Newbie: adjustment issues or problems to be addressed?

[Penny2109]

Hi folks! I'm personally new to the cpap world, my husband has used one for years. It's been about two weeks for me and I've had a couple 'good' nights and a couple nights where I flung the mask off in frustration and didn't put it back on. I am trying but I can feel my husband getting frustrated with me because I can't always manage to wear it all night and there seems to be issues and I'm not feeling better already.

The learning curve is huge for me and I recognise that. My titration study I used a nasal pillow and the tech said I did great so I began with a nasal pillow (fisher &paykel icon nano, opus 360) but it was causing horrible nose pain, bleeding and the headgear was popping off my head. I had them switch it to flex fit 406.

I believe that I am beginning to sleep with it on. Last night I slept for about 6 hours and had the mask on all night. I guess the mask is OK but it just hurts my forehead.
Maybe it would be easier to list issues - I hope you guys can provide insight to what's just adjustment issues and what I might need to talk to the supplier about.
- humidity off leaves me congested and with a nosebleed. Humidity on 2 or higher feels like I'm drowning and humidity 1 just feels like my nose is running all night. I do get rainout - I put the machine on the floor and the tube in bed with me as per advice I've read on here and it continued even on humidity 1. Heat in the house is set to 68 ATM and any higher means he can't sleep.
- I have had to tighten the mask so that it doesn't blow in my eyes but I can tell my forehead is going to bruise and its actually a little painful. The bottom straps aren't bad but it leaks everywhere.
- my lips keep blowing open? Like the air is collecting above y tongue and just puffs out of my mouth. I'm ending up grinding my teeth as I'm trying to fall asleep to keep it closed. Does this mean I need a ffm?

The other thing I'm wondering about is if the device is even recording correctly. Like I say, I had it on for 6 hours last night and didn't take it off. Device says I wore the mask for 3.1 hours last night (averaging 4.5 since I got it which I know isn't high enough). The other thing that's worrying me is the average AHI of 19 even after tightening it to where there's no mask leaks that I can tell as I get to sleep.

This turned out really long. Thank you for reading and any advice - I've already swapped my mask out once and I just feel like I'm bothering hubby and the supplier when I should just be learning to adjust already.

[Pugsy]

When you have time please register here at the forum and add your equipment to your profile like I have mine.
This helps us help you when we can see at a glance what you are using.

The AHI...what pressure(s) are you using? High AHI without large leaks compromising therapy usually means suboptimal pressure setting.

Any nasal pillow mask that causes "horrible pain and bleeding and pops off all night" simply is not fitted correctly and/or wrong size of nasal pillows are being used.

In fact any mask that causes pain...something is wrong either with the fit or the mask is just not right for the person.

Rain out/condensation...if it is just in the hose...fix yourself a hose cozy until you can buy one and see if that helps.
Some old socks with the toes cut out slid over the hose and secured with tape...or a small piece of lightweight fleece wrapped around the hose secured with tape...anything to help insulate the hose so that the air in the hose doesn't cool to the point of releasing the moisture. It's more important that the nose be happy with the moisture that needs to be delivered.
Rain out is annoying...but a mad nasal mucosa from being dried out is worse as it affects you all day long.

The Opus360...I had same issues with the headgear...popped off way to easily.
The Swift FX Nano....more stable but the minimalistic nature of the headgear means for some people it would slide around...especially the back strap. There are ways to limit that sliding though if you want to revisit the Nano.

my lips keep blowing open? Like the air is collecting above y tongue and just puffs out of my mouth. I'm ending up grinding my teeth as I'm trying to fall asleep to keep it closed. Does this mean I need a ffm?

Search the forum for "chipmunk cheeks"...that's what we call what's happening here. The tongue is allowing air to enter the mouth and not closing the door to the airway as it should. It's common and most of the time the tongue can learn to block the door with some practice. It doesn't necessarily mean you are going to need a full face mask though...it all depends on how much of your therapy pressure is leaking out your mouth...like is it for 10 minutes 2 or 3 times a night or is it for half the night. Obviously half the night is not acceptable.

The usage hours question...not familiar with your machine but if it is like another brand..it may not update on the machine's LCD screen until after a certain time frame has passed.

Exactly which model Icon do you have and do you have any software so you can see exactly what is going on all night instead of just the limited data on the LCD screen.

