Question from the back of the class

[Grace~~~]

May I suggest you search for "mouth taping" on this forum and try a night with your mouth taped. See how you do. That will quickly tell you if mouth breathing is the problem or not.

As for hose management--here's a "quick and dirty" trick, buy yourself a package of Command Hooks. These stick to the wall very well and come off without leaving marks. You can use it on a headboard (not a fabric headboard) or the wall above the bed wherever you are for the night, remove it in the morning. I buy a package of elastic headbands--they are about 1/4 in wide and come in various colors. Hang the headband on the hook, thread your hose through the headband.

When I travel, I also bring along a bunch of rubber bands. They can be chained together to use for hose management, too. I learned this trick from a YouTube video where the guy could hang his hose literally off ANYTHING. Typically it was the artwork secured above a hotel room bed (often these are very securely fastened so people don't try to steal them), or a headboard corner, or the bedside lamp (often wall mounted). Rubber bands often come to the rescue for me.

One other thing I travel with is an extension cord (the one I have now has a surge protector strip), so you can always reach the plug.

Great tips Janknitz.

The extension cord is brilliant. I would have never thought of that and would have had to have learned the hard way. Thanks for saving me one "knock". ... and surge protector is great tip too!

I sure hope I am not a mouth breather.
I do not think I can tape my mouth.

I will definitely try the hose control ideas. Maybe I can get the supplies today.

It so happens that the bed I will be in tonight is in a "loft" and the bed is in the middle of a huge room .... floating with high ceilings but I do have curtain rods with sheers for privacy / mood ... so I am sure I can do something with those rods. Nothing says sexy like a hose clipped to your canopy.

The other bedrooms have the headboards against a wall. (As are all the hotels I can think of?) So I guess I need to conjure a MacGyver attitude and control this hose! I would like a longer and much more pliable version though ... I think I read here somewhere about a 'dream hose'?

[avi123]

Click on the image until it enlarges:

http://imgur.com/sVYFVHp

why do you wake up so often during sleep?

[Grace~~~]

Your baseline leak isn't where I would expect it to be. It needs to be near 0.0 at least for some time at the beginning of any sleep sessions when we would assume that you are awake and the mask isn't leaking and you aren't mouth breathing.

Is there another session I should look for to find a better example? No two stats look remotely the same. It's crazy. You'd think even by coincidence I should have more "pairs" if not patterns.

Could you please check the mask selection feature on your machine and make sure it is set to "nasal"?

Yes my machine was set to nasal.

Also...check to see what the hose is set to...as that can mess up leak calculations.
Heated hoses are normally sensed by the machine but there is a choice for the non heated slimline hose (15 mm) and the non heated regular size hose (22 mm). Make sure the correct hose selection is chosen.

Yes the hose is set to slimline and the hose has slimline printed on it. The other choice besides slimline was "standard"


...also got clock fixed so I think I can do the 15 minutes now.
It was wrong. The only thing they did for me in the closet was set my clock.
How perfectly representative of the care here by Blue Cross / Blue Shield's chosen representatives.

Thanks for your help, Pugsy.
SO MUCH.


Is there one stat I should go through and look for?
Like the highest or lowest of anything?

I really don't think I am a mouth breather.

...but maybe the words have a bad connotation for me and I am in denial?

I have no allergy or breathing issues or congestion.
I am a Florida girl born in the water and I am an excellent swimmer.
So I have 'swim type ideas' about this mask and how I am breathing but I don't honestly know if those ideas translate in to anything relevant or accurate?

The dreamwear has good holes and blows hard out of the front of it.
It's windy and noisy but I thought it must be normal.

They just mailed the mask to me.
No instructions at all.

It did cross my mind that it was returned by someone else who modified it and made holes.
But that grossed me out so I blocked the idea.

I really like the mask.
As much as one could who knows nothing about anything.

They just checked to see if I was within 30 days of receiving first mask and said "Ok, we'll mail you a dreamwear". Which I was happy about even though I would have liked to have been "fitted" and given more information,

The service / care has been so bad that it doesn't seem like this could be medical in nature.

anyway ~~~ that doesn't matter.
What matters is trying to figure this out myself.

I seriously doubt they have anyone like this group posting here even on staff.
So, it's probably all for the best.

...and BOTTOM LINE GOOD NEWS?!

... I think

think?

I think I am feeling a little better?
A little more energy.

... and that has corresponded with this time I have been trying to use cpap.
So I really don't want to give up.

[Grace~~~]

Click on the image until it enlarges:

http://imgur.com/sVYFVHp

why do you wake up so often during sleep?

I don't know.

I could make lots of guesses?

I also could have just picked a bad example of a day to post.


...but I am kinda a mess.
I know I don't fit in to round or square holes.

I don't know if I will be able to figure any of this out so that it makes sense.

[Pugsy]

Try the 15 minute thing and lets see where the baseline leak when we know for certain that there shouldn't be any excess leaks. Remember your machine is reporting excess leak only and while we allow for a little less than perfect 0.0 due to the fact that the machine may not be subtracting the exact vent rate prior to reporting leak..it's shouldn't be that far off.

Mouth breathing leaks and mask movement leaks can look the same on the reports so it's really impossible to tell for sure that mouth breathing is involved or not unless we know for absolute certainty that the mouth is staying shut. That's why Janknitz suggested mouth taping as an experiment...not saying you need to do it all night even...just part of the night maybe to see if the leaks are reduced while the tape is on.

