Sanity Check

NeedZZZ:

I originally had a sleep study done because of the crummy state of my optic nerves. 10 years of eye specialists and not one of those quacks mentioned poor sleep/apnea as a possible cause of my left-eye glaucoma.

In January when I needed new glasses and went to my wife's little optometrist, Dr. Caren Weisz of Crest Hill, Illinois - a wonderful, helpful lady - and she mentioned the link between optic nerve problems and apnea. Bingo, I went to my regular MD, he had me fill out the sleep questionnaire, the hospital called and told me that I qualified for a study, I had the overnight slumber party at the local Krankenhaus, and within 10 days of the sleepover I was fitted and supplied with CPAP gear.

As I stated earlier, the first mask wasn't a good fit (literally and figuratively) and I finally got my FX. I designed a five-step program for myself to get comfortable with it:


1) Find a mentor who will guide you through acclimation to your gear. Tom Chmielinski, a baseball buddy of mine who posts on here has been of enormous help in my two months of CPAPing. At every step he's given me sage advice and encouragement.
2) I began sitting and watching a movie or ballgame wearing the gear to become 'friends' with it but still went to sleep without it my old crummy way.
3) I then graduated to wonderful afternoons taking naps with all the equipment that got me used to the mask and enhanced my evenings.
4) After another week or so, I would go to bed without the gizmo but the first time I awakened (usually around 1 a.m.), I'd be so groggy that I could slap the mask on and fall asleep without getting an attack of nerves.
5) After I made it through the initial four steps, I decided that on the first Sunday night in March, I'd put my FX on at bedtime. I did so, said a Lutheran prayer, and it was off to dreamland.

All in all, I've had 17 excellent nights of rest with only two bad ones in the span (that I may have caused them by ingesting too much caffeine during the day) and I'm pleased as punch. Obviously I'm hoping that blood and oxygen flow to my eyes is improved with the CPAP system. In any case, I'll sleep better the rest of my life with Dr. Weisz's help.

God bless.

Thanks, Pugsy. That information is extremely helpful. I'm going to try the Quattro FX before the Swift FX simply because the Quattro FX seems, at the specification level, to be functionally identical to the Quattro Mirage and one or two patients have reported that switching from the Quattro Mirage to the Quattro FX has solved exactly the problem I'm having. I presume I'm eligible for a new mask paid by insurance in two months. At that point, if not before, I'll try the Swift FX. I have a fair degree of confidence that will solve my problem.

Oh, and thanks again, DEXSUZ, too.

Advantages of the FX:
One is that it doesn't have the forehead braces that the QM has. If I want, I can put on my glasses and read or watch TV. As well, adjusting the straps or mask while they're on my coconut makes far, far less noise. I hated the fart-like sounds my first mask made because I worried that they'd awaken my wife or keep her from nodding off. Finally, the FX creates little-bitty wooshes if I move and create an air leak; there's no explosion of air.

Again, best of fortune! If need be, feel free to e-mail me on this forum.

I don't know if you have read Janknitz hints for the Quattro fitting but here's the link in case you haven't.
http://maskarrayed.wordpress.com/taming ... e-quattro/

There's also a video that might have some useful hints.
http://www.cpaplibrary.com/full-face-masks.html

I have never used a full face mask so I am zero help there but if you decide to try a nasal pillow mask then I might be useful in that regard because that is all I have ever used.
We all have our own preferences and mine is nasal pillow.

Regarding the RX requirement for cpap masks....stupid IMHO...like who in their right mind would be buying one at the prices they cost if they didn't have a cpap machine and try as I could...I have not been able to figure out what someone might do with it that makes it a danger. Just more regulations I suppose. When I first started therapy the RX requirement wasn't enforced but then somebody got a bee up their behind and put some muscle behind the requirement.
Oh...mask replacement parts don't require a RX...so it's easy to build a mask with replacement parts.
Go figure that one. EBay is a good source for replacement supplies for some of the more popular masks and often people can build their own for a lot less than online prices but of course no return insurance if bought from EBay.

