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July 12, 2005

Sleep testing
Posted by Teresa at 02:38 PM * 73 comments

I’m back from another overnight sleep study; i.e., a stint as a temporary cyborg, with electrodes and monitoring bits stuck all over me. My assigned task was to manage to sleep while wearing all that gear, in an uncomfortable hospital bed, knowing that I was being watched via night-vision cameras.

This time they threw in a new wrinkle. After they’d wired up all the face and head electrodes, they put a CPAP (Continuous Positive Airway Pressure) mask on me. Basically, a CPAP is a loathsome device that pushes air down your nose. Wearing one feels like you’re being continuously molested by an octopus vacuum cleaner salesman.

If the pressure’s set high enough, you have to keep your mouth clamped shut (hard enough to make your jaw ache later) the whole time you’re asleep. Otherwise, as I discovered at some point in the middle of the night, the air rushing in through your nose and out through your mouth generates a mild Bernoulli effect that tugs on whatever air is already in your lungs. This was not actually dangerous—if I’d truly been unable to breathe, I would have panicked and torn off the testing gear—but it did prompt my reptilian hindbrain to have its customary calm, measured reaction to the possibility that something might be interfering with my ability to breathe.

I mewled, flailed around, managed a few breathless repetitions of “hello,” and waved my flippers at the cameras. No one came. (As it happened, the lab tech was briefly busy with another patient.) I hazily knew not to trash the test by peeling off all the monitoring gear, but I was three-quarters asleep and urgently wanted someone to Turn That Thing Down, so it seemed necessary that I Do Something.

The only alternate communication channel I could think of was that they were monitoring resistance to the CPAP’s airflow. I’m not looking forward to explaining to my neurologist why at one point the test data includes several repetitions of a Morse Code SOS signal, produced by raising and lowering my CPAP nosepiece.

I’m not sure what happened after that, so I probably went back to sleep.

Comments on Sleep testing:
#1 ::: jane ::: (view all by) ::: July 12, 2005, 04:43 PM:

At some point at World Con you need to trade sleep stories with Adam.

I need to listen. It might make me fall over.

Jane

#2 ::: Janet Croft ::: (view all by) ::: July 12, 2005, 04:44 PM:

I'm not sure why the SOS made me laugh, but it did. Maybe because it's such an sfnal sort of reaction -- I can see someone in Heinlein or Asimov doing exactly the same thing... Hope they got good data that can be used to help!

#3 ::: Name Witheld ::: (view all by) ::: July 12, 2005, 04:53 PM:

I had my first and so far only sleep study a week ago tonight.

1. I had a very good rest, much better than usual.
2. I was uncharacteristically intransigent with the technician in the morning.
3. I saw an extremely unusual occurrence for a moment that evening. Some kid was using a box cutter to tear up a Metrorail seat in full view of passengers getting on the train. The guy I got on with didn't notice it.
4. I developed a brainworm about gangs who go around finding citizens to murder by getting them to report gang incidents to the train operator, as I did.
5. This led to another action that I'm not ready to post about, even anonymously, but which seems to have improved my quality of life significantly.

I don't think I'm prone to hallucinations, but if this is what they do, bring it on.

#4 ::: Scorpio ::: (view all by) ::: July 12, 2005, 04:53 PM:

If you really have bad sleep apnea you can fall asleep sitting bolt upright in a secretary's chair in bright fluorescent light with all that gear plus a CPAP. Just a matter of degree.

A chin strap can help with the CPAP. One of the new masks that goes over nose and mouth (with a vaporizer -- do NOT try one dry) can also alleviate the open mouth problem. Sigh.

#5 ::: Patrick Connors ::: (view all by) ::: July 12, 2005, 05:08 PM:

I use a CPAP with a chin strap. Being cheap, I use an improvised chin strap - Scunci elastic bands, the kind you wear in your hair - $3 for a package and they work better than the $70 chinstrap I got from the CPAP vendor.

Actually I can sleep just fine without a CPAP in the living room recliner - I lean back and doze off in a good position for airflow. But it's not as nice as having someone to snuggle.

#6 ::: Teresa Nielsen Hayden ::: (view all by) ::: July 12, 2005, 05:10 PM:

Jane, has Patrick not told you? We didn't get tickets before the iniquitous rise in prices, so Patrick gets to go (Tor pays for him), but I don't. My official line is that I'm bearing up nobly under the disappointment, which I trust you'll correctly take to mean that I feel extremely sorry for myself. Give my best to Adam and David. Woe!

Scorpio, I've been a diagnosed narcoleptic since the early 1980s, and I couldn't begin to list all the improbable circumstances in which I've managed to fall asleep.

So far, my greatest achievement was during one Multiple Sleep Latency Test, where the EEG tech -- who until that week had been an EKG tech -- hooked up all those electrodes, then absentmindedly walked between me and the EEG monitor. The leads that ripped loose hurt slightly less than the ones that didn't. The tech stuck them all back on. Right after that, I was supposed to try to go to sleep. I did.

#7 ::: Janet Croft ::: (view all by) ::: July 12, 2005, 05:16 PM:

Oh, and did you see the bit on sleep paralysis on BoingBoing.net today, with links to a survey? So THAT's what's been happening to me once in a while -- very interesting article!

