suggestions please!

[new users wife]

Little background...My husband in 42, I would say overweight. Is being treated for low testosterone and has been on thyroid med's for many years. He finally has an appointment with an Endo doc in a few weeks to see if there is something else going on with his thyroid because he just keeps gaining weight and thyroid still not regulated on the top mg. Anyway, he took an at home sleep study due to the hours that he works...not suprising, he flunked -- I swear his snoring could wake the neighbors and we live in the country. 4 weeks ago he got a S9 series (I have looked everywhere and can not figure out the specific model that he has) with the cPAP and humidifier. They gave him nasal pillows to start with. First night in he complains the pillows hurt his nose wears the mask about an hour, I went and got some of the "nipple cream" people recommend went to sleep and recorded about 1.5 hrs second night took it off in his sleep. I told him if he didn't think he could adjust or even try then go back and get another mask. Didn't even try many nights after that. I tried to rig up a hose management system to get the hose off him thinking that may be why he is taking it off. His DME hasn't been very helpful and he actually just got a FFM two days ago because they didn't have any in stock. He got an Amara from Phillips and said it felt better cause there wasn't anything sticking in his nose. However, last night he was able to go to sleep rather quickly with it on but again took it off about 1.5 hours into it. I ordered him one of those pad a cheek things yesterday to try to make him more comfortable. We have a insurane through his work that is rather good so I am not sure that compliance is an issue with us but I am in need of any advice anyone can give me to help him. He says that if he wakes up and it's off he can't go back to sleep if he puts it back on. But from what I see he sits up and turns off the machine doesn't even try. He is on a 20 minute ramp and snores a little bit when he firsts goes to sleep. Do you think that the ramp time needs to be increased/decreased so he gets to deep sleep faster? I am still new to all this and trying to figure out how to help. Sorry for the long post.

[JamesW6175]

If his machine is a ResMed Elite S9 with a humidifier attached , you might try adjusting the input air temperature. When I
Got mine, the temperature was set at 70, but I changed it to 65 which was better. Do you have a full face mask, if might try to tighten the straps a little to see if that would help.

[lazer]

If he can stick it out with the nasal pillows and the use of the "lanisoh/nipple cream" to aid with the discomfort, his nose will toughen and become accustomed to the mask and the pain should cease. It's all a matter of sticking with it and taking one step at a time. Set goals ... say by 3rd or 4th night just insist on keeping the mask on and within a week or two, it should become natural and not cause pain.

The above is my experience.

[Tino2You]

The S9 model name is written around the power on/off switch. It will say AutoSet, Elite or Escape.

One thing your husband can try is to wear just the mask while watching tv before bed. That is another way to train your brain to accept the "alien" on your face. It will also begin the de-sensitizing process Lazer spoke of.

On a different tact, you could suggest to your husband to come on here and talk about his issues. With the groups help and encouragement he might be successful.

-tino

[Slartybartfast]

Need to know what kind of nasal pillows mask he was given. The nipple cream or K-Y works well to eliminate chafe. It's likely the straps are too tight. It's best to have them too loose rather than too tight. Tell him to loosen them until they're leaking, then tighten each strap just a little until the leaks stop. Regarding hose management, some folks use it, others just let the hose lie on or under the covers. I prefer the latter.

Regarding the rest, it's sort of like the joke about how many psychologists does it take to change a lightbulb. Just one, but it's got to WANT to change. In our little corner of the world attitude is everything. Your hubby's got to embrace the truth that he has a serious, ultimately life-threatening medical condition that increases his risk of stroke, heart attack, diabetes and Alzheimer's dementia because his sleep study showed he is choking on his own throat at night.

When I was diagnosed, a friend, who I didn't know was on CPAP, told me that after many years of leaving the CPAP on the shelf (it was an older, more primitive machine) his doc told him he was a stroke waiting to happen if he didn't get with the program. He told me he simply decided that he was going to make it work. He got a new machine (an S9 Autoset) and new mask and just did it. And he said it saved his life. So I approached it with the same attitude. And the result was life-changing. Snoring gone, wife and I can sleep together again, I wake refreshed, blood pressure has returned to normal, brain fog is gone and I actually look forward to sleeping each night and I don't even notice that I'm on it, or rather, that it's on me.

