Fragmented Sleep help request and I know the Eyes have it! :)

[icyura10]

I've been using ?pap therapy off and on since 1998. Off and on for numerous reasons but we won't delve into those.

I was once again diagnosed with Sleep Apnea in Feb of 2016. Sleep study revealed an AHI of (ready for this) 127.3 an O2 level of 62% with notations of me having cyanosis. Ok.. so as they put it to me, I was awake for some 25-30 seconds a minute on average, never ever got into rem. Sleep study for me ended after 4 hrs 10 mins (I couldn't sleep any more). Sleep Dr (a pulmonologist and a pulmonary surgeon now specialized in sleep study) had a long conversation with my primary. No one could figure out how I functioned in life.

Put me onto a CPAP; constant pressure of 18 cmH20... Went back to primary a week later and didn't feel any better.. and we couldn't figure it out.

Suspected it might be the mask that was causing me problems. I would awake because of air getting into my eyes from the seal on the bridge of the nose. One week later changed from nasal mask to Pillows (P 10's). Asked DME if they had software I could get to see what my machine was recording because the website was reporting good success for me (except for leaks) and they told me I wouldn't understand it. AHHHHH!!!!! Where's my GUN!!!

Found SleepyHead and this Site (oh praise the Lord and thank you for such a wonderful and helpful site!)

Made an appointment for the following week with my Primary. Didn't notice any difference after the mask -> pillow's change. Did some digging around on the network and found SleepyHead software. Installed it, and low and behold, I could now see what was going on.

While I was getting 6-14 hr's sleep / 24 hr period, it was unusually fractured. 30 mins, 45 mins, 1-2 hrs, sometimes 3 hrs, rarely 4 hrs and never more at contiguous block. But, my AHI's were almost 0 so the Insurance company was happy and not about to allow my CPAP to be converted. Took Pictures of the data on my card and showed them to my Primary and his answer was, "your going back to sleep study."

So, now I'm' back at the sleep Dr's office, (first time I've actually met this guy) and after the normal introductions, he starts wandering around in my medical record. Then I hear him say, "Oh.. I remember you.. your the one who turns blue when you sleep!" I retort, "Yup, I'm Poppa Smurf!"

After looking at my data, he said, CPAP's no good for you, you need a BPAP and a different mask. Handed me a Dreamwear under the nose mask and said use this on your CPAP till you get your BPAP.

Ok. so now I've had 2 BPAP's. Had to change DME's (DME 1 refused to order the mask the Dr. wanted me on.) But while I had the BPAP from DME 1, it was set up in "S" mode; with EPAP @ 18; IPAP 2 12, and PS @ 8.

Still had sleep patterns 6-14 hrs / day; of 30 - 180 mins; few <= 7 AHI's.

Switched to DME 2; machine is now in "AUTO" mode; EPAP @ 20, IPAP at 12; PS @ 5. AHI's still statistically low, but sleep is still wildly fragmented.

Generally speaking, I have an average run time of about 2-3 hrs unless I absolutely have to do something requiring longer periods of time, (off to see Dr's, Auto Repar where I have to wait, shopping for food, etc.)

After the 2-3 hrs run time is up, I'm ready for a snooze... I've been know to sleep in the Dr's office waiting room before the appt such that they need to mosey over, kick me to wake me up n' drag me into the back. Or like yesterday, I had to get my galactic speeder repaired, I snoozed in the waiting area.. (I'm sure I snored loudly, but I didn't stay up to listen.) I suspect snored because the other day right after awakening, I went to see a movie. The nice lady behind me touched me on my shoulder to wake me up and said I'd drifted off numerous times and snored loudly enough to bother everyone within 3 rows and about 6 seats on either side of me... Oh well, she / they were nice about it.

Be cause of all this, I'm no longer able to work and I used to be like the energizer bunny.

I do have COPD but my O2 level when I sit around is 94-96. With that as an O2 I apparently don't qualify for O2 support. Seems like I've had a very long term upper respiratory infection (since say Sept of last year) that we just can't seem to get under control.

My TLC is 2.1 Liters, which is just a tad small for someone above 6'.

I've been studying all my charts for a long time now and I can't quite figure out what knobs to turn or buttons to push on the BPAP so I can get longer sleep periods.

Here's my plot from last night.



Oh, I've tried numerous nasal masks (which cause my skin to have real dermatological problems requiring some expensive medication to the tune of $800 for 30 grams / month) plus all the other pulmonary medicines they've got me on.

Since there are so many with so many eyes here I'm hoping some of you have some ideas as to which way to turn for some relief.

As always, TIA

[PoolQ]

You sound like me, and the same path (mostly). Fragmented, COPD, good O2 & AHI, same machine-for the same reason.

What has helped me a lot (YMMV):
1. TiMin and TiMax settings-the machine was cutting off my inhale time, like right at the end of my inhale someone was pinching my nose. I set TiMax at its max because I was not having a problem with that. TiMin I finally ended up with it at 3.6 seconds and this was fixed.
2. Trigger and Cycle- Trigger is how sensitive the machine is to detecting my starting to inhale, I made it one step more sensitive. Cycle is how the machine detects the end of my inhale, I tried more sensitive and that was wrong, felt it without sleeping-just wrong. made it less sensitive and have left it there so far.
3. I was getting periodic breathing, that was not Dx for periodic breathing. It was more of a repeating pattern. Flow rate drifting down to zero, recovery breathe and repeat for an hour at a time, every 5-6 breathes. It was suggested on this forum that they thought my lower pressure limit was right on the edge of apneas for me and I have now raised my minimum pressure by 1.4cm, tried 1.6 and that was too much, could not tolerate it. My flow rate still drifts, but not down to zero and I am much better.

It's good you are on BiLevel already, as these settings are not available on the base machine. Tried to look at your plot but need detail close up of the flow data. Try the new settings and see what you think, most of these settings are talked about in ventilator tolerance publications, it's kind of like two gears that don't quite fit-your breathing and the machines response-I was quite sensitive to it.

•Patient-Ventilator Dyssynchrony occurs when the patient’s demands are not met by the ventilator, resulting from problems with
(1) timing of inspiration (2) adequate inspiratory flow for demand (3) timing of the switch to expiration and (4) duration of inspiration

While CPAP is not a ventilator, the above situation is applicable to CPAP. Lots of articles on the web about it. just not under CPAP.

[OpalRose]

Since I'm no expert on bipap settings, I will leave that to others that know....but you certainly need to do something about your leak rate. It's way too high!

Finding a mask that is comfortable for you and doesn't leak is a challenge. But without controlling the leaks, you can't be sure your AHI numbers are accurate.

[Sn00zeAlarm]

If you have a persistent upper respiratory infection, it is important that you keep the machine, hose, and mask clean. Clean it as described in the owner's manual.

And do not play the bagpipes. I am serious! There is a condition called "bagpipe lung" that comes from the kind of mold that can grow inside a set of bagpipes. People have died from it. It was in the news recently.

[icyura10]

If you have a persistent upper respiratory infection, it is important that you keep the machine, hose, and mask clean.

Clean it as described in the owner's manual.

Thanks, I do, and I've recently removed the humidifier tank and replaced it with a side panel. So there's no water in the machine.

[icyura10]

PoolQ,

Thanks for the info... I'll see if I can get on with mucking with the settings as you've suggested.

I'll give it a few days and see what falls out..