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