#8 ::: Clyde Graham ::: (view all by) ::: July 12, 2005, 05:33 PM:

My CPAP has been a godsend, after the couple of weeks it took me to get used to it. I've never understood using them as part of a sleep study however, as if you're not used to it, they're more likely to keep you awake than not.

#9 ::: Anna Feruglio Dal Dan ::: (view all by) ::: July 12, 2005, 05:40 PM:

Jane, has Patrick not told you? We didn't get tickets before the iniquitous rise in prices, so Patrick gets to go (Tor pays for him), but I don't. My official line is that I'm bearing up nobly under the disappointment, which I trust you'll correctly take to mean that I feel extremely sorry for myself. Give my best to Adam and David. Woe!

Noooooowww.
(disappointed wailing)

#10 ::: JamesG ::: (view all by) ::: July 12, 2005, 05:48 PM:

I have heard of the sleep tests being used to diagnose problems, but since you already know that you suffer from narcolepsy, was this test done in hopes of finding better ways to treat it?

#11 ::: Madeleine Robins ::: (view all by) ::: July 12, 2005, 05:50 PM:

(Echoing Anna):


Noooooooooooo!

I was hoping to see you! The only reason I can get away with the trip is because I'm doing some research in London afterward.

Am I the only one who missred that acronym as CRAP and was rather disappointed once the mistake was made clear?

#12 ::: Will "scifantasy" Frank ::: (view all by) ::: July 12, 2005, 05:54 PM:

A good friend of mine at college has been wrestling with sleep apnia for a few years now; at some point last year or the year before he was going to be spending some time hooked up to a CPAP, and then a BiPAP, which is as I understand it a more complicated version of same. I don't know what came of it after that...though recently his fiancee told me he was in surgery, and I thought it was for that--turned out it was an emergency appendectomy.

Some guys can't catch a break.

#13 ::: Marilee ::: (view all by) ::: July 12, 2005, 06:16 PM:

Patrick, you don't have cats that will snuggle with you in the recliner? I'm about ready for a nap myself, and I expect 35 pounds of cat on me.

#14 ::: Daniel Dern ::: (view all by) ::: July 12, 2005, 06:44 PM:

> Basically, a CPAP is a loathsome device that pushes air down your nose. Wearing one feels like you?re being continuously molested by an octopus vacuum cleaner
salesman.

Speaking as someone who's been using a CPAP for 6 or 8 years, every night, including toting it to WorldCons in Australia and Canada, YMMV. (Your Mileage May Vary)

I know of lots of fellow SF fans with sleep apnea; I could list four or five easily. (I won't name names without their permission.) And I know at least that many again from the computer developer/press side of things.

Most of us have been using CPAP machines; the biggest complain some have is the bulk and weight of the machine, travel wise... and (for those whose needs can be served by the smaller, simpler machines) the newer ones are in the 2-pound range. (My travel CPAP is a Puritan Bennett GoodKnight 420 CPAP.)

At Arisia 2005, back in January (fortunately, before the Way Big Snow fell), we had an interesting Sleep Apnea & CPAPs panel, by the way.

I'm confused by some things you say in your posting... unless things have changed (and they may have), sleep apnea tests are done in two stages.

First, to assess whether you have s.a., and if so, to what degree. This is done by wiring you up like Frank L. Stein, yes, with electrodes in sundry places (fortunately, you can detach the umbilical through a group connector, e.g., to go use the bathroom).

The first test measures things like blood oxygen level (e.g. using a clothes-pin-like thingie shining light through your fingertip), and also number of "breathing stops" per hour.

If you're assessed as having sleep apnea, and of a level that merits dealing with, the options include, depending on how the relevant parts of your body are shaped or whatever:

o Surgery. Includes pallete-hardening, or scraping your throat to make it wider. Yucka.

o Dental surgery, or night-time biteplates, to re-adjust how your jaw is closing, or something like that.

o Lose weight. Depends on why you're apneac; losing weight may resolve it. Or not.

o CPAP machine, which pushes Continuous Positive Air Presssure down your throat (through nose and/or mouth).
Variations include BiPAP -- Bi-Level, if you need a higher level while inhaling, or a high enough level that a lower other level makes it easier to exhale. Other accessories can include humidifying water tray, and/or oxygen.

The second test -- possibly done as the second half of a one night study, tho mine was a two-nighter -- determines what CPAP/BiPAP levels let you keep breathing, resulting in "good sleep."

I know some people who did the surgeries. For some, it worked; for others, it made it worse. Also not good if you're a professional singer.

All CPAP/BiPAP users I know swear by, not at, our machines. (Except those still lugging around the too-big ones.)

Yes, the mask makes you look dorkey. Especially if you've got the older "bathing-cap" straps, rather than the newer, less unstylish "head suspenders" type. Even so, you still end up looking like Darth Vader's namby nephew Bart Vader. If you're single/dating, this could pose a tactical challenge. (Deciding whether to bring it along, even ignoring what it looks like when on...)

But yes, using a CPAP is making an immense difference for those I know who have them, in quality of sleep, in being more awake during the day, etc.

