Tell me 'bout yer CPAP!

In My Humble Opinion
1

Yes, this is the next installment of “What health ailment will MZ develop next?”. In case there’s anyone who’s NOT totally fed up with it (and for those who’ve chimed in on earlier threads, again, THANK YOU - your advice, anecdotes etc. have helped more than you can know).

And the usual disclaimer: you are not my doctor, I am not seeking - nor are you offering - medical advice.

History: A lifelong awareness of “holding my breath” while sleeping. 3 sleep studies from roughly 2000-2001, none of which have shown much in the way of apnea. The most recent one, about 3 months ago, did show enough episodes (19 an hour, with desats to 85ish%), though during REM sleep only to qualify for a formal apnea diagnosis. The rest of the night, I only had maybe 3 episodes per hour. I don’t feel I slept at all well, and the truth of the matter is perhaps worse than that. Oh, and I don’t snore.

Oh, and I also have Restless Legs Syndrome. Previous studies (when I was unmedicated) did detect leg movements; this time, when I’d taken my meds early in the evening, did not.

So I see the sleep doc in a couple of days, and we’ll discuss a possible CPAP trial.

What’s funny is I don’t feel all that sleepy during most days, but a lot of days when I’m out and about, my body says “we’re going to go home and crash. This is non-negotiable”. I’m definitely not one of the hundreds-of-apneas-an-hour zombies, anyway.

Typo Knig had fairly similar numbers - oddly, in his case the doc wants him to do a daytime sleep latency test vs. jumping directly to a CPAP. Possibly he reported higher numbers on the Epworth scale.

OK so the questions:
[ul]
[li]If you’ve had similar moderate apnea numbers, have you tried CPAP? [/li][li]How difficult was it to adapt to? (especially if you are in the moderate realm, but severe folks, please chime in too!) I get the distinct impression that folks who are turning blue every 10 seconds find it a lot easier to adjust to. [/li][li]What kind of pharmaceutical help, if any, did you need to help get you started with it? Do you need the drugs on an ongoing basis? [/li][li]Did it help make you feel better?[/li][li]How soon did you find it helped (if at all)? [/li][li]What if any other health benefits have you seen aside from feeling less fatigued? (e.g. BP drop, weight drop, etc.)?[/li][/ul]

A friend of mine said she had to use Ambien at first. I hate Ambien, but Sonata usually doesn’t hit me hard enough to overcome the fact that if anything ain’t right, I can’t sleep. Hell, to do the sleep study I had to basically go sleepless the night before. And my doc knows me well enough that I suspect she’ll provide the goodies as needed.

It may be a while before I can do the CPAP trial anyway (there are some other things that have to be handled first).

2

I’ve never used CPAP nor do I have sleep apnea, but I was a respiratory therapist with lots of home care experience (so much setting up and caring for CPAP/BiPAP/VPAP/AutoPAP/etc.)

Many things you can try, most with varying levels of success (but then again CPAP has not such a great rate of success because many people are intolerant of it).

Elevating the head of the bed is usually a winner. Prop yourself up with pillows, put cinder blocks under the head of the bed…whatever it takes. For mild to moderate sleep apnea this works well for many people. Mouth guards sometimes work, breathe right strips help some, and the stop-snoring numbing sprays (that rarely work at all)…many tricks to try but sleeping position is a big one.

I hate to go there so quickly, but the biggest thing that actually worked and was tolerated by most and got people off CPAP (or kept them off) was the surgery (there are a few actually, your doc will tell you if it is appropriate for you and if so which one). Unfortunately most insurance companies will make you do CPAP first, when that fails try BiPAP (or AutoPAP) and some other treatments before they will authorize the surgery.

3

Too late to edit, but I meant to add that the above is not meant to be medical advice and is merely a generalization of what I have seen in many different people with many different degrees of sleep apnea and may or may not be appropriate for you. Only your doctor and therapists can tell you for sure (but mostly the initial stages of treating sleep apnea involve a lot of trial and error so be patient with them. ;)).

4

I’ve been diagnosed with sleep apnea, and I have a CPAP.

