatever that may turn out to be.
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[User Picture]From: bkwrrm_tx
2015-02-21 07:50 am (UTC)
/high-5s you for being a member of the 100% club/
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[User Picture]From: johnpalmer
2015-02-21 10:33 pm (UTC)
Well, you know, the funny thing is, before January 9th, I didn't think I had any sleep problems. Since then, all the ones I'm fully operationally aware of come from the CPAP.

My sleep lab shows that when I'm on my side, my symptoms are subclinical.

And trying not to be cynical, but when I started thinking about breathing at night, I quickly realized something was wrong, and found a deviated septum issue and my sleep doc dismissed it utterly. Which... maybe she measured airflow through both nostrils. Maybe she did! I don't know. Maybe she knows, scientifically, that fixing the deviated septum won't help. But I'm drawing further away from the notion that the CPAP is the right intervention.

The biggest problem I'm having right now is - with the CPAP, it takes long time to go to sleep - I'll feel I'm lying away for an hour to two (which means I'm probably drifting into stage 1 sleep). And by 2, 3, or 4, I might wake up *hard*. As in, don't expect to get back to sleep for at least another hour. If that doesn't happen, I'm still likely to wake up a boatload of times. Now, part of that was the rampup - like I said, it's actively *difficult* to breathe when I'm on the rampup. Now, part of it might be expectation.

re: mouth breathing/chin straps/etc., I have had some bloating - but that's not a primary complaint, and it's never bad enough to make me stop using it. And I've had some signs that there's air going into my mouth or something - because my tongue and cheeks will be stuck to nearby surfaces. But that's not "mouth breathing" feel as I know it - the dryness feels wrong for that. It might be a side effect of the CPAP - blowing up my nose, not getting a clear airway, the air has to go somewhere, and the mouth is right there. So I think maybe positioning will help. Or maybe a mouth guard - I've heard of icky-sounding,but probably not-unreasonable devices that hold one's tongue in place (again, old-school rescue breathing, the tongue is *really* good at blocking airways when a person's completely limp).

Thing is - I was cynical about the CPAP at first, but I by-god want to try to adapt and not reject help just because it's not how I hoped it would arrive, you know? Let me be mature enough to accept that I can be wrong. But I'm starting to hit the place where I also have to be mature enough to recognize when my judgment has led me right, and when it's likely wrong, and maybe I'm starting to feel that this is the wrong path and feeling it for the right reasons. Especially because this is something that we knew was going to knock me from "just barely having problems" to "not having problems". And especially-sub-2 when there are other well known fixes that might help, like avoiding back sleeping, and possibly other airway interventions - maybe something as stupidly simple as nasal strips and/or decongestants.

On the gripping hand - shitty sleep *has* made my symptoms much worse, sleep apnea *can* damage the heart, and, god damn it, I have *always* felt cardiac issues were the spot-on best explanation for my symptoms. Poor sleep can also mimic the issues that made me think TLE was a reasonable model for my symptoms. So I can't ignore it. But I don't have to play by the ordinary rules, either.
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[User Picture]From: kshandra
2015-02-22 10:55 pm (UTC)
I'm sorry for GASing at you about this. I want you to feel better, by whatever means appropriate. <3
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[User Picture]From: johnpalmer
2015-02-23 05:27 am (UTC)
Nothing to apologize for, really. Years and years of fatigue have left me with few people to talk to - when my mom died, there was no one who'd, e.g., bring a casserole over, for example - and really big, life affecting stuff going on. I've got a lot ready to be said, but not many people to say it to.

The frustrating thing is, I'm partly ready to accept certain parts of my life, and now I've got this one last hoop to jump through, and it isn't just a hoop to jump through, it's this big flipping deal. If the CPAP worked, and I slept better, great. And if the better sleep didn't help my symptoms, not great, but no better/worse than I was, right? But no, it's actually making me sleep worse.

I suppose it really *is* pretty funny looked at the right way. But I'm not ready to laugh yet.
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[User Picture]From: johnpalmer
2015-02-26 09:15 pm (UTC)
PS: I really hope you didn't feel bad about my extended response - or don't any longer, or whatever. Like I said, the biggest thing was just I suddenly realized I had a lot to say that I hadn't said to anyone yet.

I've got so many adaptions to being lonely that I sometimes forget that I *am* - and one of the symptoms is the flood gates opening spontaneously.
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[User Picture]From: johnpalmer
2015-02-22 08:38 pm (UTC)
Well, my biggest thing is that I'm not 100% sure it's the proper intervention, and this might be a huge amount of work for absolutely no benefit. Yesterday, I made myself use it, and I think I'm feeling worse for having used it (even when I correct for the inner two-year-old's whining).

I'd really like to hear that we can shelve this for a while and I can try again some other time. Alternately, I might need some sleep meds to help me fall asleep initially, until I get over the expectation that CPAP=lying awake for an hour or more.
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