Confused...still???

Sleepless on LI · Post by **Sleepless on LI** » Mon Aug 01, 2005 1:46 pm

I have been on therapy now for two months. Last week, got my Remstar Auto with CFlex and today just got my Encorepro software and card reader and also installed Derek's My Encore.
Now, I always thought being on this machine meant I would not be suffering or having these apnea attacks anymore, or at least they would have lessened. According to my data, I am still having an AHI of anywhere from 1.6-3.00. When I was at the sleep study, I had four apnea episodes per hour and like 12 or so hypops. So what is this machine doing for me?
I know I feel so much better and energized. Is it the duration of the episodes that it's helping? I thought I wasn't supposed to have any with the CPAP pressure keeping open the airways.
I need someone with a better brain than mine who comprehends this stuff to tell me what is going on. Rested Gal, are you out there???? I know you know all about this stuff. I would welcome anyone who can tell me how it is that I'm feeling so much better, but still having apnea and hypopneas. I know they're mild, and they were classified that way when I had my studies, but they're still here even with the therapy. I must be missing something.
Thanks for any info anyone can offer.

WAFlowers · Post by **WAFlowers** » Mon Aug 01, 2005 2:00 pm

If I read you correctly you've gone from an AHI of 16 to as low as 1.6; that's a 10X improvement!

Does the data say whether the events are apnea or hypopneas? Or maybe just snores? If you've elminated the apneas and are now having only a couple of partial events per hour it is no wonder you're feeling bettern than having an event every 4 minutes or so.

Maybe the lower range of your APAP can be bumped to elminate even more?

But what do I know? I'm counting the hours until I get my prescription tomorrow afternoon so I can finally order my very own machine!

Guest · Post by **Guest** » Mon Aug 01, 2005 2:15 pm

from my understanding, it's nearly impossible to achieve an AHI of 0. I have read on other posts that and AHI of under 2-3 is acceptable.

Wulfman · Post by **Wulfman** » Mon Aug 01, 2005 2:45 pm

Lori,

You're in a "respectable" range. Anything below a 5.0 is considered "normal", so you're well below that. You've only been on the machine for two months and the therapy will improve those numbers in time.....they don't go away entirely. You'll probably find there a lots of things that affect those numbers, too. What you eat and drink, how tired you are, the weather, etc., etc.
I believe we're using the same machine, too.....the Pro 2 CPAP. In my case, it's been a gradual decline in the numbers. They'll go down and down and then for some mysterious reason, they'll spike up a little for a day or two and then head down again. This last Saturday night/Sunday morning I finally reached an AHI of 0.0.....but only for one night......but it made me feel damn good to see those zeros on Sunday morning. What I'm saying is give it time.....it IS "therapy".....it's not a "cure". What really counts is that you're feeling better. That means it's working

Hang in there.....you're doing just fine.

Den

Sleepless on LI · Post by **Sleepless on LI** » Mon Aug 01, 2005 4:26 pm

Okay. I don't know if I was reading my initial sleep study correctly. I just went back and re-read it and believe it or not, I couldn't find apnea, just 4.8 hypops per hour. I can't find apneas anywhere. I did have a serious number of limb movements per hour, 14.5. Guess the software doesn't tell you much if anything about PLMD.
Anyway, the software is telling me I have on 7/28 Apnea/Hypopnea Index (AHI): 1.6 events/hr., 7/29 Apnea/Hypopnea Index (AHI): 2.3 events/hr., 7/30 Apnea/Hypopnea Index (AHI): 2.0 events/hr., and last night, 7/31 Apnea/Hypopnea Index (AHI): 2.0 events/hr. (total time in apnea 126 seconds for the night).

I don't know if that's good or bad, better or worse, since I can't find any sign of apnea on my intial study report that I was looking at that said the 4.8 hypops. an hour, not mentioning the PLMDs.

