It's been 2 months I've been trying everything I can think of, but the masks just don't fit once I totally relax.  They are fine until about 1 1/2 hour's time. Then the leaks are there and I can't get them to stop, unless I fiddle with it long enough that I am totally awake. Then it fits again, until I finally get seriously relaxed, then the leaks get going again.

I think I am wasting my time and the whole promise of CPAP help is nothing but a tease and an impossible dream.  I got better sleep before diagnosis. I've tried 4 masks already----

It seems to me that a dental appliance plus sleeping upright in my recliner may be the best way to go.  AHI of 88----no REM sleep on 1st test. But then again, they did force me to lie down-----So naturally the results were bad.

I may have missed something; you are saying that you are giving up on CPAP because the masks that you have tried don't work for you?   Rather than trying another mask, you are considering trying an oral device and sleeping upright - when you are aware that it won't be a satisfactory solution?

AHI of 88 is severe apnea.  Oral device is not likely to be helpful, and sleeping upright only marginally so.  

Try it/them, but do yourself a favor and try them in conjunction with an in-home study and oximeter.  Then you will have a reasonably accurate basis for comparison, rather than a perception that your sleep is 'better'.  If you want to take care of your health, be fair to yourself on this one.  Yo need to KNOW if an alternative is better based on measurement of your desats and apneas.

I know full well the long haul of being able to sleep with CPAP and the frustration of constant leaks.  I've lost count of the masks I've tried, I know I've tried at least 9, and I think maybe a couple more.  The mask I'm using right now shows the best promise in being leak free for me.  (I have severe insomnia and any little thing -- or nothing at all -- wakes me up.  Like you, I sure don't need MORE reasons for waking up than I already have.)

So what I'm saying to you is explore your options, including more masks (go through 20 if you have to!), and be sure to get an in-home study in conjunction with any non-CPAP therapies you may try.  Be as objective as possible and get the best medical care and treatment you possibly can for your apnea.

Blessings,
--pseudonym

What I am saying is that I can't see how CPAP can possibly work for me.  It seems that my face changes drastically when I truly relax---therefore anything that fits even when I am semi-relaxed won't fit once I am truly asleep----------This doesn't seem to be a situation that can be remedied.

The statement that dental appliances won't do much is just a generalization-----I have profound jaw and tongue issues and have found an inventor dentist who is pleased to work on me.  I think it is only rational to think there would be more likelihood of success with a customized appliance that fits on my jaw, a section of me that does not change drastically in relaxation----

Frankly, I'm rather tired of "experts" who tell me that dental appliances aren't effective without even bothering to look in my mouth.  Of course that is the value of CPAP to health care providers.  It is a generalized device that can be dispensed without all that much custom care, and if it fails, the experts can always blame the patient.

Well, Caroline, if you do indeed have profound jaw and tongue issues it may well be that a customized dental appliance WOULD help you, MAYBE even eliminate the need for CPAP therapy. I "would" be sure that I had more than one opinion on just what type of dental appliance is needed, its possible a customized one would not be necessary (just a suggestion in consideration of your pocket book).

I wouldn't discourage you from fully exploring a dental appliance. What I WOULD discourage you from is surgery to the jaw (and UPPP if that were suggested) w/o FULLY and CAREFULLY exploring and weighing the procedures and the "success" rate AND the surgeon's experience. Surgery results can NOT be undone. And ALL surgeries create some scar tissue.

That being said, as others have cautioned, the absolutely ONLY way to determine the success of any dental appliance or surgery is sleep evaluation AFTER healing has taken place (in the case of surgery). It is possible that one or the other, applilance or surgery, will provide some relief, and possibly complete relief of SDB during sleep. BUT the only way to be SURE, for you own health sake, is to be re-evaluated. And really, the re-evaluation SHOULD be a new PSG rather than "just" an at-home oximetry and evaluation.

I wish you well. I understand your need to pursue the dental appliance option. Just do NOT close your mind to xPAP therapy entirely as it MAY be necessary in addition to the dental appliance, even if it is a customized appliance. Yours is NOT the only facial tissue subject to the law of gravity. That holds true for EVERYONE. And, yes, finding THE right mask for YOU can be an especially frustrating task for many of us, some moreso than others. The local DME suppliers can be a real PITA and detriment to finding that right mask but firmness, tact, diplomacy and pure determination can overcome that if necessary. Be sure to check the Mask Fitting Sticky.

Good luck and God bless.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed's new VPAP Auto. Humidaire 3i, Simplicity & Micro mask, ResScan 3.4 software, SPO 7500 oximeter.

Crohnie--


Don't worry--surgery is not for me.  I've known I had these problems since childhood, and we rejected jaw surgery after checking into it when I was 14,22,31.  I am now 62.  Also tissue surgery was done on me for these issues when I was 5.  It helped for a while, but by my teen years the problems were back worse than ever. So I am very experienced with all this.

What I haven't experienced is having a skilled dentist inventor willing to work on my case.  I've consulted 20 "experts" who weren't willing to attempt therapy----now I finally have one!