It can take a few days to get used to. Based on what you wrote, I'm wondering if:

o Your level is set too high
o They gave you one that's unnecessarily noisey
o You've got a CPAP, but would be better off with a BiPAP, so they could crank down the exhale level
o It should be set to "ramp" ... crank up to full pressure slowly (over a minute or so), rather than
slam into high at the start.
o Your mask isn't the right one, or not adjusted right.
o You haven't gotten used to it.
o Sleep apnea isn't the problem, or this isn't solving
whatever the problem is well enough.
o Other.

As for the "unable to breathe" there should be holes/valves so that even should the power go out or whatever, you have enough ventilation that you can keep on breathing.

Yes, it can be weird, discomfitting, et c. until one gets used to it.

Feel free to contact me out-of-band, of course. And I'd be happy to let you chat with fellow fan apneacs (I know you know at least one of them) some of who know more than I do about some of this.

Meanwhile, try reciting the Green Lantern oath (Hal Jordan's, not Alan Scott's) as you put the mask on;
this might help. :-)

Daniel

#15 ::: Patrick Connors ::: (view all by) ::: July 12, 2005, 07:27 PM:

Marilee: Of course I have cats that'll snuggle - with my fiancee, since she's the one that raised 'em. They like me, but the bond isn't quite that deep yet.

My own cat Tiger is very furtive, not a public snuggler at all.

#16 ::: John Cole ::: (view all by) ::: July 12, 2005, 07:30 PM:

Teresa-

Stick with it. They were adjusting your settings the entire time you were sleeping, and chances were the higher ones are not what you will need. Once they have the right settings, you will be fine, and it really takes no time whatsoever to get used to.

Getting a CPAP machine changed my life- I went from being tired all the time to being able to sleep for 6 straight hours and waking up refreshed. Just stick to it, and listen to what they have to say. Before long, you won't even care that you look like "Top Gun." I sure didn't.

#17 ::: John M. Ford ::: (view all by) ::: July 12, 2005, 07:31 PM:

Yeah, um, uh... In Blackest Day or Brightest Night... uh, watermelon, cantaloupe, yada yada... a superstitious and cowardly lot... with liberty and justice for all!
-- Duck Dodgers, trying to remember the Oath under heavy plot pressure

On the other hand, it could also be put as "Lie back, and think of Alfred Bester." That can't be good for your delta rhythms.

#18 ::: John M. Ford ::: (view all by) ::: July 12, 2005, 07:36 PM:

Not that I have any business making comments. Cyborgs are supposed to be cool and mighty and be able to read menus in dark restaurants, not snag on passing doorknobs. (I assure you that is not a metaphor.)

#19 ::: Sisuile ::: (view all by) ::: July 12, 2005, 07:52 PM:

Why did they add the CPAP? I didn't think they used them to treat narcolepsy...

#20 ::: fidelio ::: (view all by) ::: July 12, 2005, 08:02 PM:

Why did the add the C-PAP?

Because in the world of sleep disorder diagnostics, sleep apnea is the new black. Partly this is because it's been overlooked a lot in the past, and also because it's now fairly easy to diagnose and treat. Any middle-aged, overweight person complaining of fatigue without other discernable cause (or even with other discernable cause) will be checked for it these days, as will any non-middle-aged, non-overweight person complaining of fatigue or any sort of sleep disturbance. They folks at the sleep lab would feel foolish if they didn't check for it while they held the patient in their toils.

My mother is still trying to figure out what possible connection sleep apnea might have with the mid-sleep-period insomnia she's had all her life; the response she got seemed to be "Nothing! But we can treat sleep apnea!" She's still not sure she has sleep apnea, because she found the rig so physically irksome, even without the air pressure issues, that she never fell asleep at the sleep lab.

#21 ::: Mary Root ::: (view all by) ::: July 12, 2005, 10:02 PM:

My husband has a CPAP. He calls it his supercharger. One of the funniest side effects is that turning it has become the cat's bedtime cue. That whirr gets going, and kitty charges into the bedroom and leaps onto the bed, looking for a good spot. My husband went to visit his brother for the weekend, taking the CPAP. The cat wouldn't come to sleep on the bed! He was there in the morning, but it was odd to fall asleep without the hum of the machine or the cuddling kitty. Oddly, that was more disturbing than the lack of husband.

One problem with sleeping two with the CPAP is the stream of air coming out of the blow hole. I solved that by moving my pillow about six inches down the bed. Now it misses me entirely.

#22 ::: Patrick Connors ::: (view all by) ::: July 12, 2005, 11:12 PM:

Mary: Some of the newer masks have multiple blow holes. Much less disturbing. I toss and turn and so the flow from the blow hole on my CPAP sometimes woke me up. No more, and I get no compaints from Chris on this issue either.

#23 ::: Dave Luckett ::: (view all by) ::: July 12, 2005, 11:13 PM:

Been using one of the things for about three years now. Much better sleep, and it took me maybe twice to get used to it completely. Now off to Britain and Europe, with adaptor plugs. Interestingly, I now cannot visit the US without major electrical work, on account of the 110 volt supply.