The baseline leak for the DreamWear was a little bit higher for me when I used it and I know I didn't have excess leaks that amounted to anything...so I assume that it may be venting a little more and the machines' subtraction prior to reporting may not be 100% spot on accurate....so maybe we can allow a little more before we start worrying about that 24 L/min line that ResMed uses for large leak territory.

Don't worry about messing with your images or where you hosted them and what you did post showed me what I need to see. Avi has this thing about things being a certain way...his way...and can't seem to be flexible when things aren't his way. Don't let him stress you out...it's not needed and it's counter productive..especially in your situation.

Let's take one thing at a time and where you host the images doesn't even make the list of things to do differently. If I need something different from you I will ask. Until then don't worry about anything.

Right now ...given your history and situation though...leaks are not nearly as important as getting you some sleep with the mask and machine. Have you tried a nasal pillow mask?

Let's see the 15 minute baseline graph....see what we are working with.

[Grace~~~]

[Grace~~~]

MG SH!!!

It's BEAUTIFUL ... isn't it?!!!

I want it to look like this all the time!

I know nothing but I think I know what GOOD looks like?


I was very still and quiet and laid on my back and just read for a bit.

Which means my machine is working but I just suck, right?

[Pugsy]

I can't see it from here but I gather you now know what I mean....

So if the baseline is normal looking when we know for sure that no excess leaking is going on...that leaves 2 suspects for causing the leaks.
1...Mouth opening (doesn't necessarily mean mouth breathing) enough to allow massive air loss out the mouth which in all honesty from what I see here...I don't see how anyone could sleep through all that but maybe you sleep like a rock
2...Mask movement which I know personally one can sleep through that sort of movement because I have done it....back when I was taping my mouth and the tape was secure the next morning...so I know it can be done.

Could you maybe play with taping your mouth short term to see how bad it really is or isn't...do it while awake and not trying to sleep...just to see what it is like.

If you could get a couple of hours of sleep with the mouth taped...I think we would have an answer one way or the other as to what is happening.

If your leaks didn't go above 30 or 35 L/min...we might let them slide a bit because the machine is still able to sense and respond up to that point (while maybe not ideally) but once you start seeing those UA flags that means the machine is having trouble identifying whatever it is sensing and that also means it likely will have problems responding appropriately. Over 35 L/min and things really go to hell in a hand basket. If your time over 30/35 was brief then I wonder worry so much but you are spending a lot of time deep into large leak territory where the machine probably is clueless.

Other choice...try a different mask again and see if another one is more stable but we don't know for sure that this mask is moving or not. Hence the taping suggestion....just for part of the night if that's all you can manage.

[Colonel-Cactus]

[Colonel-Cactus]

I imbedded your picture into a post to make it easier to see but I was cut off like the last one so I guess I'm no better at this than you.

[Grace~~~]

Hello.

I will reread that post a few times. I understand about the taping of the mouth and I will give it a try.
I don't really understand yet some of the numbers but I am reading them and thinking about it and so I expect it will all begin to gel at once. I *AM* getting the gist.

My cousin, John, posted the images for me. I was just about to get him to teach me what he did.

...but y'all can't click on that thumbnail and see it?
Is the information he chose for the screen shot correct?

John also questioned my leak rate on the "test" but I felt since I got a 0.00 AHI and a smiley face it must all be good?

...but if you can't see what he posted then how would you know?

John is really young and much smarter than me so he should be able to get the computer part of sleepyhead and posting data.

Then he can teach me.

So, please criticize him (under my name) lol and make him be perfect.

If I want help, I need to make it easy for you.

Thanks Again.
I will reread the post on taping a few more times.

[Grace~~~]

I imbedded your picture into a post to make it easier to see but I was cut off like the last one so I guess I'm no better at this than you.

You'll just have to learn from the experts Colonel

I have faith in you.

[Pugsy]

Grace...is that your report?

If so the baseline leak is high and that's affecting the machine scoring of the leaks. If you are for sure that there weren't any leaks anywhere then we need to look at things a little differently.

Do you have a spare hose that you could try and see if it gives the same result just in case there is a hole in this one you are using now?

Edit: I see John did the report for you...let me see if I can figure out what he did to make it so big and unclickable. I think that he just copied the wrong url address code link.

[Grace~~~]

Also Pugsy ... I do hope that nasal pillows might work if this mask doesn't. I keep forgetting to respond to that valid point you have made.

My 'closet people' ... insurance DME folks? told me I would have to wait until 3 months to try anything else.

I got to try on 3 masks that first day for about 1 minute each. First time I EVER had a mask on as I never had a titration study. I picked from those three.

Then I asked for the dreamwear based on .... ????? .... research, marketing ... the fact that the tube came out of the top.

That was the big seller for me.

[Pugsy]

I am not familiar with posting.org way of doing things but there usually are multiple url addresses available to link to and I think that if there are other choices...try another.
It initially appears cut off on the right side but if I right click my mouse and choose "view image" I can see the entire image even if I can't link to it...so I can see what I need to see.

As to why you got the smiley face...because your leak never went above 24 L/min...not because there was zero leaks. Now I need to figure out if what your baseline is ....I need to go find my own personal DreamWear reports to see my baseline.
Since you like it and we don't know for sure about the mouth opening thing...I hate to have you switch right now.

Give me a little bit to try to come up with some thoughts (and find my own DreamWear reports as I have forgotten when it was I tried it but I used it for a month) and see what we can come up with.
Right now I have to feed the horses and get a few chores done outside. Will get back with you in a little bit.