CPAP failed, oral appliance failed, back to CPAP, help!

Hi there, this is my first post and I need advice. I am so tired (literally) of going the rounds of ENTs trying to get relief from my sleep apnea. Two years ago I was working on a contract away from home, and my ENT sent me home with a home sleep study kit that showed "moderate to severe" OSA so I was prescribed a CPAP machine. I was fitted for a full face mask because I'm a mouth breather. The mask was uncomfortable, of course, as I am a side sleeper (tried on my back but my tongue would loll back and plug up the airway) but I thought the CPAP was worth it if I could get a good night's sleep. Unfortunately I had problems all night long with the CPAP coming off or blowing so much air it woke me up and, if anything, I got less sleep than without it. But I stuck with it for half a year, even though I was woken up and had to adjust my mask four or five times a night. I eventually quit my demanding executive job because I was so exhausted I didn't feel I was doing my best, was experiencing confusion and memory loss, etc. and after a course of therapy I moved back home and took a hiatus from my career (my spouse is happy to support me while I try to start a new career as a writer, where I can sleep during the day or whenever I need to).

I went to a new sleep doctor because I was still exhausted with the CPAP and she examined me and said I did not need a CPAP at all, but an oral appliance, because I have what she says is a "small jaw." At night, apparently, my lower jaw was relaxing and retracting and causing the mask, which would have worked if my jaws were parallel, to slide off. So, I was fitted for an oral appliance and dutifully ratcheted the lower jaw forward in gradual increments. I experienced jaw pain but the appliance pretty much stayed put until it got to a place where my lower jaw was slipping out of the appliance. So then the appliance doc suggested a chin strap which I have been dutifully using for months now. I had a followup in-hospital sleep study a few weeks ago to see how the oral appliance was working and lo and behold, even with the appliance in place, I have mild sleep apnea (averaged out over the whole night) with episodes of severe sleep apnea during REM sleep, causing me essentially not to get REM sleep. So back to the drawing board.

The sleep doctor who prescribed the oral appliance, who originally told me I didn't need a CPAP because it was a lower jaw problem, now says I need a CPAP. I feel as though I've entered an alternate universe where logic makes no sense (the cumulative lack of good sleep probably helps with that feeling). She says that I can have a nasal mask or pillows even if I am a mouth breather who snores, because "the CPAP will keep you from snoring." I have had no experience with either the nasal mask or the pillows but am willing to give them a go, but I don't understand how a CPAP without a full mask would keep someone with a lower jaw that slides back at night from snoring or obstructing the airway. Does anyone have experience with this? Also, in a case like mine, would you suggest nasal mask or pillows?

Sounds like you have a difficult time, and some of the doctors don't know very much.

If you open your mouth while using a nasal mask, the air will escape out your mouth, and you will still have apnea events. No good. Now, there are some different full masks and a couple hybrid masks. So, there are some options to try. Most people have to try a few masks before finding the right one.

The good news is that there are a lot fo experienced cpap users here who can help you with finding the right mask and getting the cpap issues figured out. For example, most doctors and equipment providers only care about compliance - hours of use. So, they don't check the data and see if it is actually helping you or needs adjusting.

Please post your equipment info - machine model, current settings, and which mask you have. Also tell us what problems you had. The more we know, the more we can help you.

They call it the "practice" of medicine because no matter how long they practice, . . .
Now that YOU are "driving", you can finally get where you need to.
Register, stick around, welcome to the party, and all that.
Your symptoms sound a lot like mine, and cpap made a WORLD of difference!

As stated earlier, please enter your equipment using the user control panel in the upper left of the screen.
What is being described is "jaw drop" and it is best corrected with a soft cervical collar. I get mine at Amazon.com. A chin strap won't help much in your circumstances.

Hang in there. Lots of help here.

