Ravel'd sleeves

[lydy]

So, I had two New Year's Resolutions. One, Do Not Poke the Crazy Lady With a Stick. (I may be violating this one, now.) Second, deal with my stupid sleep issues. So, good on the first one, with the possible violation already mentioned. The sleep issues...oh fucking sigh.

So, I found my CPAP machine. It's really, really old. At least ten years, and I think somewhat older than that. I borrowed a mask from the lab, found my humidifier, and was off to the races. The mask leaked. Something fierce. Now that I'm a sleep tech, leaks bother me a great deal more than they used to. I never liked the hissing noise, but now, I get all alarmed. So, I borrowed a different mask. Yay for the sleep lab. Didn't like that one, either, and developed a new symptom: aerophagia. Literally "air eating." My abdomen was becoming incredibly uncomfortably distended. Burping and farting ensued, providing vastly less relief than one might wish. Really, bodies are incredibly silly.

So, next step, try a nasal pillow mask, which has a great leak rate. I use them in the lab all the time. Also try a chin strap. Yeah, still with the aerophagia. Excellent. So, then to the internet to find instructions on how to adjust the pressure. I found instructions for the Respironics Solo Plus LX. Well, mine's a Solo Plus, no LX, but the instructions worked. The machine had been set on 13 cm H2O, which is a bit high, but you know, not too awful, I wouldn't have thought. At this point, I'm actually pretty severely annoyed. I mean, I used CPAP for fucking _years_ with no problems. But this aerophagia thing is totally unacceptable. So I lower the pressure to 8 cm H2O. No aerophagia. Yay for that. Also, the obstruction thing that I can feel happening when I fall to sleep is gone. So, there's that.

I try to do without the chin strap, which is honestly kind of annoying. I find that I keep on waking up with my mouth open and air hissing out, and I'm pretty sure that the leak is causing the arousals. If I was in the lab, and someone was observing, they could be sure, but really, it seems likely. So, I add back the chin strap. At this point, the nasal pillows start hurting. Sometimes the septum hurts, sometimes the nasal membranes hurt. Fuck with fuck sauce, I think. Really, nasal pillows are really nice in a bunch of ways, but I've never been able to use them because my nose is convinced that it's a special snowflake, and sure enough, we're back to the special snowflake status.

So, I'm on my fourth mask from the lab. Thank god I work for a sleep lab. This wouldn't be possible if I were trying to do it through a normal company. I mean, four masks in the course of two weeks? Each one of which costs in the neighborhood of $200? And, mostly, they don't let you return them. So grateful for my job, once again. So, now I'm using the Respironics Wisp, which actually does work really, really well. It doesn't hurt my nose, it doesn't leak when I lie on my side, it maintains a good seal, and just generally does absolutely everything I ever wanted. So happy with that part.

I look rather ridiculous when I arm myself to do battle with Morpheus these days. First, there's the chin strap, which fits under the chin, around the top of the head, and behind the head, hopefully holding my mouth closed, and is a maroon color. (Yes, yes, I can't keep my mouth closed, even when I sleep. Are you happy you made that joke, now?) Then, there's the eye mask, which lets DDB turn the lights on and off at will without bothering me, and is cobalt blue. Then there's the mask, which fits over the nose, with headgear that goes around the head, which is mostly silicon colored, but with grey cloth bits. Then there's a hose from the mask to the humidifier, which is long and grey and I call my elephant nose. I look pretty silly once I'm kitted out. But the important question: am I sleeping better?

Well... I think so. Some better, at any rate. I am waking up lesso piss less often. (Technically called nocturia, which is a much nicer sounding word, don't you think? Also, a useful clue to disrupted sleep.) I think I'm sleeping more soundly. But, I'm still hating to wake up. Always, forever, hating to wake up. On my days off, I'm still sleeping anything from six to sixteen hours. I have a new keen habit of waking up at five in the morning and being unable to fall asleep again until nine, and then sleep until three in the afternoon. Or, you know, six in the evening. Or some damn thing.

