BrainsNeedSleep

Kathie, Your own headgear sounds pretty darn clever -- you may have the prototype for a saleable item, there!

Sorry, DME= Durable Medical Equipment provider, shorthand for the various companies that sell oxygen, wheelchairs, and your PAP machine. Again, some are absolutely fabulous while others are nightmares and should have complaints made so as to help the next poor guy/girl who comes along and knows nothing, trusting to the "experts."

Your mask absolutely comes in a sealed bag with the three sizes of pillows. Your DME should properly fit you with one but KEEP the others because you never know...i am having surgery to prop open nostrils whose cartilage is damaged, and i may need the larger pillows when we're all done. Keep everything.

It is your decision whether or not to take your PAP on vacation. Without a WORKING machine/mask, you may not be receiving any therapeutic effects and so are continuing to have damage done to various parts of your one-and-only body. On the other hand, if it isn't working for you yet AND you have a doc appt soon, perhaps you may as well enjoy your vacation as best you can. Me? I'd take it along and persist in figuring out how to make it work.

The benadryl sleepiness effects will wear off before a week is out for most people. Someone told me it changes your sleep but I can't breathe without some kind of antihistamine. Buying an air filter machine next...ENT insists...as I am 'lergic to just about everything now!

By the way, be sure to get and keep copies of every test and report that is done on and about you. I keep mine in a binder just for sleep. And not all labs do good sleep tests. Mine wants me to take (and pay for) a third one but I am losing faith in it since we've been doing this about 1.5 years and we still don't have my AHIs anywhere near under 5.

Having a sense of humor (of any sort) really helps this process along. Good luck!

My apologies -- what if we only notice the apneas at night?

You're also pulmonology trained -- what about apnea not being simply a night-time issue? What if apnea is apnea, and we only notice it during the day? I have observed patients... Any info on that in your work?

From what I have read, exercising a specific body area does not reduce fat specifically at that area. Rather, it reduces overall. Otherwise I would say talking a lot would help! And clearly it does not.

Didgeridoo? Who would pay for the study to be done? Little profit in that. I say we crowd-fund it, and I'd like to try it!

So curious to know if general throat work as in playing Irish whistle is helpful. My AHI went down in study done after I had been playing a lot for several months. Other problems with that study, though.

I wonder if our cultural shift toward "receptive music" (listening) from "participatory music" (ie, singing around the piano in the parlor, etc) hasn't contributed to the seeming rise in apnea. Use it or lose it alas is true.

I rarely feel "sleepy" but often am exhausted, and can't sleep. I wish the language would start reflecting women's "tired" more.

There are many factors contrributing to sleepiness and exhaustion, and improved sleep will not fix those unrelated to sleep, right? My energy is at its best when PAP is working (sometimes), I get enough good sleep (not often), AND I eliminate sugar and gluten/high carbs from my diet -- which, when I am most-sleep-deprived, seem to be what I feel like eating.

Working on serious dietary change now while doc fools with yet another machine and its settings, and on shifting my attitude to "yippie, more green leafies!" from a good chocolate croissant with my morning cuppa.

116157, I had it explained to me by someone in the biz (i don't know, myself) that DMEs are reimbursed the same amount regardless of which mask, machine, etc, so the profit margins are in supplying the least-expensive equipment. So if you have a good DME, you are more likely to be offered better choices. Also a doc call prescribe one machine over another, I have heard.

The problem IMO is the insurance telling docs and patients what they will and won't pay for, and since it's so expensive to pay for the INSURANCE, not many of us have enough to pay for the Healthcare.

I suggest if all else fails, write a letter to your state and national representatives and ask for help. Ask again until you get some, and send a CC to the American Sleep Apnea Association, the one patient advocate organization for sleep apneics.

The illogic makes you wonder.

Great article. Thanks for posting it.

I wonder how much the cognitive dysfunction comes from sleep fragmentation versus the low oxygenation from obstructions. In speaking with colleagues, I suspect the factors vary among individuals. I supposedly have not so many obstructions, suddenly have many centrals, and in all three lab studies over last 6 years, have a great deal of sleep fragmentation. One colleague suggested the frags may in part be provoked by blood sugar issues, and since diabetes runs in one side of the family, I began testing. Yep, could be an issue. Other frags may be due to UARS, which some studies show to be an issue needing treatment and which my sleep doc says "is more for research, we don't really treat it" (my summary).

Also, I think the tests validated for research sometimes have been created of necessity not with real-world applicability foremost. So "underwhelming" results perhaps could be retested with updated measures.

Thanks again for posting. More of this sort of post, please!

Absolutely, Arch!
Susan, what about oxygen supplementation w/PAP and cognitive function? We have all this dementia burgeoning in our population, we know OSA can cause brain damage via at least the hypo-oxygenation, and there is a ton of "anecdotal" evidence. Would love to see that study.

Angie, you sure are going through one version of absolute misery. And you are not the only one with cognitive impairment -- WHO considers you impaired, and did you have testing? I really would like to know.

I have had sleep disorders including apnea probably all my life, and went undiagnosed for 12 years of specifically complaining of exhaustion, poor sleep, and eventually "I can't think my way out of a paper bag." If I hear one more MD say "well, women YOUR age..." There is some truth to that, but for many beleaguered docs in the age of HMOs and other changes to our "healthcare" system, perhaps it was an easy way out, and no further inquiries were made. Eventually, I didn't habe the brain power to push it, either.

Sleep apnea causes frontal lobe damage in many, and the frontal lobes of our brains are where the "executive functions" are such as you mention, like sequencing activities, planning, follow-through, etc. I had symptoms of early-stage dementia, and watched my parents go that route without any treatment for their sleep disorders. The CPAP brought me maybe 75% back to my "normal" brain (debatable with a life-long condition). You know what brought me back to how I felt 15-20 years ago? And I am a skeptic and have a doctorate, for what that's worth...I heard Dr David Perlmutter on PBS talking about his work and book "Grain Brain." Long story short, I tried his dietary recommendations (and only a few of the supplements -- I eat poorly) for two weeks. After one week, I had enough energy to get through the day...for four days in a row...by the end of the second week, I was firing on all cognitive cylinders. ??? Diet made this much difference? No way! So I went off and ate my usual. By the end of the first 6-8 days, I was getting exhausted again. By the end of two, I was clearly getting "stupid" again. I went back on the plan and stayed there...fell off after surgery, but am back on as of this week.

The PAP treatment I think is crucial, but for some, if not many, of us there are other factors contributing to the cognitive malfunctions. SusanR made some fabulous points and she should know, and Arlene also is knowledgeable, but in addition you might want to go to the library and read Perlmutter's (well-referenced) work and see what you think.

It is terrifying to lose brain function, it is incredibly frustrating for docs to say "but you look fine," and for neurologists to test "what direction would you be going if..." when it's the five errands that must be done but in what order when one thing depends on another, and it all gets utterly overwhelming -- when we KNOW we should be able to do this effortlessly! And never mind the inability to make decisions....

Good luck! You have company in that experience.

Hey, Dan -- I'd like an up-to-date sheet with citations to research to give to docs who don't take this seriously (my elderly mom's doc actually shrugged when I was helping her) about what the co-morbidities are. "What we know so far about how poor sleep impacts our health:" or some such. Lots of docs don't listen to their patients, because, really, what do we know? (Never mind I was a clinician myself.). SO glad that PCORI and this project are working to change all that!