Suffering -- what is my SH data NOT showing?

[kaiasgram]

Not trying to be melodramatic here, but I am feeling very crappy and very frustrated. I just emailed my sleep doc with these data files and I'm hoping she'll try to help me.

My question(s): With apneas well-controlled as mine apparently are, what other potential sleep problems can still be happening that would not be measured by the SH data and graphs? Can anything even be inferred by the experts on this forum by looking at the graphs -- e.g., do you get any hints about sleep stages, non-apnea and non-hypopnea arousals, or anything else that could be interfering with restorative sleep? People often post messages when I submit my graphs that say they "would kill" for my AHI scores, but trust me you would not want to be waking up feeling the way I feel -- which is no better than before I went on treatment. Despite that I am falling asleep quickly and easily, I'm used to breathing with the mask and have nearly 'conquered' leaks, and the aerophagia is much better now, I wake up feeling unrested and with a headache, usually overheated and feeling like my body has been working very hard all night. I no longer believe that this is all emotional resistance to CPAP.

So will you please take another look at my graphs? This is from last night, AHI 0.88 and leaks very minimal. I can add the snore graph if you want to see it, but it's flatline along the bottom. As is typical, the events I do have are mostly clear airways that happen early in sleep and just before waking up in the morning. Any speculation from our experienced members about what you see during the night on my graphs would be welcome. I've asked my sleep doctor if I could have another night with the diagnostic device I used the first time, the wrist-PAT 200, and using my CPAP. That device apparently does break down sleep stages, I remember the RT telling me the percent time I spent in different stages -- it's not an EEG machine so I'm guessing that with that device sleep stages are being inferred from heart rate and oximetry readings, but I don't know for sure. I do know that my heart rate goes low, to the low 40's (seen on the report from my titration week) and the high is often mid to high 80's. One night on titration it hit 155. Is this heart rate variability a possible culprit in disrupting my sleep?

Thanks for taking yet another look at my data:

[greatunclebill]

the one thing you could do is buy a pulse oximeter and see what your o2 is doing at night. even with cpap, your o2 could be dropping.

[kaiasgram]

the one thing you could do is buy a pulse oximeter and see what your o2 is doing at night. even with cpap, your o2 could be dropping.

Thanks Uncle Bill, I agree that would be a good idea and I've been wondering all along if I could have desats not due to apnea/hypopnea. Or maybe a heck of a lot of sympathetic overactivation that is messing with my heart rate and preventing deep sleep. I am so broke from being unable to work during most of May and June (no sick leave, I'm self-employed) and having to buy all my cpap equipment out of pocket that my dear son is now sending me money to help pay my rent. If my doctor won't let me use an oximeter or wrist-PAT from the clinic, I'll pull my credit card out again and buy an oximeter and necessary software (I'm on a Mac so I'd need to buy Windows and possibly emulation software), because I think the o2 and bpm are important to look at in this situation. I appreciate your feedback.

[Diablode]

the one thing you could do is buy a pulse oximeter and see what your o2 is doing at night. even with cpap, your o2 could be dropping.

Drops in o2 have little to do with daytime symptoms so I'm not sure that would be helpful. Daytime symptoms are almost entirely the result of arousals/sleep interruption.

It looks like you have some flow limitation problems, especially toward the end of the night where you are scraping your max pressure setting and it looks like you DID hit your max, which I imagine you want to avoid. Have you considered raising it?

Also, do you have your sleep lab report handy? Were there any RERAs?

[greatunclebill]

Drops in o2 have little to do with daytime symptoms so I'm not sure that would be helpful. Daytime symptoms are almost entirely the result of arousals/sleep interruption.

o2 is always something good to check and know about. sometimes people find out that their o2 levels are dropping to the point they might need supplemental o2 even with cpap working correctly. i sleep next to living proof that uses a prescribed o2 generator because i bought a pulse oximeter and checked hers. of course nighttime o2 breathing and o2 problems can carry over into the day time, maybe or maybe not to cause op's problems. i don't know. i'm not the expert.

[kaiasgram]

Also, do you have your sleep lab report handy? Were there any RERAs?

I was never seen in a sleep lab. I can see if Kaiser will send me the report from the at-home diagnostic test report but I don't know if would show RERAs. Once on xPAP can you infer RERAs looking at the flow limitation graph line or when you see a pressure increase not accompanied by hypopneas or apneas? I've learned the pressure increases because it senses something (thanks pugsy!), but since it apparently is not responding to my CA events, could it be that I'm having RERAs at those times?

Last night I had the longest stretch of cruising at a fairly low pressure that I've had this whole month. I see that the pressure went up in those last few early morning hours -- I had woken up and know I had restless sleep during that last stretch. I actually felt better yesterday, when perhaps ironically I had much less time in low pressure and more flow limitation problems throughout the night than was the case last night.

I was just looking at an older post by robysue about the controversy over whether pressure should be higher for RERAs or lower. I do know that I had big problems with aerophagia at higher pressures and no doubt was hypersensitive to those high pressures and the fluctuations throughout the night on APAP. I'll be interested to hear if she thinks a trial of a fixed lower pressure would be worth a try. I also hope to hear something helpful from my sleep doctor. Will let you know what happens, and thank you for your attention and help.

[Julie]

You don't need Windows or other things to use an oximeter overnight, just the oximeter (as long as it has an alert feature that wakens you if you begin to desat, so you can see what the number is).

[DoriC]

It's really hard to ask you to change anything with data like that but have you experimented with EPR settings, HH, or have you thought about trying a straight cpap setting or a different mask? I'm just thinking out loud, I have no real reason for these suggestions? Hope you get this sorted out quickly.Keep us posted.

