The good, the bad and the ugly---night 1

[robysue]

Last night was my first night on CPAP.

The Good:
The S9 Auto says my AHI was 0.5 with total AI = 0.5 (all OA).
I didn't pull the mask off last night in my sleep.
Once I got to sleep, I got some really nice sleep in the middle of the night.
My sinuses liked the filtered air and they were NOT stuffed up when I woke up this morning.
The cat didn't attack the hose or the CPAP last night.


The Bad:
It took forever for me to get comfortable enough to fall asleep. I often take a very long time to get to sleep and at my request the RT set my ramp time to 45 minutes. (I know I can change this---she showed me how and I played with the ramp setting after setting the machine up in my bedroom last night.) I know very well that I was still tossing and turning long after the ramp period was up. I'd estimate that it took me about an hour or a bit more to fall asleep last night.

I prefer to sleep on my side and the exhale holes on my Swift FX kept blowing on my right arm.

My neck is sore this morning. I think this is because of the awkward position that I finally drifted off to sleep in. With no CPAP, I usually would sleep on my side with my nose pointed down and snuggled into the edge of my pillow or (my real preference) with my nose snuggled into my hubby's armpit or side. Whenever I tried to get into this position with my mask on, the exhalation flow would be really super bad on my arm or (even worse) be noticed by my eyes. So to try to alleviate the eyes and arm's problems with the exhalation flow, I turned my head upward away from the pillow and I think that's why my neck hurts. Clearly I've got some work to do in trying to find a more comfortable sleeping position.

Some bloating from air in my stomach. I'm really worried about this one. Once the CPAP was ramped up to my full pressure of 9cm, it felt like the air was blowing through my nose and into my mouth. My mouth was tightly shut and I don't really think that mouth breathing or mouth leaks was the issue since at the worst moments I felt like I was getting chipmunk cheeks from the additional air in my mouth. A couple of times it got bad enough where I moved the nose pillows off my nostrils so that I could exhale the excess air out of my mouth and then put the pillows back where they're supposed to be.

Sore and dry nose and very dry lips I thought I had the humidifier running properly last night, but there was very little water that was evaporated when I emptied the water retainer this morning. So I'll need to check that part of the manual again. I'll also need to find something I can use on the outside of my nose and on lips that doesn't cause problems for my skin and also doesn't contain petroleum. That might be a challenge.


The Ugly, Indifferent, or I don't know whether it's good or bad:
The machine's on-board data display listed leak rate as 7.4 L/minute. Is that good or bad? I don't know.

Not enough sleep. By the time I got the bedroom rearranged so that the CPAP machine could be placed on a small table by the bed on *my* side of the bed, I was exhausted, but keyed up. So hubby and I watched StartTrek, the Next Generation when it came on at midnight. That meant that I didn't get into bed until after 1:00 AM, and I don't think I fell asleep until after 2:00. The alarm went off at 6:45 AM (as usual) and I had to get up by 7:15 (as usual). I had the CPAP on and running 5.8 hours, but during that time I woke up at least twice for extended periods of time in addition to the hour that it took me to get to sleep. I'd estimate that I got somewhere around 3 1/2 to 4 1/2 hours of actual sleep last night.

Now that I'm not breathing filtered air any longer, my sinuses have started to clog back up due to ragweed.

My tossing and turning early in the night bothered hubby much more than the hose did when I finally settled down and used him as my pillow.

[Tired Linda]

Bravo! I'd say you did pretty darn good for the first night. I'm jealous .

I've been at this about 5 weeks now, and I still fuss and fidget and have a hard time getting comfortable, but it's getting better.

the RT set my ramp time to 45 minutes.

What pressure?

I prefer to sleep on my side and the exhale holes on my Swift FX kept blowing on my right arm.

Made me crazy at first. It does get better. You'll soon learn to either pull the sheet/blanket up over your arm, wear long sleeves, or move your arm up or down to minimize the wind.

Clearly I've got some work to do in trying to find a more comfortable sleeping position.

You may want to check out a different pillow. Do a search on here and you will find people here use every kind imaginable. I found a cheap, foam contour pillow that I cut in half lengthwise. My head goes in the "ditch" and the front of the mask sort of hangs off the edge. (usually, but I do move it around and the smaller size lets me without disrupting my husband all the time)

Some bloating from air in my stomach. I'm really worried about this one.

This may very well resolve itself on it's own, remember, last night was the first night....
I woke up with chipmunk cheeks, too, after the first few nights, but I learned to press my tongue up against the roof of my mouth to help make a seal.

