AHI 131 !! - Help me understand my SleepStudy & CPAP results

Kenwood wrote:I've sent my card to my DME twice in the last month. What I do, since I look at my stats every day on SleppyHead, I copy the FOLDER from my machine SD card to my computer desktop - then copy the FOLDER to a Backup SD card. Then just to make sure, I update Sleepyhead using the backup card just to make sure the data transfer worked. Then send the Backup SD card to the DME and put the original SD card back in my CPAP machine

....and this is the reason WHY you should NOT send your original SD card to the DME. I got the envelope back from my DME and it was missing my SD Card. Since the dumbs DME put my card in a normal envelope...when it went through the post office sorting machine...it must have squirted the SDCard out of the envelope. My SD card now GONE!!

Pugsy sent me two nasal pillows to try since I'm having such leakage using a FFM and my DME has been a-hole (switched DME company). So I now have the Aloha and Swift FX Nasal pillow masks to try out. So I played with both pillows this afternoon for an hour to get used to the nasal pillows and see if they were comfortable and adjust/play with em at my high 16/20 pressure. At first it was a little hard to breath, but I got used to the different feeling of the direct air pressure into my nose. Plus I wanted to get some baseline numbers on Sleepyhead while awake and having no leaks/snores.

Here's an ONE HOUR of this afternoon's baseline nasal pillow numbers: Aloha, shutoff machine, Swift FX, shutoff machine, Swift FX

OMG...we actually have a leak line below 45 L/min.
How sweet.

Yes, the nasal pillows and breathing is a bit odd at first for anyone much less someone using a big bulky FFM.

Crossing my fingers here that we don't have a lot of mouth breathing tonight....Some will be acceptable...so don't panic if you have some.

Kenwood wrote: Wow....seriously WTF!!! I'm soooo pissed off at my DME.
<post snip>
I just got off the phone with the lead respiratory tech at my DME company……Then it gets better. I told him that I'm still dealing with Major leak issues with my mask....get this.....he says based upon the printout from my SD card he's looking at I'm not have ANY LEAK ISSUES.....AT ALL! Are you kidding me!!!

Pugsy wrote:

Kenwood wrote:(Pugsy - anything you wanna add?)

Not that's suitable for public viewing or what a lady should be saying.

I would have lost it with the "your leaks are fine" statement. Geez....frigging idiots. They would have thought I was most unladylike and said some things that would probably make a sailor blush. <snip>

I would be classifying them as LSOS and based on the "your leaks are fine"....they don't know squat about what they are doing and apparently don't care about you.

Hey Pugsy…..I got the one page printout from that lead respiratory tech at my DME company. What an idiot….yeah NO LEAKS huh? Only averaging 2 hours, 8 mins of LARGE LEAKS from an average 6 hours of sleep per night. Plus my SD card was gone too.

I told you I thought they were frigging idiots.
You know the sad part...they don't care or they wouldn't have let that slide.
Probably only bothered getting that one summary page and can't even read that.
You know..he probably thinks he walks on water.
I am so glad he is history.
How's the new DME? Have you done much with him yet?

Pugsy wrote:How's the new DME? Have you done much with him yet?

Was too busy with work last week to do anything really....much less post here. The new DME company is "US MED". I try following up with them on Monday. But I also upload my RX to CPAP.com today

FINALLY SUCCESS on DAY 51!!!!
LOWEST LEAKS EVER!!!
LOWEST AHI EVER OF 0.72!!
1st time using the ALOHA Nasal Pillow mask

Pusgy....you are a GENIUS - If it wasn't for you sending me the Aloha (and SwiftFX) nasal pillows masks to try out, I probably would never have known I could wear a nasal pillow mask. I am so thankful and grateful for you sticking with me as my mentor and looking after me. BIG HUG!

I was able to sleep in any position I wanted last night. The mask felt very comfortable to wear (tho I didn't have the micro-fleece headgear wraps). I slept and feel GREAT! From what I can remember, I kept my mouth closed the whole night. I didn't have any of the being woken up to gushing sound of air leaks or a FFM riding up into my eyes. It was soooo nice to feel freedom to sleep more on my stomach and the side of my face into my pillow. I did have a couple snore sessions, but they did not correspond to the two leaks I had tho. I had an epiphany thinking it might be "mouth closed snoring vibration sounds" (as I call it) as I have a VERY long uvula and sometimes it make vibrating sounds based upon how far my neck is bent (even when I'm awake) when I breath. I'm not sure if I had the straps a little tight, as I wouldn't say the pillows were "floating" on my nostrils as I've read here. Might need some tweaking over the next couple nights.

Now I know this is only one night and I need to have continuous nights like these, but this has lifted my spirits and given me some hope finally. One thing I know for sure....I'm DONE WITH FULL FACE MASKS!!

