CPAP newbie looking for guidance

[Staedtler]

I'm writing this late at night because I can't get to sleep. I found the irony amusing. :-)

I was diagnosed with sleep apnea about two years ago, after a relatively unpainful sleep study. After what seems to be the prerequesite three-month waiting period, I got the results back and a prescription for a dental appliance. Another night of titration apparently showed it worked (although I sure as heck couldn't tell). I suffered through a few months of dry mouth and discomfort until finally one morning I woke up with my jaw seemingly dislocated. Four days later it felt normal again, and I never used the !@#$ing appliance since.

Having moved to a different city, I found a new doctor and explained my symptoms. I said I had undergone two sleep labs already, but for his benefit (and I sure didn't complain either) I'd undergo another one locally. Before the study, I filled out a form and explained I had already undergone two labs, but the technician said that wasn't a problem. Another three months go by (sigh), and I get my results back: I have sleep apnea! Oh, and Ontario's public health plan won't cover more than two studies per year -- you should have told us something. (Ultimately my doctor ate that cost, which is good 'cause I can't handle any more student loans.)

My faith in modern medicine not completely eliminated, I went for the CPAP titration prescribed by my doctor. I slept great with the nose mask on, perhaps because my mouth gaped open the entire time. :-) The tech tried taping my mouth shut, but my need for sleep defeated even that countermeasure. After the tech finally gave in and broke out the full-face mask, I was unable to fall back to sleep, and I was sent on my merry way home.

Despite the difficulties, my doctor was certain enough to prescribe a CPAP with a presure of 7 cmHg. He set me up with a local CPAP provider, and they left a message on my answering machine a few days later. I called back (during business hours) and got their voice mail, so I left a message. They called back while I was at school, and left me a message. I kept calling back from school during work hours and kept getting their voice mail... but now they weren't calling *me* back. After a week of that nonsense I pretty much had to "tattle tale" to my doctor, explaining that I couldn't get in touch with the people he referred me to. The next day I got a call from an apologetic CPAP provider employee. :-)

So I went in for a "fitting." Going in I had absolutely no knowledge of CPAP, other than that it applies presure to the airway to prevent the throat from collapsing during sleep (or something like that). I mean, I learned that much from having been hooked up to one during a sleep lab. I don't think I learned anything new during the appointment, except that the pressures go from 4 to 22, and I was prescribed a 7. The thing I thought was cool was that the machine can "ramp" from 4 to 7, so I can acclimate while waiting to fall asleep (which can take 30-60 minutes for me -- too bad the longest ramp time on this thing is 20 minutes). I was allowed to take this bulky setup home -- along with a full-face mask -- for a free one-month trial.

I actually slept great the first night. It was the total opposite of my CPAP titration experience. In the morning I was surprised not to feel like a zombie -- my mind was absolutely clear, like a fog had lifted. Unfortunately, the rest of my body wasn't in tow. I struggled through the day (as I often do), looking forward to the next night of sleep. I slept just as well, but I felt even more tired in the morning. The brain was still working, but my body was refusing even more to cooperate.

About 7 days later, I'm up late posting this message 'cause I can't sleep. I've missed an entire week of classes because I keep sleeping in in the morning. Also, during the day my breathing often feels laboured, obviously a reaction to the lack of pressure during my waking hours. I've finally succumbed to my lack of knowledge, and I feel confused and agitated by what's happening to me.

I apologize for that long preamble, but I thought it might help add context to the following questions. I'd be grateful if anyone can give me some guidance.

1. Is laboured breathing during the day normal? Does it ever go away, or might I simply become used to it eventually?

2. How long should I "stay the course" with my current equipment/settings until it's safe to say things need to change? I can't afford to keep missing classes at this rate, but I refuse to go back to sleeping "au naturel" for fear of my own life.

3. How can I decide what needs to change? I've seen some posts in this forum talking about self-titrating, but I don't know enough to dare attempt anything like that.

4. What exactly is the function of the heater/humidifier? I was told to fill it nightly with just enough distilled water to last the night. The only purpose I've gleaned so far is for it to keep my mouth from drying out overnight (and yeah, it happened once. :-) ). I have the nagging feeling, though, that there's more to it than that. I've seen the term "rain-out" used, but I haven't figured out why I should turn the device high enough to allow that to occur.

5. Is it normal to be kept in the dark by one's doctor/equipment provider? I know I only have myself to blame for not asking enough questions, but maybe I'm better off anyways to look elsewhere for all the info I need?