Sore and dry nose and very dry lips I thought I had the humidifier running properly last night, but there was very little water that was evaporated when I emptied the water retainer this morning. So I'll need to check that part of the manual again. I'll also need to find something I can use on the outside of my nose and on lips that doesn't cause problems for my skin and also doesn't contain petroleum. That might be a challenge.

I'm not familiar with your machine, so I can't speak to that, but you might want to try Lansinoh for the dryness. It's found in the baby section of the drugstore and it's 100% lanolin--nursing mothers use it for cracked nipples. You don't need much, but it works wonders.

This is all stuff that's helped me, and I learned it all from the people here. The hardest thing to remember is that this is a work in progress and that some things take longer than others to get adjusted to. "Baby steps" they tell me. I don't like it. I want it fixed right away so I can get some decent sleep. But I can see progress, and you will too.
Linda

[Breathe Jimbo]

Watching TV right before trying to fall asleep is generally not considered good sleep hygiene, unless, perhaps, it is Andy Warhol's movie of one guy sleeping all night.

[Janknitz]

Sounds like a great first night to me!

It's going to take some time to get comfortable with all this equipment so you can fall asleep easily. Be patient with yourself and the process. Now that I am used to everything, I fall asleep more easily than I did before CPAP--putting the mask on is my body's cue that "now it's time to sleep" and I'm out almost immediately after I've put my head down and tugged the headgear once or twice.

It IS hard to escape the arctic blast from the stupid angle of the Swift vent. Whose stupid idea was that???? I use a hose management system that hangs the hose over my head (homemade, you can see it on my blog) and this makes the vent flow 45 degrees up and out. Cold air still bounces off my bedding in certain positions, but I snuggle in my quilt and it doesn't bother me anymore. You will figure out your own system soon enough.

Hang in there. You're going to have good nights and bad nights, and the bad will outnumber the good at first. But if you remaind persistent, the good nights will start winning soon.

[elena88]

Hi there!
congrats on your first night!

I had a heck of a time my first few weeks... I got some great tips here..

dont change your routine at bedtime, just add the machine.. I tried to do all this perfect sleep hygiene stuff and it backfired for me, but it helps
other folks.. so do what works for you..

Now the side sleeping, YOU can do this.. you just have to train yourself how to use your hands to protect the mask.. I do this by either holding
my hand under my chin like Im holding an ice cream cone, or holding my hand flat and pushing an indentation into my pillow right below my mask..
Or you can try sleeping on the edge of your pillow, but that didnt work for me.. Now when I sleep my hands do all the mask protection.. IN MY SLEEP!
This took awhile, but now its natural..


There are also cpap pillows you can try.. look on line for them..

the air blowing on your arm, you can just take a flannel jammie shirt to bed with you and cover your arm, and in the summer use light cotton, then
after awhile you probably wont need it..

You did really good for a first night! Hang in there!

[Jersey Girl]

Dear Robin,

All in all, you did better than most on your first night. I use a Regenesis buckwheat hull pillow now that I am on cpap. It works on a similar concept to a bean bag chair - you can run your hand over it and make a spot for your mask anywhere you like on the pillow. I got it from http://www.pur-sleep.com. My leak rate ranges anywhere from 0.00 to 0.04 but I've been at this for awhile. The important thing is that air is not escaping out of your mouth - because then you are not getting all of your therapy. Of course, you don't want to feel bloated in your tummy either. I never had the bloating, but hopefully others can address that issue for you here. After some time your body will sense that mask equals sleep and it will not take you nearly as long to get to sleep. Right now it's all new and your body needs some time to adjust.

I use a small dab of Lanisoh lanolin ointment on my nares - just a teeny, tiny dab. That helps the nasal pillow adhere a little better. You can find it in the drug store near the nursing mothers supplies. It won't damage or hurt your mask at all!

Another thing that I do naturally now is that I put my tongue up on the roof of my mouth by my 2 front teeth. For some reason, it keeps my cheeks from filling with air and makes for a good night's sleep for me.

About the Ramp: Some people like it and some people like me don't use it. My pressure is 8 and if I use the ramp, I feel as though I can't get enough air to breathe.

Wishing you peaceful, restorative sleep,

Jersey Girl

[robysue]

Thanks for all the tips.

Some responses to some of the tips provided:

1) It was really hot last night here in Buffalo---particularly for this time of year---and we don't have A/C. The hot muggy night was miserable sleeping weather and it undoubtably added to the problems I had getting to sleep. I'm not real worried (yet) about the fact that it took so long. But that was one of the "bad" parts of the experience: I've been more tired today because of lack of sleep than I have been in a real long time. I know it will get better in time, however.

