Newbie: adjustment issues or problems to be addressed?

[robysue]

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.

Did hubby take to CPAP like a duck to water and start feeling better right away? Or has he just managed to forget all the start up problems he had?

Must be tough to be the second PAPer in a family if the first one is a "duck" and the second one has real problems.

The learning curve is huge for me and I recognise that.

Don't be shy about reminding hubby that you are dealing with a huge learning curve.

- 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.

Does hubby have rainout?

I know getting a heated hose has been suggested already. You might also want to get a hose cozy for the plain hose you're currently using or just wrap it in something and run the hose under the covers. As for wrapping it: Cutting holes in the toes of some old socks and running the hose through them with rubberbands to keep them in place may help you figure out if a hose cozy might be enough to deal with the rainout issues.

- 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.

The mask is not yet fitted correctly. It may be the wrong size or it may just not be adjusted properly. The straps should not need to be so tight that you get a bruise or pain.

A mask liner and/or mask pads might help. Or a change of mask.

- 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?

Maybe, maybe not. But you shouldn't have to grind your teeth either. That's not good for them. Try keeping your tongue firmly touching the top of your mouth right behind your top front teeth. If the tongue is up there, that's usually enough to keep air from getting into the mouth in the first place.

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).

In other post you say you're using an Icon, which I'm not very familiar with. Most machines update the LCD data once a day, but the question is when does the Icon do it? And I don't know the answer to that.

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.

In another post, you say you have a Icon Novo, but the specs (which have been posted by another user) say the Novo does not record efficacy data. You need to check the machine carefully to find out whether it is an Icon Novo, a Novo+, a Premo, or a Premo+

Does your machine's LCD tell you anything about the leak data?

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.

Everyone is different. Some of us have a much tougher time adjusting that others. And it's going to take however much time it's going to take. Try to bother the supplier more than your hubby---it's their job to help you become compliant, and don't start feeling bad that you're making them earn their pay. And also don't hesitate to call the sleep doc if things start to go from bad to worse.

[jaye8898]

Hi Penny,

Just wanted to wish you luck and tell you that Pugsy and others recommended the homemade hose cosy (sp?) to me until I can get the heated hose and it totally solved my rainout problem. I used flannel for the long hose and a cut up old sock for the short one. There are some really knowledgeable, kind, and generous people on here to help you and we are all fortunate to have them.

Best,
Jaye

[mgaggie]

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.

Thanks Pugsy.

I really hope that the machine isn't a Novo, and the OP isn't being fed a bunch of lies

[Penny2109]

The device itself says icon novo. The manual says icon +. The AHI number I'm getting is from the on screen menu. It does vary but what it doesn't tell me (even in the manual) is if that number is from the session before or from an average overall. Either way, from what I've read around different cpap forums including this one, an AHI of 20 is way too high and should ideally be under 5?

Thank you guys for helping with this. Hubby has been on cpap for many years and mainly worries about how he feels in the morning. I'd prefer to see the data, especially early on just to see if I'm on the right track and I don't think I'm there yet.

[Pugsy]

Either way, from what I've read around different cpap forums including this one, an AHI of 20 is way too high and should ideally be under 5?

I wonder if the new Icon Novo + offers AHI? I couldn't tell from the F & P product page on anything I looked at.

If it does and your AHI is indeed nearing 20 all the time....that is WAY to high and something is wrong.
Heck that's higher than a lot of untreated AHIs that people have before they are ever given a machine.

And yes, under 5 AHI is considered acceptable therapy.
If yours is pushing 20...no wonder you feel horrible.

Try the Infosmart software I sent you...it will work with either the Novo or Novo + and show you what the machine gathers.

[mgaggie]

I wonder if the new Icon Novo + offers AHI? I couldn't tell from the F & P product page on anything I looked at.

I ended up on the F&P new zealand website and found a brochure about the Icon+. It is basically the same as the old type as far as efficacy reporting. So its got me totally stumped. The only thing I can think of is they printed the wrong model code on the bottom? (Hard to believe I know).

Penny sorry to be a pain but there should be a code like this printed on the bottom, ICONNAN or ICONPBN or ICONAAN, if there is a HT at the end of any of those codes that means it has the heated tube.

Pugsy is correct, 20 AHI is way to high

[Bama Rambler]

I downloaded the manual and providing that she has the Icon+ Novo it has 2 modes. Simple and advanced mode. The advanced mode is where you see the advanced sleep data (Compliance hours, % hrs > 4, total nights, AHI, etc.). Once you get to the AHI in the advanced Sleep Data menu, you press the button once for the last 30 nights average AHI, press it again for the last 7 nights average AHI and press it a third time for last nights AHI. So you should see a total of 3 AHI numbers.

The advanced menu shows the following;

Total compliant hours.
Average compliant hours over the last 30 days.
Average compliant hours over the last 7 days.
Average compliant hours over the last 1 day.
Percentage of nights used greater than 4 hours over the last 30 nights.
Percentage of nights used greater than 4 hours over the last 7 nights.
The number of nights elapsed since therapy commenced.
Check Sum.
AHI for the last 30 nights.
AHI for the last 7 nights.
AHI for the last 1 night.
Leak for the last 30 nights.
Leak for the last 7nights.
Leak for the last 1 night.
90th percentile pressure for the last 30 nights.
90th percentile pressure for the last 7 nights.
90th percentile pressure for the last 1 night.
*SenseAwake for the last 30 nights.
*SenseAwake for the last 7 nights.
*SenseAwake for the last 1 night.

*Note; SenseAwake isn't available in the NOVO model.