#24 ::: Peter Hentges ::: (view all by) ::: July 12, 2005, 11:26 PM:

My sweetie, Ericka, always suggests to people getting CPAPs that that they skip the usual little nose mask they try to foist on you and go straight for the design that has two rubberized nipples to direct air up each nostril. The head gear is less daunting to deal with and it's easier to get a good seal.

Hope your study went as well as could be expected and the results lead to a more comfortable sleeping.

#25 ::: Serge ::: (view all by) ::: July 13, 2005, 01:11 AM:

OK, Daniel, what was the Green Lantern's Oath? I've always been more of a Marvel fan, but if the Oath will help my wife Sue with her own CPAP machine, I'm game.

As for the mask... It doesn't make Sue look like Bart Vader. More like Hannibal Lecter, really.

#26 ::: Terry ::: (view all by) ::: July 13, 2005, 01:32 AM:

The Silver Age GL's oath is:

"In brightest day,
In blackest night,
No evil shall escape my sight.
Let those who worship evil's might,
Beware my power,
Green Lantern's Light!"

#27 ::: Jonathan Vos Post ::: (view all by) ::: July 13, 2005, 01:53 AM:

For a while I was contemplated to be the hired consultant to figure out Hard SF background for Green Lantern, but it was good news that Larry Niven got the deal, though he may not need the money as much as I. He's a Caltech guy too, and a far more polished prose author than I, after all. I always liked the Flash and Green Lantern more than Superman -- limited powers well used beat near-omnipotence badly used. Though the Smallville TV series is pretty good in some ways.

#28 ::: Jonathan Vos Post ::: (view all by) ::: July 13, 2005, 02:07 AM:

Teresa:

is this a good report on one of the panels you did at Readercon? Can you add some comments of your own, perhaps, pretty please?

July 11, 2005
Readerconreport #1
Burning Roma
The weblog of Hannah Wolf Bowen, writer and student of reality.

... Saturday, 11am, Genre Switching for Fun and Profit. Delany again. Mafia god Jonathan Lethem. Teresa Nielsen-Hayden. Michael Blumlein. Kit Reed. Kate Wilhelm. Like so:

Introductions. People at Readercon liked to talk....

Delany [approximately]: "Desire as holding genre together. Itís why there are women, because some people think theyíre incredibly sexy and that's what keeps them coherent as a genre. Also men, lightbulbs, sf, etc."

#29 ::: Serge ::: (view all by) ::: July 13, 2005, 03:00 AM:

Thanks for Green Lantern's Oath, Terry. They just don't utter oaths like that anymore, do they?

#30 ::: Serge ::: (view all by) ::: July 13, 2005, 03:09 AM:

And of course, Jonathan, Niven did his thing with Superman in "Man of Steel - Woman of Kleenex".

I wonder what Bryan Singer will do with the new movie about the Last Son of Krypton. Personally, I'd like to see someone that talented taking on the Martian Manhunter, especially if they used as a starting point the graphic novel "American Secrets". Set in 1959, it's got everything: big cars, Patty Duke, people exploding during rigged game shows, Mad Magazine, Fidel Castro...

#31 ::: Kate Y. ::: (view all by) ::: July 13, 2005, 05:20 AM:

T, that bit with the S.O.S. is priceless.

...wearing one feels like youíre being continuously molested by an octopus vacuum cleaner salesman.

My take on it is "personal hovercraft strapped to my face and trying to take off", but then I have a model that covers both nose and mouth. They tried me with the nose-only version first, and quickly gave up because that only works if you can (drum roll) breathe through your nose.

Ironically, I now can, thanks to 5 months of mask and humidifier. Maybe I could switch to the smaller nose-only mask; maybe I won't rock the boat. (No hay fever! Night OR day! Wheeee!)

Further natter about sleep study & life w/CPAP available beginning here.

#32 ::: Randolph Fritz ::: (view all by) ::: July 13, 2005, 05:55 AM:

"...They tried me with the nose-only version first, and quickly gave up because that only works if you can (drum roll) breathe through your nose...."

Flonase® is my friend. I am no longer a mouth-breathing organism, usually, anyway.

"...two rubberized nipples..."

Officially, "nasal pillows".

#33 ::: David Goldfarb ::: (view all by) ::: July 13, 2005, 07:28 AM:

Jonathan: In what way is the Green Lantern power ring "limited power"? Name me one thing that Superman can do that Green Lantern can't do better! I mean, I like Superman and Green Lantern, but I like them specifically because they're heavy hitters.

(Okay, there's that pesky yellow weakness, but a] it's gone these days [arbitrary weaknesses are out of fashion] and b] anyone with a power ring and half a brain ought to be able to cope with yellow stuff via indirect methods, no problem.)

If you're looking for "limited power well used", try the Legion of Super-Heroes.

#34 ::: Michelle K ::: (view all by) ::: July 13, 2005, 08:38 AM:

My good friend, who thinks her CPAP is the most woderful thing in the world, says that she feels like an alien elephant.

She sent me a picture of herself, wearing the CPAP headgear, so I could see how bizarre it was. I dutifully added elephant ears. She was amused by the picture, but said that if it ever showed up on my webpage, she'd hunt me down and kill me.