You will be back to the "gold standard" of cpap treatment. Just go into the DMEs office and tell them that if they don't give you an auto machine you will take your business elsewhere. DO NOT leave their office without a copy of your RX, you are entitled to it. If its the doc that told you "we don't do that" then he is in cahoots with the DME, its all about the almighty $$$$. And don't let the DME tell you that there is an upcharge for an auto.... that is illegal.
The best reason that you failed cpap in the first place is lousy advice...... there are so many masks out there that will handle jaw drop its not funny. Your doc made $$ off
you (or your insurance) by setting you up with cpap, then changed you to an oral appliance, now back to cpap...... what a crying shame he paid off his new Mercedes on you.
Good luck
Nan

Mark that post that said try the cervical collar, and get one from your pharmacy immediately - it will help you no matter which route you take and might make an immediate difference.

JDS74 wrote:As stated earlier, please enter your equipment using the user control panel in the upper left of the screen.
What is being described is "jaw drop" and it is best corrected with a soft cervical collar. I get mine at Amazon.com. A chin strap won't help much in your circumstances.

Hang in there. Lots of help here.

Thanks for the tip of a cervical collar, straps were giving me a headache, may be exactly what I need

keysgate wrote:a cervical collar

http://www.amazon.com/Carex-Health-Bran ... cal+collar

A local pharmacy that carries medical equipment should have these. I have never found them at the national chains.

ChicagoGranny wrote:

keysgate wrote:a cervical collar

http://www.amazon.com/Carex-Health-Bran ... cal+collar

A local pharmacy that carries medical equipment should have these. I have never found them at the national chains.

Thank you, after reading that went out to cvs and bought the same one, paid an extra $5 but will try it out tonight

keysgate wrote:Thank you, after reading that went out to cvs and bought the same one, paid an extra $5 but will try it out tonight

That's good to know CVS carries them.

What size did you get? I use 3-inch, but I am small and recommend 3.5-inch for most people.

ChicagoGranny wrote:

keysgate wrote:Thank you, after reading that went out to cvs and bought the same one, paid an extra $5 but will try it out tonight

That's good to know CVS carries them.

What size did you get? I use 3-inch, but I am small and recommend 3.5-inch for most people.

Not at home right now, didn't even know or look at that, just took the only one they had. Funny thing tho, after the first night, woke up without the sand in my mouth I know it's only one night, but it worked!

keysgate wrote:Funny thing tho, after the first night, woke up without the sand in my mouth I know it's only one night, but it worked!

If it is going to work, it should work the first night.

They are so much more convenient than chinstraps. The collars don't interfere with most types of headgear.

Plus, they serve dual purposes - holding the chin up and keeping the neck/airway in the best position.

ChicagoGranny wrote:

keysgate wrote:Funny thing tho, after the first night, woke up without the sand in my mouth I know it's only one night, but it worked!

If it is going to work, it should work the first night.

They are so much more convenient than chinstraps. The collars don't interfere with most types of headgear.

Plus, they serve dual purposes - holding the chin up and keeping the neck/airway in the best position.

Right, the chin strap gave me a headache. Wife say's, how you going to sleep with that thing on, but it was kind of comfortable really, I always had the blankets around my neck anyways, so that's what it felt like. Pretty cool, never would of thought of that.

What is truly baffling is that in Nebraska, you cannot buy cervical collars without a prescription.
However, I can buy online--and way cheaper.

keysgate wrote:

ChicagoGranny wrote:

keysgate wrote:Funny thing tho, after the first night, woke up without the sand in my mouth I know it's only one night, but it worked!

If it is going to work, it should work the first night.

They are so much more convenient than chinstraps. The collars don't interfere with most types of headgear.

Plus, they serve dual purposes - holding the chin up and keeping the neck/airway in the best position.

Right, the chin strap gave me a headache. Wife say's, how you going to sleep with that thing on, but it was kind of comfortable really, I always had the blankets around my neck anyways, so that's what it felt like. Pretty cool, never would of thought of that.

Would I still need a full face mask when using the collar? Or could I get away with some kind of nose pillow or something. I'm thinking my mouth would still open enough to let air out.