[kteague]

Hello and welcome. I'll others deal with possible adjustments to your specific mask. In general, there are products that help with comfort, like PadACheek products, but if you are having more than pressure on the forehead problems and think you'll be changing masks again, I'd hate to see you buy something for a mask you don't expect to continue to use. I am curious what you find out about your timing on your data. Could you be looking at numbers from a session rather than the whole night?

I'd just like to say that it seems to me you are giving this a valiant effort and have no need for apology either to your provider or your spouse (except for the perfunctory "sorry" when you wake hubby up). There's few things more miserable in this treatment than an ill fitting mask. Rather than feel like you are bothering the DME with changing masks, maybe look at it as they have failed to properly select the best mask for you. They work for you. They get paid. Get what you need with no hesitation or apology. (Although I'm guessing this is your personality and you're too much of a sweetheart to want to inconvenience anyone - and that's ok. The world certainly needs sweet people.) However, in this circumstance, the stakes are too high. You need what you need. If suggestions here don't resolve your mask issues, do exchange it being mindful there is a window of time you're working in - usually 30 days.

Good luck going forward. Yes, there is adjusting to be worked though. You are being realistic about that and wise to ask for tips in determining the difference. I'm thinking you're in a good place to soon be successful and getting better sleep.

[Penny2109]

I'm sorry - icon novo. I remembered nano for some reason. The pressure is set to 9 but my tech was a little slow on the uptake so it is possible I need a higher pressure. One of my issues with the opus was that I felt like I wasn't getting any air. I don't use the ramp unless its during the day watching TV - at night ramp is suffocating to me.

I'm trying to get onto the software today - one of the nice things about this device is the data is on a USB. However someone got my DOB wrong and I can't log in. The supplier will ring me up when her computer comes back up with the DOB they have on file for me. Hopefully I can obtain some kind of leak rate and maybe that will shed some light on the high AHI.

I'm definitely learning lots more about all this stuff since reading these forums online. I feel like you guys have already helped way more than the medical people I've seen so far.

My compliance rating for the entire time is 40%, the last 7days is 57%. You were right about the time delay. It just popped up as 7.2 hours and AHI upped to 20. I hope I can get onto the software soon. Thank you for your reply, Pugsy. I'm definitely going to try the hose insulation trick tonight.

Kteague - I definitely am a bit of a people pleaser. I should work on that a little . Thanks for your reply. I'm definitely going to chat to the supplier again when Iget her back on the phone but last time she just kept repeating it will take time to adjust.

[Pugsy]

The link in the equipment to the Novo is broken so you might just add it to the comments section.
https://www.cpap.com/productpage/fisher ... chine.html

Ask your machine supplier about getting the optional heated hose that F& P says you can use with this model machine.
It will pretty much eliminate any rain out issues and is normally covered by insurance.

I may be able to help you with the software...can't promise with certainty but what I know about might work with your machine...you are going to be on your own using it though...I don't have any experience using it.
Check your private message box in just a few minutes (it's up by the User control Panel..upper left).

Oh...large leak territory for your machine is going to be 60 L/min....keep that in mind if you can get the software up and running.

so you didn't try the Swift FX Nano mask? Or did you?
Just trying to determine exactly what you have tried.

[Penny2109]

So far I have tried opus 360 nasal pillow (which I liked the idea of but it didn't work in practice for me) and I currently am using the flexifit 406 nasal mask. It seems to be working better so far (last night was the first night ive managed to sleep more than 3 hours with it on but it is rather tight).

When I said nano I think I was confusing my icon novo device with the nano I've seen written around the net a lot, I'm sorry for the confusion. Thank you for the suggestion for a heated hose - if its covered/mostly covered that should be doable.

[Pugsy]

Okay...so the only nasal pillow mask you have tried is the Opus 360 which is known to have headgear stability issues...and I bet the nose pain was from either too tight or wrong size nasal pillows.

Your current mask has the PITA forehead support to deal with...IMHO there are much better alternatives.

This one in particular...plus I think you might want to revisit the nasal pillow if you had a properly fitting headgear and the Swift FX nasal pillow would fit on this headgear....I have a spare nasal pillow for the Swift FX you could just have if money is tight. So like 2 masks in one....one with cushion that covers the nose and one with nasal pillows all on same headgear. It will work because I have done it.
https://www.cpap.com/productpage/resmed ... dgear.html

If your DME is pushing Icons...and the current nasal mask you are using...they may not have the ResMed Swift Nano...Resmed masks costs more than F & P masks in general...that's why the DME is using F & P stuff...they make more money.

