BrainsNeedSleep

Hi DanM -- I actually did myself in by putting some drops of lavender on a cotton ball and putting it near the air intake on my PAP -- it didn't smell like much but I awoke mid-night with a sore nose and throat, and the lavender smell was overwhelming. However, I am pretty sensitive to smells. What I found intriguing was that SleepyHead showed I had more than my usual number of RERAS so I think the scent actually irritated my breathing passages.

Very few people work voluntarily for free. But there may be people who are equally interested in this issue and one of them might be an engineer. In fact, why not get pro-active about the issue, and visit your nearest college with an engineering department (bio-eng, if possible) and put the question to them? They may make developing the solution a class project. A whole lot of improvement in patient care has come from patients helping each other - usually for free - so maybe you will find a way to do that. Good luck!

With the advent and perfecting of 3-D printing coming along, I think it only a matter of time before DMEs will have face-scanning devices and possibly the printers right there...tah dah, mask that should fit much better. But our faces sag and squish during the night depending on position, pillow, etc, so it probably will never be perfect.

I bought a bed with a headboard with a downward curve to it, hang the hose over that, and flip the pivoting mask-hose fitting upward. so far, pretty good.

Hi, @wiredgeorge -- if I remember correctly, about 6 hours is the minimum needed generally for the brain to do what it does whilst we sleep -- clean up, file memories, that sort of thing. Sleeping only 5 might be insufficient. About dreaming -- if you aren't dreaming, that is one issue; if you are but are not remembering that, that may be completely different. While researchers and philosophers and psychologists argue about the purpose of dreams, we do seem to think we need them...for something... All that aside -- if you are awakened as by the sudden and alarming nature of the dogs "barking like crazy," do you find your heart pounding or feel otherwise kind of "alarmed"? If so, that might account for the difficulty or impossibility of falling back asleep. I am finding in my informal questioning of others that people who have had highly-stressful early life experiences and/or jobs tend to be hyperstartle-able (if not outright diagnosed with PTSD) and that can keep your physiology hyper-sensitive... Having said that, there is a treatment for circadian rhythm disorder that includes depriving someone of the second-half of the night's sleep -- I tried it myself, and had a fabulous next day and wasn't tired or nappish as I thought I would be. So, for what it's worth, it sounds like something is definitely going on for you, and finding out how to ease back to sleep to get a basic minimum might be a really good idea. Good luck!

You said a friend gave you the VPAP -- that's the bi-level one, right? No sleep "specialist" has seen and evaluated you yet, correct? If that is true, then please realize it is possible to make things worse, not better, by using a machine (especially not even just a straight C-PAP) that hasn't been tuned to your needs. I am a big believer in the "patient" being involved in their own care, and in the usefulness of open source software like SleepyHead, where at least you can see what's going on, but I am VERY cautious otherwise. Glad to see at least you started with very low pressures, but yikes -- this is not something to mess around with lightly! And I agree with Sherry, call and ask about any cancellations. I hear some people "chicken out" the day of, so if you are that flexible, it might help!

Hey Dan, BNS here -- somehow I don't see my ID popping up -- I had a couple of nasal surgeries in 2015 to try to make that airway better, and my ENT suggested a rinse called Alkalol. It is not alcohol, despite the potention for confusion because of the name. It is a mix of pretty traditional substances -- herbs etc -- and I find that, if I follow his directions/the ones on the bottle, not only am I having no more sinus infections (good since I'm allergic to most antibios now), but it seems to help with keeping the nasal passages from getting too stuffy. I have been able finally to dispense with the 25 mg tab of Benadryl before sleep and just use the one Claritin. Some days, when I've gotten a nose full of more dust, dander, or moldiness than usual, I use my Neti pot with that NeilMed prepackaged mixture just to give a good flush. Then I use the Alkalol. So far, so good. I buy it online at vitacost, 6 bottles at a time, about a .75-1.25 cheaper than at the local drug stores and free shipping. I stay stocked.

@Jorja, I was mistakenly NOT diagnosed with complex sleep apnea and took years to get to the correct treatment. I'm trying the EERS treatment and so far, so good. Sustained cognitive improvements, fewer bad nights, but hard to keep the mask leaks down regardless what I do. Then another doc said she thought I had RLS. Nothing has ever showed up on a sleep study, however, and I just had another one in December.

@Jorja, thanks for the post. I agree, I wish the docs would more often trust that we know something is wrong, even if we aren't presenting the information they are expecting to hear, or haven't heard before... In the interim period between my first post and this comment to you, my treatment with my ex-sleep-doc hit the wall for me, and I found another doc and another treatment that -- so far -- is working much better. Better enough, in fact, that I can get back on here and check in. IF you can, try looking at your sleep via SleepyHead software -- I am a big fan as are many others who are into looking at graphic data -- you might find some interesting things....and come back here to find out more. Best wishes. And I am glad your doc went to the sleep conference. Big step in right direction.

yeah, that would be "mid-2015", sorry.