I thought that I’d have problems adjusting to it. While it’s mildly annoying at first, I was able to go to sleep and stay asleep with surprisingly little difficulty. I used to need some Benadryl as a sleep aid, but now I fall asleep easily (and stay asleep). I still wake up because of unrelated pain, or because I need to pee, but I don’t wake up because I can’t breathe. When I wake up, I’m AWAKE, I’m not half asleep, because I managed to actually get a lot of good sleep with the CPAP. I’m somewhat better natured (although that’s really a relative thing with me).

Also, use distilled water only. It makes that humidifying chamber last a lot longer.

5

Oh! I missed a whole part of the OP too. Some benefits of CPAP (when tolerated) are all the expected ones of more energy, better sleep, etc. but for some there are unexpected benefits such as weight loss (the body works much better when it is rested and oxygenated) and healthier looking skin.

Some of the unexpected side effects can be weird dreams (better REM sleep means more dreams, better rest means you might remember them) and weird food cravings (not like pregnancy cravings, but like craving vegetables when you usually don’t) that I think come mainly from an improvement in overall health.

And as always not everyone will experience the same things, so you might notice different benefits/drawbacks.

6

It seems like I’ve had a CPAP forever. I didn’t need one until I gained a significant amount of weight. I honestly don’t remember how hard it was to get used to it, but I know that I never needed any drugs to help me fall asleep. However, I can tell you that once I was accustomed to it that I would never, ever want to sleep without it. If I tried, I’d usually end up having anxiety attacks from stopping breathing. I’m only mentioning all this because I really believe that if you can get over the initial discomfort that it’s absolutely worth it! Now that I’ve lost about 75 pounds, I’m only about 20 pounds away from when I started needing it and I can tell a difference. Sometimes while taking a nap, I can skip it, especially if I sleep on my side. But other times, I wake up and feel tired and realize that I probably should have put the mask on. I absolutely always sleep with it on at night.

I think I’m rambling because I’m tired. I guess it’s time to go put my mask on and go to sleep. :stuck_out_tongue:

7

This is very interesting. I have very strange and vivid dreams quite frequently. I never realized that this might be contributing to it.

Oh, and I also never use the humidifier thingy, I just leave it empty. It seems like every time that I’d try to use it that the condensation would somehow end up in my nose or on my face. It’s just easier for me to ignore that part all together.

8

Not only does it make the humidifier last longer, but the entire machine and tubing. Minerals build up on the tubing, mask, and every other part that has contact with hard water vapor. Always, always use distilled water only. :slight_smile:

Also (as Lynn probably already knows) if you have an option of heated vs. non heated humidity go for the heated ( it’s not too hot, just to body temp.) it is easier on your face and easier on you mucosa too. Some insurance companies won’t pay for heated humidifiers for CPAP, if yours doesn’t you can also put a heating pad underneath the humidifier to achieve the same effect (but never put hot water in it, you might burn yourself).

Finally if the humidifier isn’t enough (or if for some reason you get a CPAP without humidity) and you are still getting dry mouth/dry nose form the machine, using saline sprays and lubricating jelly (KY not Vaseline) or saline gels will help a lot.

9

Not that it matters if you are comfortable without humidity (the humidifier is for comfort only) but if you are getting a lot of condensation, it is usually because it is too warm. Turning the heat down or off should lessen the condensation (but might not eliminate it) and the type of mask you use can affect how annoying condensation is (a full face mask is going to be annoying with condensation than nasal prongs would be for example).

For a newbie, starting out with no humidity (and especially at higher pressures) is likely to cause dryness and discomfort- often enough to make them not try the CPAP again. For those who do well with CPAP (and I didn’t mean to make it sound like no one does or that only a few do…it’s probably closer to 40 or 45% of the sleep apnea patients with which I was familiar who do well) it typically takes a good month or so of using it every night (even if just for a couple of hours) before they are really comfortable with it.

10

I was diagnosed with sleep apnea nearly five years ago and was put on a CPAP; don’t remember my numbers but I think I had a rather high number of incidents per hour. I had no trouble adjusting to being on a CPAP - I’ve got one with a heated humidifier, and use a mask that covers just my nose. After I started using it I had surgery to correct a deviated septum, which also seemed to help quite a bit.

I can attest to the strange dreams, too; before I was on the CPAP it seemed like I never dreamed but now I’ve had some real doozies.

11

I have a CPAP & I have a BiPAP. After several months of trying both & being unable to get used to them, they are comfortable in their cases. I’ll just risk it.

