cpap rhymes with crap

I far prefer to have CPAP rhyming with crap than I do feeling like crap! I can't say I am delighted to be sleeping with a mask and hose all night, but more importantly I AM SLEEPING and even more important I am FEELING MUCH BETTER. While there may be alternative treatments, they are all either much more invasive and/or have far worse side effects than CPAP.

I consider myself lucky and have been able to accept and adapt to CPAP quite well. My AHI now averages 2.6 which is a major improvement over the 119 I had during my sleep study. I NEVER want to go back to how I felt before treatment and if that means wearing the mask and being connected to my CPAP I will gladly accept that.

I wonder how many of those that "failed" CPAP either did not have the kind of support that forums such as this provide, and/or had ineffective treatment and were unaware of it. I am sure many have a lot of trouble getting used to things, but I am sure that the health gains are worth the effort in the end.

TooGroggy wrote:Is it really that difficult to match a patient with a mask that works?

Yes... people are just so individual

TooGroggy wrote:Yes, I know one can buy mask "insurance" from cpap.com or borrow a mask from nation tv or trade masks with other CPAP patients. But all that shows is that manufacturers are failing to deliver products that work.

Since the products clearly do work, even if they all don't personally suit you, your assertion is fundamentally flawed.

Some things in life are just difficult, no matter what.

Well, there is that stimulator implant thingy on the horizon, but I'll give them time to work the bugs out before jumping from the CPAP ship.

tschultz wrote: I wonder how many of those that "failed" CPAP either did not have the kind of support that forums such as this provide, and/or had ineffective treatment and were unaware of it. I am sure many have a lot of trouble getting used to things, but I am sure that the health gains are worth the effort in the end.

Lack of support has to be a major factor in abandoning CPAP. Unfortunately that "lack of support" can come on many, many levels:

Ineffective treatment without knowing it has to be a major leading cause of abandoning CPAP, but is at its essence a lack of support issue: Manufacturers keep making these "compliance only" machines and DMEs keep issuing them to unsuspecting patients. Doc says you'll feel better in 2--4 weeks and you still feel like crap and have no access to efficacy data---and no support from doc or DME for figuring out why you still feel like crap---that has to lead to alot of people abandoning CPAP.

Discomfort from aerophagia and insomnia problems caused by CPAP---with little or no support from doc or dme to alleviate those problems? Has to lead to many folks abandoning CPAP: It's extremely difficult to continue with a therapy that seems worse than the disease; it's impossible to do this if you have no way of verifying the therapy is working and subjectively its much easier to sleep without the CPAP than with it, and hence you can function as well or better without the CPAP.

Expense of CPAP is also an issue I think: With my insurance company, for example, I've got 50% copays on the machine, the humidifier, and most of the replacement parts: All masks except the first---50% copay AND restricted to one new headgear every six months. And the nasal pillows? Replaced once every three months. Hose? Regardless of how many holes it has in it---insurance will pay (50%) for a new one once a year. Now don't get me wrong: I'm lucky---I can afford my copays and I can also afford to buy whatever I need out of pocket. But what about those that can't? And what about those who need to try a half dozen or more masks before finding one they can tolerate? How much of that come straight out-of-pocket of the user?

Lack of in-person support groups and genuine patient education---on par with what is routinely available for newly diagnosed diabetics. It's difficult enough to be compliant with a therapy that causes serious and (initially) disruptive changes in your lifestyle when you have a quality understanding of your condition---what caused it, what it can do to you if left untreated, how the proposed therapy works, and what common problems typically arise in starting therapy and how to deal with them. It's got to be even harder when critical knowledge about any one of these things is lacking. And quite frankly, the typical sleep doctor chat with newly diagnosed OSA sufferer doesn't begin to convey any real knowledge about most of these things.

kteague wrote:Well, there is that stimulator implant thingy on the horizon, but I'll give them time to work the bugs out before jumping from the CPAP ship.

But it only works for OSA that's caused by the tongue causing the blockage. If the problem lies elsewhere in the throat---particularly if it's an upper palate problem, this contraption will still be a no-go even after it is perfected.

And some of us have never been told exactly where the problem(s) with our upper airway actually are.