#35 ::: Tim Kyger ::: (view all by) ::: July 13, 2005, 09:36 AM:

Add one more fan (or ex-fan) with sleep apnea.

Teresa, I've got a great couple of Polaroids of my first sleep test, and the second, with the CPAP mask on.

Geez, the 21st Century...a time of pressured breathing...

#36 ::: Faren Miller ::: (view all by) ::: July 13, 2005, 10:35 AM:

Fideleo (belated response): Your mention of your Mom's mid-sleep insomnia reminded me of reviews I've seen of a n-f book about Night that said that condition was commonly accepted in medieval times, viewed as a few hours for reflecting upon one's dreams. For post-menopausal women today it's even more common -- my Mom often has it. I'm post-men. myself, but mainly have trouble getting to sleep in the first place. Later sleep disturbances are due to my noisy cat demanding food several times a night (and he usually won't shut up if I don't feed him). He only snuggles in winter, and then mainly likes to lie on my ankles or shins.

Best wishes to all the apnea sufferers out there!

#37 ::: Lois Fundis ::: (view all by) ::: July 13, 2005, 10:50 AM:

Teresa, I hope after all that they'll find something helpful to you!

#38 ::: pericat ::: (view all by) ::: July 13, 2005, 10:50 AM:

Before long, you won't even care that you look like "Top Gun."

"As you know, Bob, I am not a Martian colonist. But I can play one in my sleep."

#39 ::: NelC ::: (view all by) ::: July 13, 2005, 10:59 AM:

Aww, it's a shame you can't make it to Glasgow, T. I was planning on shyly saying hello then disappearing into the teeming mass of humanity....

#40 ::: Stef ::: (view all by) ::: July 13, 2005, 12:03 PM:

I just had a sleep study last night - I needed a pressure adjustment on my CPAP. I still have goo in my hair from where they attached wires to me.

The first time I got my CPAP (I didn't have a sleep study the first time round, they gave me an auto-calibrating one to use at home), I decided to lie down with the thing on just for 10 minutes to get used to it. Fortunately I had left the front door unlocked; an hour later, my sweetie came in and woke me up.

I like my octopus vacuum cleaner salesman.

#41 ::: John Farrell ::: (view all by) ::: July 13, 2005, 12:44 PM:

World-con is earlier this year. Not the Labor Day weekend as usual. Is that a new change in World con policy--or just this year, I wonder.

#42 ::: Serge ::: (view all by) ::: July 13, 2005, 12:59 PM:

The worldcon is usually NOT held on Labor Day's weekend if it's outside of North-America. Anybody going to NASFiC the following weekend?

#43 ::: Xopher (Christopher Hatton) ::: (view all by) ::: July 13, 2005, 01:06 PM:

I won't be going to Glasgow, either. Those who were looking forward to seeing me serving drinks in practically nothing (again) will have to wait for another occasion. (I now have a leather... but my TMI warning signal just went off.)

Flonase made me bleed. Nose, throat.

I have/had sleep apnea, but it is/was mild. My big problem was extremely loud, disruptive snoring, bad enough to keep me from getting enough REM. I had surgery on my nose to undeviate my septum and widen my air intakes. It helped a lot. I wouldn't let them do the second round of surgery they wanted to do, which was on my throat (singer! no!) and involved, among other things, taking out my uvula. Well, while the uvula isn't used in my native dialect of English, there are several languages which cannot be pronounced properly without one; I declined.

My somnologist (a sleep specialist; she was amused by my name for her specialty) said that young men tend to resist CPAP, and I was no exception. "Try explaining THAT to someone you've just met," was my comment. Never tried it.

Also, I eventually found a way to lose a whole lotta weight, which apparently decreased my snoring enormously. My roommates at Rites of Spring this year assured me that I snored very softly for a while, then turned over and stopped snoring completely. (They did comment that I occasionally spoke aloud in a language none of them could identify, but I doubt CPAP helps with that!) This, mind you, was WITHOUT the Breathe-Right strips or the Anti-Snoring Throat Spray that I use every night at home.

Now if I could just get my ass into bed at a reasonable hour.

It's funny, that Green Lantern poem is clearly an oath, now that I see it again after years. I always thought of it as more of a spell, especially since it was the trigger to make the lantern recharge the power ring. I conclude that it's actually both oath and spell, which makes it more powerful in both kinds.

#44 ::: Serge ::: (view all by) ::: July 13, 2005, 02:01 PM:

One thing I don't understand (based on my wife's own fun time) about your experience, Teresa, is that there was no button you could push to call for help, besides sending out a nasal SOS. (Very Asimovian indeed.)

#45 ::: Dan R. ::: (view all by) ::: July 13, 2005, 04:30 PM:

Xopher,
I've just signed up to have my uvula removed. I've had two scarey experiences in the last three years that involved waking up with difficulty breathing, only to find my uvula swollen to the size of a walnut (well, maybe an acorn). Had to lean forward to breath; went to emergency to get a shot of epinepherine. Nobody at the hospital could explain it, and the otolaryngologist said it didn't do anything anyway.

After sleep tests found no apnea but killer snoring (is there a medical/latin term for snoring?) , the chance to eliminate both the potential for more ER visits AND snoring at once, I'm going for it. Will my Xena impersonating days be over?

