A little confused - wondering if I am on the right track.

[byront]

I am new to all of this and have been pouring over this board and others for days gleaning all of the information I possibly could prior to my equipment purchase. The purchase had to come out of my own pocket so I am very thankful for all of the information and experience that has been quite graciously given by this board . I have only had the equipment for a few days (Respironics Series:M Auto cpap with Heated Humidifier and the ComfortLite 2 mask) and am very pleased with the purchase. My only gripe so far about the machine is that it does not give me feedback about the previous nights activity - only 7 day and 30 day averages. I am hoping that the card reader and software will break down into nightly details. Also, for some reason I set my humidifier clear up to 5 last night and I noticed this morning that I still had most of the water left - considerably more than the 3 and 4 settings from the two previous nights. I am not sure what is causing this but I will try again tonight.
The main problem I am dealing with is that I just don't seemed to be feeling any benefits from the therapy whatsoever, and the feedback I am getting is somewhat confusing. I was diagnosed with moderate obstructive sleep apnea with an AHI estimated at 30 events per hour. I was placed on an autotitrating device, which I am assuming is similar if not the same as an apap. A nasal cpap pressure of 11.5 cmH2O was recommended and that reduced my AHI to 5.9 events per hr. and brought my oxygen saturation level up from 90% to 95%. But that study was done clear back in the latter part of 2001, which is why I went with the apap unit. This is my first machine and I have not been on cpap since my sleep study was done 5 years ago - I've just been struggling through it. The feedback I am getting from the machine is telling me that my AHI is only averaging 3.4, that my air pressure has jumped to 12.7 on average (I am set at 9-13), and that my system leakage is 37.4 L/min.. It seems that with an AHI of only 3.4 compared to 30 I should be feeling better - or am I just being impatient? I am thinking that the only statistic here that is correct is the system leakage figure, and that it is throwing everything else off. I could not find any documentation that would tell me what normal and acceptable leakage would be. I am sure that this figure would also probably vary somewhat with different masks, but my gut feeling is telling me that this figure seems to me to be quite high. Although I have not woken up with a dried out mouth or anything like that I am leaning towards mouth breathing. It doesn't seem as though I do this but then how would I know, I'm asleep. It would seem that this would negate the ability of the machine to pick up on any events since there was no stoppage of air flow. I am also thinking that it may even be the cause of the increase in average pressure from 11.5 to 12.7 - although I am unsure as to why. The increase in pressure could also be due to the 5 year old study and my increase in weight since then. Anyway, I am just trying to get a handle on whether or not I am thinking this through properly. In any case I went out and bought some Super Polygrip Comfort Seal Strips today and will be giving them a go tonight in hopes of some feeling of recovery and better feedback in the morning. I have been a lurker (I guess you call them Guests) on this board for about a week now and have to say I have really enjoyed and learned from it. Quite frankly it seems to me that everyone here is FAR more helpful than any doctor I've run across. And if you think this post was lengthy, just get me started on my numerous horrible experiences with doctors - that would be an extremely lengthy post. But we don't want to go there, it plays hecks with my blood pressure. Thanks to all . --- BT

[Handgunner45]

based on the CL2 vent flow rates at about 12cmH2O it vents about 30LPM so your leak rates are not to the point that you should be compromising your treatment. I think you just need to give it time. You know that you have at least 5 years of sleep debt to pay back and probably more. Some people take months before they start to feel a major difference but most all will get there eventually. The software will give you nightly details off of the smartcard. It is definitely a worthwhile investment if you wish to monitor your treatment. Stick with it. It will be better for you in the long run.

[birdshell]

Welcome to the Forum!

I'm sure a lot of the forum folk could tell some doctor stories--let's wait until Halloween, hey? I'm not sure we are all ready for so much horror right now.

It is great to see that you have done your research. I did somewhat the same thing, but on a much smaller scale. When I went to the DME provider for my first RT meeting, he kissed my hand because I knew so many answers!

