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BrainsNeedSleep

BrainsNeedSleep
Joined Dec 2014
BrainsNeedSleep
Joined Dec 2014

"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 :-)

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!