still having problems after 2 years

[mamaguinnie]

I've been on CPAP for over 2 years now, and I still can't say it's a success. I'm diligent about using it every night anyway. Here are my specific problems:

1. I wake with a very dry mouth. I suppose this means I need a chin strap?
2. I haven't found a mask that I'm happy with. I've tried:
Puritan Bennett Breeze and Opus 360; not satisfied with the noise, fit & leaks.
Respironics comfort gel, petite --too small, pinches the upper part of my nose, partially closing off air passage.
Flexifit 407; too big -- it covers from high on bridge of nose to partial upper lip coverage. Blows air in my eyes.
There was a nasal pillow-type product I tried that had no headgear, just a piece of rubber tubing that was supposed to go around the back of the head. The tech cut the tubing in half, told me to tie it so it would go behind each ear instead. What a disaster! There was no stability to this, and it fell out of my nose. I couldn't return that one fast enough! That's the only one I've been able to return. I've had to pay for all the others. ARRGGHHHH!!!
So far, the Flexifit 406 (petite) gives me the best results, but I have a permanent red impression on the bridge of my nose, the ventilation holes whistle when I exhale, and I have to position my head and neck "just so" to get the best seal. This makes it difficult to get to sleep because I'm so concerned with the position of my neck and the whistling air. I've tried tightening, loosening, moving the headgear up, down, etc.
3. I'm getting a lot of abdominal distension from air going into my stomach. I've lost 50 pounds in the last 7 months, so is it time to change the pressure?
4. I wake with headache and jaw pain from grinding my teeth (I know it isn't the CPAP causing this, it's been going on far longer than that, but it adds to the problems).

I'm scheduled for a follow-up visit at the sleep center in a couple of weeks, and I want to go in there armed with the knowledge to ask for what I need. The last time I was there, I asked about a dental appliance to use instead of the CPAP. She pointed out the fact that over the counter appliances and anything you can order without a doctor's scrip is only approved for snoring, not OSA. The type of appliance I would need would probably not be covered by insurance and is very expensive. The research I've done supports her position, but wonder if these appliances may make my TMJ better? Should I use an OTC oral appliance in addition to CPAP to protect my teeth and reduce the jaw pain?

Does anyone have experience using the CPAPPRO "nomask"?

I *think* my pressure is set at 11 -- if that makes any difference. It has been changed several times in the past 2 years.

I'm a difficult case because I have insomnia along with fibromyalgia making me a "bad" sleeper.

Does anyone have any recommendations for my next visit? I've never had a follow up sleep study. Should I ask for that?

Thank you in advance for listening to my questions and concerns. Please don't make me feel stupid... I'm already there!

~J

[Uncle_Bob]

You are not stupid, your are just stuck a little by the sounds of things.

First up, your machine is a bare bones machine that just tracks compliance hours. In your situation a full data capable APAP machine will be able to put you firmly in the driving seat with regards to your therapy. Are you in a financial position to upgrade? Reasonable prices can be found on cpapauction.com. Or of course you could go back to your doctor who might recommend another study and provide an new script for one through insurance.

As you mentioned your insomnia there are serveral physical and mental factors that disturb our sleep. I recommend you read this book for enlightenment in these areas

Sound Sleep, Sound Mind: 7 Keys to Sleeping Through the Night

http://www.amazon.com/gp/product/047165 ... ss_product

Also dry mouth can indicate mouth breathing, you could use a chinstrap or mouth tape. Personally i use the Pur Sleep Pap Cap chinstrap, its a little more expensive but it works and lasts a long time.

Have you tried the Swift LT? its a very popular nasal mask and very adjustable too. I comes with all the 3 sized pillows so you got a good chance of getting one that works for you.

[jmelby]

1. I wake with a very dry mouth. I suppose this means I need a chin strap?

Very likely, yes... you are probably leaking from your mouth, which can certainly have an effect on your therapy and comfort. I use a PapCap for a chinstrip and find it works very well and is comfortable.

Regarding masks, I would personally recommend the Resmed Activa LT... I didn't see that in your list. At your visit, ask to try a number of different masks and maybe even see if they will lend any to you to try out overnight before deciding on a new one to purchase.

[mamaguinnie]

Thank you Uncle Bob and jmelby for your suggestions. You both suggested the Papcap. Can you use it without the "hat"? it seems like a lot to have on my head in addition to my headgear. The pictures make it look like there is a lot of gathered material on the back of the head where it rests on the pillow, not to mention what it will do to my "do". Just kidding about the "do" part, but serious about the rest. Bob, I'll look into that book too. I already have a whole darn library, might as well add to it.

Thanks again,
~Jan

[BlackSpinner]

You may want to try a Hybrid by innomed. It has nothing on the bridge of the nose, pillows and a mouth piece. It comes with 3 size pillow and 3 sizes mouth piece. It can be a total bitch to get all the 3 straps (and sometimes an extra one) and figure out which size you need where but once you have it figured out it works really sweet and the chin flap deals with the mouth issues. With this mask I can sleep just about on my stomach with the help of some pillows (search Falcon position) which sometimes helps with the air swallowing issue. But with a mask you need to sleep on the edge of a pillow. Some people take a bread knife to a foam pillow to create the perfect pillow.

Many people use a simple over the counter mouth guard to deal with the grinding but you should check with your dentist first.