So, I think that the CPAP is helping some, but I think there are still stupid things going on. It is very likely that I have "delayed phase Circadian rhythm disorder" which a fancy term for being a night person. And trying to switch from a night shift to a day shift to a night shift to a day shift is a lot harder than it was when I was in my mid-twenties. (I used to do this when I lived with Peter Larsen. He was on third, I was on first, and I would shift over every weekend for the weekend. I was more resilient, then, which explains many things about our relationship.) The last time I was really worried about my sleep issues, I was on a boat load of psych meds, which I'm not on. And so that clarifies some things. I am certainly considerably less sleepy, even when I'm short of sleep, than I was when I was doped to the gills. So that's all very interesting. But it seems to take an unconscionably long time to fall asleep when I want to go to sleep, I'm having sleep maintenance issues, and in general, I just hate hate hate hate waking up. So, possibly something going on there.

My CPAP machine is old, as I mentioned, and doesn't have recording capability. So I can't download the card and see what it thinks. I do think I should probably have a sleep study done to find out what the best pressure is. I suspect the current pressure may be a little low, but you know, no way to know. I could totally do with a new machine, preferably one that has C-Flex. Which might help with the aerophagia, if I need higher pressures. (C-Flex, or A-Flex, or some other brand-name thingy, depending on the machine, gives a lower pressure on the exhale, which helps with tolerance and some of the problems such as aerophagia.)

I have a new, profound sympathy for my patients. I know so much about this. I have so many resources. And I'm still finding all of this to be complicated and difficult to navigate. The only reason a sleep study looks possible is that I've already met my deductible for this year because of my finger. I don't know if I can afford a new CPAP machine, because that comes out of a different pot of money, and I'm not sure what is and isn't covered. I really do need to return my mask and chin strap to the lab some day, and get my own.

So, annoyed Lydy is annoyed. This seemed so much simpler back a million years ago when I first got my diagnosis. How did it become this difficult? I mean, they whipped a little CPAP on me, I was perfectly happy, I took the mask they gave me, I had no questions, no problems and away I went. Really, honestly, where the fuck did the aerophagia come from? Sigh.

So, adventures in sleeping. Which I'm about to go do. Catch you on the flip side.

Comments

[pameladean]

Oh, that explains the paraphernalia in the bathroom!

It sounds incredibly annoying, in a nibbled-to-death-by ducks way.

P.

[nancylebov.livejournal.com]

Tentatively offered: there's some evidence that a teaspoon to a tablespoon of honey before sleep helps a lot of people stay asleep and sleep more deeply.

To judge by the anecdotes at the link, a high proportion of people find honey useful. A few find it makes their sleep worse or has no effect.

http://blog.sethroberts.net/category/sleep/honey-sleep/

[mle292.livejournal.com]

I think it's fucking hilarious that a person who works at a sleep disorder center cannot easily get access to the services of a sleep disorder center, and by "fucking hilarious," I mean "not funny at all."

[lydy.livejournal.com]

I do not remember all the words I used when I was told that the insurance I had through work did not cover a sleep study until after the deductible was paid, and that for it to do even that, I had to go someplace other than where I work. I am pretty sure, however, that none of the words were printable in a family newspaper.

[laurel]

Ugh. Sounds frustrating. I occasionally have issues with aerophagia and it's annoying (and kinda funny), but it's fairly rare for me, I think it just happens if I sleep in an especially odd position and/or my mask turns a certain way or something. I've always used nasal pillow masks; at my sleep study they started me on the first Swift. Have never tried a chin strap and hope I don't/won't have to.

I've never paid more than $125 for a mask (usually a little less than $100), but then buying directly from an online supplier is far cheaper than through a DME because they don't up the price the way the DMEs do to get as much insurance moolah as possible. I usually buy my gear from CPAP.com FWIW. Though I have occasionally purchased through a DME or through a third party seller on Amazon.

I should probably get a new sleep study done as it's been a while and I have all sorts of new variables to consider, but I'm leaning toward just getting one of the best APAPs out there given how much data collection they do these days and seeing what that can tell me.

I recently learned that the maker of my favorite mask (and my favorite portable battery powered CPAP-- the first one made, in fact) has gone out of business. They were a local company too (AIEOMed) for whom I did beta testing. Harrumph, harrumph. I'm still experimenting in an effort to find a mask I like as much as their Headrest/many other names. Currently still getting by with Opus 360.

I got lots of useful info from the CPAPTalk.com boards back in the day and a little while back I started a thread there to ask for advice on which APAP to get.

Minnesota-based Second Wind CPAP intrigues me, I like their website and their pricing.

