Starting AutoPAP tonight---almost 3 weeks into therapy

[robysue]

Had an appointment with the physician's assistant at the sleep doctor's office today to talk about all the multiple issues I've been dealing with since starting CPAP on 9/23. Biggest issues are:

Daytime OSA symptoms that were NOT present prior to starting CPAP including, but not limited to: Excessive daytime sleepiness (to the point of being afraid of falling asleep at the wheel), foggy mind and inability to think clearly, highly irritable, and generally not feeling all that well.

Bedtime insomina: I have come to loathe going to bed these last two weeks. If I am not falling asleep on my feet walking back to the bedroom, the process of putting on the cpap and trying to find a comfortable way to sleep with the hose wakes my brain up big time. I've gone from getting to sleep around 12:30 am to getting to sleep around 3:00 am.

Bloating issues: air in mouth and air in tummy every time I try to take a deep breath with the CPAP on. All day long it feels like I've got air in my tummy. Makes it difficult to eat.

Dry eyes and pain around the eyeballs---particularly in back. Worse at night trying to get to sleep and it's not cause there's a leak blowing on them. Also bad when I get up. It literally feels like there's air blowing into my eyeball cavities from my nasal cavity.

In light of the last three major complaints, the PA authorized a change from straight CPAP set at 9cm to a week's worth of auto PAP with the S9 running wide open from 4 cm to 20cm. The DME set the S9 accordingly this afternoon. So tonight's the first night on Auto PAP.

She also gave me the standard insomnia tips, ideas, suggestions, and list of "do-nots", all of which I've already been doing for last week or so. We talked about my reluctance to take any meds even short term for the insomnia. We also talked about how this is now the third worst bout of insomnia I've dealt with in my adult life and if it doesn't resolve itself in a couple of weeks, it will be #2.

Talked a lot about anxiety and my more-than-likely over-thinking and over-worrying about the whole CPAP thing. She seems to think I should quit looking at the numbers every morning. [She also seemed a bit surprised that my DME had set me up with a S9 Auto since at least twice she said something like, "The DME will set you up with a loaner machine for the auto-titration."]

And finally, she did mention that if I really couldn't adapt to CPAP in after another couple of months, then oral devices might be an alternative since I've only got moderate apnea, with a third sleep study done in the lab to verify the oral device is genuinely working after something like two or three months.

So it looks like the long, slow slog through foggy mind-ville will continue for a while.

[CinnyAnn]

Hi robysue,
I started autopap last night with the same range 4-20. Been on cpap since June. I have adjusted to wearing the full face mask(I'm a mouth breather) and the whole 9 yards of using c-pap. My problem is that I am still tired all the time. I am still getting awake 3-4 times a night. My Dr. had me do a overnight oxygen level (I don't recall what it is called). My levels are still dropping during sleep. So, he wants me to do the autopap for 2 weeks. Sure hope this tell them something. I hope you can adjust to all of this. Just hang in there and the main thing is don't give up. Good Luck!!!!

[Breathe Jimbo]

I seem to recall reading that oral appliances are appropriate for mild sleep apnea only, not for moderate or severe sleep apnea. Perhaps she meant OPAP, rather than an oral appliance.

[dtsm]

For the initial 2 wk therapy, did you download you data to see numbers, i.e. leak, ai data? If so, share with us so that we might be able to help.


When I first started, was also very stressed - i had difficulty falling asleep with the mask. My solution was to fall asleep, wake up 1 or 2 hours later and then put mask on to sleep....it worked for me!

Good luck with apap tonight and keep us posted.

[elena88]

geez robysue, youre in the thick of it... Im so sorry you cant sleep..

I had the same experience..

when it got really bad, did I tell you the only way I could make sense of it was to pretend I was a secret agent being tortured
with an apap?

THAT made sense to my brain, and I did sleep better knowing i was suffering for a good cause.. I didnt give up my

agents names or whereabouts.. I mean torture is torture, might as well try to get through it believing you are making a BIG difference..

that by wearing it your saving lives other than your own..

Hang in there.. and dont put it on till you yawn three times

[timbalionguy]

This might sound like really weird advice, but you might consider trying a full face mask. The different way it applies pressure might be more comfortable for you.

[jonquiljo]

I started autopap last night with the same range 4-20.

If you have a lower limit of 4, you will get big jumps in pressure when you have events. Now a straight CPAP pressure of 9 may have been too much. I don't want to dispense advice, so I will just ell what happened to me. I am a mouth breather too. I started at a lower limit of 4 and gradually raised the pressure in 1/2 cm increments. I tried full face masks and not only were they uncomfortable, they just didn't work on me. Blowing the air into my upper airway opened it up - but too much pressure up there forced me to open my mouth to let loose the excess pressure.

Bottom line is that my lower pressure if raised too much had a distinct point where my mouth breathing increased significantly. So I slowly found that "sweet spot" (8.5 for me) above which I mouth breathed too much and at or below which my mouth breathing was not detrimental to me or my therapy. When I got it to that "sweet spot" the pressure increases were smaller and shorter and didn't force my mouth open nearly as much. So I use a nasal mask and just kept things stingy on the pressure until the machine felt that I needed more.