[newbie wife]

I wasn't sure about the temp, his is set at 75 I think and I wasn't sure if it needed to go up or down so thank you will try that. As far as the nasal pillows I couldn't get him to tough it out, he got himself convinced he couldn't wear them and the cream didn't help according to him. I actually gave up trying to even "help" with those because he got mad and told me I was treating him like a child.....can anyone say denial? lol. I know it's not easy and he isn't happy about it but it's is health I am worried about. According to his report he stopped breathing over 50 times in 5 hours and out of 5100 breaths he had 3300 snoring episodes, that can not be good for anyone.

[xenablue]

Getting rid of the ramp is one of the first things I did to make CPAP therapy more comfortable for ME. This might be something for him to try, as well as messing with the humidity settings. I also find a saline nasal spray can make nasal pillows more comfortable for the whole night.

Also - I watch TV for about 20mins before going to sleep, all the while wearing my mask, tweaking it until it's almost like I can't tell it's there.

I would perservere with the nasal pillows - of course it takes a little time for your nostrils to toughen up a bit, but they also should be quite loose - snug but comfortable, not rammed up his nose.

XPAP takes time to adjust to for the majority of people, but the important thing is not to allow yourself to sleep without the mask - the more your hubby does this, the harder it will be for him to 'train his brain' to believe the mask is 'good' for him.

Many times in the beginning, I would rip the mask off in frustration after a few minutes or hours. I'd turn off the machine, get out of bed and calm down for a few minutes, then re-fit the mask taking my time to get it feeling comfortable. Then go back to bed and sleep - which got easier each time.

Cheers,
xena

[Pugsy]

Normally the model name is right up by the on/off knob of the blower unit. What words do you see?
If he snores a bit when he drops off to sleep and ramp is still on then the lower pressure of ramp is allowing some snores or flow reductions to occur. Shortening ramp time or increasing ramp pressure would help eliminate the snores but 20 minutes isn't very long and probably not a critical issue at the moment. Finding out why the wake up after 1 1/2 and taking the mask off is more critical at the moment. Hopefully he has a full data machine and software can be used to try to figure out if there is something going on with the therapy which might need a bit of work to possibly help.

SleepyHead will work with the S9 machines. I have links for it in my signature line.
ResScan will also work an you can find a link for it in Uncle_Bob's signature line.

Models available.
Escape...no data beyond hours of use
Escape Auto...limited data...hours of use, AHI and pressure..nothing else
Elite....full data...hours of use, AHI, AHI breakdown into event categories, leak, flow, and much more
Autoset...full data same as Elite
VPAP S and VPAP Auto...full data bilevel pressure machines...with data same as the Elite and more
VPAP Adapt...full data and more...high end specialty machine.

How to get to the clinical setup menu explained here
http://www.apneaboard.com/resmed-s9-cpap-setup

If the nasal pillow mask hurts....he has it too tight or wrong size nasal pillows or both.

[newbie wife]

Do you mean to turn the ramp time completely down? I wondered about that, but wasn't sure if I needed to do that or he needed to get into a deeper sleep before the pressure got higher. He is quite stubborn and is still at the stage of getting frustrated and when that happens he is done for the night. Glad it's still just the night at this point because when he got frustrated with the pillows it was a week before he went to get a FFM.

He must have the auto S9 because I don't remember seeing Elite or Escape on the machine by the on/off switch, not home so I can't look right now. I believe there is something in the corner under the on/off button that starts with an E maybe. Sorry if that sounds stupid!

[newbie wife]

Oh, the thing that starts with an E only has 3 letters so it's no Elite or Escape I am sure of.

[Pugsy]

Starts with letter E and 3 letters...EPR that is their standard term for Exhale Pressure Relief. All their machine seem to have it except maybe a very base model Escape.

[newbie wife]

EPR....that's it. I'm not home so I can't go look right now but I think he must have a basic model because when I look to see how long he used it the only thing it shows me is the hours used, I don't see any other data on it.

[Pugsy]

it shows me is the hours used, I don't see any other data on it.

Not necessarily a base model. All the S9 machines come with the default Sleep Quality report set to "Usage" and if turned to "On" in the clinical menu setup area.
When set to "usage" it only reports hours of use...when set to "on" it reports additional data (if the machine collects it) such as AHI and leak.
The link I gave you above explains how to get to the clinical menu area where you can turn Sleep Quality to the On position.

[newbie wife]

Okay, thank you so much...will look into that. Any and all help is appreciated!

[newbie wife]

After looking at this I believe he has an autostart. Still not home but I do know there is no Elite or Escape at the top by the on/off button. Will look into changing the settings so I can see his info on sleep beyond just hours used. Thank you so much.