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

[robysue]

Last night was my seventh night with the CPAP. One week into my new life so to speak.

The Good:
I think my AHI is pretty good---at least most nights: Low is 0.3 (and only 2 events), but the high was last night: AHI 1.7 with a total of 12 events, all apneas. [More about this in the Ugly section.]

I don't have any urge to pull the mask off once I get to sleep. I'll even keep it on my face after the alarm goes off and before I get out of bed.

The ResScan 3.11 software downloaded just fine on an old XP that my hubby set up for me to use. He named it "CPAP" just for me.

Downloaded my data and had a lot of fun looking at it and analyzing things. My median leak rate is listed as 0.0 on all but my first night of therapy. My leak rate data is consistently well below the red line that ResScan draws at 24L/min.

No rainout (yet).

Found some Lansinoh for my nose. While it doesn't seem to help my nasal pillows seal any better, it does make my nose happier. Others might feel different, but I like the fact that once it melts between your fingers it feels just like Vasoline.

The DME was kind enough to help me work out an issue with my mask by replacing the long Swift FX backstrap with the shorter Swift FX for Her backstrap and talked to me at length about other things I could do to try to work with the mask. And reminded me that if I'm still having problems I can't resolve, I can try a different mask too. Sent me home with an additional set of pillows to try out too.

The community and friends that I'm making here are really nice to have. Thanks!

The Bad:
Bedtime insomnia is still a problem. It's slowly getting a bit better with some really hard work. First, I've figured out a way to get all the equipment set up well before bedtime so all I have to do is put the mask on when I actually go to bed. I'm also washing my face well before bedtime, since this wakes me up rather than puts me to sleep. I'm doing at least 40 minutes of intense relaxation techniques (mainly yoga and deep breathing) before calling it a night. I've given up caffine except for my morning two cups of coffee---can't function with out them, I'm afraid. I'm not going to bed until I'm really and truly tired enough not to fight too hard to get comfortable in the bed. Several nights, that's been around 3:00 or later. But last night I was ready to call it a night and went to bed around 1:30. Fought for sleep for about 30 minutes, which is acceptable for me.

Bad dreams about breathing and waking up feeling like I couldn't breathe. This has happened on two separate nights since I started CPAP. I never had a dream about breathing before CPAP and I never woke up feeling like I couldn't breathe either. The force-fed good dream still haunts me. And last night around 3:00 am, I really did wake up feeling like I couldn't (or wasn't?) breathing. When I downloaded my data, I did see that there were two OA's just about at that time.

Daytime sleepiness and feeling like I'm living in a fog. This is getting really bad for me. I can hardly stay awake during the middle of the afternoon and the two classes that I teach on MW afternoon and evening are suffering because I"m having a hard time forming coherent thoughts.

No energy during the day. I really mean NO energy. There are tons of things I need to be doing and I just look at them and say, "Not now, I'm too tired and too sleepy. Maybe later when I feel better." But feel better never comes.

My eyes hurt. This is not from leaks blowing in my eyes. Rather, it's the back of my eyes that are bothering me. And they feel a bit dry during the daytime.

The Ugly (or at least worrisome)
Hose management is what I need to work on. I'm not wild about hanging the hose above my head since I like to have my forehead facing down. But I haven't figured out a good way (yet) of routing the hose either over or under the covers in such a way that the exhaust flow from the FX doesn't start whistling or hit me. The exhaust flow is the most irritating thing about the CPAP right now.

Wondering about the real meaning of my AHI and event numbers. I'm a natural worrier and the brain just won't let it go. During my baseline sleep study, I had a total of 14 OA and 78 Hypopneas with Arousal. No centrals, no complex apneas, no hypopneas with desaturation. For some reason that I still don't know, the sleep center only uses apneas + hypopneas with desaturation to compute their AHI. So my AHI that night was only 3.9. They also compute an RDI that uses the hypopneas with arousal as well as the apneas and hypopneas with desaturation. My RDI was 23.4 due to the high number of hypopneas with arousal, and that's what the diagnosis of moderate sleep apnea was based on. I'm now concerned (and worried, the last thing I need before bed) about the fact that over the course of the week, the number of apneas reported by my S9 has gone from 2 or 3 on the early nights to 8 and 12 on nights 6 and 7. [Reported Hypopneas, on the other hand, are ranging from 0 to 1 each night.] Also I'm wondering whether I'm making a mountain out of a mole hill about the fact that of the 12 apneas that occured last night (with an AHI of 1.7), 9 of them were reported as central apneas. My next appointment with the sleep doctor isn't until Oct. 19. Anybody want to throw some advice at me about this?