The ComfortLite 2 is a good mask. Personally, the direct seal is my choice over the nasal pillows. I've ordered the simple seal, and cannot wait to try that.

Here are some mask fitting suggestions that apply to the ComfortLite 2, as well as some others.

Link to Slippery Strap Solution

Link to Extra Strap Solution Plus

Link to Slippery Strap Solution

Best wishes and happy sleeping.

[Snoredog]

getting the software and card reader would be your best bet.

But you could also reset the data each night then that 7-day data becomes the daily. The Remstar does a pretty good job at finding your ideal pressure. Your AHI of 3.4 is good, but your leak rate is a bit HIGH.

The machine already compensates for the mask's built-in intentional leak so if your at 37L/m that is a tad high.

I would check and make sure you are not mouth breathing. That would also show up as a mask leak. Sometimes you don't feel better even with ideal pressure. About the only thing I've found for that is exercise.

[rested gal]

But you could also reset the data each night then that 7-day data becomes the daily.

Neat trick. I'd have never thought of that.

[byront]

Clicked on the link to 'Extra Strap Solution Plus' and - I'm sorry - but there is NO WAY you are going to get me to start wearing panty hose! Even sleep deprivation isn't going to get me to cross that line! Anyway - so far I have no complaints about any of the equipment I purchased. Once I get the humidifier problem figured out and the software for my Series:M Auto - I am going to love it. It's plenty quiet for me and the c-flex is great. Unless I can't get the humidifier to start behaving like it should, I really have no complaints. I was a little bit worried about the mask on the first night - could not get the simple seal to work for me, but I do have a mustache and there might have been some slight interference there. The pillow cushions (which I believe are the ones that fit just inside the nostrils) were uncomfortable the first time I tried them - ended up switching them before I even got to sleep, they pushed to hard on the cartilage between my nostrils. Tried the simple seal again for another night with no luck. Went back to the pillow cushions but this time I tried the large and fiddled for a long time with all the adjustments - slept through most of the night, a little uncomfortable and a few nighttime adjustments but not to bad. Last night I slept comfortably throughout the night - hardly even knew they were on. If it continues like that I am going to love this mask. It seems very well thought out, impressively constructed, and I have no trouble sleeping on either side or my back. I'm even going to figure out some kind of use for those extra strap loops at the top of the headgear - I've been thinking about playing around with some form of chinstrap hookup. But rest assured that it wont be made out of pantyhose! All in all I'm very pleased with everything except my energy level - and I am hoping for improvement there. Thanks so much for the replies! --- BT

[Guest]

I have pieces of inch wide elastic on my CL2 - there are from underwear waist bands (not pantyhose) but you can buy a package of elastic at Walmart or another sewing notions department - dollar or so at Walmart.

One piece I have through the top extra loop holes and tied under my chin now so much as a chin strap but to keep the top on. The second piece I have looped once around the elbow on the mask (use simple cusion) then back around the back of my head to also help anchor it.

Now I realize pantyhose might be the optimal solution but you know you can FAKE IT.

[cchase]

Hi byront - I have the same setup with Remstar Auto M-seris and the CL2 mask. I too wondered about pressure leakage when I started treatment a month ago. In the instructions that came with the mask is a small graph that plots pressure on the X-axis and External Leak Rate on the Y-axis. Two lines are plotted that overlap alot - one for the Pillows and Direct Seal Cushion and the other for the Simple Cushion. This is the only information I've been able to find about the normal leak rates for the mask, but this one graph gives you what you've asked about. For your set pressures of 9-13 cm/H2O the expected leakage for the CL2 is 26.5-31.5 LPM. So, if you've averaged a 37.4 L/min leakage, you probably are doing pretty well, with only a few leakage episodes per night. Zero leaks in a night has been hard for me to achieve, but when you get the EncorePro software, you'll be able to see when leakage episodes have occurred and for how long.