I know there are also more and more efforts out there among CPAP users to swap equipment (if, say, you only use the M nasal pillows for a certain mask which comes with all sizes, then you team up with someone who uses the same mask but only uses the L and you can swap pillows).

If I do acquire an APAP sooner rather than later, you'd be welcome to borrow my older APAP and card reader and such if it'd help.

Anyway. Blathering. I carry on about this subject. Hope you're narrowing in on what you need.

Sigh...and yup!

[prettymuchpeggy.livejournal.com]

I feel your pain. Steve says often when we go to sleep "welcome to the planet" (We both look like slightly alien.)

As for shopping for masks the only thing worse than cpap mask hunting is bra shopping. I started my search by getting a new mask one every three months (as that was how long I needed to wait to get the 80% coverage by insurance). After about 6 months and some grumpy whining, someone let me know about cpap.com. There I was able to buy masks for near what I was spending on just my copay. I went through 8 different masks before I found my favorite nasal mask which is a Fisher & Paykel Flexifit 407. It has a foam insert which helps hold the membrane in place even as I shift in my sleep.

{NOTE: To be honest I have heard that some people have had trouble with cpap.com. I have not.}

[carbonel]

The irony, it burns. You shouldn't have to be doing this yourself, even if you're better-equipped to do so than most people.

I thought I would need a chin strap, but the air pressure from the nasal pillows seems to cause me to keep my mouth closed when I sleep so I don't have air hissing into the back of my throat. It's pretty much the first thing that went right with the whole sleep apnea thing for me.

[bemused-leftist.livejournal.com]

CPAP solved my partner's problem for a while, then he found that sleeping in a recliner chair was as good or better. No CPAP appratus at all. So he got a futon and made a recliner-shaped frame for it (6" rise from hip to head). Occasionally he needs a steeper rise, so goes back to the recliner for a short time.

[lydy.livejournal.com]

CPAP.com has the Wisp for just under a $100, so that's a thought. I'll look at the Second Wind site a little more closely once I do some research on what kind of machine would be best. I have pretty minimal needs. Auto would be very nice, but not absolutely necessary. I really want C-Flex or it's brand-name cousin. I would like a machine that has theories about leak rate and events, so that I can try to adjust based on my actual experience. I do wonder exactly how the hell it decides there are apneas and hypopneas. I mean, I know how I do it, but I'm using several more sensors than the CPAP machine has available. Ah, research.

Thanks for all that info. It really is helpful. My job has me solidly keyed into the system, but not the other stuff that intelligent users might experiment with. Really, it's a very hierarchical attitude toward breathing-while-sleeping.

[lydy.livejournal.com]

That's excellent. I'm so glad they're working for you. If you like what you've got, then go with it, though if you wanted to try the Respironics Nuance Pro, which I actually like better than the ResMed Swift FX (which is what you currently have on loan from me), I can borrow you one next week. I think it's more comfortable than the Swift. I was almost able to use it, actually. And it works exceptionally well in the lab, it's my current favorite mask for anyone who's able to tolerate a nasal pillow.

[lydy.livejournal.com]

I purely, utterly despise sleeping sitting up. Passionately. I don't feel that I sleep well. I am constantly trying to lie down, even in my sleep. This was true when I was a small child and they tried to make me sleep sitting up beceause of my asthma, and remains true to this day.

On the other hand, if it works for you, it can work pretty well. Sleeping upright means that gravity is working for you instead of against you. In specific, if the thing that's happening is that the tongue and soft palate are falling back and occluding the airway, then not lying down will deal with most or all of that. If the obstruction is a little farther down the airway, such as the dilator muscles in the throat not maintaining patentcy, then elevation is still helpful, but not as much.

In the lab, we try CPAP first, in part because almost everybody sleeps lying down. If we can't get a good enough result with horizontal, supine sleep and _lots_ of CPAP, we do try elevation. Usually a 45 degree wedge. If that fails, we try having people sleep on their side on a wedge. Some people purely hate the wedge. Others adore it. People, did you know that they're individuals?

I'm surprised that a 6" rise is sufficient to make that much difference. I wouldn't bother with anything less than about a 20 degree inclination, if I was trying elevation. However, so much depends on the exact size and shape of the airway, which, by the way, nobody measures.