In conclusion, I'm finding it highly ironic that I'm developing sleep apnea symptoms now that I'm getting treated with CPAP. I'm confident that I made the right choice in insisting on a full data machine. I'm convinced that on most nights my data looks pretty good. And I want to make this work. But boy am I looking forward to feeling like I want to get out of bed in the morning and face the day instead of dragging around like a wet blanket all day long only to still have problems falling asleep at night.

[jdm2857]

Relax a bit. Your numbers are very good. 1.7 is a small, finite number.

By definition, desaturation is a component of a hypopnea. No desaturation, no hypopnea. And the AHI (Apnea Hypopnea Index) includes apneas and hypopneas only. The RDI (Respiratory Distress Index) also includes sub-hypopnea events called RERAs (Respiratory Event Related Arousals). That accounts for the difference between the two.

As far as hose management goes, as long as you have enough hose hanging from the support, you just might be able to make it work. I can sleep prone (head turned to the side) with an overhead hose setup. I move a lot during the night, and flying the hose works well for me. You'll have to experiment to see if you can find a position that works for you. You can rig up something temporary to try before you buy something commercial.
Or search this site for ideas for building your own hose hanger from supplies available at Home Despot for a few dollars.

[jdm2857]

Here's a link to the homemade hose hanger instructions:

viewtopic.php?p=43991#p43991

[kteague]

Robysue, I'm not sure what pressure(s) you are using, but hopefully you will get the treatment tweaked just right for you. I know nothing about that machine so I'm wondering what others think about those 9 events being reported as centrals. I don't want to discount them or magnify them. It's so hard to know when one is just adjusting or if something needs attention.

Are you able to sleep as long as you need after being up so late? How many hours a night do you generally get? Even if it isn't all comfortably familiar quite yet and you have hose struggles, it's pretty good just to keep the mask on. It is reasonable to expect sleep to get worse before it gets better when introducing new sensations for the brain to get used to and perceive as normal and ok to sleep through. Let's hope last night's numbers were an exception. While they were within what is deemed acceptable, I'm all for getting the numbers a low as possible, especially if one is having daytime symptoms and waking up as you've described. How to accomplish that - maybe things will resolve, maybe you'll need some tweaking. Wish I could be of some real help. But here's to the good (one week down YAY!)! May the bad and the ugly soon be just a memory.

[robysue]

jdm2857,

Thanks for reminding me that 1.7 is indeed a small, finite number!

Also thanks for clarifying the definition of hypopnea. I guess my sleep lab simply calls RERA's "hypopneas w/ arousal". It's on my list of questions for the sleep doc when I see him later on this month. Since the S9 doesn't have an oxygen meter attached to it, would it record an RERA/hypopnea with arousal as simply a hypopnea? After all, all the S9 can use to measure your breathing is back pressure since there ain't no wires attached to the body. This is an issue for me because something like 85% of my baseline RDI was listed as "hypopnea with arousal." So far the S9 has recorded very, very few Hypopnea events. Does this mean I'm not having anymore RERA/hypopnea with arousals? I sure hope so since my baseline AI was already pretty low by sleep apnea standards.

kteague writes:

Robysue, I'm not sure what pressure(s) you are using, but hopefully you will get the treatment tweaked just right for you. I know nothing about that machine so I'm wondering what others think about those 9 events being reported as centrals. I don't want to discount them or magnify them. It's so hard to know when one is just adjusting or if something needs attention.

My S9 Auto is running in straight CPAP mode set at 9cm with an EPR set at 3. I've turned off the ramp feature because it decreases my comfort with the mask on. When I was using the ramp, it seemed like I noticed very little 0.5 cm change in pressure and that was enough to bug my brain. It reminded me of trying to get into a cold swimming pool by first putting your toe in the water, and then your legs up to your knees, and then the rest of your legs, and so on. I'm someone who has to just jump into the pool and then swim like crazy to get warm. So maybe that's why simply starting at my full pressure is easier for me.