#46 ::: Jerry Kaufman ::: (view all by) ::: July 13, 2005, 04:51 PM:

Me, too, Teresa, me, too. (Or is that too many commas?) I wrote about my sleep test and CPAP in Littlebrook 1.

I tried the style with "nasal pillows" but found it less comfortable than the mask, which covers only my nose. Everyone's milage is different, though.

By the way, Serge, the NASFiC, which will be here in Seattle, is not the week after the Worldcon, but four weeks later, on the traditional Labor Day weekend.

#47 ::: Serge ::: (view all by) ::: July 13, 2005, 05:03 PM:

I stand corrected about the worldcon, Jerry. As for NASFiC, we're all set. Got our memberships, our hotel reservation, our plane tickets. And a car to drive around the state, all for research purposes of course. We have superduper mosquito repellent, in case the insect population is as annoying as we fear.

The weird thing about NASFiC is that, after my wife volunteered to be on panels, she got an email from the person in charge. He is one of our friends from when we were living in Toronto and was at our wedding (which, in the proper tradition of SF fans, included watching "Forbidden Planet"). It IS a small world.

#48 ::: CHip ::: (view all by) ::: July 13, 2005, 05:43 PM:

John Farrell: World-con is earlier this year. Not the Labor Day weekend as usual. Is that a new change in World con policy--or just this year, I wonder.

There really isn't any such thing as Worldcon policy. Each committee is nominally independent; in my view the standing rules of WSFS have three main areas:
- Hugo voting
- Picking a future worldcon
- Amending the rules.
There are also lots of bits and pieces, e.g. requirements that each worldcon present a financial report, but IIRC there's nothing about dates. Some of the most important actions, like pass-along funds are purely agreements among the convention committees. (It's not clear that anything under the rules is more than a gentlemen's agreement, as there's no obvious enforcement mechanism for the rules, but many things aren't even written down.) I don't remember why Interaction chose such an early date; AFAIK it wasn't like Bucconeer (1998 -- couldn't get Labor Day and chose early August to be clear of the major SCA event) or LAcon 4 (deliberately one week before to avoid U.S. school ramp-ups).

#49 ::: Xopher (Christopher Hatton) ::: (view all by) ::: July 13, 2005, 06:01 PM:

Dan R., sounds like a good choice in your case, especially if they have no idea why your uvula swelled up like that.

I dunno about Xena, but you won't be able to pronounce the 'r' in French or German, and the 'gh' in some dialects of Dutch. There are others as well. But these seem small things to give up in exchange for, I dunno, living to your next birthday!

#50 ::: Marilee ::: (view all by) ::: July 13, 2005, 06:13 PM:

Since I'm a very large person, the doctors were sure the solution to my sleeping all the time would come from the sleep study. Nope, no sleep apnea, no snoring (I told them that!). Turned out I needed to take some pills at night instead of in the morning.

I tried Flonase to see if it would open my apparently permanently-closed right eustachian tube. All it did was make my nose bleed constantly.

I don't have to worry about my uvula, it and my tonsils resorbed when I was a teenager.

#51 ::: Georgiana ::: (view all by) ::: July 13, 2005, 06:52 PM:

When I had my sleep study with CPAP I dreamt I was summitting Everest with Colby Coombs. I guess it was the air blowing down my throat that did it, in my dream I was fighting with the oxygen tank and could never get it quite right.

We were about an hour from the top when Colby announced he had gone snowblind. I was kind of sad that we had to turn around but it was the sensible thing to do so I wasn't too upset.

Then he said that since I am a writer we weren't going back at all. I was going to have to describe every step he needed to take. I was going to be his eyes all the way to the summit and all the way back to camp.

My reaction was but I'm already tired! I don't have the energy for that!

Teresa I hope the results of your study will aid in a treatment plan that lets you feel better. And I'm sorry about Worldcon.

#52 ::: Erik V. Olson ::: (view all by) ::: July 13, 2005, 08:48 PM:

We didn't get tickets before the iniquitous rise in prices, so Patrick gets to go (Tor pays for him), but I don't.

This is why people collect frequent flyer miles. Want me to check availablity?

(Best contact back by direct email or cell tommorow, office is moving, access to web rare.)

#53 ::: Larry Brennan ::: (view all by) ::: July 14, 2005, 12:07 AM:

All this throat anatomy talk has me thinking of Lorraine Newman declaring cheerfuly, "It'll behoove ya' to care for your uvula!"

#54 ::: Lydia Nickerson ::: (view all by) ::: July 14, 2005, 12:31 AM:

Everyone that I know that is being treated for sleep apnea was "diagnosed" by their sleeping partner. There's something horrible about being woken up by you sweetie's snore, only to hear him choke as he attempts to inhale, and chokes, and chokes, and inhales thank all the gods. That's how I got diagnosed.

Even if you're not having sleep or fatigue issues, treating sleep apnea turns out to be important. Breathing is important, and if you don't do it often enough, your body might become so annoyed that it quits, too. I'm not talking about dying of suffocation. There's a correlation between untreated sleep apnea and heart attacks, and other sudden ways to drop dead. Maybe the body is very jealous, and when you won't breathe with it, it's just certain you're seeing someone else.

