Your opinion on what I should do?

CollegeGirl · Post by **CollegeGirl** » Thu Nov 17, 2005 8:04 pm

I decided, based on someone's (I think Derek's?) posting on how CPAP was better than APAP for him, to try straight CPAP for a night. I still felt groggy and sleepy today, and was falling asleep in class, but...and this is huge for me... I was actually able to make myself get up early to do laundry. And usually, if I KNOW I'm getting up early for something not 100% necessary, I'll reset my alarm to the latest possible time and not get up early to do whatever it is I wanted to do because I'm JUST SO TIRED. So, I dunno...maybe it's working?

My AHI was 0.8, and it normally ranges between .2 and 1.2, sot that's toward the high end, but not TOO high (and all hypopneas - no obstructive apneas). And my snore index was only 4 instead of the usual 15, so that's EXCELLENT.

I set the CPAP to 12 becuase 11 and 12 are where the APAP spends most of it's time, and 12's the number that Encore Pro shows eliminates 100% of my apneas (just apparently not my hypopneas ). It does spend 90% of its time on 11, though, probably 2 out of 3 nights. I want to keep experimenting to see if maybe this is what I need. So here's my question:

Do I try it on 12 a while longer? If so, how long til I know it's not going to be effective?

Do I go ahead and try it on 11 or 11.5 tonight? If not tonight, should I try it at all? When?

Thanks for any suggestions. I just want to do SOMETHING to help me treatment along - I'm getting nowhere and my sleep doc's only suggestion for me once he found out the nasal pillows didn't work was "Learn to sleep on your back." Thanks, doc.

Oh - and I stuck up for myself yesterday and got Apria to order me an Ultra Mirage FFM. Hope I get it soon.

rock and roll · Post by **rock and roll** » Thu Nov 17, 2005 8:11 pm

Stay on 12 for about two weeks to get a real feel for it. Have to give it time to see trends. I hope you get improvement on the FF mask. I never had good luck with them myself, but some do. I am holding out for Resmed to get off their duffs and bring out the Activa full face mask. But I like my Aura so much, it will have to be good.

Sleepless on LI · Post by **Sleepless on LI** » Thu Nov 17, 2005 8:32 pm

CG,

Definitely stick with it at 12 for at least one full week, if not two. I was also one who found best results as far as treatment effectiveness with CPAP. I found it less abusive to be on APAP, but CPAP provided better results. You can't judge how it worked on one night or even two. You need to see the pattern emerge. And since outside influences can affect you from one night to the next, you need many nights to see if you can really tell what is going on at that setting. I would always have a zero snore rate on CPAP, but always have a number with APAP.

Then you have a choice IF you choose to change it at the end of the trial period. You could set your APAP to go between only 11-12 or drop the number down to 11 for straight CPAP and see if that makes a difference at all. But I would make sure you are giving yourself enough time on any of these settings to see how you're truly doing.

Your AHI's are beautiful, and most people would kill for your low numbers. The question is, of course, how are you feeling? Are you getting any improvement? I know you said you were able to get yourself up early to do laundry and that is a good thing. I'd take each positive and grab on with two tightly closed fists. After awhile, they add up. What mask did you end up using and are you going to stay with that for awhile, too?

CollegeGirl · Post by **CollegeGirl** » Thu Nov 17, 2005 8:48 pm

Lori,

First of all, let me say THANK YOU for responding to my post! I always, always want your input.

Secondly, as far as the mask goes, I'm still stuck with the F&P HC431 FFM. I tried the nasal pillows for one night (it was the Adam Circuit (?) they gave me as I posted on another thread), and my nose bled like crazy. I do have a chronically dry nose, and can't use a humidifier because of my asthma, so it looks like nasal pillows are out. At least I can wear my HC431 without bleeding (well, except when it rubs my chin raw). I can't wait to get my Ultra Mirage FFM and try it.

I'll go ahead and keep it on 12. I just can't tell WHY, when I have it set on APAP, it always hits 12 for about 30 minutes and then goes back down to 11 (where I seem to have MORE events). I'm wondering if maybe something happens at 12 that I'm not seeing from my Encore Pro results but the machine does.

another_guest · Post by **another_guest** » Thu Nov 17, 2005 8:54 pm

my previous doc was a big believer in using plain saline spray for dry nose, blood clots in nose and all - can you use that?

Sleepless on LI · Post by **Sleepless on LI** » Thu Nov 17, 2005 9:06 pm

CG,

Oh, don't be silly. Don't thank me for responding. Not necessary.

Now, I'm wondering if 11 would have been my choice to try the CPAP on first, but 12 shouldn't make that big a change. If you say most of your events seems to happen at 11, then 12 may have been them at bey.

For your sore chin, did you ever try using Dr. Scholl's moleskin? It may help to pad your chin just a little so you don't get irritated. It is not the easiest thing in the world to remove, but might help you sleep through the night a little better if your chin is not being irritated by the mask. Just a suggestion in case you never tried it. You get can it in the foot section of drug stores, like CVS.

Let me know how your CPAP is going. Good luck.

CollegeGirl · Post by **CollegeGirl** » Thu Nov 17, 2005 9:10 pm

Well, it's only been on 12 for one night - should I just change it to 11 tonight and try it on that setting for two weeks? Most of my events happen under a setting of 10, I should've said - it's just athat out of 11 or 12, 11 is where most of the events occur.