Regarding how you feel, it's taken me a few weeks but I do really notice a difference. I'm not in such debt as I used to be, but still don't have much reserves built up. Yesterday, for example, I only got 6.5 hours of sleep on Friday night and had a very busy day on Saturday, including a long hike in the morning. When I ran out of steam at around 8 pm last night, I was out - I could barely stay awake. Stay with the treatment; it does work for most people.

Best,

Chris

[byront]

Reset the data - that is a neat trick! But I don't recall seeing that anywhere in the manual, or is there an actual reset switch on the machine? And do I need to remove my card before doing so? About the exercise - that was going to be step #2 - once I get a little energy and motivation back from some long overdue nights of real sleep. Please don't tell me I have it backwards. I'm in construction and a single dad with primary custody of two exceptional boys, 8 and 10 years old. The combination of the two saps me dry. I gotta tell ya, after getting the boys going in the mornings, feeding them breakfast, dropping them off at school, going to work, picking them up from school, going back to work, fixing dinner, helping with homework, doing laundry, getting them in bed and trying as often as I can to squeeze in a visit with Mom at the nursing home and helping care for my Dad - maybe I'm whining, but I have a real tuff time thinking about exercising. And to top it off, if I ever let my butt hit a cushion they can hear me snoring at the other end of the house in a matter of minutes. BUT - I understand exactly what you are saying and appreciate it immensely. Your right - I just was hoping to get at least a teeny weeny little bit more energy surging in before starting/stumbling down that path. My immediate concern right now is to try and get this sleep problem resolved - that will also relieve me of this immense guilt trip I am on for having spent so much money on this equipment instead of my boys. Then when I can get feeling a little better my plan is to incorporate the boy's into an exercise routine with me. And from there, providing that I don't have to deal with doctors or wear pantyhose on my head (a big no-no in the construction business), all should hopefully be looking up - or at least on an even keel. Thanks so much for the input Snoredog and I am very interested in that reset thing. Also I am thinking that if there is a large amount of leakage going on, such as mouth breathing, wouldn't that cause my AHI to remain low - I'm thinking that A/H events would not be recognized and thus also not be registered since even though the event is taking place there is still a free unrestricted flow of air coming out of my mouth. Isn't registration of the event triggered by restriction of air flow? It seems that any amount of leakage above a set point that is written into the machines programming would effect/lower the AHI readout given by the machine. I would really like to know from someone if my thinking on this point is correct. At any rate according to Handgunner45 a big share of my leakage may be necessary leakage do to the incorporated vents in the mask - but given the difference, what is an acceptable leak rate? If you are pretty sure of a good fit on your mask and the hose/connections are tight - it seems that this would be a key figure/tool in determining wether or not you are a mouth breather. Like I said earlier I am very new to all of this - please don't hesitate to set me straight if I am way off base. Thanks again to all for the posts - just in case, I am now off to Polygrip my lips together before I go to sleep, who would have ever dreamed! --- BT

[byront]

OK - I noticed a few more posts and just had to stop and read them. Guest - now you want me to wear underwear on my head! I'm sorry but this is hardly a good substitute for the pantyhose! I just thank God that I never gave out my full name - if that ever got back to my neck of the woods I would NEVER be able to live it down. And the names - Hosehead, Captain Underpants, ... - I don't want to even think about it! If I dreamed - it would be a nightmare! Might try the ace bandage thing though. And thanks for your input cchase - have you had any humidifier issues as I have mentioned? How do you like your machine and mask setup?

