My stubborn boyfriend just hates his cpap mask!

[sadpanda]

Hey everyone. My boyfriend found out he has sleep apnea, I'm pretty sure central sleep apnea, and he recently got a cpap machine. It's only been about a week but he absolutely can't stand it.

Okay so before, whenever we would sleep together, we would cuddle and chat a little but when he was ready to go to sleep he would turn away from me and close his eyes. I was offended at first but he had explained that he hates it when things touch him while he's asleep. Blankets and pillows are okay, but anything extra like stuffed animals, uncomfortable fabrics, a direct draft, and even his own loving girlfriend got too frustrating to stand.

Anyway, he got his cpap machine and has already tried two different types of masks so far and he hates it. One of them was wrapped around his face and another only covered his nose/mouth, but pinched his ears. I tried comforting him about it and telling him to be patient but he gets so angry with it. He wakes up (or just lays there awake already) so angry that he rips the mask off his face, screaming with rage. The mask is so uncomfortable to sleep with and I know he's running out of options here.

I've been reading so many articles about symptoms and treatments, and I'm frightened at what horrible things sleep apnea can lead to. I'm sitting here trying not to cry because I'm so scared for him. He's only 20 and he's had this problem his whole life. His doctor told him it's because his airways are too tiny, and he's a really big guy, 6'3'' and maybe 250lbs. We go to the gym regularly but the weight's not coming off, although muscle is adding on. (He isn't like morbidly obese; he's really strong and muscular with broad shoulder and chest. He has a strange body.) I wish more than anything that there was something I could do to help him. I only just stumbled across this forum. I'm just really scared because I don't want him to die early or have a stroke or anything horrible at all. He's my best friend and I love him so much, I don't know what I would do if I lost him.... :'( Please help us, I'm so afraid....

[lorraineg57]

Has he tried nasal pillows? I find them very non-restrictive. Adjusted correctly and sized right, they're barely noticeable. I tried a nasal mask (the one that just covers nose and mouth) and couldn't get used to it.

Your boyfriend is very lucky to have such a supportive, caring girlfriend. I hope he appreciates you.

[chunkyfrog]

The acceptance issue has been discussed here frequently.
The following thread is a good one to read, especially the posts by Idamtnboy.
He has a good grasp on the emotions experienced by many newly-diagnosed apnea sufferers.
viewtopic/t61785/Especially-for-newly-d ... hange.html

[Julie]

Hi, you're a wonderful girlfriend, but right now need to relax. Your boyfriend won't die tonight (how long did he go without help?), and there's a lot of help here. It sounds like he hasn't had a lot of guidance going in regarding the right mask in the right size, and possibly even the wrong machine if in fact he really does have central apnea (cpap machines are not much help, but very similar ones with slightly different names are). It's important that he learn what he can about all of this in general, and the lightbulb at the top of this page has lots of links to start with, plus people like Pugsy and many others have found answers to 'too tight' masks (he shouldn't have to overtighten it at all if it's fitted properly and overtightening can cause leaks that impact therapy), insomnia, claustrophobia, lots of issues. But do you mind if I say something? Maybe it's just your frustration showing, but it seems as if he's quite anxious in general ("screaming with rage", unable to tolerate anything touching him when asleep), I wonder if he's had any treatment in the past for his problems, never mind Cpap? If he can get help for some of that, it'll be a lot easier for him to accept and appreciate Cpap, but right now he's in fighting mode and that won't work.

Can you go to the control panel right under the main logo and click on it, then on Profile, and complete the blanks for exact make and model, #, etc. of his machine and mask (some info will be on the machine bottom possibly), so whenever you post, the info will show up under your name and we'll all know what he's dealing with... makes it easier to advise (but please use text, not icons).

[kaiasgram]

Hello Sadpanda, how wonderful your BF has you supporting him in this way. Is there any chance you could add specific information about his machine make/model and the name of his mask? It might help with getting some good suggestions that you could pass on to him. You mentioned that you think he has central sleep apnea, but your reference to his small airway sounds more like obstructive sleep apnea, or maybe he has mixed apnea (both central and obstructive)? If we know what kind of machine he has and what mask(s) he has tried, there are lots of helpful suggestions to be found here which you can start passing along to him. How receptive do you think he would be?

There are only a few people who don't hate their cpap mask one week into treatment! So if we knew more about what exactly he hates about it (too tight, too much leaking...?) we might, collectively, be able to help him, through you if that's the best way to reach him.

I'm thinking that you could knock his socks off with how much you know about his condition and treatment from studying this forum, and perhaps he might really listen to you!

Try not to be scared, your BF is young and it's too early to conclude that he won't be able to succeed with his treatment. This is not an easy diagnosis to accept when you're older, and I think it's even more difficult when you're young because you're likely facing a lifetime of having to "mask up" every night to go to bed. He may need some time to deal with all this, and though it's ultimately his decision about how committed he will be to treatment, your support could make a big difference in his adjustment. So ask away and folks here will do their best to arm you with information and ideas.

EDIT: P.S., he is most definitely not out of options.

[DebboL]

I couldn't stand the over the head straps, or the ones that went around my ears. I have changed to a Pilairo nasal pillow mask that only goes around the back of my head. The anger is normal because it is an adjustment. He needs to come talk to the newbies and the seasoned people on this site as well as allowing you to be the supportive person you are for him.

Deb

[Guest]

Hey thanks so much for the advice and input. This is a very stressful time for us, and I appreciate all the help we can get. I'm not with him right now but I will post the information about his machine and mask once I get it. I told him about the nasal pillows though, so hopefully that can be the next thing he tries. Again, thank you so much.

I'm telling him things as I find out about them, but it's apparent that there's a lot he isn't being told by his doctors. However, it is still early in this process!

[chunkyfrog]

In case you are curious about any of the equipment we use, just click on the text or picture at the bottom of any of our posts.
A new window will pop up with more information.

[lorraineg57]

Hey thanks so much for the advice and input. This is a very stressful time for us, and I appreciate all the help we can get. I'm not with him right now but I will post the information about his machine and mask once I get it. I told him about the nasal pillows though, so hopefully that can be the next thing he tries. Again, thank you so much.

I'm telling him things as I find out about them, but it's apparent that there's a lot he isn't being told by his doctors. However, it is still early in this process!

If he gets the pillows, make sure you check here or elsewhere for fitting tips. I started out with a larger size and I could always feel them. Dropping down a size made a huge difference, both in leaks and comfort. Also keeping the straps looser allows them to almost float under the nose. I honestly don't even notice them once I get settled in.

Good Luck! (and don't stress, your sweetie will be fine. You need to be a soft place for him to land right now, not equally freaked out. )

[archangle]

Ask here about any problems you have. A lot of us have figured out how to work around the same problems. Or we may be able to tell you that some problems are just things you have to put up with.