I also don't know what to make of the events being classified as "centrals." Obviously since my reported overall AHI is rather low, I'm not having many events per night. The number of events per night has ranged from a low of 2 to that high of 12. On several nights the number of CAs outnumbered the number of OAs. At this point, I think I'll continue with prudent, vigilant watchfulness rather than going into big time worry mode. If my overall AI stays low, maybe I can put the issue of the CAs onto the back burner until my next appointment with the sleep doctor. But I do plan on bringing that up with him. Opinions on this issue are welcome of course!

kteague also writes:

Are you able to sleep as long as you need after being up so late? How many hours a night do you generally get? Even if it isn't all comfortably familiar quite yet and you have hose struggles, it's pretty good just to keep the mask on.

My mask stays on all night with no trouble. If I decide to stay in bed and doze after the alarm goes off, the mask stays on my face because it's too much trouble to take it off and taking it off will disturb my wonderful dozing experience. How's that for adjusting to having a hose coming out of your nose?

I'm averaging about 4 1/2 to 6 1/2 hours in bed. The CPAP is running and the mask on that whole time. I'd guess I'm loosing about 30-40 minutes of sleep at the beginning of the time in bed to the insomnia. Hubby has been really sweet in letting me sleep as late as possible. With my classes, that means I can often stay in bed until 8:30 AM (or even later on TR). So total sleep time is not a huge issue, but I'm going to need to work on getting that bedtime back to normal so that my life is not controlled by the CPAP/sleep apnea stuff like it is right now.

[Hawthorne]

I'm certainly no expert on Resmed machines but I am thinking, if a pressure change of .05 bugged you using ramp, then maybe lowering or elminating your EPR setting might help. With it set at 3, as I understand Resmeds, your pressure drops 3 cm on exhale.

It might help to change that to 2 or even 1. At a pressure of 9 cm, you may not need EPR at all and that change in pressure on exhalation may be a problem for you. I might try it at 2 and then maybe 1 and then not at all, if each drops helps.

I have my APAP set at 10.5 cm to 13 cm and I have my A-Flex (exhalation relief for PR System Ones) at 1. In the PR machines (the machine I have) the exhaltion relief works differently and does not drop the pressure 1 cm per setting but does drop.

Just a thought as I read your experience.

[Junebug999]

Well Robysue, the "good" looks very good. I'm not experienced enough to comment on the "bad" or the "ugly".....but I can send you a "hang in there!"

[jdm2857]

As you surmised, xPAPs cannot use the official definition of events in their classification of events. Each manufacturer has it's own criteria for classification, and some approximate the official definitions better than others. For example, it is widely believed that ResMed S8 (and prior) machines count more hypopneas than other brands. But that has changed with the S9 series, as ResMed had updated its algorithms. And since no xPAP measures O2 saturation or arousals, they really can't make the distinction between hypopneas and RERAs.

And, as far a events go, fewer is better. After all, there are smaller finite numbers than 1.7.

[charliegreer]

My doctor told me that it's common for centrals to show up during sleep studies and titrations. He said that the unfamiliar experience can cause the brain to try some funny things, like tell you to stop breathing, until you get used to your CPAP. I was showing centrals until I got used to my CPAP. Now I don't.

I couldn't use the Swift. I also couldn't use the Mirage Liberty. They both woke me up constantly. I can't use anything with nasal pillows. By the way, lubricating the nasal pillows may make them feel a little better, but it's kind of contra-indicated. The nasal pillows are intentionally made of a tacky material so they will adhere to the sides of your nostrils to prevent leaks. Maybe nasal pillows are your thing either.

I hated CPAP until I found the Mirage Quattro. Now, I enjoy my CPAP so much that, when I wake up too early, I just lay there enjoying breathing so well. The Mirage Quattro is the only mask I've tried that doesn't leak. I also use a dental appliance and a chin strap to keep my mouth closed.

To me, success with CPAP is all about the mask. My DME, Apria, has a 30-day return policy on masks, and they encourage me to try new masks every time my insurance makes me eligible for a new one, because if I don't like it, i can always turn it in for a new Mirage Quattro.