Were you carefully measured for your Quattro or just "eyeballed" as we were? The forehead dial needs to be set correctly too, even one small twist either way can make a difference. We've also had a good fit with the Ultra Mirage FF. You might also think about a different bed pillow that might accommodate your mask when side sleeping. Do a search here for "bed pillows" and you'll get lots of tips. Keep us updated.

DoriC wrote:Were you carefully measured for your Quattro or just "eyeballed" as we were?

"Measured?" Not by the DME provider. Maybe during the sleep study. But I don't recall any information concerning size appearing in the sleep study report. of which I was careful to obtain an allegedly complete copy. "Carefully?" Oh, my. Only if the unit of measure was cubits or yards.

Downloadable templates that can be printed off in real life size so you can check the measurement for the cushion.
http://www.resmed.com/us/assets/html/ma ... lates.html
Maybe they didn't eyeball the right size cushion.

Pugsy wrote:Downloadable templates.

Thanks! Come to think of it, I tend to get a lot of air blowing into my eyes, which suggests to me that the mask rides too high on my face. At the same time, I don't feel that the mask covers my mouth well. If I open my mouth it seems like I can make the mask fall off. I try to compensate for these effects by lowering the mask below the place where the mask is supposed to to be place on the nose. All in all, it doesn't work well. And, since I wear glasses, I've never been fond of the forehead piece on the Quattro Mirage, which prevents me from wearing them. I'm playing with the mask as I write because I am overcome with weariness and decided to try to get some daytime sleep.

Since your AHI is so nice and low I wouldn't be surprised if you could lower your fairly high pressure and get a better mask seal without raising your numbers too much. From your description I don't think you have the right size mask. .

I played with the mask using a liner and now more accurately recall why that almost, but not quite, works. The liner does a fabulous job of suppressing the musical leaks even without over-tightening, which means it's also comfortable. The problem is that it apparently introduces quiet leaks. At least my machine's leak test shows leaks. Now, with some effort, I can fiddle with the mask and liner and eventually manage to suppress all the quiet leaks. But if I tilt my head or wait a few minutes and re-test, the leaks are generally back.

So, I suppose this raises the following question: Is the leak test in the ResMed S9 Elite accurate or is it too sensitive? If the leak test is too sensitive, then the liner is a winner. But, offhand, I'd suppose the test is accurate. Right?

In that case, is there any way to improve stability of leak performance when using liners? I'm currently using RemZzzs liners but I've ordered some Quietus liners.

On a second front, a brief nap brought on mouth Sahara. Is it reasonable to use a chin strap with a full-face mask? I'm using a wide elastic-velcro strap that seems effective enough. But it's several inches wide and so it interferes with my tuning of the mask position. Also, to get it tight enough to prevent my mouth from opening, it seems that quite a bit of tension is necessary, which is uncomfortable in itself. Is there a better type of strap or a better way to use a strap than my current method?

P.S. At this point, I suppose I'm into FAQ land. I'm scanning other postings now. But it's hard to do so because I'm so weary. Thanks for any responses to what must be, from the perspective of long-term board members, very stale questions.

Pugsy wrote: Regarding meds...education only so that you know about the potential affects and maybe help you accept part of the limitations. I didn't mean stop them but sometimes knowing about them helps and perhaps discussions with your doctor might alter time of dosage or amount of dosage so that effects might be reduced.

When I went to my sleep doctor for a followup, I showed him my list of medications, and he had me move a couple items from "before bed" to morning time. I also moved one of my morning pills to a night time pill. I don't know that it made a huge difference, but I figured it would be better to arrange them in a way to produce the least effect on my sleep.

I would suggest making a list of medications, dosages, and current times that you are taking them. And have your sleep doctor (or pharmacist) look over the list.