Another of the annoying things about sleep disorders is that they tend to come in clusters. I've had three or four diagnoses, by now. The diagnosis appears to depend on the mood and specialty of the doctor on any given week. Oh, and what insurance companies will pay for, of course. I've seen cardiopulmonary doctors, pulmonary doctors, a neurologist, and soon I'll get to see a psychiatrist. That last looks promising, since both the anti-depressants I'm on are implicated in sleep disorders and my brain crip diagnosis comes complete with disordered sleep as a symptom. Maybe a psychiatrist can hash through some of this without suggesting that I just stop taking my drugs.

I don't like my CPAP, but I sleep with it faithfully. Well, almost faithfully. I do fool around a little bit, like when it's too much trouble to move downstairs...don't ask. Its worst habit is that the hose will rip loose from the machine, and then terrible noises ensue, which wake me up.

I've tried the nose pillows. I couldn't hang the night with them. They were incredibly painful. This isn't anyone else's experience. I tried them again a couple months later, and they still hurt like hell, so I ditched that approach.

Last bunch of years, I've used a mask which covers the nose. These things are finicky little bitches. Tighten it too much here, it will give you a headach not to mention making a break in the seal over there. Get rid of the exhaust over the bridge of the nose, and then air rushes out over the cheekbone. And I purely hate the noise of escaping air.

Then there's the intended exhaust from the mask. First of all, I have to be careful to line it up so that it's not rattling the sheet or pillowcase near me because the sound drives me batty. Then, I have to keep it from blowing cold air down my sweetie's neck all night. If I toss or turn the wrong way, it wil all be for naught, and I'll have to rearrange things. That's ok, though, since what's more likely to happen is that I'll roll over, catch the hose with my arm, and rip the sucker out of the machine, requiring the whole thing be done again.

Now, I'm trying a larger mask that covers the nose and the mouth because I sleep with my mouth open most of the time, anyway, and this somewhat diminishes the effectiveness of the CPAP. At first, I felt very claustrophobic. Lately, I've taken to fighting it while I'm asleep. When I wake up, I have the lower lip of the mask clenched between my teeth, as if it were a bit. I can't figure out who won.

I know exactly what you mean about having the air sucked out of you. It just never frightened me. There's something that I do with my tongue and soft palate that makes it go away, I think.

But I sleep, and I have dreams.

#55 ::: Jonathan Vos Post ::: (view all by) ::: July 14, 2005, 12:33 AM:

Larry Brennan:

I recall a line from another TV comedy:

"we can walk on coals
or have ninjas fight us
just as long as we don't
get gingivitis."

Can anyone identify that from memory? I think Google helped a lot of folks identify spoems.

#56 ::: John Farrell ::: (view all by) ::: July 14, 2005, 09:02 AM:

Thanks, CHip for the background on worldcon.

Teresa, my best friend has sleep apnea, and, like Lydia, he dislikes it--but does recognize he sleeps better with it.

His kids call him Darth Vader. With Joe, it was mostly due to weight gain. In fact his symptoms fit one of our 'virtual cases' so well, we signed him up to be the victim--er, I mean, patient in one of the last cases I produced for Beth Israel.

#57 ::: Bruce Arthurs ::: (view all by) ::: July 14, 2005, 09:46 AM:

I've never had sleep problems bad enough to seek a diagnosis.

What I HAVE found, though, is that using the Breathe Right strips at night makes five hours sleep (my usual) feel like I've had six or seven, which has been a lifesaver on occasion. (Literally, since that extra-restful sleep means I don't start nodding off over the steering wheel of the car the next day.)

(Almost totally eliminating refined sugar from my diet the last several months also seems to have helped with the nodding-off problem.)

#58 ::: James Nicoll ::: (view all by) ::: July 14, 2005, 11:05 AM:

I found that the cpap machine made a huge difference in how well I slept and also how quickly I went to sleep, provided I remembered to check the mask to make sure no cat had thrown up in it.

It's probably best to turn off the light after you put the mask on.

#59 ::: Nancy C ::: (view all by) ::: July 14, 2005, 08:54 PM:

Teresa,

You can have any frequent flier miles of mine that I have. E-mail me.

#60 ::: Nancy Hanger ::: (view all by) ::: July 15, 2005, 12:07 AM:

T -- Glad you did get the sleep/CPAP testing done. I'd heard what sounded like some apnea a couple of times you were here in the past; very similar sound to Elric's.

Elric has used the full-face mask as well as the nose-with-chin-strap, and I think he prefers the full-face model, though you should probably ask him. He has found that with constant use, the masks do indeed need replacement every few years, as the plastic starts to become brittle. Luckily, most places that supply the CPAPs send you a new face mask every year or so as part of the original payment or insurance coverage, at no extra cost. Don't do what he did and take an ailing mask with you to a con in a far-away city; odds are it will break on your first night, and then you'll be gasping all weekend. Murphy loves CPAPs.

