Common Issues w/ CPAP Use?

[ardenum]

I am mostly frustrated by the fact that we get treated for Oxygen saturation and not quality of sleep. My doctor thinks im doing wonderful because my %O2 stays at 97% at 10/8 Pressure settings. When I asked him to show me how much deep sleep I had during a sleep study he reluctantly did so showing I had zero stage 3/4 time. After which he pointed out it doesn't matter and has nothing to do with how tired I am, which we all know is bs, there's plenty of study out there showing the opposite.

Other is the fact he insisted on me using a nasal mask over a full face one citing full face was my reason for aerophagia, but didn't care that I had 95% nasal congestion during the year and during the study was one of those golden days without it.

I had a trouble breathing out on 17/15 and was literally blowing out into my stomach pumping it like a balloon. I had stage 3/4 sleep though unlike like on his 10/8. So After buying my own machine and setting it up 17/8 I average 5 AHI and average of 1h Stage 3/4 every night. Thank you.

I do have to shuffle between masks too though. I burn out pretty fast. I Use a full face one, a nasal and a dreamwear as I like to dynamically move during my sleep at some nights and stick my face into the pillow.

We should open our own Sleep Clinic anyone interested in doing a med degree?

[SarcasticDave94]

crowtor

Congrats, it sounds like you got a prize Duck there. That's my
Dave-ism for the doc that quacks BTW. I've been there with that first pulmonary doc I had. "My not so important data tells me you're doing GREAT. I deem it to be so, and it is." Yeah OK doc. Guess what? It didn't work doc...not until you LISTENED to your patient. Err.  

[Walla Walla]

Med degree?    Not I. I cut a dead frog open in Jr High. That's about my limit.

[SarcasticDave94]

Med degree?    Not I. I cut a dead frog open in Jr High. That's about my limit.

Does that make me a doc too? I had to do that. Seriously.

[kiwii]

Gosh, I wish we had an "Agree" button. There are so many well-written responses. I hadn't realized how frustrated I am with the whole system until venting here.

I am super offended (and frankly, outright angry) that 'treatment' is driven by meeting insurance criteria rather than patient needs. I think the main problem is that there is an entire industry set up to milk the insurance companies for all they are worth. No doubt this is evident in other areas of health care too, but it is disgustingly prevalent in sleep medicine.

Not to mention that folks shouldn't NEED to come to an online forum to get their machines setup properly.

Just so thankful to finally have a sleep doctor that is legit.

[SarcasticDave94]

This still reminds me of a 3 ring Wrongling Brothers circus comprised of Duck, DME, and insurance. Unfortunately, these 3 stooges attempt to cast type the patient as the clown act. IMO that's why we must always be the empowered patient that's equipped by being well versed in our own therapy requirements.



PS I'm not intending to imply all doc's, DME's, or insurances are bad. But just like bad car salesmen, it takes just a few bad ones to turn your opinion towards the negative.

[paulag1955]

You know, everyone, Lansinoh is just 100% lanolin and you don't have to buy it packaged as nipple cream.

[Fats Drywaller]

I've been spending some more time (still not enough) reading back in the threads that have fairly recent activity, and speaking as a newbie, I have to say that this one stands out as being among the more interesting general discussions lately (general as distinct from the help-with-therapy and case-studies threads).  It seems to me that anyone who is new to CPAP can learn a lot from the many detailed and thoughtful replies here to the question "What has your experience with sleep apnea been like, and what frustrates you the most about it?", so I wanted to say thanks to all of the participants.  The perspective is useful.  For any of us, the most important task is to get our own therapy dialed in, but once that has been done for the time being and we have some time to relax and look around and get the bigger picture, the sociology of it all will inevitably be of interest.

I can't contribute much useful from my experience (even if the OP were still collecting sagas for his project), because I'm somewhat like the OP in that my journey from symptoms to diagnosis to sleep study and beyond has been mostly uneventful.  My primary sleep-doc at the specialty clinic isn't so bad, and mainly I'm lucky to have an excellent, smart, conscientious PCP who made the original diagnosis and whom I can turn to if I eventually need a prescription or a referral or something, so I won't have to go back to the sleep clinic after the follow-up visit that's required by the insurance.  Some sleep-study techs and some employees of DME companies are not all that great, to put it mildly ... but from the beginning, mainly because of this excellent place, I've taken the approach of trying, without worrying too much about it, to minimize my involvement with them.  (Reminder to self: "This, too, shall pass.")  To me, they seem like necessary cogs in the huge organizational machine that eventually spits out at the patient's doorstep a prescription, CPAP machine, mask, supplies, and so on, like just another random branch of the corporate-capitalist empire for the exploitation of consumerdroids, which in the USA unfortunately it is.  So in that regard, I guess I'm one of the privileged ones among the rank & file of impatient patients.

Again and again when reading the discussions here, the most important general lesson is that the empowerment & education of patients is everything, and they must do some of that themselves, must take control of their own cases.  Without that approach to the operational side of the whole thing, a lot of us in that rank & file would be pretty much helpless.

[DreamBreather]

***Beyond dissecting frogs and nipple cream.... (too funny!!)

My main frustration, as I'm learning early enough on, is being treated like a number with a 'one size fits all' mentality, when I have more than 40 days of data to back up my findings.  I'm not being heard.  I'm being shoved in a box and scolded for being proactive in my own treatment, of which is about 3 decades late and has caused other serious medical issues.  Which I'm sure makes a clinician nervous when it comes to my treatment.  

Unfortunately, they depend on their textbook response with regard to AHI 'anything under 5 is considered treated'... and I still feel like crap, because they've decided their control of my machine is more important than my control, my progress and the data that proves otherwise.

It's no wonder 50% of the diagnosed population gives up on compliance!

[fs12]

I'll chime in by saying that the medical insurance system is a big frustration. In getting my CPAP machine, no one could offer me a machine without a cellular connection because of "compliance". I decided to bypass insurance for the machine and mask because the DME would only offer me one type of machine.

Self-education has been the most important thing. Many thanks to this forum.
Locking a patient out of their care is a terrible idea. And the view that the DME is the customer, not the patient.

The other thing I find hugely annoying is that it took me almost six months to get from a first appointment with a sleep doctor to actually having a CPAP machine at home. That is too much time wasted.

Lastly, I wish I had been diagnosed years ago. My PCP started doing a depression screening - why not a basic sleep screening?

I'm still new to all this, so these are my limited experiences so far... (And of course mask problems...)