2) Protecting my arm with long sleeves or a blanket will work well in the winter time. Not so well on a night like last night: It was way too hot and humid for long sleeves last night. Fortunately fall has got to arrive pretty soon since it is late September. Hopefully I'll be well used to the CPAP before the hot weather comes next summer.

3) Pillow: My favorite pillow is a soft down pillow that I've used for years. It's easy to mush around into lots of shapes. Couldn't find a good shape last night that would both accomodate the hose, my neck, eyes, ears, arm, and nose. However I expect I'll get better with practice. I don't like having my head right at the edge of my pillow for some reason. I love to snuggle into the pillow with my nose face down. But that was letting too much air from the exhaust flow hit my eyes. So this falls into the category of "baby steps"---I'll keep working on finding good positions. I like the Jersey Girl's idea for side sleeping: "you just have to train yourself how to use your hands to protect the mask.. I do this by either holding my hand under my chin like Im holding an ice cream cone, or holding my hand flat and pushing an indentation into my pillow right below my mask." I sometimes sleep with my hands pretty close to this description already. So I'll be sure to try to do this one!

4) As for the bloating, only time will tell if/when this gets worse or better. I grind my teeth pretty severely at night. (I have been wearing a TMJ mouth splint for decades.) I've finally discovered an "advantage" to all this teeth grinding: I do not open my mouth at night when I'm asleep---I'm too busy grinding to breath through my mouth. Any tips on relieving the chipmunk cheeks are greatly appreciated. Last night when threatened to become uncomfortable, I just opted to move the nasal pillows off my nose for a couple of minutes so that I could consciously open the mouth and let out the extra air. Then moved the pillows back to the nose and got a decent seal reestablished pretty quickly. At least I think it was a decent seal since the only place I could feel any air leaking was through the exhale holes.

Now two more questions:

1) What kind of a leak rate should I be eventually aiming for? And is 7.4 L/minute good, bad, or indifferent for a newbie?

2) How long should I give the Swift FX before moving onto something else if the exhaust flow continues to bother me? I'm kind of figuring that I ought to give it a full week before abandoning it since this is the only thing that's really bugging me about the mask. But I figure that if I haven't made progress on the exhaust flow problem in a week, then I might ought to switch the Swift FX in for an Opus 360. At the DME I had a great deal of trouble deciding between the Opus 360 and the Swift FX. Nothing else even came close in comfort compared to the two of these masks. And I liked them both, but they each had a couple of quirks as well.

[Janknitz]

I'd try the Swift LT before you try the Opus 360. I could not get a good seal on the Opus and that hard plastic was NOT comfortable to me in side lying. The Swift LT is very adjustable and it vents straight out, instead of down. Meanwhile, even just a sheet between your arm and the airflow helps, and on warm nights it's kind of like your own personal air conditioner I like to put up a barrier a few inches from the vent to make it blow back into my face to cool me off. We're in for a hot weekend here--UGH! Why is always hot on the weekends, when I have AC only at work????

Keeping the tongue pressed against the roof of the mouth on that ridge behind the front teeth will reduce the amount of air that collects in your mouth to be swallowed because that position seals off the nasopharynx in most people. I find that the air pressure pushes my jaw forward just a few milimeters, and I can't grind my teeth in that position because the teeth don't really fit together in that position. BUT, my lower jaw and TMJ were somewhat tender at first. Did you mention you have a mouth guard to stop the grinding? You should probably use it with CPAP.

[jmcd]

A few things I did to ensure that I was successful with my therapy. . .

I purchased a firm memory foam pillow (Bed Bath and Beyond) with the idea that it would make me more comfortable sleeping on my back. I've always been a side sleeper and was worried about being able to sleep on my side with my mask on. I find it very comfortable sleeping on my back now and think some of that is because I'm sleeping better. However, I travel a lot and find that I can sleep on my side with softer pillows where the firm memory foam pillow doesn't have enough give and pushes my mask. I'm still using the memory foam pillow at home because it is working.

I have my machine set to ramp for 45 minutes too. My EPR is set at 3. I sometimes get sort of a panic feeling with the air rushing at me that almost makes it feel like I'm not getting enough air. I find I can control that by using relaxation techniques to help me relax and breath normally. For me this includes a bedtime routine that gives me time to unwind. I go to bed early enough that I have some time to read, watch television, or simply talk and love on my dogs. Its all about what YOU find relaxing. I like the aromatherapy stuff available through Pur-Sleep (see cpap.com) but have also used pure vanilla extract on a cotton pad or Vicks vapor rub on a little piece of foil near the air intake of my machine. Sometimes a warm shower although I'm in Phoenix and we're still in triple digit temperatures so staying cool when I go to bed is a bigger challenge or using lotions with relaxing scents help me relax. Not rocket science, but it has made my therapy very manageable. I must admit, I look forward to going to bed and putting my mask on because I'm so excited about being able to make it through the day with a clear head.

