I have to take control! Rough start...

[Pappy Z]

I'm new to the forum - this is my first post... I've been using my BiPAP for about two months now. My first titration overnight was a disaster. Despite being a chronic mouth breather, the techs outfitted me with a nose mask so I spent most of the night sounding like a huge blown tire with an endless supply of air. No offer of a chin strap or full-face mask, though I now know enough about assisted breathing that were I to go through that experience again I'd have asked for these things. The technicians nor my doctor have spent much time asking me anything more than the standard questions they have memorized. My doctor seems to be highly regarded (perhaps it's merely self-esteem or egotism?), though it feels like he and his staff are going through the motions with me and others I chit-chat with in the long-waiting room.

I suggested during my last visit that the settings might not be working for me and I'd like to try something of a more contant pressure because I wake up in the night very distracted by the pressure oscillations. The noise, the feel, etc... My doctor said he wanted me for another overnight then said, "Oh... we can't do that... your insurance covers only two overnights in one year's time." (I can't afford the $1500 for another observation). So he writes me a scrip to bump my 12/6 up to 12/12 and tells me "I doubt this is going to work because this is a very high constant pressure." Ok... so you're the doctor - how about something you think MIGHT work?... My initial scrip was for 10/6 but I was still snoring a bit according to my wife so he bumped it up to 12/6 about a month ago. Thing is... it's the exhale I was struggling with but I didn't convey that particularly well in the 30 seconds I was allowed to speak with him during my appointment.

So... I'm on my third mask and have this 12/12 scrip in hand which I'm not going to bother with because I'm not going to blow my ears out just because the doctor told me to.

Despite all warnings, I've decided to take control of my machine and sort through this a bit over the next few weeks. Using the procedure to adjust the settings, I've found that something in the vicinity of 9.5/7.5 seems to be doing the trick. I'm more comfortable through the night and my AHI is finally dropping to around/under 2.0 from 3.5-4.0.

I have not run the Auto-Flex routine to let the machine help sort through this yet, though now that I'm narrowing in on what seems to be working I might go with it and see what it comes up with.

Sorry for my very long first post. For those of you that happened to stay awake while reading it... anyone have to confront the doctor on something similar to this? Am I in for a lashing because I'm taking matters into my own hands? Maybe on my next visit I HIGHLY suggest that 9.5/7.5 or whatever will probably work... or just fess up and tell him what I've been doing. My smart card will display the bold truth anyways...

[cinco777]

Pappy Z wrote

anyone have to confront the doctor on something similar to this?

You will find many members of this Forum that have or are dealing with Doctors of the kind that you describe. Some have "fired" their Doctors and moved on. Many, including me, use this forum as their new Sleep "Doctor". 99.9% of what I have learned that has helped to improve my sleep therapy came from my reading, comprehending, and applying what I learned here from the more experienced and knowledgeable CPAP users on this CPAPTalk forum. I am now trying to repay my very large "debt" by helping others.

I noticed that you are using the Flexifit 431 FF mask. I have been using one for the past five months and it works great for me. It is comfortable, secure, and doesn't leak other than sometimes into my eyes which leaks I can correct without too much fiddling.

I found the reporting software extremely helpful. I use EncorePro, an Excel Charting Program that I developed in June/July, and "nightly" notes to monitor and help me make changes to improve my sleep therapy. My start in March/April was shaky (AHIs near 10 and Time-in-Apnea at 2%). However, my weekly AHI now averages 0.3 and my Time-In-Apnea is < 0.05%. I accomplished this from what I learned from the many virtual "Sleep Doctors" on this forum. With only the ?help? of my real Sleep Doctor, I would probably have failed again just as I did on my 1st try with CPAP in 2005/2006 (I didn't find this Forum until March 2009).

If your Doctor is all ego - mine was - get a new Good one (they seem to be rare) or do what I did and try the virtual ones on this forum - you won't be disappointed.

[Pappy Z]

Thanks, Cinco... As much as I hesitate to step away from my doctor when it comes to as something as essential to life as breathing, I'm ready to step away from the frustration and towards empowerment.

I'm very curious about your Excel program. I'm a rather proficient Excel user (if there's anything I can do to help, please let me know) - so it looks like I just need to investigate how to get the data from my card into my computer (surely there is some reader I can buy, right?) I was thinking, too, it would be nice to have a simultaneous oximeter readout so I'd have a bit more confidence that I'm moving things in the right direction.

