First post after beginning CPAP therapy

[albill]

I've posted here once or twice but I hadn't begun using a machine until a few weeks ago.

I don't have sleep apnea but they can't seem to tell me what I have other than it being disordered breathing. The long and the short of it was that a bit over a year ago I went overseas for vacation. When I came back, I had developed a three month viral illness (and they never diagnosed the virus). This illness completely stressed out my body, causing hypertension and tachycardia. In the middle of the illness, I started having repeated myoclonic jerks whenever I tried to fall asleep and began waking up all of the time. After a few sleep studies, they determined that I had highly fragemented sleeps (47+ arousals an hour). One sleep doctor diagnosed this as UARS. The guys at Stanford didn't call it UARS but didn't call it Sleep Apnea either. The first doc said I had a 200+ spontaneous arousals during the studies while, in their studies, the Stanford sleep doctors said I had 200+ hypopneas (I assume that they were looking at the same events). I have less than five apnea events an hour though. Before my illness, I was 25 pounds heavier and a snorer but I never had any problems falling asleep whenever I wanted or staying asleep. The doctors don't really seem to care about why I'm the way I am now and just prescribed the CPAP as the "Gold Standard" therapy.

After the last sleep study, I was given a prescription for Auto-PAP of 9 - 14 cm. On the recommendations here, I got an S8 Autoset II and I've been using a Mirage Swift LT nasal pillow mask (I have facial hair). I have a heated humidifier. I haven't gotten a card reader yet but I am ordering one today.

I've been sleeping with it for 21 days now with a total of 93 hours of usage.

Looking at the Clinician's menu (thanks, guys), I don't see results for the "day" or "month" settings but it can show me the last week. (I'm not sure why I can't see any numbers for the last day...) The last week's results are:

Pressure: 10.4
Leak: 0.34L/s (which is odd since it says "excellent" when I check the mask fit when I lay down...)
AHI: 4.5
AI: 0.2
HI: 4.4

So far, I haven't been able to reliably sleep with it. The mask on my face and the hose on my end feel rather constricting of my movement. I'm not in any pain but it is pretty uncomfortable. I have a ComfortGel Nasal Mask that I tried for one night and I just couldn't take it. As part of my sleep illness, I have problems falling asleep and then I tend to be aroused often. During the last three weeks, it will take me a while to begin to doze off and I don't normally feel like I get any really deep sleep while wearing my normal mask and using the machine. After about four to five hours (in the middle of the night), I usually wind up pulling it off on purpose and putting it on my nightstand. I then roll around to the side I can't sleep on with it (since the airflow would blow on my wife) or onto my stomach and get on and off sleep for the rest of the night. The sleep AFTER I take the mask off has been better than it was without the mask but with it, it is still rough.

One note: I'm a stomach sleeper and it is the only position that I reliably fall asleep in, which makes working with masks and such a pain.

I'm not sure how to read my rough numbers for the last week or my experiences of the last three weeks. I'm open to any feedback. I'm wondering if my mouth is opening at night given my leak data and the fact that I often have a very dry mouth, even with the humidifier, in the night.

One friend told me that four or so hours a night is a pretty common average during the first six weeks with a mask.

So, I'm not sleeping very well with the mask and I'm having my normal problems (though maybe slightly milder) without the mask. I haven't slept, without very strong drugs, for more than four or five hours without awakening in a year.

My earlier post with the results of my non-Stanford sleep study is at viewtopic.php?f=1&t=43982&p=391082#p391082

[Julie]

You say "They" cannot tell you what is the problem, if not apnea, but what kind of specialists have you seen - pulmonologists/respiratory people? Neurologists? Cardiologists? What kind of sleep disorder training did they have? Without a proper diagnosis, you shouldn't be treating yourself, and could still be missing out on what you do need.

[secret agent girl]

.

[albill]

You say "They" cannot tell you what is the problem, if not apnea, but what kind of specialists have you seen - pulmonologists/respiratory people? Neurologists? Cardiologists? What kind of sleep disorder training did they have? Without a proper diagnosis, you shouldn't be treating yourself, and could still be missing out on what you do need.