Born Tired · Post by **Born Tired** » Thu Nov 17, 2005 9:10 pm

My allergy Dr. recommended a gel such as KY inside the nose at night for bleeding from dryness--it works.
Esther
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CollegeGirl · Post by **CollegeGirl** » Thu Nov 17, 2005 9:25 pm

I forgot to mention on this thread, I guess - I picked up Ayr Nasal Gel before I even picked up my nasal pillows. Not even that could help keep my nose moisturized. Within 20 minutes of using it and inserting the nasal pillows, my nose was bleeding. I think that's a pretty good indication that nasal pillows may not be my thing. I could be wrong, but...

We'll see what Apria has to say. They called today and said "We forgot to collect your copay on those nasal pillows! Could we do it over the phone?" to which I said, "Well, those things made me bleed really badly, as I told Hilly (the RT there)." I didn't say "I don't wanna pay for em," but that's how she interpreted it, and she said she needed to speak to her supervisor. LOL So we'll see if they make me pay for them. If they do, I'll keep them, and maybe try them again at some point when the air around here is less dry.

Sleepless on LI · Post by **Sleepless on LI** » Fri Nov 18, 2005 5:53 am

CG,

I'm sorry if you mentioned this and I forgot, but what was your titrated pressure from your study? My instinct is to always stay lower, if it's possible, and from what you say, it sounds like it is. And it was only one night so to change from 12 to 11 is no big thing, one way or another. But I am really curious about what pressure they set you at at your study.

CollegeGirl · Post by **CollegeGirl** » Fri Nov 18, 2005 7:26 am

My titrated pressure was 6! At anything under 9 I feel like I'm suffocating, and even when the APAP was set at 4-20, it NEVER went anything close to that low. I had two incredibly unsuccessful sleep studies because I couldn't really sleep for either of them, and they wouldn't let me take anything to help me sleep because "we want it to be like a normal night for you." But, oh yeah, sleep on your back (which I never have). And oh yeah, we're going to hook you up to 30,000 wires. But we want it to be just like a normal night.

Sleepless on LI · Post by **Sleepless on LI** » Fri Nov 18, 2005 7:42 am

6 is really low, CG. That is almost bare minimum when it coms to therapy. And your own auto told you that 6 does nothing, so thank goodness for the approach you took.

By the way, I've been meaning to reiterate what RG said about sleeping on your back. Why would this doctor tell you to get used to that? It is supposedly the worst position to sleep in if you have OSA. They even spoke of putting tennis balls in the back of your nightgown/pjs to keep from laying on your back. You are more likely to restrict/collapse your airways by sleeping in that position. Yes, they like you to do that in a sleep study so they can see how bad you can get, but that is not good advice to someone who is trying to prevent episodes from happening. I was a bit surprised over that suggestion. Hope you didn't follow it.

You know, I am NO doctor, by any sense of the word, and 99.9% of what I know I learned from this site, but I would probably go with the lower of the two pressures if you want to try the straight CPAP and see how you do. As long as you're not having any trouble with aerophagia or excessive leaks with your mask, or anything else that happens at higher pressures, I can't see CPAP as being a mistake. But if you do, stay with the auto as it does help with those types of side effects. I am, though, as I said, pro-CPAP, too. Let us know how you're doing and WHAT you're doing.

Born Tired · Post by **Born Tired** » Fri Nov 18, 2005 9:43 am

CollegeGirl wrote:My titrated pressure was 6! At anything under 9 I feel like I'm suffocating, and even when the APAP was set at 4-20, it NEVER went anything close to that low. I had two incredibly unsuccessful sleep studies because I couldn't really sleep for either of them, and they wouldn't let me take anything to help me sleep because "we want it to be like a normal night for you." But, oh yeah, sleep on your back (which I never have). And oh yeah, we're going to hook you up to 30,000 wires. But we want it to be just like a normal night.

Thanks for the chuckle this morning.
Esther
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ozij · Post by **ozij** » Fri Nov 18, 2005 9:45 am

CollegeGirl wrote: I just can't tell WHY, when I have it set on APAP, it always hits 12 for about 30 minutes and then goes back down to 11 (where I seem to have MORE events). I'm wondering if maybe something happens at 12 that I'm not seeing from my Encore Pro results but the machine does.

CG,
The auto is supposed to identify breathing patterns that pre-empt apneas and hypopneas - but, despite being a machine it's only human ... human engineered and programmed. And it's doesn't react as it should to all breathing patterns. A human in this case would probably react better.... The auto is dropping pressure, when it shouldn't.

Derek, who is mainly hypopneic discovered he was doing better on straight PAP, WillSucceed didn't succeed at all with the Respironics auto, but had great success with the PB 420E. My experience with the Respironics machine was short and accompanied by major mask problems - but its very possible that for me the PB 420E algorithm is better.

So it makes a lot of sense to me that the auto is not necessarioy treating you properly. And it makes sense for you put your machine on 11.5 or 12, where My Encore reports you have far less events - and keep it like that for a week or 2.

Good luck, and keep us posted.
O.
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wading thru the muck! · Post by **wading thru the muck!** » Fri Nov 18, 2005 10:03 am

Stick with the 12cm. I was lab titrated at 7cm and according to long term data collection using my auto machine I need 9-11cm. 7cm would have left me under-treated and still tired.

I will say that the autos do seem to miss the snores and lesser SDB. The fixed setting of 12cm may minimize these events for you and thus give you a less disrupted sleep. The key is to minimize both breathing obstructions and disruptions during sleep. Did your sleep study look at other factors like RLS (restless leg syndrome)? Considering the stressful situation you have been experiencing, you may also have psycological issues affecting your sleep. Best to look at all possibilities