I'll also mention that I'm expected to purchase my own CPAP at the end of this one-month trial. I certainly intend to, as I believe this is the path I need to take to join the ranks of all the other "normal" people in society. I'm going to need all the time I can get to choose the right equipment for me, it seems. :-) I'll definitely be using this site regularly to help myself out.

Thanks again to anyone willing to offer advice.

[bdp522]

You came to the right place! This is the only place I've been able to get help. You need to tell us which machine and mask you have. Just fill out your profile. This will allow better answers to your questions.
Everyone is different, some people do well on xpap from the start-some take months to get used to it. Some see immediate results-some see slow improvement.
Yes, you can self-titrate. If you post your sleep study results(AHI OA HI) it helps the more experienced members to help. It helps if you have software to get readings from your machine.
Some MDs and DMEs(equipment providers) work with you, some think you should follow orders, and some(like mine)think once you get a xpap they are done and you're on your own.
The most important thing is DON'T GIVE UP!! Keep asking questions and someone here will help you find the answers. If you click on the light bulb at the top of the page, you will get lots of information about xpap.

Brenda

[oldgearhead]

Hi, and welcome to the best Apnea sleep forum on the web. You may
want to click to light bulb and get a lot of the basic information.

Try to get a copy of your sleep study results. If you are only experiencing
obstructive sleep apnea with no PVC's, RLS, and etc. Get an APAP and set it
for 7 minimum and 11 maximum. Keep using the FF mask. Then get the
software for your PC and monitor your results. The RemStar Auto is the
only APAP that is able to deliver exhalation relief and auto-titration, at the
same time.

Many folks, my self included, would not be able to inhale with a pressure
of 4 cm/H2O, without difficulty. You may want to try to sleep without the
ramp.

[Offerocker]

I'm writing this late at night because I can't get to sleep. I found the irony amusing.

...some of us do our best writing 'during the night!"

I was diagnosed with sleep apnea about two years ago, after a relatively unpainful sleep study. After what seems to be the prerequesite three-month waiting period, I got the results back and a prescription for a dental appliance. Another night of titration apparently showed it worked (although I sure as heck couldn't tell). I suffered through a few months of dry mouth and discomfort until finally one morning I woke up with my jaw seemingly dislocated. Four days later it felt normal again, and I never used the !@#$ing appliance since.

Interesting that you were Rx'd for the 'dental appliance'!
Do you have Bruxism (teeth grinding/clenching)? If so, what does your dentist say? I had an 'ENT' made by my dentist ($$$), and ended up making my own "Boil & Bite", which worked better for me - although there have been warnings against these, due to causing your jaw to be in a different position. Check this out via search on this forum. Depends on your situation.

... I went for the CPAP titration prescribed by my doctor. I slept great with the nose mask on, perhaps because my mouth gaped open the entire time. The tech tried taping my mouth shut, but my need for sleep defeated even that countermeasure. After the tech finally gave in and broke out the full-face mask, I was unable to fall back to sleep, and I was sent on my merry way home.

That's too bad, about your not getting to use the full face mask for very long! DO try to stick with taping your mouth closed. There are many articles on this subject here. Many of us simply need to use a strip of special tape down the center of their lips. After a few nights, you will WANT that tape there.

Despite the difficulties, my doctor was certain enough to prescribe a CPAP with a presure of 7 cmHg. He set me up with a local CPAP provider, and they left a message on my answering machine a few days later. I called back (during business hours) and got their voice mail, so I left a message. They called back while I was at school, and left me a message. I kept calling back from school during work hours and kept getting their voice mail... but now they weren't calling *me* back. After a week of that nonsense I pretty much had to "tattle tale" to my doctor, explaining that I couldn't get in touch with the people he referred me to. The next day I got a call from an apologetic CPAP provider employee.

...welcome to the world of dealing with *some* DME's.

The thing I thought was cool was that the machine can "ramp" from 4 to 7, so I can acclimate while waiting to fall asleep (which can take 30-60 minutes for me -- too bad the longest ramp time on this thing is 20 minutes).

Re it taking you 30-60 minutes to fall asleep:
Maybe you're not 'tired enough' to sleep/don't relax before going to bed/etc.
Do you watch television in bed? Sometimes this can be a detriment, especially if it's something interesting. I usually have it on, with the timer, and it rarely interferes - but when it does, it means getting up and doing something mundane until I'm sleepy again.