Please read my post. I'm not "treating myself" as I doubt I would be able to write myself a prescription (which I mentioned above).

The first doctor, who diagnosed it as UARS, is a neurologist and a sleep doctor. We did a seizure montage during my sleep study because she thought that the myoclonic jerks might have been seizure related. They weren't. Her opinion was that people like me couldn't tolerate CPAP so she prescribed an oral appliance (a mouth piece), which I have had, in various forms, since July. That hasn't done a lot to help me.

Frustrated with her (and her horrid bedside manner and two month waits for appointments) I went to Stanford's Sleep Clinic, since they are considered reputable experts. They diagnosed me as have OSA even though I don't have a clinically significant number of apneas. Their basic response, after the sleep study was, "wow, that's a lot of arousals. Why didn't your old doctor try CPAP? It's the gold standard. Here, try CPAP!" which is what I am now doing.

[albill]

one small piece of info that might help...

when you are viewing "the numbers", on the left side of the display it will read either day, week, or so on. If you press the left button, right under that word, the machine should cycle through the different periods of time.

Yes, I know that. That's why I was able to say that it showed no data for "Day" but showed data for "Week." I haven't used it for a month yet, so I assume that is why I have no month data. What I can't figure out is why "Day" has no data when I've used the machine every day for the last 21 days (including last night).

[KatieW]

The daily data disappears at noon, and starts a new day. It will be available on your Smart Card though, for 4 days.

[Muse-Inc]

...The first doc said I had a 200+ spontaneous arousals during the studies while, in their studies, the Stanford sleep doctors said I had 200+ hypopneas ...Stanford's Sleep Clinic...diagnosed me as have OSA even though I don't have a clinically significant number of apneas....

I did not have any apneas just hypopneas in my PSG, enough that I am in the "severe" category (>30 per hr is the starting pt). I also have a fair amt of arousals, in my case, mostly respiratory. What pressure were you titrated at? Your daily numbers are shown in the LED until noon the following day; press left and right arrows to bring up the Review Menu then down arrow to get to the pertinent data IF it has been enabled in the Clinical Menu.

[albill]

What pressure were you titrated at? Your daily numbers are shown in the LED until noon the following day; press left and right arrows to bring up the Review Menu then down arrow to get to the pertinent data IF it has been enabled in the Clinical Menu.

The machine has been averaging 10.4 during the last week.

[Gerryk]

That leak rate is probably correct.

The machine should probably have two things listed leak rate and vent rate. All masks have a leak rate but it is also called a vent rate. That is the amount of air that will go through the mask and vent out the vent when it is worn properly. Your machine has been programmed that you are using that mask so it knows how much the leak or vent rate is for that mask or nasal device. So it says your mask fit is great and the leak rate it is showing is probably just the leak/vent rate of your mask.

So how do you feel after using the cpap? Not many people can put it on and sleep all night with it and even fewer feel effects immediately.

Gerry

[PST]

The daily data disappears at noon, and starts a new day. It will be available on your Smart Card though, for 4 days.

And noon may not fall when you expect it to. My DME didn't think to adjust my machine to the local time zone.

[mdintx]

I think one of the most difficult things to figure out in the beginning is the fitting of the mask. Getting the right tension on the straps for any mask require progressive fine turning. With a leak rate of .34 L/s, you're probably mouth-leaking. 3M Micropore tape is the easiest fix for this. There are plenty of postings on how to do this. In addition, you may want to look at purchasing some lanolin (yes, the nipple grease) and rub it on your nares. I've found that it really enhances the seal of the Swift LT cushion.

In terms of the sleeping position, I think the Swift would be difficult for stomach sleepers due to the straight outflow of air. The wind noise against the sheets or pillow could get loud. If this is case for you, I would recommend that you look into the Resmed Mirage Micro, Activa LT, or SoftGel. These masks have a soft 360 diffusion pattern that might work better for you. In addition, do a search on the Falcon position. You might find that this makes things more comfortable.

Lastly, please say Hi to the Bay area for me. I did my graduate training there and miss it terribly!

[albill]

That leak rate is probably correct.