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Thanks everyone who’s weighed on so far!

I actually won’t be surprised about the dreams… I find that when I take a Sonata, or when I’ve taken my Requip (med for the Restless Legs Syndrome), I dream more, and more vividly - or at least I remember dreaming more. I think it’s because with the pharmaceuticals onboard, I spend more time in REM sleep.

Are CPAPs available to rent? or must one purchase the unit? I’d hate to lay out a couple grand and have it not work out. I presume the mask and perhaps the tubing would need to be purchased regardless.

13

Usually that depends on your insurance company too. Most will rent a CPAP machine for X months and then it converts to a sale. That way all maintenance is by the company (at no charge) and if you don’t tolerate it, it can be returned and the insurance will be out less money. Some insurance companies buy them outright, and if you are self-pay you can negotiate either with the the DME company.

Tubing and masks are replaced periodically, and should be under contract (no extra charge) with a rental unit, and covered at least partially by insurance for an owned unit.

14

My insurance company did rent-to-own; I made monthly payments (part of which they covered) for somewhere between six to nine months, and then everything I paid was applied to the purchase price. My insurance company also covers part of the cost of a replacement mask and tubing; I get a new mask every year, although I think I’m actually allowed a new one every six months. I’m also covered for new filters if needed (something I tend to forget about).

There are also many different types of masks available; some people have trouble finding one they’re comfortable with, but I was lucky that the first one the company supplied worked fine for me one I got it adjusted properly.

15

Masks: What about the initial titration session? Do they just give you what they have on hand and you’re stuck with it for that night (even if it’s so uncomfy you can’t sleep)? Or do they typically have a couple of different styles to try on you?

Any consensus as to which styles people “in general” find easiest to deal with? I know each person is different but I’m looking for “50% of people prefer nasal pillows, 10% prefer full face, 2% prefer a jet engine directly overhead…”.

16

I’ve had a CPAP for about nine years. Until a few years ago I used a nasal mask; about three years ago I started using nasal pillows. They seem less obtrusive, but you might want to try several different options before you settle on one.

The only problem I ever have is condensation – not because my humidifier is too warm (I don’t use a warmer) but because we keep the bedroom very cold in the winter. I’ve never hit on a good solution for that.

17

Depends on the sleep lab, but my experience is that they will probably use a crappy disposable mask or an only slightly better reusable mask (that you will keep) but it will usually be on the very low (cost) end of the spectrum. Some have different styles, but again it will probably be the low-end of the selections. (Unless they have an awesome sales rep that leaves high end samples.)

Some people are good with most any mask, and for some it takes a little experimenting to find one that is comfortable. Just don’t give up too easily. A good equipment company will work with you and exchange out masks as needed until they find the right one. And these days there are so many choices in masks and nasal pillows that there will almost certainly be one that you find “perfect”.

I found my patients were all over the board with preferences and what they could tolerate. Nasal pillows seemed preferred by men for some reason, and full face masks (before the Mirage) were almost universally hated (Mirage changed that somewhat and now it is much more popular) but most did fine with a “standard” gel nasal mask (I have brand preferences, but I am trying not to be biased here). There is also a strapless nasal pillow system that works very well for some and is hated by others…it’s really a crap shoot. You’ll just have to see what is good for you and you might be limited by the equipment company and/or the insurance.

18

First, there are a good number of old CPAP threads here. They should all come up in a search.

I think my number is fairly low, and I’ve been using it for about 4 years now. I use a full-face mask because I’m a mouth breather. It took a few months to really get used to it, but now I have a hard time sleeping without it. My insurance covers a new mask every 6 months, so I’ve tried about 5 different brands/styles. They’re all slightly different as to how they unclasp; adjust the tension, etc. You should be able to try a few different ones before you select one, but a few minutes in the pharmacy won’t really be a good test. When you’re trying them, lie flat on your back (even if it seems silly) because gravity makes the mask feel different than when you’re sitting up.

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I have no advice to offer here. I’d just like to say that I initially read this thread’s title as “Tell me 'bout yer CRAP!”

20

I had sleep apnea about five years ago after I put on some extra pounds. Tried a special pillow, the breathing strips and other little tricks but nothing worked.

Then I bit the bullet and lost the weight and the sleep apnea vanished. Didn’t cost me a penny.