I also check with my pharmacist every time I consider anything that is over the counter. I have high blood pressure, so I don't want to pick anything that will mess that up. So, I always ask. I also found that my pharmacist was better at picking an allergy medication that my doctor. I tried zyrtec and clariton (not at the same time), and even doubled them on my doctor's advice. I never noticed any improvement, even after 3 weeks straight of twice a day. Then one day, I came to work and started sneezing and blowing like crazy. I couldn't stop. Something had set me off. I work on a grocery store with a pharmacy, so I went to the pharmacist and asked him what I should try that would stop my runny nose. He recommended the chlortrimeton. Finally, something that worked for me.

I am actually using the cough medication he recommended and the chlortrimeton right now as my allergies have put me into another round of cough and runny nose. I actually lost my voice only a couple hours after the runny nose started. No other symptoms. I do like the prescription cough syrup better, but not enough to pay full price for another doctor visit. Last time, she blamed my cough on my medication. I knew that wasn't it, but she didn't believe me. It took weeks to go away, even after changing medications. That was last July. I've had the allergy cough in October, January, and currently. And wouldn't you know, the high pollen count was on the news yesterday. And this year is supposed to be bad.

Sorry about the long story, but pharmacists are a great resource. They do know more about these medications than many of the doctors do.

Pugsy offers excellent guidance. Though 12 seems to be the threshold with nasal pillow styles, I recently had a 16 cm patient go from the full face to a pillow without a problem. Don't hesitate to use a chinstrap if necessary though. A lot of folks think of chinstraps like training wheels on a bicycle, once they get the hang of keeping the air in, they don't need them any more.

SleepWellCPAP wrote:Pugsy offers excellent guidance. Though 12 seems to be the threshold with nasal pillow styles, I recently had a 16 cm patient go from the full face to a pillow without a problem. Don't hesitate to use a chinstrap if necessary though. A lot of folks think of chinstraps like training wheels on a bicycle, once they get the hang of keeping the air in, they don't need them any more.

SleepWellCpap, people have had success with nasal pillows at higher pressures than 16cm. You might want to revisit the assumption that people can't go higher than 12cm.

49er

SleepWellCPAP wrote:Though 12 seems to be the threshold with nasal pillow styles,

Common misunderstanding and it unfortunate because people who might do well with them are discouraged from trying based on some idea that someone came up maybe based on their own experience or rumor control.
I routinely see near 20 cm and there are people here using over 20 cm with nasal pillows and having great success. It's just like everything else with CPAP ....everything comes with the YMMV sticker.
Some people might have a problem with the higher pressures and some won't. It's the same with any mask out there.
Straight CPAP at 19 cm is going to be a challenge with any mask but contrary to what some people think...nasal pillows won't go flying out of the nose and across the room like a deflated balloon and it isn't any more difficult to keep the pillows in place at higher pressures than any other mask....less IMHO because there is less surface area to have to deal with.
I have never used anything but nasal pillow masks.
Anyone who wants to try them should be allow to try them and not given a defeatist attitude about it.

You might have a problem but that doesn't mean everyone else does. I have my own issues with full face masks or over the nose masks..but I don't assume that my issues are everyone's issues.

Pugsy wrote:Downloadable templates that can be printed off in real life size so you can check the measurement for the cushion.
http://www.resmed.com/us/assets/html/ma ... lates.html
Maybe they didn't eyeball the right size cushion.

Thanks so much. The template indicates I should be using size small rather than size medium. It's not even ambiguous. It's dead center. At this point, I no longer hesitate to identify my DME as Apria. I understand why many patients refer to that company by a somewhat different name. I will complain to my physician and, more importantly I think, to my insurance company, of what I myself don't hesitate to term malpractice, on at least two counts. First, Apria provided the wrong size mask. Second, they failed to verify that I was competent to correctly adjust the mask before sending me home. They've basically stolen a month of my life.

Hmm, even though the verdict of the template is clear maybe I should first make absolutely sure that the mask size is wrong. Any ideas how to go about that?

P.S. I'm upset that, in the meantime, I've purchased, out of pocket, a new mask in size medium. Certainly, I'll be able to return it, as unopened merchandise. But I will be inconvenienced and it will delay the arrival the mask that may solve my problem.