Diagnosed with OSA but won't use CPAP. Why?

I have a follow-up appointment with my doctor next Monday and I do plan to discuss the "brick" that I received. I've sort of assumed the blame for the brick belongs on the DME. The doctor wrote a prescription for a "CPAP with humidifier set to 10cm with Cflex 3". The DME chose to dispense the absolute cheapest, bottom-of-the-line unit.

Of course the DME chose the cheapest bottom of the line unit. They take absolute advantage of the fact that most people stumble upon their DME absolutely naive, expecting the DME to do the right thing for the patient. But the DME is not in business for us, no matter what they claim. So we must be our own advocates and NOT sit back allowing them to choose for us.

SleepyToo2 wrote:"Cpap challenged"? "Struggler" or "struggling with cpap"? "In difficulties with cpap"? "Looking for cpap solutions"? Of course, the last one assumes that they are still looking. Sometimes, the tough-love "quitter" may be entirely appropriate for those who try for one night and say "I can't do this!"

+1

And I say that as someone who appropriately was a "struggler" who was had "difficulties with CPAP" and was "looking for CPAP solutions" during the first six to nine months of PAP therapy" and who told more than once that I had "failed at CPAP" by the PA who was responsible for providing my follow-up care at the sleep doc's office. All while I never missed a single night of PAPing ...

I think it is critically important to distinguish between

• those who are having real serious problems with therapy, but who continue to try each night to make this crazy therapy work;
• those who have really tried for months (or years) to make PAP work, but still cannot manage to get a half-way decent night's sleep and who are seriously looking at trying to manage the OSA through an oral appliance or other therapies that are known to work, albeit not as effectively as PAP;
• those who give up way, way too soon because they don't feel better immediately and after less than a week on PAP, all they can say is "I can't do this" or "I won't do this"
• and those who won't even consider using PAP because they can't stand the thought of being tethered to a machine at night.

robysue wrote:

SleepyToo2 wrote:"Cpap challenged"? "Struggler" or "struggling with cpap"? "In difficulties with cpap"? "Looking for cpap solutions"? Of course, the last one assumes that they are still looking. Sometimes, the tough-love "quitter" may be entirely appropriate for those who try for one night and say "I can't do this!"

+1

And I say that as someone who appropriately was a "struggler" who was had "difficulties with CPAP" and was "looking for CPAP solutions" during the first six to nine months of PAP therapy" and who told more than once that I had "failed at CPAP" by the PA who was responsible for providing my follow-up care at the sleep doc's office. All while I never missed a single night of PAPing ...

I think it is critically important to distinguish between

• those who are having real serious problems with therapy, but who continue to try each night to make this crazy therapy work;
• those who have really tried for months (or years) to make PAP work, but still cannot manage to get a half-way decent night's sleep and who are seriously looking at trying to manage the OSA through an oral appliance or other therapies that are known to work, albeit not as effectively as PAP;
• those who give up way, way too soon because they don't feel better immediately and after less than a week on PAP, all they can say is "I can't do this" or "I won't do this"
• and those who won't even consider using PAP because they can't stand the thought of being tethered to a machine at night.

Hi RobySue,

According to the study on dental appliance I have posted in previous posts, for most mild and moderate ranges, the success of getting the AHI below 5 ranges from 60 to 75% with the higher success rate belonging to the mild ranges. Severe ranges are between 30 to 40%. So people might not want to automatically assume that one wouldn't be as effective. Alot also depends on the skills of the sleep medicine dentist which is a whole other post.

Regarding folks who quit after one day, maybe they don't see any other options and are simply overwhelmed. Same with folks who can't stand being tethered to a machine.

Sorry that PA labeled you a CPAP failure. Not exactly a great way to encourage compliance.

My current sleep doctor who is good in many ways also used some negative terms in the medical summary report. I intend to see a reply with my areas of disagreement in very neutral language.

Goofproof wrote:

Fizzled wrote:

Julie wrote:Are you looking for an excuse not to save your life? The thing is, this forum is for people who are on Cpap, or at least trying their best to make it work. I don't know how many non-users you'll find.

I'll jump in.

I recently sold my machine to a board member because I gave up on it.

I was getting less sleep with it than without and everything about the experience drove me nuts. Though, it did prompt me to drop weight, which has helped substantially as far as sleep quality and energy levels go.

If I could use it, I would probably benefit from the CPAP. However, I can honestly say that in the grand scheme, I'm happier without it than with.

No doubt you are happier now, ask yourself in a few years when you've wrecked your health, or had a stroke, or found a tree your car couldn't roll over.

Maybe if you survive long enough you will learn that things you do now will affect your future, the choice is only up to you. Enjoy today, they only come one at a time. Jim

I've pretty much for eternity always had issues getting to sleep (which,CPAP definitely DOES NOT help with). I'm talking 1-2 hours to fall asleep every night. When trying CPAP this pushed out to 2-4 hours even using OTC sleep aids (and, I'm not getting into the 'scrips for this). When I did fall asleep I would wake up at most a few hours later, rip off the mask without even realizing it the next morning. I slept less and felt worse on CPAP.

My sleep quality has been poor the last few years, but I never had daytime fatigue problems with 8 hours + before I went from 5'8" 125 pounds to 183 pounds (basically, encompassing the range of BMI near underweight to upper tier overweight). This occurred over about the last 3.5 years or so. Also in that time I started going to the Gym and eating a lot more calories, but a lot of it was excess weight.

I've cut 16 pounds in the last two months and my fatigue issues have gone down. I also found that side sleeping/stomach down works great (when I can stay side/down; I'm naturally inclined to be a back sleeper) and almost no symptoms present.

So, yeah, I'm going to keep on the path I'm on and I am happier without CPAP. Not the solution for everyone, but it works for me.