BrainsNeedSleep

"Once the patient has access to their data most of it is comprehensible over time with a bit of experience and logic. "

-- We need to remember that a lot of people are not functioning terribly well when they are finally diagnosed, and logic may be in short supply. Also, the experience needs to be very well-informed, and how is the average patient supposed to know what even qualifies as good information?

We here on this site do make an effort to provide only good, solid information, so it's a good place to start, but it is far from sufficient. I'm a patient who has spent years educating myself, and the more I know, the more I have learned how LITTLE I actually know.

Also, different people have different capacities for technical information and learning material otherwise foreign to them -- most of us do not have the fund of information that would underpin this new learning. On the other hand, there are plenty of folks with a background that would be helpful and they could absorb and analyze the information just fine -- just remember that this issue is not "just" a matter of air pressure.

So while I am absolutely supportive of patients being able to manage their care as much as possible, I have learned over many years that mucking around with pressures/machine types without REALLY knowing what you're doing can cause MORE HARM than good. I have been told that a change in pressure of 0.5 is significant, so changes need to be carefully titrated and slowly, with observations after each change, if people do make an effort to learn and adjust their pressures themselves if they do not have access to sleep physicians.

There is a terrible shortage of board-certified sleep physicians, they are retiring faster than we are training new ones, and the ones we have tend to be clustered in certain geographic areas, leaving millions of people without access to any. In my case, there is one, but he was unhelpful about my complex apnea and I had to go to Boston to see The Man who's the specialist in that.

So in short, about own-care? Your results may vary. Also, Sleepyhead is amazing and it is "free" - but I urge people to realize it's more "shareware," where you donate what you can afford to the amazing man who has dedicated massive hours and work to create it, and who has apnea himself.

Breaking news: SleepyHead has shut down just very recently, which is a tragic development, and I hope very much that there can be a suitable resurrection.

About that "AHI of 5 is normal", one of my own hot-button issues: I cannot now find it but there was an article a few years ago by a researcher showing that AHIs of over 1.0 were related to higher rates of cardiac issues. I personally reject the idea that "5" an hour is "normal -- that's 35-40 times a night that our sleep is disrupted to one degree or another, and when my AHI was 5 and my sleep doc said I just wasn't giving it enough time (it had been years), I called BS after a year or more of telling him I could NOT FUNCTION. I finally found a specialist who correctly diagnosed my kind of apnea, put me on a particular treatment, and my running 30-day AHI hasn't been over 1.0 in many many months. I've even had a couple of nights with 0.0, which I find hard to believe, and my average usually is around 0.6-7. And I CAN function. If it goes much over 1.0 for several days in a row and I have been awakened several times in the night (sore shoulders, tossing from discomfort), then I really feel it in terms of function.

There are researchers working on better ways to measure and describe how well our sleep is going and how the machine is measuring it, but they haven't gotten anything better out there yet. I wish they would hurry the heck up.

I think the use of the number PER HOUR is somewhat misleading - "only 5" sounds a lot better than "35 to 40" for a 7-8 hour night. So I suggest doing everything possible to get your numbers as low as possible if the number accurately reflects your sleep interruptions. If you have other things interrupting your sleep besides apneas, like a restless partner, or noise on the street, or ambulances going by, that sort of thing, or a cat or dog on the bed, do what you can to minimize those as well.

The machines and oral appliances can only do so much :-)

Have you checked the machine to be sure it is indeed still putting out air? The hose for kink? The vents on your mask blocked by PJs or cover or anything else? I had that experience a number of times several years ago and I think for me it was the vent was blocked by how my face was mashed into my pillow, and that wasn't good.

Also, if it is consistent, check hose for small leaks? Don't know why it would be different later in the night, but...

Are you using positional therapy to help with apneas? Often having to start side-sleeping can make some people sore if they are used to sleeping on their backs or stomachs. Also, those who have reflux/GERD issues are sometimes told to sleep on their left sides (the right side makes it easier for stomach contents to be released upwards) and so if this is you -- you might have to give your body a little time to adjust.

Hi - so sorry to be seeing this so long after you posted the original remarks. Hopefully you have it all worked out now. There are several different types of "not-breathing" that happen at night that I know of: central apneas are periods of no breathing without any effort to breathe -- your body just sort of hangs out waiting for the signal to take in the next breath. obstructive sleep apnea is characterized by airway collapse, like trying to suck a milkshake up in a collapsed straw -- there's lots of effort to breathe, but no air can get past the collapsed part. Hypopneas may mean more than one thing, I think, depending on who is defining the word. My understanding is not only slow or shallow breathing, but also a partial collapse of the airway so that breathing is impeded but not entirely cut off -- this makes your body work harder to suck that milkshake through what little space is left in that collapsing straw. There are many different reasons for each of these. Centrals can turn into obstructions, too, making it even more challenging!

It seems we need a good glossary of terms on this website so that we can link to definitions here on the forum.

After many years of misdiagnosis, I don't take kindly to being told "not to worry" without any explanation or satisfactory resolution to my questions. With all due respect, I encourage you to insist on getting an answer to YOUR question that makes sense to you.

I'm not a sleep tech but whatever your pressure, you shouldn't be having such a leak issue, and if you are, then something is wrong: the software reporting, the software/machine sensor of leaks, the mask fit, etc. I would GO to the DME provider and politely insist on an explanation that DOES make sense, or a fix. If they are unhelpful, tell your doctor because they are the ones who refer to DMEs, and if they get enough complaints about one, they sometimes change! Of course, that assumes you have choices in your area, and you may not.