Check with your DME to see if they have the Swift FX Nano cushion mask or would get it for you to try without expense to you...let me know either way....if money is tight...maybe I can fix up something from donated supplies.

The chipmunk cheek thing...don't worry about it at the moment unless your reports are showing excessive leak times.
Let's get you comfortable with a mask first and I sense from your tone that full face mask isn't high on your list of things you want to do...so let's try other things before going down that road. Don't worry...wasn't high on my list either ..actually it was on my "I don't ever want" list

Not all mouth leaking or breathing requires a full face mask..it all depends on how much and for how long.

[Julie]

Hi - if it's not yet clear - you don't have to use the humidifier at all, never mind even at a low setting. It's strictly a comfort thing for those who feel the need, but many of us don't use it, or only do so e.g. in Jan/Feb. if indoor dryness from central heat is particularly high... and if you live close to water, or ambient hum. is generally good, you may never need it.

[Janknitz]

I believe that the Icon Novo has compliance data only.

It would help to have EFFICACY data to see what's going on and help you adjust, but your machine is what we refer to here as a "brick". The only thing the data will tell is hours of use.

Please take a look at my blog post "Help, I'm Stuck with a Brick". http://maskarrayed.wordpress.com/2011/0 ... h-a-brick/ I hope it helps.

[Pugsy]

I believe that the Icon Novo has compliance data only.

It would help to have EFFICACY data to see what's going on and help you adjust, but your machine is what we refer to here as a "brick". The only thing the data will tell is hours of use.

According to product page at cpap.com it shows AHI as being offered...I read it before I posted first and in the first part of description it says "entry level" which usually means a basic brick
and then I read this...

AHI upped to 20.

The other thing that's worrying me is the average AHI of 19

leads me to believe she is getting the AHI from somewhere and it is varying...so I assumed off the LCD display.
I also thought the Novo was a brick but then I am not all that familiar with F & P products
F&P product page is next to useless...and I am still unsure if she has the new "+" Icon.

I did pass along the software information so we should know for sure shortly.

But I just now found this which confirms no efficacy reporting...and if so where did the AHI of 19 or 20 come from?
So Penny....if you have a machine that only offers hours of use...where did you get the 19 or 20 AHI from?
Might want to make sure exactly what you have and if it is a brick...take it back and tell them it isn't what you want.

[mgaggie]

The Icon Novo is hours only. I have the Novo and trust me there is nothing but hours of usage on it.
If the Op is talking about AHI they must have the premo or auto Icon, it should say on the bottom of the unit.

As for the humidity, set it to zero but you must leave the tank in there (leave it empty) otherwise the unit will not work.

[Penny2109]

Sorry I'm at work right now and wasn't able to reply sooner.

On the sleep data menu I have a few things I am able to look at...

Total compliant hours
Average compliant hours per night/session 30/7/1
Average compliancy rating % per night 30/7/1
AHI
Sim (supplier told me this number helps her figure if the other numbers are correct)
Pressure (unchangeable by me)

I'm not able to check the manual from here and she didn't explain to me other options, she was just kind of like here you go try this out. Feel fine? Great, sleep well! And that was really it.

Thank you guys for still replying. I'm learning a lot- especially that I might have been stuck with something I don't want to be stuck with

[Pugsy]

AHI...wonder where she is getting that number???
You are calling and giving codes and she (I assume at DME office) is telling you what the codes mean?

If this is the Icon Novo without the + in the model name...SleepyHead might work with it to see if it shows an AHI.

The software I sent you...would show for sure.
Also check your machine model to make sure what it says and that includes the bottom of the machine.

[mgaggie]

Apologies to Pugsy, I didn't read your post properly before posting previously.

[Pugsy]

Apologies to Pugsy, I didn't read your post properly before posting previously.

No need...no offense taken. I only took it as affirmation that the Novo was a brick.

Regarding the mysterious AHI...well....it might be a situation like recently where someone else using a brick was told "no, no your leaks are just fine..and your AHI is just fine" and they have a brick for sure with the Respironics model 260 which made it a big fat lie.