I did see an article a while ago about the different types of obstruction that people experience, and discussing blue-sky hopes that someday we'd be able to distinguish between these types in the lab and design therapies to address the specific issue. How far off this is, I don't really know. At the moment, there are really only three, no maybe four therapies for obstructive sleep apnea. The first, and oldest, is a tracheotomy. They pretty much don't do that anymore except in life-threatening cases. (Yes, you can have life-threatening apnea.) The most common is CPAP and it's various cousins, such as Bi-PAP, which are essentially creating an air splint. The third is a dental device which repositions the jaw. I don't like them, but I pretty much only see them when they're not working, so that's part of why. The fourth is postural, either keeping people from sleeping on their back, or elevating the torso, or some such. Which works best probably has a lot to do with the exact mechanism which is causing the obstruction, but since we don't have any good way to measure that, we just pretty much try a bit of this or that and see what works.

[carbonel]

The ResMed Swift FX isn't perfect, and I suspect that it (rather than long-term surgical recovery) is why my nose is often slightly sore, so I am definitely interested in trying the Respironics.

By the way, I figured out how to get my APAP to tell me the AHI from the previous night. It only seems to work when it's just been turned off -- later on, it just gives a bunch of zeros. And I can't figure out how to get history or averages or anything else useful. But from an exceedingly unscientific survey of nights, I seem to be ranging between 3.9 and 11.5, with most of the numbers more toward the middle of that.

[lydy.livejournal.com]

Well, an AHI of less than five is perfectly normal. Five to fifteen is mild, fifteen to thirty is moderate, and greater than thirty is severe. Note that this is an average number of events per hour, not total number of events. AHI actually stands for "Apnea Hypopnea Index" I can't quite tell from your description if your machine is giving you totals, or an index.

I'll grab you a Nuance next week. I'm home for the week, and I returned the one I had borrowed last night.

[gerisullivan.livejournal.com]

Seconding the Nuance Pro here. I've been using it since mid-December. I've been a nasal pillow girl for over a decade. I used a mask for the first 6 months or so, then switched and never looked back. The Nuance Pro is by far the most effective and comfortable set of nasal pillows I've used yet.

[gerisullivan.livejournal.com]

Hmmm....is it showing you AHI, or the pressure levels from the previous night?

How do you get it to show the numbers right after you turn it off? Via the info button? I can get to a second level of numbers but haven't been able to make sense of them so far.

I do love APAP, though. And I still feel silly about how much difference a heated hose makes. I used to prefer the passover humidifier I had from 2000-2006 to the heated humidifier from 2006-2013. I now have both a heated humidifier you can set to a specific temperature and a heated hose. It seems absurd, but it's nice!

[carbonel]

Hmmm....is it showing you AHI, or the pressure levels from the previous night?

Definitely AHI. The numbers don't correspond to my pressure levels.

How do you get it to show the numbers right after you turn it off?

On my machine (ResMed APAP, don't know the model), pressing the info button in that period after I've turned it off but before it completely shuts down gives time of sleep, mask fit, and AHI for the previous night.

As for the heated hose, the rental unit I started with came with one. When the tech gave me the equipment, I asked about a cover for the tube, because I remembered Cally had needed one, and she explained about the heated tube. Then when I was swapping the rental for the final one to purchase, the other tech tried to give me a non-heated tube, and I protested, so he swapped it for the one I've been using. I've never not used it, so I have nothing to compare it with, but it does seem a good invention, if for nothing else than to prevent condensation building up in the tube.

[lydy.livejournal.com]

Turns out, humidity helps with the effectiveness of CPAP. All that extra air overwhelms the body's ability to heat and humidify the air it takes in, the dry air causes membranes to swell and to provide extra mucus, which narrows the airway, which means that CPAP has more work to do...

I assume they didn't always know this, since when I first got CPAP, they didn't give me a humidifier, and then when I complained of dryness, gave me a passover humidifier, and when I continued to complain, reluctantly gave me a heated humidifier. Which is a tank and still works. I don't have a hose cozy, but might get one. The heated tubing looks all sorts of cool.

[lydy.livejournal.com]

I really wish I could use nasal pillows. They are absolutely the most comfortable thing ever -- until they start to hurt, at which point, they aren't. There have been some big improvements, and the Nuance is definitely the most comfortable one I've ever seen, but after a few days, it hurts. Silly nose.