[harry33]

welcome
sadly there are many unhelpful sleep docs and CPAP providers out there and they seem to often be lazy and arrogant

your mouth breathing should be investigated as nose breathing has many advantages, however, many CPAP users do mouthbreathe and of course need full face masks

[carbonman]

Am I in for a lashing because I'm taking matters into my own hands? Maybe on my next visit I HIGHLY suggest that 9.5/7.5 or whatever will probably work... or just fess up and tell him what I've been doing. My smart card will display the bold truth anyways...

....or, you could wave goodbye to your alleged Dr. and
continue to educate yourself and
become your own best therapist.

You seem to be headed in that direction already.

.....I so dislike lashings from and fessing up to someone so undeserving to meter them out.
.....and I would never display bold truths to someone so uncaring.

[jskinner]

Sorry for my very long first post. For those of you that happened to stay awake while reading it... anyone have to confront the doctor on something similar to this? Am I in for a lashing because I'm taking matters into my own hands? Maybe on my next visit I HIGHLY suggest that 9.5/7.5 or whatever will probably work... or just fess up and tell him what I've been doing. My smart card will display the bold truth anyways...

Welcome to the group.

I think the steps you took are reasonable. Yes you will probably meet some friction from your doctor. Remember its YOUR body not his and YOU are paying him so your the customer.

I might suggest that you fill in your profile data so that we know what machine/mask/etc you are using.

[cflame1]

Have you tried pulling any data off the LCD?

What's the data like?

[plr66]

Maybe on my next visit I HIGHLY suggest that 9.5/7.5 or whatever will probably work... or just fess up and tell him what I've been doing. My smart card will display the bold truth anyways...

Pappy, I bet you are leaping to a highly unlikely conclusion that the sleep doc will notice or even care about anything besides the compliance number. Sad but all too frequently true.

[Pappy Z]

7 day average is 2.6 AHI (settings generally around 10/8 since I "took control" a week ago)
30 day average is 3.2 AHI (12/6 prescribed setting up until a week ago...)

Is now as good a time as any to try the Auto-Flex mode? (Respironics M700) If the machine is "smart enough", it's guessing at the settings is as good as my guessing, right? I can't believe my physician wouldn't recommend trying that, though it's a couple hundred $$$ every time I visit with him, so maybe he's not so inclined to solve my problems so quickly. Sorry - such distrust on my part does not promote a healthy relationship, does it. Oh well - he's earned it.

My wife said I was snoring a little last night so I think I may need to pump up the volume. She's an insomniac, so I get pretty good reports from her on my progress as well!

FWIW, I'm using the F&P Flexifit 431 currently. Works much better than the ComfortGel masks I tried. Less leaky and far quieter.

[SaltLakeJan]

Hi Pappy,
Welcome to the forum. I didn't fall asleep reading your post, it was interesting. I say interesting because many of the forum members have had the same experience with their sleep doctors as you did. I have had several sleep doctors, I can't say one was better than another, because all of mine have a slightly bored air . . . "I've heard all this before, why do I have to sit through it again " Perhaps they went into Sleep Medicine because they were easily bored. If our PCP's were as disinterested in our symptoms, as the S. Dr's, we might not make it through a common cold

You do need a sleep doctor to schedule any further tests, but your questions will be answered here - just as well - and it won't cost you a couple hundred bucks.

Jan

[Pappy Z]

Last night I decided to run the machine in Auto-Flex mode for the first time (12 max, 8 min). The machine was hummin' at 12/10 when I woke up - the 90% reading was 10/8.5. I had some very slight (and I mean VERY slight) pain in my lungs which I've felt before when getting used to higher exhale pressures. Otherwise, it didn't feel too unnatural to breathe, though I need to fasten my seat belt as the mask was a bit leaky. My wife noticed I fussed a few times with the mask last night though I don't really remember.

My AHI 7 day average crept up slightly (more events as it's in search mode, I would suppose). As it was at the maximum setting this morning, I'm going to take it up to 13 tonight. I'm going to need to get to bed earlier so I can get up earlier and give my face some time to reshape it's handsome self before I go to work.