Question from the back of the class

[Grace~~~]

Hello wonderful CPAPtalkers~~~

Thank you all again for the amazing information that is being shared. I simply cannot imagine how ridiculous my "treatment" would all seem without you. It makes me feel VERY angry with Blue Cross / Blue Shield who I suspect is behind the terrible 'service?' / 'care' / 'treatment' that is associated with this cpap. I SERIOUSLY hope the knuckleheads who I met in a backroom closet did not get more than a $5.00 tip for handing me this machine.

~~~anyway~~~

Anger issues help no one and I need to limp my way to taking control of my treatment. I am just very slow.
...but here it goes ...

I am so pleased that I got a second mask ten days ago. The dreamwear mask. I am at least able to sleep with it somewhat and working toward getting "real data".

I initially reset my minimum pressures after two days (or about an hour total) of suffocating from 4 to 8. So I have been at 8-15. I turned off ramp, decided on no humidity, and a (????damn what is that word????) an "eap? maybe?" of three. (exhale decrease setting)

From what little I understand of my stats, I notice that one score reading that tells my "95% of the time" pressure seems to be around 11-12. I am tempted to inch my way up to 9 based on that stat.

I feel nervous about increasing the pressures again. It still seems wrong somehow to take control? I don't know why? Clearly I recognize that I have NO help available to me. I actually have WORSE than no help. I have "pretend help" that I suspect is an answering service that no doubt also doubles and answers phones for pizza delivery. Such is the value of any information.

(I know ... I know I have issues ... I said before that this whole "compliance" aspect and being "locked out" makes me feel like a child.) I will definitely increase to 9. This post has convinced myself.

The little voice in the back of my head says "increase to 11" ... but I could never do that all at once. I am just too leery still ... and that fear is definitely slowing me down. However, each day ... THANKS TO YOU GUYS ... I feel just a little better and a little more informed. (cue Foo Fighters 'The Pretender')


I would like to post some sleepyhead to see what y'all think, but my results are all over the place. There is so much inconsistency you'll probably think I am just hiring people to wear my mask for me.

I do still wear it at times when awake. But now I really DO sleep with it.

I even forgot my strap the this weekend when I changed houses and actually held the mask to my face with my fingers. I woke up and was still holding it and was very proud of myself. lol

My AHI's are averaged a little over 5. I have never had any low good scores. My mask leaks are awful.

I am afraid that I am going to find out that this dreamwear mask won't work for me because it's too leaky and then I will have to go back to the torture mask.

Actually? Even more than a month in to this I really know nothing. Except how to clean my mask and put it together and how to find this site on the internet. I'm probably not really worthy of your help at this point.

I am going to beg my cousin to post some sleepy head for me here, but I suspect my data is garbage.

[Pugsy]

Just how much leak are we talking about? Is the leaking causing you to wake up?
Look on SH report for the statistic that says how much time was spent over the red line...what does it say?

[Grace~~~]

Just how much leak are we talking about? Is the leaking causing you to wake up?
Look on SH report for the statistic that says how much time was spent over the red line...what does it say?

70.59 for the last week and 68 last night?

(44 for the last month and year which includes the time on the nasal mask)

I don't think the leak is causing me to wake up.
I am not particularly annoyed at the noise and blowing in my face.

I do notice that the mask is MUCH quieter when I lay on my back and gets noisy on my side no matter how much I fiddle with it.

What does irritate me is the hose.

It is so rigid and I haven't figured out a good way to hang it.
Also I sleep in three different house on rotation and also travel on unexpected notice.
(thought the travel hasn't happened since I have had the cpap)

So getting a good system for me has additional challenges.

[avi123]

may be the hose is pulling on your mask and causing it to leak. Get this Hose Holder:


https://www.amazon.com/Eliminate-Tangle ... e+for+cpap

[Pugsy]

70.59 for the last week and 68 last night?

Are you doing a lot of mouth breathing?

When you look at the leak graph...even while awake...is the leak line high or low?
If it is high while awake then the fit is way off.
If it is nice and low leak while awake and then goes crazy when you are actually asleep then it's either mask movement or mouth breathing.

Could you do an experiment with using the mask and machine for about 15 minutes ...don't try to sleep...just try to make sure there is no leak anywhere...and then see what the leak line on the graph looks like using SleepyHead? Let's make sure there's not a problem in the circuit somewhere.
That amount of leak exceeds what even mouth breathing might bring about so I am wondering about leak in the circuit or mask fit.

I know that actual sleep time is short on your reports but I would really like to see those graphs to see if you have any time with a flat leak line which you should be able to get at least while awake.

[Grace~~~]

1 - The 95% is about 'up to', not all the time, in other words 95% of the time you were at or below those figures.



GOOD TO KNOW! Thanks, Julie. I thought is was an average. Like 95% of the time I am around 12%

2 - What is wrong with taking control - you only get one life and no one else will care as much for it as you. Are you really happy with everyone else having control over it? I can't fathom a man ever saying it didn't feel right to have control (of his own life) and most women today feel the same. Your doctor doesn't care to the extent you do, not even close, so it's up to you to call the shots. You can only be intimidated (and invariably lose by it) if you allow yourself to be. Why are you 'at the back of the class'? Because you put yourself there (or allowed someone else to put you there). You're an adult and don't need anyone else's permission to do anything!

You're 100% right, of course. It's just that there is this illusion of professionals and these hoops I have found myself in with regard to insurance and health care. It's all so disingenuous. I never had been sick or a patient until just a few years ago and so I just can't wrap my mind around what is real yet. However, the general common sense and self sufficiency exhibited here by this group feels REALLY good. Kinda gives me hope that we won't all be swallowed up by the molasses of the lowest common denominator. Though they'll probably ban free speech on the internet soon.

[Grace~~~]

Wow ... I looked at that leak rate chart and it really is all over the place. I will do the Pugsy 15 minute experiment.

I know I have seen PaleRider post a link of how y'all like the sleepyhead reports posted.

I think my cousin will have time to help me today with this as I really would like to get your input by showing you some of my 'whack' results.

I have NO idea if I am a mouth breather?
I'm pretty clueless.

I am sure that must be irritating for you guys.
I'm sorry. I AM trying to catch up.

[Grace~~~]

may be the hose is pulling on your mask and causing it to leak. Get this Hose Holder:


https://www.amazon.com/Eliminate-Tangle ... e+for+cpap

Yea ... I do need something like that AVI.

I have multiple beds.
One is an old school water bed.

So I'll need a couple versions of these.

I have identified that my hose is an issue.
...but it appears I have several issues.

[Janknitz]

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.

[Grace~~~]

[Grace~~~]

[avi123]

Grace, you don't use imgur.com for posting those charts.

[Pugsy]

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.

Could you please check the mask selection feature on your machine and make sure it is 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.

[Grace~~~]

Grace, you don't use imgur.com for posting those charts.

I see the first one is messed up, but is the second one OK?

My charts all look completely different from one another.
There are NO patterns emerging as of yet.

...except the pattern of high leaks.

Also, I don't think the clock has been set correctly?

We chose eastern time twice but it still never represents the real time.

[Pugsy]

Your images are fine.....I saw what I needed to see.

Change the clock on your machine...did you know about the clock on the machine? Should be explained in the same manual that explains how to change the pressures.

Don't try to change the clock until it is past 12 Noon ON THE CLOCK (whatever it says) and make sure you haven't used the machine between the time you want to change it and the clock on the machine.
The machine gets its panties in a wad if you try to change the clock and there's data on that session.

So find the clock on the machine and see what it says first and wait until it is past 12 noon on the machine clock before changing it..