I keep trying CPAP, but it is only building my aversion to it. I can't see that it can ever work. I'm wondering if it doesn't make more sense to just put it aside for a while. I hate it more and more.

caroline wrote:

What I am saying is that I can't see how CPAP can possibly work for me.  It seems that my face changes drastically when I truly relax---therefore anything that fits even when I am semi-relaxed won't fit once I am truly asleep----------This doesn't seem to be a situation that can be remedied.

This seems very bizarre.  Are you saying your facial bones move about when you are sleeping?  

What masks have you tried specifically so far?

caroline wrote:

What I am saying is that I can't see how CPAP can possibly work for me.  It seems that my face changes drastically when I truly relax---therefore anything that fits even when I am semi-relaxed won't fit once I am truly asleep----------This doesn't seem to be a situation that can be remedied.

I know what you're saying, I experience it too.  So I make sure I *keep* my adjustments going forward, even though they seem too tight when starting out the night.  Little by little, as I have adjusted my mask, it is leaking less and less during the night.

Have you tried that?  If you are re-adjusting each time you go to sleep instead of starting out with the adjustment you made during night, you're setting yourself back (IMO).

Blessings,
--pseudonym



Last edited by pseudonym on Mon Apr 21, 2008 2:04 pm; edited 1 time in total

CrohnieToo wrote:

BUT the only way to be SURE, for you own health sake, is to be re-evaluated. And really, the re-evaluation SHOULD be a new PSG rather than "just" an at-home oximetry and evaluation.

Quite right, CronhieToo, I mentioned the in-home because of her wanting to sleep upright in a recliner with the oral device.  Going to be hard (though maybe not impossible) to get a lab PSG done under those circumstances.   Of course the lab would be much better.  But the point was not to use a subjective opinion to decide whether the apnea has been fully treated.

Blessings,
--pseudonym

pseudonym wrote:

I make sure I *keep* my adjustments going forward, even though they seem too tight when starting out the night.

This is a good point.  I haven't adjusted my mask Velcro in weeks...once you get it right, just "unclip" so the settings don't change.

My dentist is a real pro and insists on at home tests before and after the device is fitted------He wants to prove that special cases can be helped substantially by dental appliances---

I vary a lot from night to night.  Any sleep test is just a snapshot of one night's conditions.  I find it amusing that everyone talks as though a sleep test was an absolute depiction of your sleep pattern until some device has created an intervention.  My sleep gets disturbed by seasonal patterns, the amount of daylight and brightness of the sun is a big factor.  I have a painful back which varies a lot in how it effects me. There are many other variables------

The sleep test in the lab showed horrendus results, but they forced me to lie down on  a regular mattress.  I NEVER SLEEP THAT WAY!  I use a cold waterbed if I lie down, but the last few years I have slept in a recliner.

The person who asked if my facial bones move around---No, of course not--but my muscles in my face change dramatically. It is obvious.  When my Dad died, he didn't look anything like himself, his cheeks seemed to have disappeared and my face is like his.  I've seen a large number of dead folks in caskets, but he looked more markedly changed than any others I've seen------ It's my guess that this factor creates special problems for me.

Really, the law of gravity changes the lay of the facial muscle, tissue and skin for ALL of us. You are NOT unique in this respect at all. That is the very reason a mask should be fitted WHILE YOU ARE LAYING DOWN W/THE CPAP PRESSURE TURNED ON. Those of us who are overweight and/or older don't have the muscle and skin tone we had when slimmer and/or younger.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed's new VPAP Auto. Humidaire 3i, Simplicity & Micro mask, ResScan 3.4 software, SPO 7500 oximeter.

If you are using a full face mask, you may want to consider a nasal mask because they usually have less of a tendency to leak.  From the posts I read on here, a significant number of people have leak problems with a full face mask.

That is true, BeardedOne, the full face masks are the most difficult to fit w/o significant leaks. If one can tolerate the more direct pressure, the nasal pillows masks seem to be the most successful in reduced leakage from the interface itself. Most nasal pillow leaks are usually the result of "the lip flutters" (air escaping between the lips).


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed's new VPAP Auto. Humidaire 3i, Simplicity & Micro mask, ResScan 3.4 software, SPO 7500 oximeter.

caroline wrote:

My dentist is a real pro and insists on at home tests before and after the device is fitted------He wants to prove that special cases can be helped substantially by dental appliances---

I vary a lot from night to night.  Any sleep test is just a snapshot of one night's conditions.  I find it amusing that everyone talks as though a sleep test was an absolute depiction of your sleep pattern until some device has created an intervention.  My sleep gets disturbed by seasonal patterns, the amount of daylight and brightness of the sun is a big factor.  I have a painful back which varies a lot in how it effects me. There are many other variables------

The sleep test in the lab showed horrendus results, but they forced me to lie down on  a regular mattress.  I NEVER SLEEP THAT WAY!  I use a cold waterbed if I lie down, but the last few years I have slept in a recliner.

The person who asked if my facial bones move around---No, of course not--but my muscles in my face change dramatically. It is obvious.  When my Dad died, he didn't look anything like himself, his cheeks seemed to have disappeared and my face is like his.  I've seen a large number of dead folks in caskets, but he looked more markedly changed than any others I've seen------ It's my guess that this factor creates special problems for me.

Well...it sounds like you have already made up your mind to ditch CPAP after two months.

Good luck with the dental device and be sure to let us know how it works out!