So I avoid all the failures (for me) of a FF mask, and the discomfort - and still get my AHI and events down low. A FF mask did not seem to help me breathe nearly as well.

Well, just my experiences to relate - but it seems to help. I have checked it out by home oximeter and it looks like it is working from and 02 standpoint. I may try taping it to my finger tonight and if I don't tear it off in the middle of the night - I will hopefully get further confirmation.

The best of luck to you. When I was on straight CPAP years ago, it was too uncomfortable to do more than a couple of weeks at a time. I think I had the same problem, the pressure was too high - forcing open my mouth and making me miserable.

Then again, I have been known to take a few sleep meds at times and they work well. Sometimes you need a bit of assistance - especially if you have sleep Dr. willing to accommodate with a script for something that will keep you asleep.

[Bons]

Robysue and Cinnyann,
I'm in the same boat, but hopefully getting out soon. I see the pulmonologist today after three weeks on a wide-open BiPap. My original CPAP prescription back in August was for 9cm of pressure but my AHI stayed at 9 and a bit. As of today my AHI five day average is still 5.9 and my 90% pressure is 15.2. I only had mild apnea to start with, at about 15AHI so I'm wondering why I put up with all this bother to still have mild apnea.....
I hope you find something that helps 'cause I'd sure like some ideas.

[robysue]

I'll post a more thorough update later.

But the good news is that I'm feeling almost human this morning. Still tired and sleepy, but no longer feeling like something the cat drug in. (And that's the best way I can think of to describe how I've felt most of the last 2 1/2 weeks.) All in all, this morning is an incredible improvement over the last three or four days. Here's hoping I get through my monstrously long day that doesn't officially end until 9:30 this evening.

I woke up once in the middle of the night last night----no idea why except tha that I wanted to turn over. Checked the pressure the APAP was running at; it was 5, so I don't think a pressure change was responsible. Had no trouble getting back to sleep with the mask on. [Then again, that's the one thing I haven't had trouble with: Even on the worst nights, once I got to sleep the first time, i had little or no trouble both staying asleep and keeping the mask on and quickly falling back asleep if I did wake up for some reason.]

Good news includes: Got to bed by a bit after 2:00 AM and succeeded in getting comfortable and falling asleep without any comfort issues triggering "WAKE UP TIME" for the brain. Didn't feel like a force-fed goose last night when falling asleep.! That's a huge improvement that no doubt was caused by the lower pressure sticking around until the first event. This morning I feel like I slept reasonably well. My neck does NOT hurt for the first time since starting CPAP. Again, with the lower pressure at the beginning of the night I think I finally succeeded in making what my husband refers to as a "proper Robin-nest". There's still air in my tummy, but no where near as bad as there has been previously.

The LCD's AHI numbers were AHI = 2.3, AI = 1.8, and CAI=1.1, all of which are a bit higher than my max numbers so far on straight CPAP, but not outrageously so. And since I actually feel somewhat alert this morning, I'll not worry about this today.

And ResScan indicates that the median pressure was around 7.4, with a 95% of 9.0 and a max of 9.2. It's also clear from the detailed graphs that the ResMed auto-adjust algorithm is responding to changes in "Flow Limitation--Round t0 Flat" even in the absence of a recorded apnea/hypopnea event. So most of the pressure changes last night were actually pretty gentle ones.

Thanks for all the support and ideas. They've really been helpful and they've been a major part of my ability to get up on that dang CPAP horse every single night after feeling like I've been both tossed and trampled every single morning.

[Gerald]

Robysue.....

My original prescription called for a pressure of 9-cm.....and I made the mistake of running my M-Series Auto at 4-20 cm. After reading more on this forum, I learned that.....for optimum therapy.....my machine should be set one or two cm below my prescription....and four or five cm above it.

Over time....and with a lot of experimentation, I learned that my best pressure is about 10.5 cm.

My machine is now set at 8.5 cm on the low end....and 14 cm on the high end. My AHI averages about 1.0 year in, year out. I keep my mouth leaks at an absolute minimum by using 2" Blue 3M #2080 painters tape.

Gerald

[robysue]

and I made the mistake of running my M-Series Auto at 4-20 cm

I have no intention of running the S9 wide open for any length of time. But right now, that's what the doctor's office prescribed, so that's what the DME set the machine to do. Yes, I have the clinical manual and I could adjust the settings, but until I'm completely through the two insurance company checks and at least the next follow-up at the doctor's office, I intend to do things completely by the book and let the DME set the machine.

I do think that if I'm still doing better on APAP at the next follow-up, I will ask the doctor or PA to have the script written for APAP with a much tighter range. What that range will be, of course, will depend on what the week's worth of wide open data indicates.

The PA's hypothesis that 9cm may be too high is based on several bits of data that predate last night's switch to APAP. Last night I was at pressures below 8.0 for all but about 30 minutes out of the 6 hour, twenty minute period that I had the device running. [And the 6:20 represents total time in bed as well.] So I am reasonably sure that this one night of data supports (does not prove) the hypothesis that my orignial script for 9.0 full time may be a bit higher than I need as straight CPAP. We'll have to wait and see what the rest of the data indicates.

[chunkyfrog]

I imagined I was an astronaut visiting an alien planet, where the air was not good for frogs.