BrainsNeedSleep

HI -- I have been using PAP since 2008 and just this past 2015 had 2 nasal surgeries and one balloon sinuplasty -- and I was carefully instructed NOT to use the CPAP for several weeks afterwards. This was pretty awful as I literally fall apart after about 10 days without it...4 weeks was awful. I think my ENT was being either very very cautious, or didn't really "get it" how badly I needed to stay on it.

If you were not diagnosed with your sleep disorder until you had had it for a long time, maybe even for years, think about your past appointments with your primary medical-care contacts, and think about:

What question do you wish they had asked you, that you think would have gotten your sleep disorder diagnosed early on?

I am asking because I am one of the patient volunteers on this project and I am very curious about possible new screening methods to get people diagnosed sooner.

For example:

After spending many, many years trying to get a doc to investigate what was going wrong, I finally got diagnosed in my 50's. But I had been asking very specifically about sleep for decades, and the time I remember most vividly was when I went to a doc when I lived in Boston, and said I couldn't sleep and was desperate for some. I was already having some constant exhaustion, mental slowing, difficulty making certain decisions and analyzing some information, increased clumsiness, etc...

MD's first question: How much coffee are you drinking?

My response: (to add up how much I had at home, 2 big mugs, then the half-cups at the hospital, where I worked, that nasty, over-heated brew you find in the back room at nurses's stations...)

Me: 10.

MD: There you go. Quit drinking so much coffee!

Me: oh.

MD: (discussion of weaning vs. cold turkey)

Me: ok.

Result: sometimes when you hear hoofbeats, it IS zebras, docs! And sometimes the answer is the egg before the chicken...

But I couldn't think well enough to ask the obvious question -- why do I need to be drinking so much coffee? -- to him in that appointment; only later, when I was too tired to call him back...it dropped down my To-Do List...

But I can point to the weekend I quit caffeine cold turkey to the speeding up of the decline, the slide down the slope from simple not-good functioning to eventual utter crash.

I was drinking coffee unwittingly because it is known for helping people's brains work a little better with routine tasks, so small doses throughout the day helped me limp along a little better -- for a while.

-----> So what question would YOU like to have had your physician/PA/APRN ask YOU that you think would have gotten your sleep disorder diagnosed when you think it first showed up? Thanks!

I have spent the past year+ trying to get my sleep doc to pay attention to the fact that I have NOT been doing well despite having an AHI bouncing along around 5. It was SleepyHead software (that another patient helped me -- dull-witted -- to install on my laptop and get to work) that showed me EXACTLY what was going on.

An AHI of 5, or 5 events per hour, can be as relatively mild as 5 10-second hypopneas scattered individually through each of your hours of sleep, or it can look like the following, where the numbers alternate between seconds of obstructions OR centrals and the number of breaths I take between each event:

starting with an event: 23 <2 18 1 28 <3 17 1 21...

That's 5 events in under 5 minutes, with max 7 breaths between them.

AHI is absurd as a descriptor of quality of sleep, and it was only after I read over the phone to my sleep doc an actual (similar) string of numbers could I convince him to order a pulse oximetry test and now put me on oxygen at night until SOMEone can figure out how to treat the centrals.

Don't ask. I am beyond frustrated, but SleepyHead may, literally, have been a lifesaver.

And there are lots of helpful people on a certain other forum that's been around for many years to help with SleepyHead.

Be sure to donate to the saint who developed it and gave it to the world for whatever you can afford to pay.

If I remember correctly, the "trick" to the didgeridoo being effective was not only the discipline but also learning something called (?) "circular breathing," something I was not quite able to do. However, I had always wanted to learn to play the Irish pennywhistle/tinwhistle/fipple flute, so picked that up, wondering if that would be useful. The "throating" technique, wherein you push the whistle up an octive by doing something in your upper throat, seemed to have been useful. My first lab study showed avg 15 obstructions an hour....latest Sleepyhead data shows 1-3 a night. And yeah, you have to be diligent, but that's easy if you are doing something you love, and I love that whistle. Alas, my dog does not.... / I would dearly love to see a robust study done on the didgeridoo, the whistle, vocal lessons and see what, if any impact each may have.

Sorry, Que, no help for you yet...I would ask the Stanford lab for a referral to someone else. As they are widely considered one of the two best in the country, that might be hard to get, but give it a try. Failing that, try calling a Dr Brandon Peters, a sleep doc in Novato -- I believe he trained there, and he writes on sleep for About.com and has been very helpful. He could at least help steer you. By the way, how long IS the wait at Stanford? I was thinking of going there myself....from the east coast!

Wow, fantastic reason for the existence of both this research intiative and this website! Thank you SusanR for posting.

Dear SeattleGrant - I am newly using the ResMed brand new bi-level device and just started using nasal pillows, instead of my full-face mask, since I have had one of 2 surgeries to fix a non-functioning nose. The full-face mask allows you to still receive the air you need if you stop breathing through your nose (for instance, it gets congested during the night) and start breathing through your mouth (for several reasons). I find the particular nasal pillow mask I have extremely comfortable except when my allergies override my antihistamines -- then I swap over to the full-face mask to be sure I am getting some air. I recommend always using the humidifier unless you live in an already-humid and warm enviro. It makes a huge difference.

Also, if people's airways allow (and remember your airway begins in your nose -- not all docs pay attention to that), the nasal-pillows versions are much less claustrophobia-inducing than the full-face masks, or even the nose-only masks (like a mini full-face in shape, only it doesn't cover also your mouth). I know a number of claustrophobic people who could not tolerate PAP treatment until their noses were examined, fixed where necessary, and they could use the pillows. Also, having the pressure reduced when you breath out helps reduce the claustrophobia, but that probably belongs on another thread.

Don't forget to pay attention to your nightly AHI numbers, and compare how you feel upon awakening with the numbers, which should always be below 5 (which I think is still too high, but is presently industry standard for "okay") -- do you feel better when the numbers are down? Are your numbers ever higher, and if so, do you notice anything? That machine you have should give you plenty of data, and if you go online and sign over your data to ResMed, they will give you access to nightly data that you cannot see on the machine. I have not yet done that, but my doc shows me some of the graphs in his office.

The apneas are not always the only thing that need management in your sleep -- but you have a machine that should help you a great deal in managing better. Good luck!

Oh, boy, what a great ask/suggestion -- some of us are putting together a reading list! So check back in a while, but until then, as a patient myself ... If you want to read some actual research, go to scholar.google.com and do a search. But the book(let) that made me misty-eyed with gratitude was by Mack Jones, MD, formerly a neurologist who himself had apnea and went through misery getting it treated: Deadly Sleep. There are other books. Try the website of Dr Stephen Park, an ENT who is generous with hugely helpful information, resources, and interviews with "experts" : doctorstevenpark.com

Also the American Sleep Apnea Association site at sleepapnea.org can be useful. Depends on just how much and how detailed the info is that you want. Good luck!

Susan, Thanks for the helpful reply! Will see if I can find that study you mention.

I wonder if patients could self-select into which experiment they were interested in, my guess is one's interest would contribute to likelihood of efficacy, if there were any to be had! I'd do the didgeridoo or penny whistle. "Side" effects for the latter at least would be all positive!

And I love the idea of inter-disciplinary approaches.

Alas, too much in current health care is about neither patient health nor care. There are some really good DMEs out there and I hope you are able to convince yours to do the right thing by you. If they look at you like you have 2 heads when you gently insist on fitting, etc, may you be heartened by the thought you are not alone in this. Until we have our masks 3-D printed for our own faces, it's a trial. 😄. Good luck.