CPAP worked at sleep study but FAILing at home!

[satsumass]

Hi all,
I am desperately seeking some advice. I was diagnosed with OSA at Stanford sleep clinic two weeks ago after a year of insomnia and early morning awakening, and unrestful sleep daytime tiredness. My two studies at Stanford were successful, diagnostic reported AHI of 7.5 which I know is only mild apnea (but sleepiness and fatigue Are more severe than that might account for) and on titration I got down to 1.5 and wow I woke up and felt better than I had in so long....not best but I felt refreshed and slept through night.

So a week later I get my rx and get a respironics system one cpap. I was hoping for some relief, but after one week of using it, I'm not feeling anything, and I'm still waking up multiple times in the night, early morning awakening, and generally unrestful sleep. My AHI is in the 4s, an improvement from no machine, but actuallky i think an underestimate,since ispend probably 4 out of my 8 hours in bed awake with machine on with no apnea events so during time im asleep AhI would be the same as with no machine.

Why would CPAP work during titration but not at home? My settings were on the cflex minimum 10 max 12, but after seeing my 90% pressure at 11 then 11.5 I have been playing around with my range, now set at min 11 max 14 as last night 90% pressure reported 13. Is this the right way to use the 90% reading to make adjustments? Does 90% higher than min mean I should increase the min AND max? Advice appreciated.

So I guess I'm . Wondering why on earth it would work so well in titration but not at home. I think Stanford must use a special titration pressure machine right so they can do bipap or autopAp? How long shoulda give Cpap a chance to work,and how should I play with pressures? I have a follow up appointment at stanford but it's in 6 weeks, should I just request another titration thistime bipap?

Help please, Im suffering so.

[LakeH1042]

First, you need to include more detail on your equipment and mask that you are using so others can provide better responses.

For instance, you have the Respironics system 1, but is it the system 60 (p560) or an earlier model Humidifier ? etc.

I was not getting good results when I started either. Acually, my AHI figures were often higher with the machine than my sleep study figures without the machine. Then someone suggested using a mask liner (see http://www.padacheek.com/PAC_Maskliners.html for examples) which dropped my AHI from 11.6 to 0.91 in 1 day. I don't say that is your solution, just that it worked for me.

The 90% pressure reading just means that of ALL your pressure readings, 90% were at or BELOW the pressure shown.

Please add more information on your equipment and mask, and others more knowledgeable than me (I'm still very new myself) should be able to give you avenues to pursue.

Good Luck'

[Bons]

Probably not a good idea to keep fiddling with your pressure changes every night, especially this soon after starting therapy. Best to get some good information here, since you aren't sure what you are doing.

As Lake said, 90% pressure means that you spent 90% of your time at or below that pressure. So your 90% pressure of 11 doesn't tell you a whole lot by itself. Can you print out data from the whole night to see your full range of pressure? You could have spent 85% of the time at your starting minimum of 10, and a couple of times the pap bumped you up because of an apnea event. It then lowers back down, and rises again if it senses another event. And then there is another factor: say that you gasped or startled in your sleep because of the pressure change. The machine then thinks you are having a central event, and then may increase again - called chasing centrals, and means the machine goes higher and higher because things start to snowball. That's why autopaps are usually set to a fairly narrow range, so they don't keep spiraling up.

It doesn't necessarily mean that you need to bump the pressure higher. These things are best judged over time.

[LSAT]

satsumass...(Neat name )...You said..." ispend probably 4 out of my 8 hours in bed awake with machine on with no apnea events so during time im asleep AhI would be the same as with no machine. "

When you are awake you will not stop breathing....therefore few or no events will be recorded. When you are asleep you have no control over your breathing...that's when the apneas show up.

[Bons]

LSAT - did you forget about centrals? OP doesn't seem to have the data to tell which are obstructive and which are centrals.

To the OP: you said you spend up to 4 hours with the machine on and "no apnea event". The fact that you are awake so long with the machine on MAY be what is putting your recorded AHI up. The cpap does not know if you are awake or asleep, so it is recording data the entire time it is turned on. For a few of us, our "AHI" can be higher awake than asleep. I breathe slowly and pause a long time between breaths when awake, which my machine counts as a central apnea.
If you sigh out of frustration, it can register as an event. If you hold your breath while turning over or flipping your pillow (a normal thing to do because people tend to hold their breath while exerting energy) it registers an event. If you are waking up during the night and drifting back to sleep, your breathing transitions between sleep mode and awake mode, and there can be sleep onset apneas (which are perfectly normal and healthy).

Unless you can look at the full data for the entire night and not just the bits of information you get from the machine's screen, you don't have all the information you need. You don't need to assume 2 weeks in that you need bipap.

Although, I did get bumped to bipap after 2 weeks on cpap, but that was because my AHI on cpap was higher than it had been during my PSG. I don't think an insurance company is going to pay for a bipap titration based on an AHI of 4. That is considered a clinically normal AHI.