Keep it up - the therapy is life saving. Good luck.

[robysue]

I'd try the Swift LT before you try the Opus 360.

Tried the Swift LT. Really didn't like the L-shaped thingies that sit on your cheeks. I've got really high and pronounced cheek bones and kind of hollow cheeks, and those L-shaped things dug into my cheeks even before starting to tighten the head gear. That mask was quite clearly not for me. The hard plastic on the Opus was a concern for me and that was what finally tipped me into choosing the Swift FX. But the pillows on the Opus fit me ever so slightly better than the FX.

[robysue]

I purchased a firm memory foam pillow (Bed Bath and Beyond) with the idea that it would make me more comfortable sleeping on my back.

Don't think this will work for me. My neck absolutely hates firm pillows as they always are too thick for me to comfortably use. Also my lower back absolutely hates sleeping on my back. When ever I do so, I've got a nasty backache the next day. Sleeping on my side, my back is just fine.

[robysue]

Responding to lots of comments about both sleep hygiene and the need for a bedtime routine.

I typically do practice some aspects of sleep hygiene since insomnia has been a life-long issue for me. I don't do anything except sex and sleep in the bedroom. Banned my hubby's beloved tv many years ago because it was causing issues for me when he'd fall asleep with it on. Don't read in bed even. Do let myself daydream *pleasant* daydreams while relaxing and waiting for sleep to come. Have learned many techniques for NOT dwelling on the day's problems or the next day's problems when I'm having trouble getting to sleep.
Learned to NOT look at the clock unless I'm just about fed up to the point where I know I need to get out of bed and do something until I'm feeling sleepier. [So when I said I watched NextGeneration last night, that was in the living room, fully dressed and because I was no where near sleepy enough to go to bed. Tired, cranky, and stressed out, yes. Sleepy, No. [kind of like a toddler who's overtired and too keyed up to fall asleep.] So what works for me is to do something I like (and I love Star Trek) since there was no chance that I'd be falling asleep anyway.

Bedtime routines, however, I do need to work on. But many that work for others won't work for me: Aroma therapy would make me sneeze---my nose dislikes almost all "artificially" induces smells, no matter how pleasant since they make me sneeze. Some scents that are pleasant for most people are also migraine triggers for me. Reading in bed----won't work: I'll literally stay up all night with my nose in the book and get no sleep. Warm baths might work, but I don't reallly know if I can work them in consistently. Showers, even warm ones, tend to wake me up. Yoga works, but is hard for me to remember to do with all the other chores.

[elena88]

I would hold on to that swift fx over the opus, I have had both, and although the opus was comfy when you tried it on, sleeping with it
is a different matter, you have to toughen up your nose for that one.. believe me, the softer rubber on the fx is what you need to
be comfy.. once you train your hands to make little " pillow holes" youll be fine, its going to take some time though.. so be patient..

It can take weeks even, sometimes months.. but youll get there, so dont think something isnt working after just one week..

Also, I sleep with a fan on, and that is a very nice distraction, its on my side of the bed, and hubby doesnt feel a thing.. I have it sitting on my
vanity across from the bed.. so its not blasting, just pleasant..

If you have had trouble sleeping your whole life, once this machine starts to work, you may find yourself yawning at ten pm and going to
bed much earlier.. it takes awhile for your body to adjust getting this good dose of oxygen.. some people adjust in days, other weeks or months..
This is a long haul, so baby steps... you might be lucky and nail it quickly though! I hope so!

elena

[jweeks]

I'd try the Swift LT before you try the Opus 360.

Tried the Swift LT. Really didn't like the L-shaped thingies that sit on your cheeks.

Robysue,

I also noticed the annoying angle of exhaust from the Swift FX. The FX is so comfortable (or so much less uncomfortable) compared to anything else I have tried. I made two attempts to make it work, but I gave up after a few days each time. I use the Swift LT. The plastic parts don't bother me (I have a different shaped face), but I have seen others use a thing called a pad-a-cheek, which is a wrapping with a bit of padding. It prevents the mask from digging in and leaving marks.

Sleeping from 2AM to 6:30AM isn't all that much sleep, especially for someone just getting started. What works best for me is that I simply go to bed when I am tired, and I get up when I wake up. Even if you cannot do this long term (which would be hard with a family), perhaps you could take a week of vacation (or even medical leave) and just lounge around the house and sleep off your sleep debt. Once I got fully adapted to using my CPAP machine, I found that I fell into a far more regular sleep pattern than at anytime previously in my life.