I was allowed to take this bulky setup home -- along with a full-face mask -- for a free one-month trial.

LUCKY YOU!

I actually slept great the first night. It was the total opposite of my CPAP titration experience. In the morning I was surprised not to feel like a zombie -- my mind was absolutely clear, like a fog had lifted. Unfortunately, the rest of my body wasn't in tow. I struggled through the day (as I often do), looking forward to the next night of sleep. I slept just as well, but I felt even more tired in the morning. The brain was still working, but my body was refusing even more to cooperate.

I'm wondering if there may be other issues!
Did they test your oxygen level? That could be a contributing factor to your BODY not cooperating! If possible, see a pulmonary doctor for a breathing test, &/or heart doctor for a stress test. First, wait for other members' comments on this issue...and wait another week - it takes the body 2 weeks to 'catch up' to change. Are you on any medications? So many contributing factors to this problem! I wish you well on clearing up this problem. There are people here who CAN offer you insight on this one.
I've had same problem, but solutions may be different for you; depends on the cause/s.

About 7 days later, I'm up late posting this message 'cause I can't sleep. I've missed an entire week of classes because I keep sleeping in in the morning. Also, during the day my breathing often feels laboured, obviously a reaction to the lack of pressure during my waking hours. I've finally succumbed to my lack of knowledge, and I feel confused and agitated by what's happening to me.

You are going through an adjustment period, and unfortunately it is interfering with your studies and LIFE!
Do some regular exercises - simple ones, to 'liven up' your body.
Again, problem may be insufficient oxygen.
Are you overweight?
etc. Others will fill in here with more questions and answers.

I apologize for that long preamble, but I thought it might help add context to the following questions. I'd be grateful if anyone can give me some guidance.

Guidance you WILL GET here!
NEVER feel the need to apologize for a long post!
The more information, the better for those reading - better than needing to ask you more questions.

1. Is laboured breathing during the day normal? Does it ever go away, or might I simply become used to it eventually?

My experience: stop smoking IF you do. Get more exercise, if just walking. Your body is going through a change, and it is adjusting to those changes.

4. What exactly is the function of the heater/humidifier? I was told to fill it nightly with just enough distilled water to last the night.

The humidifier is just that - it adds humidity to the air that's coming to from the cpap machine. With the heat not turned on, it is termed "passover" humidity. This is what you will always need; keeps nostrils/air passages from drying.
IF the air seems COLD to you, then turn on the heating element of your heated humidifier. Start with a LOW setting. The higher it its, the more chance of your getting 'rainout'. Also, keep the HH LOWER than your head - makes it difficult for those water droplets to get to you!

Re filling the HH: That was a silly remark by the person who made it IN MY OPINION! How the heck can you predict how much water you're GOING to use??? Fill the HH to marked level with distilled water. When it gets half empty, fill it back up to same marker. Do NOT worry about how much water is used during the previous night, unless you want to make a very complex study of those dynamics.

5. Is it normal to be kept in the dark by one's doctor/equipment provider? I know I only have myself to blame for not asking enough questions, but maybe I'm better off anyways to look elsewhere for all the info I need?

...Unfortunately, YES. But that can be changed! Read as much as you can absorb here - take notes, compile a list that you understand, and use it to ask questions of your doctor and equipment supplier (DME).
THIS FORUM is THE BEST place for getting 99% of the information you need. Use it well!

ll also mention that I'm expected to purchase my own CPAP at the end of this one-month trial. I certainly intend to, as I believe this is the path I need to take to join the ranks of all the other "normal" people in society. I'm going to need all the time I can get to choose the right equipment for me, it seems. I'll definitely be using this site regularly to help myself out.

Consider getting an Auto-Titrating cpap machine with C-flex, or one with similar features.

[Offerocker]

Many folks, my self included, would not be able to inhale with a pressure
of 4 cm/H2O, without difficulty. You may want to try to sleep without the
ramp.

DITTO THAT!
I stopped using the ramping feature after 1 week!
My present APAP is set at 7-12, with usual reading of 11.

[Wulfman]

If you haven't checked out the "Lightbulb" (above), I would suggest it.
It's got links to this website which was put together by one of our members, Mile High Sleeper.

http://smart-sleep-apnea.blogspot.com/

Welcome to the forum,

If someone hasn't mentioned it yet, you might want to fill out your "profile" so we know what equipment you're using.