If you do not get satisfaction from the DME or your doctor's office, then I would get on the phone to ResMed and very nicely ask for someone to help answer your questions. If that doesn't help, you can try tweeting @ResMed that you have a problem that no one is helping with, and that might work! @ResMedMick has on rare occasion responded. They're nice people :-)

Sorry, I wish I could give you the one-line answer that fixes your issue!

Any chance you can show a picture?

Does water run through the hose just fine? Or is there water coming out where the part looks "stretched" and possibly the hose got damaged? If the air pressure is fine with another hose, then it's probably not your settings, right? So check the hose for air leaks, and with water, for any internal blockage for some weird reason.

Also, if there is a manufacturing glitch that contributed, your DME should take a look at the hose and probably replace it free, especially since it was only used a few times before it failed.

If you, like I, sling your hose over the headboard of your bed, be sure you didn't accidentally jam the hose in there somehow and cause the damage that way -- you wouldn't want to have that happen a second time! :-)

Plain ordinary hoses can be bought on sale for around 12 bucks at cpap.com, where I usually buy stuff that insurance won't pay for -- just be sure that the diameter of the hose (there are two) is matched properly in the settings on your machine --- the narrower hoses take an adjustment to maintain same air pressure through a narrower "pipe"!

Hi. I don't use that machine but when all else fails, read the instruction manual that came with it? The ramp setting should be one that any patient can access and adjust. If you did not GET an IM with it, call your DME or whoever gave you the machine, and ask to be sent one -- but while you're on the line, ask someone there to walk you through changing the settings.

Personally I never cared for the ramp feature on any machine, I didn't find it actually usedful. Instead I have used exhalation relief, which is not found on all machines but should be found on your ResMed though I don't know what they call it (Old Respironics machine called it "C-flex") -- basically what that does is back off the pressure slightly when you exhale so you don't feel, as I have, like you can't breath because of the hurricane blowing into your mouth.

This, of course, is different than the ramp feature, but I had no trouble getting used to the pressure after the first couple of nights as long as the C-flex was on. Now, sometimes I have to lift the mask to make sure I remembered to turn the machine on! (When I'm on my side facing away from the machine.) I wonder if this might be helpful to you instead of ramp?

Failing all of the above, call your doc's office and ask to bring the machine in to have the settings shown to you so that you can adjust them yourself.

Good luck. Be persistent.

Hey, y'all. I see periodically people asking about how to deal with mouth dryness and CPAP and thought I'd offer my experience.
Quick background: I have complex apnea, and use a CPAP at 9cmH2O with a full-face mask, and have claustrophobia. No way a chin strap for me, and I use the exhalation-relief setting on my PAP because if I don't, the constant pressure against my exhalation makes me feel I can't breathe. Also, I'm supposed to sleep on my side to reduce obstructions. When I'm asleep sometimes even best efforts fail and I roll onto my back (even with tennis balls in the way) and that seems to be when my mouth sags open and I mouth-breathe. Those mornings I wake up with the Sahara in my mouth and that's not good for oral health at all.

SUGGESTION: if you haven't already been to an ENT doc and don't know this:

1. Look in the mirror, and with your mouth closed, take a good sharp fast breath IN. Do your nostrils tend to collapse and partially close off the air?
2. Look in the mirror and look up your nose. Does it look like you might have some obstructions in there? Turbinates can be swollen; there can be scar tissue from an old injury; allergies can swell the tissues in there.

If so, then your AIRWAY is compromised right at the start. Most docs I've been to look from the mouth down, and never checked my nose! Finally went to an ENT and have had 2 surgeries, neither worked well, and so I'm back to needing some sort of object or device to prop those flaccid nostrils open. The external strips work for some, the internal devices work for others.

I was offered a free sample of a Mute device back in June and was skeptical that anything inside my nose could help (wouldn't it be taking up valuable open real estate??) but I was pretty amazed at the difference it actually made. (The external strips hurt my skin.) Since June I have used one of those Mutes every single night, and I've had MAYBE two, three episodes of mouth breathing since then. My leak rate has also gone down, I think because my mouth's not fighting/pushing against the mask. The lower leak rate is important in my EERS treatment, and I have found that my AHI is now more consistently under 1.0, where it should be, IMO.

Full disclosure: I was SO very grateful for the help from the device that I emailed the rep I had met in June who had given me the sample (and to whom I had expressed much skepticism!), and wrote a paragraph about my experimenting and experience. She sent me a couple of boxes of them, gratis. Sometimes things do help, and I am happy to have something positive to say, along with my usual rants about how an AHI of 5 (aka 35-40 interruptions a night) is too high of a standard.

So at least for me, the mouth-breathing was related to a faulty nasal airway, and the fix was relatively easy, and it didn't make me claustrophobic, AND it helped improve my AHI as well. May you be as fortunate in your hunt for what will work best for you!

IMO the "RIGHT VALUE" of your CPAP setting is what works best for your nighttime breathing, and that is something an attentive, caring, informed doc should be working with you on, NOT just checking for pedal edema. I can't say that increasing pressure wouldn't be useful -- maybe it would be in some cases -- but I've been a patient misdiagnosed for well over 20 years, and heard all kinds of "advice" from patients and doctors alike. Both groups have been right sometimes, and both have been wrong sometimes. The wrong advice in this condition can be seriously dangerous, so be very care-full and if you want to experiment, at least know how to keep all your other variables constant and let your doc know what you're wanting to do.