[kaiasgram]

You don't need Windows or other things to use an oximeter overnight, just the oximeter (as long as it has an alert feature that wakens you if you begin to desat, so you can see what the number is).

Are the alarm settings programmable? I looked at one model online that said the alarm sounds when your heart rate drops below 50. With my bpm often in the low 40's, the thing would be screaming at me all night. Do you know if you can turn off the bpm alarm and just set the o2 alarm? That could be useful.

[Diablode]

It's really hard to ask you to change anything with data like that but have you experimented with EPR settings, HH, or have you thought about trying a straight cpap setting or a different mask? I'm just thinking out loud, I have no real reason for these suggestions? Hope you get this sorted out quickly.Keep us posted.

Trying no EPR isn't a bad idea. Hypothetically, there could be a problem on exhalation that isn't getting remedied when the EPR lowers pressure.

[kaiasgram]

It's really hard to ask you to change anything with data like that but have you experimented with EPR settings, HH, or have you thought about trying a straight cpap setting or a different mask? I'm just thinking out loud, I have no real reason for these suggestions? Hope you get this sorted out quickly.Keep us posted.

Hi Dori, mostly I've experimented -- with support -- with my max pressure setting. I've lowered it from the original 10, over this month, down to 8.2. I have not changed my EPR which is currently set at 3. I am thinking about trying a straight cpap setting but would like to hear from our resident wizards first. What is HH ??? (I should probably know but I'm tired!).

Thanks Dori! I don't think I'd mess with my mask since I've finally just gotten a handle on leaks and the mask is as comfortable as any mask can be.

[kaiasgram]

Trying no EPR isn't a bad idea. Hypothetically, there could be a problem on exhalation that isn't getting remedied when the EPR lowers pressure.

I'm willing to experiment with that. I was just thinking about how Provent (not to stir up a hornet's nest!) relies on exhalation back-pressure to splint open the airway, then possibly turning off EPR could help provide a bit more back pressure (hopefully it wouldn't start aggravating the aerophagia). I have no idea, though, whether this has anything to do with how I'm feeling unless I am having disruptive RERAs which could possibly be treated by keeping the exhalation pressure steady. Worth a try, and thanks for your input.

[Lizistired]

Drops in o2 have little to do with daytime symptoms so I'm not sure that would be helpful. Daytime symptoms are almost entirely the result of arousals/sleep interruption.

You apparently don't have desats.
I slept through a power outage last june, soundly enough that I never took the mask off even though the machine came on briefly 4 times during the night. I couldn't function the next day. I went and bought a power out alarm.
If I fall asleep on the couch, I sleep like a log, but I wake up with blurred and double vision. I normally wear an oximeter in alarm mode if I lay on the couch to watch tv because my O2 drops when I lay down, then I fall asleep, and it keeps dropping.

Kaiasgram, If you had desats during your initial study, an oximeter is a good idea.
What was your prescribed pressure?
I second the suggestion to lower the EPR. I would try it off and see if you need it at all. If you do, try it at 1 and go up from there. It's dropping the pressure to 4 cmh2o now. If you need the EPR, I would consider raising the minimum pressure 1 cm for each level of EPR and see if you feel better.
If those graphs were mine, I would say I had 3 good REM stages, and then put off getting up for that break. It doesn't look like you slept well after the break, so I wouldn't worry about that segment.

[kaiasgram]

Drops in o2 have little to do with daytime symptoms so I'm not sure that would be helpful. Daytime symptoms are almost entirely the result of arousals/sleep interruption.

You apparently don't have desats.
I slept through a power outage last june, soundly enough that I never took the mask off even though the machine came on briefly 4 times during the night. I couldn't function the next day. I went and bought a power out alarm.
If I fall asleep on the couch, I sleep like a log, but I wake up with blurred and double vision. I normally wear an oximeter in alarm mode if I lay on the couch to watch tv because my O2 drops when I lay down, then I fall asleep, and it keeps dropping.

Kaiasgram, If you had desats during your initial study, an oximeter is a good idea.
What was your prescribed pressure?
I second the suggestion to lower the EPR. I would try it off and see if you need it at all. If you do, try it at 1 and go up from there. It's dropping the pressure to 4 cmh2o now. If you need the EPR, I would consider raising the minimum pressure 1 cm for each level of EPR and see if you feel better.
If those graphs were mine, I would say I had 3 good REM stages, and then put off getting up for that break. It doesn't look like you slept well after the break, so I wouldn't worry about that segment.

Lizistired -- Thank you for weighing in on this. I did put off that bathroom break until I could put it off no longer ! My prescribed pressure was 6 to 10. My min pressure is still set to 6 and I've brought my max down to 8.2. As to your question about desats, I don't have a copy of the initial take-home test, though I must have had desats. During my titration week, I had desats while on CPAP: First night I had a desat to 74%, for 41 seconds. Sixth night a desat to 88% for 15 seconds. I don't have graphs to see what else was going on at those times, but obviously I was desatting while on CPAP. I would like to see the whole detailed report for each night of titration because my AHI for that titration week was only .1 -- I wonder if the desats correspond with apnea events. I'm not sure how useful that titration week was, because I was fighting leaks and barely sleeping all week -- and definitely would not have been in deep restful sleep for long. I'll definitely get a power outage alarm (been meaning to do that) and one way or another I'll get an oximeter. I'll tweak EPR and see what happens. Thanks so much.

[MaxDarkside]

Not trying to be melodramatic here, but I am feeling very crappy and very frustrated.

Judging by your data, you have sleep apnea darn near perfectly treated. Your feeling crappy is probably not related to apnea. I see some appropriate sleep structure in there too. Good. I'd look elsewhere such as sleep hygiene (quality, sufficient deep, REM), medications, exercise, other maladies.