I have no exhaust issues with the Mirage Quattro. Neither does my sleep partner. When I lay on my back, I drape the hose off to the side at about a 90 degree angle from my body. When I lay on my side, the hose just lays down on the pillow, which would mean it doesn't go exactly straight up the center of my face. If I were to have the hose go straight up my face, it would be hit by the exhaust, and that gets noisy, but that would be unnatural anyway.

I don't use a hanger for my hose. Don't need one.

As far as the face washing goes, I agree that it can be too refreshing to do immediately prior to bedtime. Additionally, when I do it immediately prior to putting on my mask, no matter how hard I try to get my face completely dry, my skin will have a little residual water on it and I'm more likely to have leaks. So I do that a few hours before bedtime.

My API is 0.9. I also dream about things like being choked when I'm having a major episode. This will happen a couple of times per week. My experience with these dreams is different from yours, though. I'd been having dreams like that every night for decades, before I knew I had OSA. I didn't tell anyone, but I thought those violent dreams meant there was something wrong with me mentally, like subconsciously, I was a paranoid or violent person. I was very relieved when I realized the reason I was dreaming about being choked was because I actually was choking. As I'm able to tolerate higher pressures, I have fewer episodes. At 14.5, I think my pressure is about as high as I can get my Mirage Quattro to go without leaking, so my plan is to lose more weight and, hopefully, that will open my airway more.

I, for one, am very happy that you've taken the bold step into CPAP and will be sending you positive energy when I climb into bed tonight. You can, and will, adapt and learn to love your CPAP.

[robysue]

My doctor told me that it's common for centrals to show up during sleep studies and titrations.

Well I had no centrals on either my initial sleep study or my titration study. Here's hoping that they are just my body sorting out the new new. I do plan on talking to my doctor about it at my Oct. 19 appointment. And I do intend on monitoring it. If it gets worse, I'll then worry more about it.

Maybe nasal pillows are your thing either.

At my titration study I couldn't even get a nasal mask on my face without severe sneezing and itching on the TOP of my nose. After several attempts to fit the nasal mask, the sleep tech offered to let me try a set of pillows, which fit much more comfortably, in part because I could easily scratch the outside of my nose. I kept them on all night and I've not had any problems wearing the Swift FX. I'm having some problems figuring out what to do with the hose to minimize the exhaust venting problem. I dislike sleeping on my back; I prefer to sleep on my side, I like to have my nose snuggled into (or pre-CPAP) under the covers when I'm cold, and I have a tendency to move all the way across the bed at night and invade my hubby's side for warmth. He also makes a really fine pillow. So I'm reluctant to hang the hose overhead because I'm already feeling tethered and changing the tether point will also reduce the radius of the circle I can get my nose to. I also don't quite see how hanging the hose will let me get my nose snuggled properly into my covers, pillow, and hubby. However, I am making baby steps of progress on the hose management issues. Last night the hose was under my covers and since there was a hose snuggly on it, I found out this morning that I was sleeping with the hose cradled under my arm almost like it was a stuffed toy snake. There are worse things to sleep with. If I can find out a way of not getting tangled into the hose when I want to pull the covers around me like a cocoon, then under the covers should work for the hose.

I'm certainly no expert on Resmed machines but I am thinking, if a pressure change of .5 bugged you using ramp, then maybe lowering or elminating your EPR setting might help. With it set at 3, as I understand Resmeds, your pressure drops 3 cm on exhale.

When I was working with the RT, I found it very uncomfortable to exhale at 9cm; that's why she set the EPR to 3. The EPR doesn't bother me because the increase/decrease in pressure is controlled by my breathing, not the machine's clock saying "it's time to increase pressure." I do think that the fact that the ramp bothered me may be an indication that long term I'll be better off keeping the S9 Auto set to CPAP mode though.

And finally last's night's AHI was back down to 1.1 (a smaller, finite number than 1.7!), which corresponds to 7 or 8 events, if I recall my morning-time arithmetic correctly. But 5 or 6 of them were still labeled as CAs, the rest were OAs, and there were no Hypopneas. Boy I hope this means that CPAP really is taking care of those large numbers of RERA/"Hypopneas with Arousal" that showed up on my baseline sleep study.

[jweeks]

My eyes hurt. This is not from leaks blowing in my eyes. Rather, it's the back of my eyes that are bothering me. And they feel a bit dry during the daytime.

Robysue,

You might want to get this checked by an eye doctor.