So as long as I'm under 5 AHI, I'm doing well? I shouldn't expect the machine to stop it all together? Okay. If that's so, I guess I should be happy? I was kind of disappointed to see the machine didn't stop it all together. I guess I've been misinformed as to what the machine will do.

Yes, I feel energetic and wouldn't give up the machine now because of how it's made me feel, but it was surprising to see on paper that this is still going on. And the amazing thing is, most of my sleep is at the 5 - 5.5 cm pressure rate.

Okay. Open for comments, PLEASE...

rested gal · Post by **rested gal** » Mon Aug 01, 2005 5:42 pm

Even "normal" people...people who, if they went for a sleep study just for the heck of it, not because they were tired or not sleeping well... would almost all have at least a few "events" show up on their PSG. That's why Medicare and insurance companies usually require that the apneas and/or hypopneas have to reach a certain number or severity in oxygen level drops before you get a diagnosis of OSA.

So, it's no big deal if you have some things showing up on your data while getting cpap treatment. Your AHI is nice and low...under five per hour.

If it were me, I'd bring the lower pressure up considerably above the 5 you have it set on now; as Bill suggested. I know it's tempting to set an autopap as low as possible as long as one doesn't feel stifled for air. That can work fine for some...setting a very low "low".

But I do believe setting the low pressure up pretty close to the titrated pressure from the sleep study might give better results for most people who are seeing hypopneas ticked in their autopap data. Setting it not more than two points below their prescribed pressure anyway. That's based on what I've been reading for some months now on the message board, especially some posts by ozij that set me to re-reading some older topics. (Thanks, ozij!)

Why have an autopap then, if you're going to set the low pressure up almost on the prescribed pressure? There's still the value, not to be sneezed at, of setting the high pressure 4 or 5 points above the prescribed pressure -- to take care of changing conditions in the future if meds or weight gain or a few after dinner drinks cause a person to need more pressure. Saves going back for another sleep study.

Especially where hypopneas are concerned, I've come 'round to the thinking (thanks -SWS, ozij, derek, fascinated guest and others!) that using a pressure that will keep the throat well open most of the time is the way to go. I'd keep raising the lower pressure one cm every three or four nights, LI, to see how that makes the data looks. Give each change at least 3 nights (preferably a few more nights) since there are going to be variations no matter what.

While experimentally doing that, pay attention to the "trade-off"...what pressure you can sleep comfortably with, even if it's up close to your prescribed pressure.

A "serious number of limb movements per hour" might be more of a problem fragmenting your sleep than anything else the study turned up. I believe that some people find that limb movements subside greatly after being on optimum cpap treatment for awhile, but if you don't feel better in a month or so, I'd be looking more into the PLM's (Periodic Limb Movements) which might need medication to control. Back to the doc, in other words.

You're right, LI...PLM data won't be anywhere in the software report. Our home machines don't have any way of capturing that kind of info. That's why wires were attached to your arms and legs during the study.

Sleepless on LI · Post by **Sleepless on LI** » Mon Aug 01, 2005 6:11 pm

RG:
Thanks for the in depth answer. I have to say, I do feel great, so I don't think the PLMD is playing that big a part anymore in my sleep being fragmented, as the study put it. It was a tremendous part when I had it done. When I asked my PCP why she wasn't addressing that but just the apnea/hypopnea issue, she said what you said, that most of the time, or a great deal anyway, being on cpap therapy takes care of the PLMD. And if I wasn't feeling better after being on therapy for a month, to let her know and then she'd prescribe something for it. But I am feeling downright great, no kidding, so I don't think it is too much of a problem even if it is still there to some extent. My hunch is, it isn't or I wouldn't feel as good as I do.
I did look at my data from the 28th through the 31st. Believe it or not, the apnea episodes took place right up to and through the 10 cm setting, 10 being what I was titrated for at my study. However, I still showed signs of hypops from 5-7 cms and then 11 and 12 cms. Nothing at 8-10.
So I think I agree with you that I should move the lower number up to at least 8 and leave the top at 15. I am going to try that tonight and see what happens for the next few nights.
One other thought was, I read on Derek's writeup on the EncorePro software something about setting the Cflex and snoring. At least I think that's where I read it. Does that have anything to do with the amount of episodes you have, setting it at 1, 2 or 3? If so, I'll move it back to 1. Do you have any idea on that?
I have to say, being able to view this info is enormously helpful. How would I ever know all this without having this software. And since you are now the second person to say that an AHI of 5 or under is good, I guess I shouldn't complain (hate to anyway). And I will deduce that is why I am feeling so much better than I was before. Has to have something to do with the therapy taking away the ridiculous amount of PLMD episodes I used to have because I couldn't feel this good and have 14.5 LMs per hour still.
Thanks, as always, for your insight and knowledge. You are a pleasure to get input from.