Best wishes,

Den

[Wulfman]

I guess "oldgearhead" mentioned it earlier.....saw it as I re-scanned the posts.

Den

[Staedtler]

Well, none of my equipment is listed in the profiles section, which is probably a testament to the age of my DME's loaner equipment. :-) I have a ResMed Sullivan V Elite, ResMed Sullivan Humidaire, and a ResMed Mirage II full-face mask.

Try to get a copy of your sleep study results. If you are only experiencing
obstructive sleep apnea with no PVC's, RLS, and etc. Get an APAP and set it
for 7 minimum and 11 maximum. Keep using the FF mask. Then get the
software for your PC and monitor your results. The RemStar Auto is the
only APAP that is able to deliver exhalation relief and auto-titration, at the
same time.

I'll need to take some time to learn what the acronyms mean. :-) Is it important to take this into consideration before purchasing my own CPAP, or is it reasonable to start "simple" then upgrade down the road?

Many folks, my self included, would not be able to inhale with a pressure
of 4 cm/H2O, without difficulty. You may want to try to sleep without the
ramp.

Weird... why would 4 be more difficult than 7? 4 is higher than ambient air pressure, right? As it is, when I turn on the machine using the ramp, the setting of 4 is immediately noticeable, but I get accustomed to it within seconds. I never notice the change between 4 and 7. Nonetheless, avoiding the ramp feature seems to be a common suggestion, so I'll give it a shot starting tonight.

Do you have Bruxism (teeth grinding/clenching)?

I think my dentist has pointed out some wearing-down of my teeth, but I used to have vivid dreams about my teeth being pulled or pushed about violently, so I wouldn't doubt it. :-)

DO try to stick with taping your mouth closed. There are many articles on this subject here. Many of us simply need to use a strip of special tape down the center of their lips. After a few nights, you will WANT that tape there.

I think the main problem is that I'm always congested, but the CPAP might render that moot by getting air through the nose anyway? I don't have a nose mask, so I won't be able to try the tape suggestion anyway. :-/

Did they test your oxygen level? That could be a contributing factor to your BODY not cooperating!

They most certainly did! Darned if I ever got to see the results! :-) Hopefully, when I ask my doctor for my results, that'll be included. Granted, I don't even know what I should be looking for.

Are you overweight?

My BMI is around 28, so indeed. Non-smoker.

Re filling the HH: That was a silly remark by the person who made it IN MY OPINION! How the heck can you predict how much water you're GOING to use??? Fill the HH to marked level with distilled water. When it gets half empty, fill it back up to same marker. Do NOT worry about how much water is used during the previous night, unless you want to make a very complex study of those dynamics.

Well, she said to fill it to the max the first night and see how much is used, then I could just fill it with that much -- or more, whatever -- but she insisted it should be emptied and refilled before the next usage. I just assumed there was some risk of bacteria or something, but you believe it's safe to slowly use the water over time without refilling?

Consider getting an Auto-Titrating cpap machine with C-flex, or one with similar features.

Thanks, I'll definitely check out that option.

[Offerocker]

Check it out, and you'll find much discussion here about humidifiers, water, cleaning, etc.
Bottom line, in my opinion is: keep adding water, no real need to empty the container. Get a funnel that you use solely for that purpose, OR use a squirt-type bottle to add the DISTILLED water to the humidifier.
No, it doesn't need to be full all the time, just be sure there is SOME water in it.

RE Your congestion: You might want to look into using a Neti pot (mine is stainless steel, purchased online). The pot holds a warm, salt water solution and is used to cleanse the nasal passages. It may take some getting used to. In time, I needed to use it less oftn. Does a great job.
You MUST use salt - unless you're into pain, ha ha. The body "operates" on saline.

I think you're on your way...
Questions are always welcomed here!

[snoregirl]

While I have only skimmed the discussion I need to comment on the congestion.

I am one who was always congested. I used to take antihist/decongest nightly (oral). I also thought due to this congestion and a tendancy to hang my mouth open and use it to breath (pre-cpap) that I couldn't use a nasal interface.

How wrong I was. Yes I need to tape (and use some form of chinstrap -- mine is homemade since I didn't like the commercial ones), but with that air being forced up my nose, I have very little congestion. I like the pillows (swift). I haven't tried a nasal mask since I am so happy with the swift.

So what I am saying is don't count nasal out until you try it. You never know.