The machine should probably have two things listed leak rate and vent rate. All masks have a leak rate but it is also called a vent rate. That is the amount of air that will go through the mask and vent out the vent when it is worn properly. Your machine has been programmed that you are using that mask so it knows how much the leak or vent rate is for that mask or nasal device. So it says your mask fit is great and the leak rate it is showing is probably just the leak/vent rate of your mask.

So how do you feel after using the cpap? Not many people can put it on and sleep all night with it and even fewer feel effects immediately.

The machine is set for my mask so I *think* (but don't know) that the leak rate is beyond what is normal for the ask. Since I've woken up with bad cottonmouth before, even with the humidifier, I'm assuming my mouth is popping open. I've ordered one of those cotton hat/chinstrap things that people here have been recommending.

As to how I feel, so far, I feel slightly better but I haven't been sleeping well with the machine at all. That's why I've been taking it off after four or five hours (so I can try to get some more sleep without it).

[albill]

The daily data disappears at noon, and starts a new day. It will be available on your Smart Card though, for 4 days.

And noon may not fall when you expect it to. My DME didn't think to adjust my machine to the local time zone.

Yeah, when I got into the clinician's settings today, it turns out it was set an hour into the future so noon would be 11:00 AM. I wonder what happens if someone works graveyard and uses one of these.

[albill]

I think one of the most difficult things to figure out in the beginning is the fitting of the mask. Getting the right tension on the straps for any mask require progressive fine turning. With a leak rate of .34 L/s, you're probably mouth-leaking. 3M Micropore tape is the easiest fix for this. There are plenty of postings on how to do this. In addition, you may want to look at purchasing some lanolin (yes, the nipple grease) and rub it on your nares. I've found that it really enhances the seal of the Swift LT cushion.

I've ordered a papcap cotton chinstrap plus to wear since I've found a normal chinstrap to be pretty confining. I have a beard and mustache so I'm going to have a hard time with tape.

I sleep with ear plugs so the outflow noise hasn't bothered me. Having the tubing coming out of the crown of my head and being attached to a hose has been odder.

Since the seal is so good when I go to bed (I check after putting it on every night) and I've woken up with a really dry mouth and throat, I think you are correct and it is mouth breathing.

I also have a Comfortgel Nasal mask but I only tried it once and didn't like the way it was putting pressure on my upper lip/mouth under my nose.

Al

[Mtnviewer]

I'd seriously try to analyze your sleeping position(s) and perhaps slowly changing (vs. just saying that you "can't" as it may be the problem), vs. trying to find hardware solutions to the problem as increased pressures and mask tensions could be just as difficult and disruptive to your sleep to get used to? I wonder if increased pressures could not be reduced for many of us by just adapting our sleeping positions?

Consider video taping your sleep for a few nights to help you see adn hear what you are doing or not doing to cause events? I used to enjoy? and mostly did sleep on my stomach but I rarely do that now, or have the urge to do so, and I believe that it is due to better sleep. However, I only try to sleep on my sides, which I did a lot before, but it did require some training over months and with support of tennis balls, and more to get good results.

My experience is that sleeping position REALLY affects my sleep. On my back is horrible for me and causes a lot of events, very high AHI's and my auto pap to cycle pressures to high and annoying which wake me. Sleeping on m stomach also causes higher events, restricts my breathing due to the position and causes higher leaks and just isn't comfortable any longer.

I'm thinking that without SEEING how we are sleeping, we are blindly just using trial and error on what "might" be causing events or disrupting sleep, vs. seeing a problem that relates to the machine data or how we feel and then coming up with a solution. In my case, I wasted many months playing with pressures, APAP vs. CPAP, chin straps, mask tensions, sore spots, diet, drink, oral appliance, mouth taping and still being tired, when the main problem and cause of events for me was due to sleeping partially or completely on my back and then figuring out blindly how often I was rolling partially or completely onto my back or shoulders. I unfortunately didn't think of it earlier and don't have the money or the nearby resources to borrow or rent a video recorder, but I am looking out for used ones on eBay.

Like in a sleep lab, I think that analyzing the software data and video and sound recordings are also very good tools for us at home to monitor our own therapy. Cumbersome perhaps, but great tools to "seeing in the dark". Good luck solving your mystery.