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need encouragement
I have been trying new masks. The one I'm currently working with is the Mirage Vista, but I've been having trouble stopping leakage at the top of the mask, near my eyes, without tightening the mask so much as to become somewhat uncomfortable.
I might just need to practice in daylight hours a bit more until I can tweak it; the mask is otherwise fairly comfortable. But this is the fourth mask I've tried that is in some way imperfect, and I'm getting frustrated. Maybe my demands for a mask are just too high. I'm overwhelmed by the mask choices available to me; so with a health-equipment-supply specialist, am trying to go through them sensibly and methodically.
Yet I've become so frustrated that I haven't even given the Vista a shot for over a week. I've been sleeping maskless, and paying the price. I have yet to get a full night's sleep with any mask, ever. Some nights I wake up to find I took if off without realizing it; but just as often I recall having taken it off the next morning. I feel like giving up. I've been totally down on myself this whole morning, as though this is all somehow my fault. I'm unabashedly asking for reassurance that in time, I will beat this thing. How much longer will it take for me to conquer my apnea? People think I'm being melodramatic when I say, "I haven't gotten a good night's rest in 15 years."
Herculean thanks,
Ross
Views: 220
Replies to This Discussion
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Permalink Reply by Mike on
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Ross, it took me nearly 5 months to find a mask and machine combination that I could even barely tolerate. It took me about 2 years to find a combination of a mask, machine and accessories like chin strap and Oxygen Pillow that gave me 100% compliance. Now look at me. . . my AHI is consistently below 1, and I have hardly any leak at all. And I wear my mask every single night of my life, except when I'm sick and really stuffy and congested. So it took me a couple of years after I was diagnosed with Sleep Apnea to really get the hang of things.
So, from personal experience, I will tell you: stick with it. You will beat this thing. That said, it's not just sticking with "this thing" that will make the difference for you. It is sticking with an attitude of being open to trial and error that will pull you through. You will have setbacks and you will have victories. The key is that you're not resting on your laurels expecting other people to make this right for you. Because then nothing will happen. You have to commit to getting this right. Period. I believe you can and will.
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Permalink Reply by Ross Plotkin on
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I'm posting your response near my bed so I can refer to it every night, Mike. No, I'm not resting on any laurels; I'm aware this will take time and effort. Having a cheering section I can periodically turn to might make all the difference, though...
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You've got the cheering section here in SG, 24-7.
Ross Plotkin said:I'm posting your response near my bed so I can refer to it every night, Mike. No, I'm not resting on any laurels; I'm aware this will take time and effort. Having a cheering section I can periodically turn to might make all the difference, though...
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Permalink Reply by Mary Z on
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Ross, I've read that Polident denture cream, the same stuff some folks use to keep their mouth closed at night can help with leaks. I don't really know the details -anyone out there know? I imagine you would apply it to the part of the mask that's leaking and hopefully it will improve the seal. Another permanent solution is superglue. LOL. if you need to lose weight being unable to remove the mask would certainly help. Please don't actually try this! Mask problems, marks, sores, irritation and leaks are the achilles heel of CPAP. Our faces are all so different, It almost would be worth it to have a mask made specifically for you, but I imagine it would be prohibitively expensive and our face shape changes over time.
Good Luck,
Mary Z.
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I was just informed that the Polident denture cream idea may be a joke!
15 years without a good nights sleep doesn't sound overly dramatic. It's just a shame you've suffered so long.
Mary Z.
Mary Z said:Ross, I've read that Polident denture cream, the same stuff some folks use to keep their mouth closed at night can help with leaks. I don't really know the details -anyone out there know? I imagine you would apply it to the part of the mask that's leaking and hopefully it will improve the seal.
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Permalink Reply by Amy on
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Ross,
There are many masks because there are so many shape faces. I always tell my patients that a little leak is okay as long as it does not bother you. Remember these are several sizes fit most.
You talk abouth this mask have you tried something other then a nasal mask? Maybe pillows or full face mask might work better. You might also want to look at a special sleep pillow like the Contour one that will allow you to sleep on your side wihtout moving the mask. I have had it help some of my patients.
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Permalink Reply by RockRpsgt on
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the Swift FX is a great mask. If you have a chance you should try it. Do not give up. Once you conquer the mask you have conquered CPAP.
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Permalink Reply by BeeAsleep on
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Ross,
It is soooo hard in the beginning. You are tired, your are frustrated and it seems like an endless uphill battle. Most of us have gone through what you are experiencing, it is a life changing event. But as you know, being on a CPAP will save your life.
We are all here to give you support in one way or another. Rock is right about the mask. Getting a mask that works for you, your needs, your face shape, etc. will make a huge difference in your CPAP comfort level.
I have used 3 different masks and 2 machines, my husband has used 2 different masks and two machines and is still on a quest for his perfect mask. It takes being persistent and patient and asking your DME for what you need.
Hang in there!
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Permalink Reply by Jan on
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Hi-- I just wanted to add my voice of encouragement.
Stick with it-- and continue to seek advice and support on this forum. Collectively, the people here have been through about everything and are amazingly generous with their advice and support.
We're all pulling for you, Ross!
Jan
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Permalink Reply by Andy on
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Hey Ross,
Sorry to hear of your mask problems.
Everyone is different, of course, and the right combination of mask, adjustment, sleep positions-- and mostly attitude-- are sometimes hard to find.
I started CPAP about 4 months ago, using a nasal mask. I found it pretty comfortable, but was getting marks on my face. Then I tried a nasal pillows, and didn't like it at first, but stuck with it. Now it's my favorite! I was able to get decent adjustment, not too tight to be uncomfortable, and an acceptable level of leaks.
In the beginning I'd wake up with the mask off, (more than once it was neatly placed on my bedside table) but had no memory of removing it.
But, if you keep at it, you'll find that you get used to it all, and will sleep much better.
Before CPAP I was waking up every morning totally exhausted. I was also waking up with a powerful "adrenaline rush" but couldn't figure out why.
Now I'm waking up rested and refreshed, and able to go through 8-9 hours of sleep, and 15 or 16 hours of accomplishing things without falling asleep!
CPAP is the most effective way to conquer apnea. Keep at it. You'll soon get the hang of it, and wonder why you waited so long to start!
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Permalink Reply by Samuel Kaplan on
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This may sound crazy, but I do the opposite of what I think will work. If the mask leaks, I loosen it a bit. If there is a sudden leak from the right, I adjust it to the left.
I've been using CPAP for 15 years and I hate everytime I put it on. But it works, so I do it.
Good luck.
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That is an interesting philosophy Samuel.
Samuel Kaplan said:This may sound crazy, but I do the opposite of what I think will work. If the mask leaks, I loosen it a bit. If there is a sudden leak from the right, I adjust it to the left.
I've been using CPAP for 15 years and I hate everytime I put it on. But it works, so I do it.
Good luck.
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