Breathing the filtered air has made a remarkable change in my life. Due to asthma and allergies, I was always stuffed up when I woke up in the morning. It would often be stuffed up for months at a time. Since starting on CPAP, my nose has been clear. Other than one nasty head cold, my breathing during the daytime is vastly better than it was before. This has allowed me to be far more active, and I feel myself getting stronger as I do more physical activities. This alone was worth the price of admission, sleeping better is almost a side show in comparison.

-john-

[robysue]

Again, thanks for all the hints, tips, and positive feedback and encouragement.

My overall assessment of night 2 is that it's probably pretty good evidence that I'm doing pretty well in adjusting to the CPAP. But I really do wish that I felt like I was getting more than about 4 hours of sleep. I'm more tired today than I usually am and I'm feeling pretty sleep deprived in the sense that I feel the way I do after I have to I pull an all-nighter grading papers to get grades in on time.

Night 2's Good, Bad, and Ugly list:

The Good
* AHI is 0.3
* Kept the mask on all night (in bed for 8.7 hours according to the S9)
* Sinuses still like breathing that filtered air: No ragweed pollen seems to get through at night so I'm not sniffing and coughing and sneezing at night!
* Made some progress on dealing with that annoying exhaust flow. Not perfect, but better. I really do think that in time I'll find some ways of squishing my down pillow(s) around to minimize this annoyance. So I'm hopeful that I'll not need to return the Swift FX.

The Bad:
* Can't talk to my hubby while in bed and trying to get comfortable. Hubby's got a suggestion of coming up with non-verbal signals to let him know I want him to roll over or curl around me or .... Don't know if this will really work since he's a pretty deep sleeper and in the past I've always had to poke him and then verbally reinforce what it is that I want him to do.
* While I was in bed trying to sleep for 8.7 hours, I really don't think I got much more than 4 1/2 hours of sleep. It took an extremely long time for me to fall asleep: Hit that ramp button TWICE before finally dropping off "for real" and that means it must have taken me over 1 1/2 hours to fall asleep. Tossed and turned this whole time---not relaxing at all. Even thought about getting up to do something for a while until getting sleepy again, but decided that taking the mask off and putting it back on would be too much trouble. Everytime I started to get almost comfortable, something would wake me back up: hot/cold issues with different parts of my body wanting different things. Didn't help that the cold parts were not contiguous; the exhaust flow bouncing off the pillow or blanket back onto (one) eye; nose itches; the need to swallow, which then would irritate my stomach because of swallowing excess air, etc.
* Woke up at least twice in the night and had serious problems getting back to sleep. One time I woke up feeling like I could not breathe. Checked where the exhaust was blowing (it wasn't blocked) and did some "concentrate on your breathing---take deep breaths" relaxation techniques that I've learned from yoga. But it's really hard to take deep, relaxing breaths on the CPAP. The other time I woke up was because of a combination of air in my tummy and the exhaust flow bothering me. So I hit the ramp button and eventually got back to sleep that way.
* Air in the tummy this morning. Along with an irritated nose (outside is itching, inside is feeling overly dried out)
* Woke up with a pretty nasty tension headache this morning and did not feel at all rested. Indeed, I felt so rotten that I had a major crying jag before I and my husband got out of bed and after I took the mask off so I could talk to him.

'b]The Ugly, Indifferent, and I don't know:[/b]
* The cat jumped on my head very early this morning (like at 5:30am) and he clearly wanted to play with the tube. Took the nasal pillows off long enough to yell at my hubby "Get the cat OUT of the room!" Wished I could have run the cat out of the room myself without having to wake my hubby up.
* The dang sinus headache and nasal stuffiness kicked in about 30 minutes after getting up.
* Still don't know what to make of my leak rates. Last night's was 8.4 L/min
* While my S9's on-board display listed AHI = 0.3, it also listed Total AI= 0.2 and CAI = 0.1. I have no idea whether I should be worried about this, but my baseline sleep study had my Total AHI = 3.5 with no central apneas and no mixed apneas. My baseline RDI = 23.1 with about 85% of the respiratory events listed as "Hypopneas with Arousal," which for some reason my sleep center didn't count towards their computation of AHI. It was my RDI that lead to the diagnosis of "moderate obstructive sleep apnea" with the recommendation of using CPAP as treatment. So I'm pretty sure that at this early stage, the CPAP is eliminating most of my respiratory events, I am wondering about that CAI number.