Saturday night's data - Night #1 with Aloha Nasal Pillow:

Impressive. And how do you feel after a night like this?

Drowsy Dancer wrote:Impressive. And how do you feel after a night like this?

I feel really great this morning.
I was able to sleep more soundly last night cause I could almost sleep in my normal Pre-CPAP position of on my stomach/face buried in pillow. I lreally liked how the Aloha has that ball-joint movement and I was able to finally get comfortable. I propbably could have slept longer, but I woke up and had to use the bathroom - drank too many latte's at the coffee house last night.

Now that you have a single night under your belt, let's push on to make a trend.

Do you have any idea how hard it is for a woman to not say "I told you so"

I will take that report any day of the week and be totally happy
ESPECIALLY because you slept well and feel good. That's what is supposed to happen.

Some people are able to manage full face masks very well and get awesome good reports and feel great but they aren't for everyone. Just like nasal pillows aren't for everyone.

I am so glad I was able to talk you into trying them and even more glad that we got lucky and it works so well.
Even within the nasal pillow mask models there are some that work well for some people and not so well for others.
We were lucky that someone recently donated those masks so that someone like you could benefit from the donation.
It didn't work for someone else but works great for you. Everyone's a happy camper.

So here's another time I climb up on my soap box and harp a little on full data machines....in this case it was again the leak data along with poor sleep quality from fiddling with the masks that were critical. If there had been no data available the DME and doctor would still be telling you "give it time". We wouldn't have know the pressure was sub optimal and wouldn't have known all your therapy pressure was leaking out the mask. Sad thing...no amount of time would have fixed those issues. It's no wonder cpap machines end up in the closest.
So off my soap box now.

Congratulations..you are on the home stretch now. It will get better. You may still have some bumps in the road but you know now that it can and will work.
I am a big fan of Karen at Pacacheeks side strap fleece covers. So if you are getting a few marks on the face you might consider those or making your own.

Congratulations. I am very happy for you.

It's just an overwhelming experience to sleep through the night NOT FIGHTING WITH MASK LEAKS. Even more so taking 51 days. But I must say that without a couple weeks of treatment helping out my nasal problems, I don't think I would have been in a position early on even thinking about a nasal mask. I really think my FFM are too big and I needed a small instead of a medium. But Pugsy was very persistent in staying with me and not letting these major leaks get me down. If it wasn't for Pugsy and this forum, I would not be feeling this good nor would I be in control of my treatment.

I feel great this morning, Another successful night using the Aloha Nasal pillow mask. A full night of NO LEAKS at all! So amazing to seen my 95% leak level at 34. My snores were plentiful tho.

I'm a little stumped about what happened at 3:30am on the leak chart to spike DOWN - I've never seen that before

Sunday night's data - Night #2 with Aloha Nasal Pillow:

The spike down thing....I have seen that myself and so have a few others. We are pretty sure the vent holes got blocked for a short period of time. Arm laying across the vent holes or something blocking the vent hole briefly.

The snores....indication the pressure is still not yet quite optimal but it's sporadic and since you are feeling great and not waking up with them....I wouldn't worry right now about them. Your pressures are already near hurricane force winds and more pressure might disturb sleep more than having a few snores sneak past the defenses.
If you get that Auto BiPap...then we let the machine decide if the snores are worthy of more pressure.
The snore numbers are still vastly improved over when you started.

Awesome good leak line last night. Zero evidence of any mouth breathing.

Now...did you know that DMEs often tell people who are using higher pressures that 12 cm or more is more than people can use with nasal pillows? They say people can't handle them at high pressures. How stupid is that?

Pugsy wrote:The spike down thing....I have seen that myself and so have a few others. We are pretty sure the vent holes got blocked for a short period of time. Arm laying across the vent holes or something blocking the vent hole briefly.

That would make sense...since I've gone back to the way I slept prior to starting CPAP (happy dance) - which is on my left stomach side (ala Falcon) with my face into my pillow, left arm under my pillow and my right arm near my pillow/face. This alone has improved my sleep quality! And it's soooo helping my back not hurt anymore. So it must have been my pillow or right arm that blocked the vents temporarily. With the new added length of the nasal pillow hose, I think I need to figure out a new hose re-route as it seems just too long now.

Pugsy wrote:The snores....indication the pressure is still not yet quite optimal but it's sporadic and since you are feeling great and not waking up with them....I wouldn't worry right now about them. Your pressures are already near hurricane force winds and more pressure might disturb sleep more than having a few snores sneak past the defenses.

These snores must be what I call "mouth closed snoring vibration sounds" and with the nasal pillow, I have my mouth closed the entire night with no leaks. Is this common I have a VERY long uvula and sometimes it make vibrating sounds when I breath. Does this make sense