Does CPAP always work?

[schweitzeralan]

Although I've been diagnosed as one who suffers from sleep apnea, I was still always able to get to sleep until this past week. I've tried using oxygen, and then the CPAP. I've found the CPAP to be most cumbersome and have posted previous comments on tis web site. During this past two days i've managed to access somewhat the device, However, I don't think it's been helping me breathe any better than the simpler oxygen machine. Once I start to drift off, I feel, again, an urgency to breathe. for the past week I have only been able to sleep a mere 5 hours, with the CPAP device. Can this condition ever improve?

[Tracy]

If you have apnea and its being treated properly, yes your condition will improve greatly.

CPAP is challenging - as I often say - who WANTS to sleep with a mask strapped to their face with hurricane force winds blowing up our nose There IS an adjustment period.

The challenges are
Mask - you must have a mask that is best suited for your face. Often we patients are simply handed any old mask from home healthcare and it can be a disaster. No mask should cause pain or discomfort. There are many mask choices and YOU must take responsibility to try many on and choose which one feels best, and best fits YOUR FACE.
Machine It is a strange feeling to have the air pressure blowing constantly - especially when you are trying to exhale while air is still coming at you! I do not know what your machine pressure is set at - but it sounds like its low - and POSSIBLY too low for your needs. I suggest you contact your sleep doctor or home healthcare provider and tell them you are not feeling any benefit from cpap and want to have your pressure setting reevaluated. It is more common than you would think, for patients to need pressure increases. When you have the sleep study and one cpap pressure is determined, it is only their "best guess" and often needs changing but only YOU can tell and then YOU must report back to them.

Also - sometimes machines are SET WRONG - i have seen many cases where a patients machine was supposed to be set at and delivering a pressure of 10 but in actuality, the machine was only set at 7. Mistakes happen - all you have to do is take your machine in to where you got it, and have them check the pressure setting to see if its correct.

Oxygen - important for you, but it does not open the airway which cpap does. If you are having apnea events, and your airway is blocked, even your supplemental oxygen may not be being delivered.

We patients need to report back to our healthcare providers when things are not working - so changes can be made.

If you have the wrong mask size or style, if you have the wrong cpap setting - it won't be helpful - could even be harmful. So make sure you rethink this!

I was a CPAP failure my first year - because I did not know what to expect and how things worked. I had no clue that there were mask choices - was just handed a mask. I thought this is THE MASK - It was not only the wrong size for my face, but no one told me how to adjust it, so I pulled it so tight to keep it from leaking, that I had mask strap sores and bruised cheek bones. I hated that thing and often pulled it off and threw it across the room. I also was originally on supplemental oxygen with cpap and later found out a lower pressure than needed. CPAP should eliminate all snoring. I still snored and gasped for air during sleep - so that meant my machine pressure was too low - BUT I DID NOT KNOW THAT, NO ONE EVER TOLD ME.

The point is, we need to advocate for ourselves. Glad you are here and asking great questions - that tells me you want to learn and make it work. Bravo! I encourage you to keep trying - so contact your sleep doc and let him/her know whats going on.


Keep posting and let us try to help you!
Best-
Tracy

[schweitzeralan]

Thanks for the reply. I am undergoing my third sleep study to determine if I have CSR. I may have to use another machine; namely, a BiPap. I'll still have to get adjusted to the mask. Right now I'm back just on oxygen when I (try to) sleep.

[Tracy]

I've been on bilevel for 18 years - its actually what saved my life!
My pressure for inhalation is high at 20 - i can do that fine, but exhalation is set at 11 - much easier than exhaling over a force of 20 blowing at me

I have mixed apnea too - both obstructive and central episodes....bilevel seems to treat this best, although in recent years "they say" cpap works just as well too with centrals. I do believe that a reduction in pressure upon exhalation is the one best feature that can turn a struggling patient in to a successful one!

So - good luck to you with bilevel!
tracy

[schweitzeralan]

I shall know if I need a BiPap machine during the weeks to come. I find it very difficult to exhale with a CPAP. I also find it hard to turn. I'll see what the sleep study group has to say. I've become somewhat of a insomniac. So far the oxygen helps; then, sometimes it isn't enough

[Tracy]

What do you mean you find it hard to turn? Do you mean turn over/change sleeping position? If so, why? Does it negatively impact your mask causing leak or pressure point soreness?
See PAPillow to solve this very common problem:
http://papillow.com/


Ask about the Auto BiLevel - it's what I use and absolutely LOVE IT

http://shop.talkaboutsleep.com/?action=item.display&category=bi-level-machines&page=10241

tracy

[schweitzeralan]

The VPAP sounds and looks appealing. I may or not be suggested by my doctor, whose conclusions are contingent on the results of my sleepover. The CPAP is great for inhaling but bad for exhaling. I like to rolL my head before going to sleep; and, I sleep on my side. The mask obstructs all tHis, but I have no problem with the oxgen. I'm afraid I have the princess and the pea syndrome.

[schweitzeralan]

I've been on the PAP thing 9Bi-valve now) and still have trouble sleeping. I think I shall be an insomniac forever The mask and hose remain cumbersome; it's noisy still; can't get used to it. I do have an oxygen setup which is sightly better. This whole respirator thing is nuisance, and i miss my old sleep patterns.

[bbacher]

I'm with Tracy on this one.

I use a ResMed Swift LT mask, and it's comfortable enough that I don't even feel it anymore. I look forward to putting it on because I can breathe so much deeper and easier with it on, even when I'm awake. The hose swivels around every which way, so turning over has never been a problem. I did build a simple thing out of PVC pipe (for a couple of dollars) which elevates the hose, and that helps a lot also.

Before CPAP my AHI was around 35 (not as bad as some people, I know). Now it's consistently less than 5 every night. I have other sleep problems, but apnea-related problems are a thing of the past.

I only say all this to give an example of a success story. I read a lot more horror stories about CPAP than success stories, and I'm convinced that's because the successful folks don't speak up as much as the unsuccessful ones.

You're just starting out on the CPAP. You may eventually give up on it, but I encourage you to give it a while before making that decision. It may take some time to find all the right settings, or the best mask for you. If you give up too quickly you may never know how good it can be.