Was 108 degrees here two days ago, a little cooler but humid yesterday, and 102 today - I'm hittin' the hay! Great forum, great conversation - even for a hunt-n-pecker, hard to drag myself away! --- Night to all. BT

[Snoredog]

byront wrote:

I'm thinking that A/H events would not be recognized and thus also not be registered since even though the event is taking place there is still a free unrestricted flow of air coming out of my mouth. Isn't registration of the event triggered by restriction of air flow?

to answer your main question you are on the right track. It can take you 4-6 weeks to feel any improvement. Like Chris mentioned you have this sleep debit when you start out, you have to pay that back and it takes time.

airflow out the mouth: You should NOT have any airflow coming out of your mouth, if you do this is mouth breathing, you will wake up with dry mouth and feel lousy. What happens is the pressure used to keep your airway open simply flows out the mouth and does nothing. You need to consider a full face mask or consider taping your mouth. It all depends on how bad you are mouth breathing, sometimes putting tape on your lips to keep them shut can prevent you from mouth breathing. You also have to train yourself to keep your tongue planted in your hard palate to prevent the air from escaping.

Breathing through your mouth would explain why you are not feeling any better. When I use a nasal mask I tape my mouth using 1" wide paper medical tape. I cut a piece about 1.75" long fold back over about 1/4" of that to make a quick removal flap, since it doesn't stick there it comes off easy. The tape goes across the lips horizontally. It works for me.

If you are a mouth breather it mainly takes place during REM sleep which is where most of the apnea events also take place. Very difficult if not impossible to consciously control it. Sometimes a Full Face mask is the only option.

[cchase]

cchase - have you had any humidifier issues as I have mentioned? How do you like your machine and mask setup?

Hi byront - No humidifier issues; I do need to pay attention to the room temperature when I set the humidifier. One night when the room temp was in the 60's, I set the humidifier to '4' got rainout (e.g., water condensed in the hose and some drained up to the mask), but reducing the setting fixed that.

I'm very happy with my setup because I feel much better; the treatment is working for me. I use the pillows and finally have them well seated so I'm changing position in bed more easily without episodes of leakage.

Take care -

Chris

[mister_hose]

Sometimes a Full Face mask is the only option.

I'm not sure why everyone considers a full-face mask a reluctant, dreaded last resort.

Because I'm constantly half-congested nasally with eternal allergies, I require the ability to breathe through my mouth. I've been on CPAP for one week, with a F&P HC431 full-face mask, and I'm fine with it. After a few days adjusting it and getting used to it, now I just slap the thing on my face, snap the quick-release closed, and sleep.

I encountered problems, but fixed them all in one week. No leaks under normal conditions, no face marks (folded up 8-or-16-layer-thick paper towel underneath the forehead pad worked nicely!), and no more "mental blocks". I like it now, it's routine, easy, trouble-free. And, I don't have to wonder if I'm getting the proper pressure I need or if it's escaping through my mouth sometimes instead, etc. Full-face masks cover ALL the holes, which is nice and simple and guaranteed effective, no guesswork or worries or duct-taping your lips shut like you're someone's hostage. =) Oh, and for oft-congested people like me, they're even better still. No struggling to breathe through two tiny little holes, one of which is mostly closed.

So why does everyone view full-face masks as some sort of avoid-like-the-plague last resort? Just curious. I like mine.

[Wulfman]

I'm not sure why everyone considers a full-face mask a reluctant, dreaded last resort.

and

So why does everyone view full-face masks as some sort of avoid-like-the-plague last resort? Just curious. I like mine.

I've been wondering the same thing for over a year. I hope you get some answers so I'll know, too.
It's like "EWWWW....a FULL FACE MASK?.....NO WAY!"

I like mine and it works for me.

Den

[Sibby]

I too have nasal congestion problems, which are inhibiting my getting used to this new way of sleeping.

I was only given so many mask options from my DME, but when I phone in my first weeks report I will mention about getting a full face mask to see if it works.

I am currently using the ComfortLite 2. I like the small nose mask over the nasal canula pillow.

If I can't get a full face mask (I bet I would have to pay out of pocket at this point, since insurance only pays for one) I may try the taping my mouth shut and see what happens, since I have been waking up to a dry mouth. Not a heinously dry one though, as it doesn't hurt like it has before when I was without CPAP at all.