"Once you jump in, you can't jump out"

[novatom]

I posted a picture of my new (and first) CPAP machine on Facebook, and among all the well wishes, one of my friends wrote the rather ominous-sounding comment "once you jump in, you can't jump out," insinuating that it will be a lifelong situation.

I realize that and understand that the only permanent solution (and not always permanent, from what I hear) is surgery, but it did raise a question in my mind...

Has anyone heard of anyone being able to give up CPAP forever? I'm not overweight, but for people who have lost weight, are some of them able to give it up as well?

Anyone want to share any success stories?

Thank you

P.S.: by the way, I'm really enjoying this board. I find the people much more responsive than at the CPAP users forum board.

[herbm]

I think the idea of that "ominous" warning is entirely misguided:

Likely CPAP therapy is a lifelong aid to better health (both feeling better the next day and long term avoiding of organ and systemic damage from OSA).

So why misguided? You COULD quit, if you were willing to give up the advantages it provides and would almost certainly be NO WORSE OFF than if you never started -- except perhaps in knowing what you were missing.

In other words, the therapy is not addictive in the usual sense of the term. A fairly close comparison is with eyeglasses. Sure SOME people MIGHT benefit from surgery, not all etc. You likely will wear glasses the rest of your life but wearing them does cause NEW eye problems, and you can take them off if you wish. Yes, there MIGHT be exercises that can improve your vision but they generally offer only very limited results etc.

Frankly I just plain SLEEP BETTER (I mean in the moment, not just the results the next day or long term for my health) when wearing the mask.

My nose stays open (P10 nasal pillows) allowing me to breath through it and avoid dry mouth from having my mouth open due to congestion. (This was the OPPOSITE effect from what I expected starting CPAP therapy. My expectation was that nasal congestion would prevent me from using a nasal mask, when the opposite is true: the nasal mask prevents the congestion and ill effects from that congestion.)

My mouth not getting dry is a big benefit. The humidifier keeps my nose moist as well.

I don't snore so my wife sleeps better.

I like sleeping under the covers but dislike the stuffy and hot feeling of rebreathing my own exhalation -- with cpap fresh air is piped in for me.

I would wear the mask even if there were no other benefits than those immediately available.

Add the usually expected benefits and the equation is so lopside that wearing it for life is a fantastic deal.

A lot of people come here trying to figure out how to AVOID DOING the therapy or planning to give it up before they even try it fully or adapt to using it 100% of the time.

Funny thing is that once people get adapted, they spend very little time or effort "trying to quit".

[Peter_C]

Perfect reply above me. I've been on the machine well over 10yrs. I've had both mouth and nose surgery (would do the nose over again in a heartbeat), no more Mr. Flappy. Mouth/throat surgery is rather painful (so says the guy with two new knees, one hip, and both shoulders rebuilt), and IMO the results may not be worth the effort. It lowered my pressure about 5 points.

Perspective: OSA is no different than being a diabetic, or low thyroid, etc - instead of pill or insulin for life, it's a machine when you sleep.

[surferdude2]

Since you asked, I had to go back and count the days. I have been on an alternate regimen for 60 days now. I use a mouthpiece called SnoreRX along with a nasal device called SleepRight. I use Nasocort nasal spray (corticosteroid) daily. Lastly, I changed from my normal sleep position, which was on my back, to side sleeping. I had to get a memory foam mattress topper to make side sleeping more comfortable. It takes all of these items to make it possible for me to dispense with the S9 AutoSet that I was using for four months prior. My untreated apnea was at an AHI 9 and my self titrated pressure (using the S9 AutoSet) was 8~12 cm H²O for effective therapy.

The inspiration to try an alternate method came when I noticed that side sleeping made a huge difference in my AHI score. I reasoned that some less intense therapy might be worth trying if I could manage to not ever sleep on my back. A dental device seemed reasonable for a test. The SnoreRX device is adjustable so that the amount of mandibular displacement can be kept low enough to be tolerable and still give some relief from snoring and apnea. In my case, setting the device at 3 mm. (less then 1/8") displacement works.

Along with the side sleeping comes nasal congestion of the nostril that is on the bottom. That's why the nasal devices and spray are needed to counter that. Using them I find that I do not need to mouth breathe at all, which is a departure from my usual need for many years.