WAFlowers · Post by **WAFlowers** » Mon Aug 01, 2005 7:31 pm

rested gal wrote:I'd keep raising the lower pressure one cm every three or four nights, LI, to see how that makes the data looks. Give each change at least 3 nights (preferably a few more nights) since there are going to be variations no matter what.

While experimentally doing that, pay attention to the "trade-off"...what pressure you can sleep comfortably with, even if it's up close to your prescribed pressure.

I'd be inclined to give it at least 7 nights per setting. If looking at your AHI score or other indices throw out the 2 high and 2 low and look at the other 3. If they are tightly grouped (similar numbers) then they are likely meaningful.

Also, the longer time at pressure gives you more time to acclimate.

IMHO anyway.

Sleepless on LI · Post by **Sleepless on LI** » Mon Aug 01, 2005 7:49 pm

Well, after looking at the past four nights, which are the only nights I've had the info for, I noticed no apnea events past 7 cms and hypops were from 5-7 and then 11-12. Found the higher pressures kind of strange, but that's what it said. I figured I'd try 8-15 tonight. My straight titrated pressure at the study was 10, and I don't have any trouble breathing in or out on that pressure. So if I put it up to 8 and leave the high at 15, since there were two episodes of hypops at 11 and 12, thought that sounded resonable.
I just cannot understand how anyone can be on therapy and not have software. It's like never knowing what is working and what isn't. Yes, you can tell how you feel, that it's working, but you have no idea of what pressure it is that's keeping things right for you. And being that a sleep study is not a week's worth of data but rather just an isolated night with a set of isolated conditions, how realistic can that be?
If the insurance companies were smart, they would make everyone have a machine with software and perhaps include a class on how to read the findings. It would save them a lot of money in multiple sleep studies if the user could understand what is going on and adjust their pressure according to what works for them and it would make the patients much more aware of their own conditions.
I guess I'm presuming that everyone wants to take a proactive approach in their treatment which isn't the case. I just can't imagine being any other way. I need to know what is going on and how to make it work. I guess that's why I'm such a PITA (pain in the A**) when it comes to posting and posting on this site. I have a million questions and need a million answers.
Thanks, all, for putting up with my never-ending inquiries...And thanks, WAF, for the input.

BP · Post by BP » Wed Aug 24, 2005 12:59 pm

Sleepless on LI wrote:I just cannot understand how anyone can be on therapy and not have software. It's like never knowing what is working and what isn't. Yes, you can tell how you feel, that it's working, but you have no idea of what pressure it is that's keeping things right for you. And being that a sleep study is not a week's worth of data but rather just an isolated night with a set of isolated conditions, how realistic can that be?

Stop, you guys are making me jealous. My machine won't get here until tomorrow and I'm already feeling inferior. Your quote, is precisely what I told me sleep doc. He said, "You'll feel better if it's working." But, what if it doesn't, and we just need to tweak the pressure. I'd have to go through another sleep study just to find that out. Sheesh. I think a $750 debit to my bank account is in my immediate future.