[Uncle_Bob]

Thank you Uncle Bob and jmelby for your suggestions. You both suggested the Papcap. Can you use it without the "hat"? it seems like a lot to have on my head in addition to my headgear. The pictures make it look like there is a lot of gathered material on the back of the head where it rests on the pillow, not to mention what it will do to my "do". Just kidding about the "do" part, but serious about the rest. Bob, I'll look into that book too. I already have a whole darn library, might as well add to it.

Thanks again,
~Jan

You have to use the Cap, that is what the chin strap part attaches to. I know it looks like a lot to wear but i found the pap cap actually helps stabilize the mask straps and they don't slide around on my head like they did without it.

[Julie]

You can get a really thin plastic thingy to wear at night for tooth grinding and it shouldn't interfere with your Cpap. It's like a cover for your teeth - fits right over them and protects them. Ask a pharmacist about it.

[Hope1952]

I've been on CPAP for over 2 years now, and I still can't say it's a success. I'm diligent about using it every night anyway. Here are my specific problems:
4. I wake with headache and jaw pain from grinding my teeth (I know it isn't the CPAP causing this, it's been going on far longer than that, but it adds to the problems).
~J

My dentist made a dental splint which I wear over my upper teeth and looks like a retainer someone might use after having braces removed. I had to pay $500 out of pocket for it. It prevents me from clenching my teeth in my sleep and has been a great remedy for TMJ pain. I got it before cpap, but still use it now because if I don't, I have jaw pain again.

[sunnyway]

I've found happiness with total face masks after trying about a dozen others. I also have fibromyalgia and chronic fatigue syndrome. I take Lunesta at bed time to help with sleep, Savella for the fibromyalgia and Nuvigil for the fatigue that persists despite using the CPAP. I feel NORMAL for the first time in ten plus years.

[Slinky]

You seem to have a crappy local DME supplier. Your CPAP is paid for by now. Consider dumping them and finding a better one. Start by calling your insurance company and asking them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than this one!!!

Resmed, Respironics and Fisher & Paykel all will replace FREE to the local DME providers most of their masks that clients have tried and not been successful with IF the DME provider fills out a form and returns form and mask W/IN 30 DAYS.

I'd start by having a new titration study given the weight loss (CONGRATULATIONS, NOT an easy thing to do!). I'd make it clear to the sleep doctor that this time around I would prefer that he script an APAP from the get-go and hopefully he will be agreeable to doing so. AT THE VERY LEAST I would INSIST that he add "access to Leak, AHI, AI data" and "full face, nasal cushion, nasal pillows or oro-nasal mask of patient's choice" to the script. I would also INSIST that he give me the script so that "I" could shop my local DME provider options to provide a more lenient mask exchange policy AND a more interested, knowledgeable and helpful RRT.

PLUS I would ask for a copy of the doctor's dictated results (1-2 pages each) AND the full scored data summary reports w/condensed graphs (5+ pages each) from EACH of my in-lab sleep evaluation and titration PSGs. These are part of your medical records and as such you have a LEGAL RIGHT to copies of them under HIPAA, assuming you are in the USA.

THEN, whilst shopping my local DME provider options I would make it clear up front that I was not impressed nor happy w/my original DME provider (w/o going into details) and (just in case your sleep doctor wouldn't cooperate writing the script for AT LEAST a fully data capable CPAP (access to Leak, AHI, AI data)) that I be provided with an APAP. The providers have a greater profit margin if they can get away w/pawning off an entry level, compliance data only CPAP, so there is bargaining room for both of you if you ask for an APAP and if necessary you can settle for a fully data capable CPAP and both of you end up w/an acceptable compromise. But chances are good once they know you aren't bashful about switching providers they will provide an APAP. Be diplomatic, BUT BE FIRM.

Good luck and God bless!

[brazospearl]

mamaguinnie, welcome to the forum! When somebody has been compliant for 2 years and is still having these problems, it's a pretty sure bet you've got the wrong machine, wrong settings, or wrong mask. Or a combination of all 3. It's clearly time for a fully data capable machine, which will allow you to track your progress and determine your own settings. If you don't have leak data you can't know if all your therapy air is doing it's job or escaping. My guess is you're breathing through you mouth, and all that lovely air is not helping you; papcap, chin strap, taping, or a full face mask would help solve that problem. But without data, you're just flying blind. A new sleep study might help, but with a fully data capable machine you can pretty much do the titration yourself. Get your current prescription from your doctor, send it to cpap.com, and buy a machine that'll change your life.

[mamaguinnie]

Thank you, responders to this post, and to everyone else on this site for opening my eyes. I do have options that haven't been offered to me. I'll make it clear that I am the one in control here, as in every other aspect of my health care. If I don't, no one will, and I already know that to be a fact. I'm quite ashamed of myself as a medical professional (RN) to have allowed this to go on for so long, but I've been pretty beat down for the past 3 years with multiple health and family problems. No excuse, just the facts.

Thanks for the warm welcome, I hope to make some useful contributions to someone else in the future, and hopefully find a few friends along the way. For now, I'll continue to read and learn!

~Jan

[cobra4x4]

If you are possibly breathing through your mouth and hate full face masks then I suggest trying the Mirage Liberty.

http://www.resmed.com/us/assets/images/ ... y/07-l.jpg

It looks like a combination of a mouth only piece with nasal pillows. I can't comment further on it as I only use nasal pillows (Swift FX), but I'm sure there are a few members here who could give their take on this mask.