[satsumass]

Thanks for helpful replies, I know, that is the problem, 4 AHI is clinically normal but then why do I still feel like total horrible crap and sleep still disruptive. I think what I was trying to say is that since I'm awake half the night, i was thinking i wasnt registering any AHI, but one poster said that actually no, you may be registering fake AH events when awake, so the number could actually skew UPWARD. I'm going to use the SleepyHead software and download my data and would love help in interpreting it. THanks. Goign to see neurologist in 3 weeks, hopefully he will have answers. Thanks for the note on the 90% pressures etc. I will readjust back to prescribed settings. I have Respironics System one 60 series I think, with humidifer.

That's interesting about mask liner, I will look into it.

Anyone have any experience with wedge pillows helping?

[zoocrewphoto]

There are a couple reasons why you felt better during the sleep study. One, your brain was not used to getting a good night, so it was a shock to the system. I had the same effect. I felt awesome after my sleep study. Then like crap the next day without a machine. I realized I have always felt like crap. I just didn't know how bad it was.


Now, once you are at home with a machine, the euphoria is gone from that first night, and you need to learn to sleep with the machine. I am only 7 weeks into my treatment. I do feel better overall, but I am also aware that I wake up fully (as in, alert, hard to fall asleep again, and multiple bathroom trips). This is because I am getting used to sleeping with a mask on my face. So, while my quality of sleep has greatly improved, my quantity of sleep is down a bit, and also fragmented. Those two problems can cause a person to feel tired and not so great. When I have a night with only one or two wakeups, I feel great. If I have a night with a lot of wakeups, then I feel tired and icky. As I get better at this, I get better sleep.

Many people have had such bad sleep for so long that it takes time for the body to readjust. It could be a matter of making up lost sleep. Or it could be that your body has gotten used to little sleep and low oxygen, so it will take time to readjust to getting it. We compensate for things, and we have to learn to stop doing that. For example, if your ankle hurts, you may change the way you walk, and you might find that your knee now hurts. Your ankle may stop hurting, and it may take awhile longer for the knee to stop hurting. With sleep apnea, we compensate, and now we have to let everything heal.

Give it some time. You may need to heal for awhile before you notice the benefits. In my case, I didn't feel energetic right away (except the sleep study), but I realized after a few days that I did feel more cheerful, and I was yawning less. In 7 weeks, I have only had two WOW nights. But I do consistently feel better than before I started.

[MidnightOwl]

If you're really only sleeping four hours a night of course you feel lousy. Forget about AHI and fiddling with your pressure (at least for a week or two) and figure out why you are sleeping so little. Is the mask uncomfortable and keeping you awake? Is there something else? In the end it doesn't matter whether you are waking up hundreds of times a night from apnea or you are awake for some other reason - if you aren't sleeping you will feel lousy.

[archangle]

I have Respironics System one 60 series I think, with humidifer.

Take the water tank out before you move or mess with your machine.

Look near the display, it should say "REMstar xxxxxx." What is "xxxxx?" With the water tank out, look on the bottom for a label with something like REF 560P.

We also need to know what mask you have. Look at the mask and see if there's any writing on it. Look at cpap.com and try to figure out what mask you have.

[Pugsy]

Getting no more than 4 hours of sleep will pretty much guarantee not feeling so great. You need more hours of sleep and if you are having fragmented sleep..that needs to be worked on.

The machine can and will misinterpret awake "events" and flag them. They aren't apneas though..Apneas happen when asleep. They aren't real apneas but they do mess with the overall AHI because they go get mixed in with any other flagged events.

These machines do NOT increase the pressures in response to centrals. They are purposely designed so that they will not respond...no chasing of centrals. The will respond and increase pressure in response to an obstructive event precursor.

Might want to post a couple of typical reports so that people can see what you are seeing on the reports.

[DavidCarolina]

Its possible it was the mask. Find out what mask they used and see if you can "borrow" it for a night and reproduce your results.

If so, buy one asap.

[zoocrewphoto]

Its possible it was the mask. Find out what mask they used and see if you can "borrow" it for a night and reproduce your results.

If so, buy one asap.

I agree. If you don't already have the same mask as from the sleep study, I would definitely see about trying one. My sleep tech asked if I would probably be a nasal or mouth breather. I am definitely a mouth breather, so she fitted me with a Quattro FX. And she fitted it so well, that I had no leaks at all, right from the first moment. I slept very well with it. I didn't think to ask what it was, so I went online, found it, and printed off the page and took it with me to the DME. I have since gotten a second mask, which is okay, but the FX is definitely the mask for me.

If you felt comfortable with the mask at the sleep study, and the leaks were minimal, then it is a good choice for home use. Some of the sleep techs are really good at choosing and fitting masks for beginners. So, if you get a good sleep tech, take their advice, even if it was just a quiet fitting of a mask.