I suspect this works for me because I don't have severe apnea and also because I'm willing to do all the other things necessary to escape the hose and mask. The dental device and mattress topper cost me a total of $250 and it's the best bargain I've ever gotten. The nasal devices cost $6 for three which will be enough for three months. The Nasacort costs $18 for a month's supply but I get it for $15 using a coupon. I have no symptoms of apnea, sleep six or seven hours nightly (my lifetime norm) and wake up feeling great. I was sleeping less when using the S9 therapy and feeling worse.

I used a recording pulse oximeter and a digital audio recorder when first trying this method and still use them occasionally to make sure I'm doing well in all those areas. I get no indication of any O² dips below 94% and the pulse rate is constant while I am asleep. The audio recorder verifies that I am not snoring or gasping for breath at any point during the night.

I daresay this will not work for anyone with severe apnea but for a mild to low moderate case, it may be worth considering. Don't get me wrong, I'm not saying it's comfortable to have a mouth and nose full of hardware all night but for me it's the lesser evil. YMMV

Best regards, Dude

[Galactus]

Hey surferdude, not too be funny, but if what you are doing is working you might take a look at another thread posted about people who are taking singing lessons and that is also helping them. Point was made that a well muscled and toned airway may also be less likely to collapse. Just something to think about on top of all you are doing.

OP maybe the comment isn't or wasn't mean to be ominous at all, maybe you're just reading too much into it and all they really menat was once you try it you'll feel so much better you won't want to stop or go back to the way things were or are now.

For me I think i'll be on xpap for quite a long while if not forever, I have large neck, and I am/was well overweight. I have lost 100+ pounds so far and either it isn't enough or it may never be enough for me to not use the machine. But the truth is so many things are better now for me that I really could care less if I have to use it. It isn't a big inconvenience, it's quite easy to do and has some upsides that herbm has mentioned. Like Dr Ruth says "If it feels good, do it!"

[surferdude2]

Kudos on your weight loss Galactus. Even though it didn't make any detectable difference on your PAP therapy, it no doubt help with lots of other things. Keep it up! (or actually down) Keep it down!

I followed the thread earlier about singing but felt it wasn't something I should try. Mrs. SD said my snoring sounds better than my singing ever will. I get no respect...

I've never had a weight problem, weigh 150 lately and stand 5"8" tall, which is about what my dims. were when I entered the army at age 20 all those eons ago. (now 78). I just wish I could do the PT test scores like I could back then. I still recall the required reps to get a perfect score:

78 set-ups
72 push ups
2 mile run in 13 mins.

I always nailed the first two but never could make the 2 mile run fast enough, always ran short of air. Maybe that was telling me something about what I'm experiencing now.

[Galactus]

Thanks, doing my best, some days harder than others, you know how it is, like anything else.

You may not get any better at the singing, but do you think like any other muscle it might help tone the airway and keep it in better shape?

6.5 minute miles don't sound like anything to sneeze at (if you ask me).

[novatom]

Thanks for your input everyone. I really have no intention or desire to give up my CPAP therapy if it gets me to my goal: a decent night's sleep! It's been a real struggle my first week, but I'm determined to make it work.

[surferdude2]

I dunno but singing may not have any more effect than talking loudly would. I can't test that very well since I've been married over 55 years and have found that raising my voice is usually expensive, one way or another.

In fact, to be safe I try to keep my voice low and confine my remarks to yep, nope and maybe. That way I can sleep safely with both eyes closed.

[TyroneShoes]

I have a co-worker who "jumped out" 2 years ago after 6 years. He had mild SA and got a dental appliance, and felt like he no longer needed the XPAP. Of course when he started XPAP there was probably no way for him to really see the data or parse it, and he may have based this on how he "felt" under the new therapy, and so may have made an uninformed decision about stopping. But everyone is different, and possibly the appliance is all he really needs. At the time he was traveling a lot, so convenience also entered into the decision.

If I were thinking about "jumping out", the first thing I would do would be to lower my pressure to a straight 4 cm and see what sort of numbers I was getting. If they went up, which is the most likely scenario, I would feel compelled to "stay in".