-BP

Sleepless · Post by **Sleepless** » Wed Aug 24, 2005 7:55 pm

Encore is a good indication to see how ur doing on CPAP. There are limitation; Some OSA events may not be real i.e. you may be awake during some of the events. That is why nothing compares to a real study in the lab with eeg tracing. AHI less than 5 is norm. 10 or more you may want to see if pressure is right 4 u. If u feel better then u know cpap is working 4 U:)

n0trab · Post by **n0trab** » Wed Aug 24, 2005 9:35 pm

One twist on the apnea-hypopnea index: in some cases the overall number can be misleading, or miss the main problem.

My overall AHI (~15) in the sleep lab shows only moderate sleep apnea but during REM sleep, when most muscles are paralyzed, the AHI (~45 or 50) is severe. It was clear my dream sleep is highly interrupted and fragmented and that I did less deep stage sleep (S2 and S3) than is good for me.

So now I'm using CPAP, still in my first week, and downloading data from my PB 420E into SilverLining software. I can see that my overall AHI is down -- in the first four days it was only once under 5, but never as high as 15 -- but I have no idea whether my REM is still highly fragmented.

I could have an overall AHI of 4 but still have an AHI of 25 in REM, no? How could I tell?

rested gal · Post by **rested gal** » Wed Aug 24, 2005 9:52 pm

I could have an overall AHI of 4 but still have an AHI of 25 in REM, no? How could I tell?

n0trab, an autopap is collecting data all night, and the machine is working to prevent apneas and hypopneas and/or deal with any that slip through no matter what stage of sleep you're in, including REM. The AHI it gives you the next morning in your data would cover any time spent in REM sleep you had during the night.

There's no way, of course, to see on an autopap's data that you actually get into REM at all, but you almost surely do. With the autopap doing its job, you won't be having anywhere near the number of events that were jolting you up out of REM before and fragmenting your sleep so badly.

By the way, don't worry if you are not able to remember "dreaming". That won't mean you're not having a healthy amount of REM and dreams. It actually will be an encouraging sign, imho, if you don't remember dreams, except perhaps the last one of the morning if you just happen to be dreaming when, say, an alarm clock wakes you up. Not being aware of dreaming most likely will mean cpap treatment is allowing you to sleep peacefully through REM.

n0trab · Post by **n0trab** » Wed Aug 24, 2005 10:04 pm

Actually, RG, I just had the strangest dream -- I was thinking of a question, and you appeared on my computer to answer before I quite finished posting....

Ok, so I understand that the machine should help regardless of sleep stage, and that if my numbers are down overall that's good.

But to be sure I'm clear, my concern is like this. Suppose I sleep 8 hours and have 39 apneas or hypopneas. That's an overall index of just under 5, in the normal range. But it could be that 35 of those events took place during or immediately around REM sleep -- two or three periods of the night which add up to perhaps an hour or less. In that case my uncorrected problem is still severe, and my AHI during REM is 35 or more.

I'm wondering whether any of the detail charts in SilverLining, when I get to understand them better, will help me see if the events are tightly clustered, or otherwise give me clues about this concern.

BP · Post by BP » Thu Aug 25, 2005 11:18 am

Sleepless wrote:If u feel better then u know cpap is working 4 U:)

Sleepless, I hear and agree with what ur saying. However, consider this scenario. At an AHI of 60, I might feel significantly better if my pressure of 10 cm corrects my AHI to say 20. But, it sure would be good to know that I'm not getting as much benefit as I can. Assuming the software is accurate, I would feel much more comfortable tracking my progress, rather than blindly looking for some hard to measure feeling of improvement.

I haven't received my report from my second sleep study, where my pressure was determined, but I know that I only slept just over 200 minutes. My tech was a 19 yr old young lady, who had 3 weeks of training. I just don't have a tremendous amount of confidence that my 10 cm of pressure was derived in an accurate as possible way.

-BP