Some folks report that the air pressure blows through their tear ducts into their eyes. This can cause dryness. There is a solution for this if it is happening to you.

A thing that happened to me is EBMD. It turns out that your tears get more sticky with age. Your eyes are supposed to adapt to this. But since I had OSA, I didn't sleep much, so my eyes were not closed for long periods of time. When I started on CPAP, suddenly my eyes were closed for hours at a time. Well, the sticky tears caused my eyelids to stick to my cornea, and it pulled off patches of the top layer of the cornea. It can be rather painful. Again, there are solutions for this. In my case, I was told to use a specific type of eye drop to keep my eyes lubricated.

I'm finding it highly ironic that I'm developing sleep apnea symptoms now that I'm getting treated with CPAP.

In some poeple, OSA gets much worse while they are in REM sleep. This is due to the body being at its most relaxed state. If you were not in REM much, you might not have been relaxed enough to have these REM related OSA events. But now that you are on the machine, you are likely getting REM sleep, so a whole new group of events might be showing up.

You cannot put too much stock in the type of events that are scored by your machine. I alternate between two machines, one a ResMed, the other a Respironics. The ResMed machine scores me with 1 or 2 OA events, and a slew of hypos. The Respironics machine scores me with one or two hypos, and then a steady stream of OA events. My events seem to be short, all about 10 seconds, which is a grey area for what kind of events they are. It is hard for the machine to know without the rest of the data channels that you get in a sleep study.

-john-

[robysue]

jweeks,

Thanks for the tips on the eye stuff. Right now it's hard to tell what's ragweed and what might be CPAP.

You also write:

In some poeple, OSA gets much worse while they are in REM sleep. This is due to the body being at its most relaxed state. If you were not in REM much, you might not have been relaxed enough to have these REM related OSA events. But now that you are on the machine, you are likely getting REM sleep, so a whole new group of events might be showing up.

In both the baseline study and the titration, I got into REM. [Stage 3 was another story.] In both studies, my AHI and RDI were actually much lower in REM than in NREM. I also had no problem dreaming pre-CPAP. Lots of dreams, most of them good dreams. None of them involving drowning or other breathing problems.

Also thanks for giving me feedback on interpreting the S9 data. That's kind of what I'd begun to think. Like you, the vast majority of my events are on the short side: 10--12 seconds long. I also think that some of the OA and CA's that it's registering extremely early each night may be triggered by my concentrating on deep cleansing breaths that I use for relaxation once I'm in bed. And I've done some experimenting tonight: I spent a short time doing this kind of breathing wide awake and sitting up while on my CPAP; when I downloaded the data into ResScan, there were indeed OAs corresponding to some extremely extended, intentional periods of relaxation between breaths. So at this point, I've decided to quit worrying about OA vs. CA vs Hypopnea and focus on total number of events during the time I know I'm asleep until I have a chance to talk with my doctor and have more time to adjust to the new normal.

[jweeks]

Also thanks for giving me feedback on interpreting the S9 data. That's kind of what I'd begun to think. Like you, the vast majority of my events are on the short side: 10--12 seconds long. I also think that some of the OA and CA's that it's registering extremely early each night may be triggered by my concentrating on deep cleansing breaths that I use for relaxation once I'm in bed. And I've done some experimenting tonight: I spent a short time doing this kind of breathing wide awake and sitting up while on my CPAP; when I downloaded the data into ResScan, there were indeed OAs corresponding to some extremely extended, intentional periods of relaxation between breaths. So at this point, I've decided to quit worrying about OA vs. CA vs Hypopnea and focus on total number of events during the time I know I'm asleep until I have a chance to talk with my doctor and have more time to adjust to the new normal.

Robysue,

It is normal to have a few events, especially centrals, when you are falling asleep. Even folks without OSA can have centrals when they are drifting off to sleep. Some people also report them as they are waking up.

The deep breathing will confuse the machine and make it score an event. After I figured that out, I found that I could get my Respironics machine to get concerned enough that it went into a mode where it tried to jump start my breathing by sending 5 pulses of high pressure in rapid sequence. My ResMed machine doesn't do that.

Another oddity is that I seem to hold my breath when I turn over from side to side, and the machine will score an event for me when I do that. It takes about 10 to 12 seconds for me to turn over and get situated, and the machine records that each time.

-john-