You are welcome to bring your bear and hang out with us other can't-afford-to-go-to-Scotland (waaaa!) people in lovely New England. Scotch, a grill, deck chairs, commiserations about how we would all rather be in Scotland, and bug repellent. What more does one need? :-)

#61 ::: Anna Feruglio Dal Dan ::: (view all by) ::: July 15, 2005, 01:52 PM:

A lot of people won't be going to WorldCon this year. A friend of mine from Italy can't afford to go, and it means missing out the only logistically possible WorldCon for her for the foreseeable future.

All in all, I think the world sucks right now.

#62 ::: cee ::: (view all by) ::: July 16, 2005, 03:57 AM:

You might be interested in an interview I heard on the Canadian Broadcasting Corp. [CBC] current affairs program, As It Happens, regarding special voice exercises which strengthen the palate, tongue & throat muscles & are being studied as a possible cure or at least a help for chronic snorers & mild to moderate sleep apnea sufferers ... & their spouses/partners.

Singing Teacher, Alise Ojay first conducted a study, using the exercises she'd developed, in 1999 at the University of Exeter & is now conducting further study, using her newly produced CD, in two wings at Exeter Hospital.

You'll find the interview in Part 2 of the June 29th show... about 15 minutes into the tape. It's approximately 7 minutes in length. [NOTE: the page is particularly confusing as they seem to have archived everything twice]. You'll see the hyperlink for Part 2 near the top of the page, then you can scroll down 'til you reach the very last entry, Singing and Snoring, for a synopsis of the interview.

#63 ::: Joel Rosenberg ::: (view all by) ::: July 17, 2005, 11:56 AM:

Interesting. My reaction, something like a decade ago, to my first CPAP test was immediate, and rather different, along the lines of "ah, so this is what falling asleep comfortably is like."

When they got to the titrating stage -- figuring out the minimum pressure that will do the job -- the techs quickly found one, and were amused at my sleepy request to continue "testing" for a few hours.

As to sticking with it, your call, of course, but for those of us with OSA (and I'm not sure that does or doesn't include you), the word from the techs I've talked to is that everybody eventually adjusts. That's probably an exaggeration, but it might only be a slight one.

Mileage varies -- I can get by with the face mask, but the "nose pillows" work best for me.

#64 ::: Joel Rosenberg ::: (view all by) ::: July 17, 2005, 12:00 PM:

Oh, and Lydy -- not quite everybody you know who has OSA was diagnosed by a sweetie/partner. I was diagnosed by a Canadian pulmonologist in the next hotel room just about twelve years ago -- he politely knocked on my door the next morning, and informed me that I had OSA; he'd been listening to my "heroic snores" all night, and handed me his business card.

"I'm from the States," I said, in some embarrassment at having kept him up all night.

"That's okay; they treat that there, too."

#65 ::: Bob Oldendorf ::: (view all by) ::: July 22, 2005, 01:22 PM:

TNH: The only alternate communication channel I could think of was that they were monitoring resistance to the CPAPís airflow. Iím not looking forward to explaining to my neurologist why at one point the test data includes several repetitions of a Morse Code SOS signal, produced by raising and lowering my CPAP nosepiece.

From the news:

FCC Proposes to Drop Morse Code Requirement for All License Classes

Presumably, "SOS" will be the last bit of Morse to persist in the folk memory.

#66 ::: CHip ::: (view all by) ::: July 23, 2005, 03:12 PM:

Bob: George O. Smith is rolling in his grave -- but then, he never did realize that tech would continue to improve.

#67 ::: Bob Oldendorf ::: (view all by) ::: July 23, 2005, 04:16 PM:

CHip:

ACK

#68 ::: Georgiana ::: (view all by) ::: July 23, 2005, 08:01 PM:

By any chance has anyone else ever been told that they are cured of their apnea? And to quit using the CPAP even though they snore all night long and feel awful the next day?

If anyone did stop using their CPAP after a long period of time how did you get used to sleeping without it? It was hard enough to get used to sleeping with it, sleeping without it is not working so well for me. Any advice is much appreciated.

#69 ::: David St Lawrence ::: (view all by) ::: August 16, 2005, 07:49 PM:

As a long-time CPAP user, I found an easy solution to the problem of sleep-disturbing air-flow and a hose that is always in the way of something.

I mounted a small coat hook on the wall above my pillow and drape the hose over it.

With the hose descending to my mask I sleep serenely, totally oblivious of the fact that I look like one of the supporting characters in "Coma".

This simple tactic results in airflow that is directed upward and away from your face. I am usually able to find similar support points while traveling.

#70 ::: Scott W Sees Comment Spam ::: (view all by) ::: March 20, 2007, 11:44 PM:

Amusing. Just as I was making one last comment thread check before going to sleep.

#71 ::: Teresa Nielsen Hayden ::: (view all by) ::: March 21, 2007, 12:17 AM:

All gone now. Thanks for pointing it out.

#72 ::: James McCauley ::: (view all by) ::: March 22, 2007, 03:29 PM:

The ninjas/gingivitis poem was spoken by Mallory's boyfriend on Family Ties in the '80s.

#73 ::: Carrie S. sees drug spam ::: (view all by) ::: March 01, 2010, 02:41 PM:

Mostly-meaningless comment, URL appears to head to a cheap-meds site.

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