Winning the sleep apnea battle when other issues are involved: How do you do it?

Good evening, everyone! I’m coming to you with a somewhat unusual situation you might not have encountered before. I hope you can help me.

Like so many of you, I have challenges with masks, CPAP settings for humidifier and the ramp, proper positioning of the machine in order to get the best access to it while in bed, etc. Unlike many here, though, I struggle with other issues that could be getting in the way of my learning all I need to learn about my sleep apnea so I can get the maximum benefit from CPAP therapy sooner rather than later. For starters, I’m legally blind. Not always being able to see what I’m doing, or not being able to see my own facial features well enough to determine if the full-face mask I was given is the one I really should be using in the first place is really frustrating. When I received my CPAP equipment, a respiratory therapist made a home visit so she could show me how to use it. While helpful, I’m still struggling with mask adjustment. Maybe I just haven’t found an adequate seal and strap combination that will result in comfort and minimal leaks.

I also have asthma, so getting comfortable with pre-existing breathing issues while dealing with constant air flow has been an interesting experience. Instead of staying asleep when pressure begins to rise, I wake up because it’s hard to exhale. What do you use to deal with this? Does some form of relaxation like meditation work? What about short-term medication until I get the hang of it so I can gradually get off it and continue sleeping without incident?

I see my pulmonary specialist in about a month, so I’m sure I’ll be able to talk to him about these issues then. I just thought I’d put my concerns out here in case there’s anybody who can help me get on track and stay that way until appointment day rolls around.

Thanks in advance for any assistance you can offer.

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Hi NightOwl, One suggestion would be for you to join other sites were you can get more advice, below is a link to one called Apneaboard, I know a lady on there that is also blind and maybe able to give you some support and advice.
She is the person that does the introductions so will pretty much see your post as soon as you join.

Are there any specific questions you have about the masks, setting etc?

@NightOwl Hi there. I would speak to your doctor about the possibility of putting you on a BiLevel machine, commonly called “BiPAP” - a proprietary name of the manufacturer. Most companies make these bilevel machines.

A CPAP machine has the same pressure setting when you inhale and when you exhale. What a bilevel accomplishes is that you will have one pressure setting for inhalation, and another set for exhalation. This should solve the issue of difficulty exhaling.

Good luck and let us hear back from you!

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Hi, MotherT! Thanks for your reply. A friend of mine who is not part of this support group told me the same thing you did about BiPAP machines. Her nephew had the same problem I seem to have now and then with the CPAP and he doesn’t have any of the other breathing issues I do. He switched to the BiPAP and is doing much better.

Tez, thank you! I didn’t know the chat board you gave the link for existed. I’ll definitely check it out.

In the meantime, yes, I do have questions about masks: 1) How do I know when it’s in the proper position on my face so it won’t shift or leak while sleeping; and 2) Is there a foolproof technique I can learn so that consistently putting a mask on correctly becomes second nature? If I’m super tired when I go to sleep, I don’t want to have to think about whether something I’m doing with the mask is right or not. I just want to do it and get the rest I know I need without having to think too much about it.

NightOwl, there is nothing that is fool proof with CPAP Masks, what Brand and model mask are you using? Full face masks are the hardest to get used to and manage leaks. There are few tips I suggest, first, have your hose coming from above your head either over a bed head or you can buy or make a product called a Hose Lift, this way the hose pulls the mask up instead of down and saves you getting tangled in the hose. Second, use Mask Liner especially if you are using a full face mask, you can buy them over the net or I make my own fairly cheaply, they also stop the silicone of the mask touching your face. Hope this helps, unfortunately a lot of this is trail and error, have you had someone measure and fit your mask properly?

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Hi, Tez! Thanks for the feedback.

I am using a ResMed CPAP machine with a FitAir 10 full-face mask. I was measured and fitted by a respiratory therapist who visited my home for the purpose of delivering the sleep apnea therapy equipment and teaching me how to use it. Ever since that day, I’ve tried to “remember” what it felt like to have the mask in the appropriate spot on my face and where the velcro strips were attached on the headgear. I had heard about mask shifting and leaks prior to her arrival, but nothing prepared me for the truth in what people had to say about that until I actually began working with the machine and all of its movable parts. Hence, the question about foolproof methods of getting the mask on that would allow me to do what I have to do correctly, every time, without having to think about it.

It’s funny you should bring up hose placement in your post. Initially, I placed the machine right next to my side of my husband’s and my bed so I could reach the start button without too much effort. However, this meant the longest part of the tubing flowed downward next to that side of the bed, thereby pulling it out of alignment. About ten days ago, I decided to see if putting the machine above me and letting the tubing dangle down closer to my head would change that. To a certain degree, it has, but I’m still getting mask leaks and discomfort from shifting the mask undergoes either when I’m asleep or when I’m trying to get comfortable.

I checked out some of the self-help areas on the ResMed site last night and discovered there are now masks available to better accommodate women. Since the mask I was given with the CPAP machine I am using is the only mask the RT had with her when she made her home visit, I have nothing else to compare my mask to at the moment, but I think I may give ResMed a call within the next couple of days to see if I can exchange it. I do not know if that would require another home visit from a RT, but that’s easy enough to find out.

I’m sure I’ll have more to say about this before long. Stay tuned!