Newbie with a thousand questions!

[mermer40]

OK Here goes nothing...I'm not too computer smart so please excuse the errors. Have been on CPAP for 5 months and learned more from this forum than from my doctors or my DME (learned what those initials mean here!)

How do I list my equipment? I'm on a REMstar Auto M Series with C-flex, use a Mirage Quatro FFM and have the encore viewer software. Just recently got these...started off with Resmed S8 Compact and a nasal mask that did nothing for me...I'm a heavy snorer so when I went to sleep...open mouth, snore loud, stop therapy...got nowhere fast and the S8 only gave compliance data. Bugged the sleep doctor (really a pulmonologist) to get me a "smart" machine so I could see what was happening...got flak from the DME but finally got the machine about 2 weeks ago.

OK question #1 - (oh, no #2) - I notice a lot of people on here use the Quatro FFM and love it...BUT I get a LOT of leaks with it! I also have a Comfort Gel FFM that is far from comfortable (hurts the bridge of my nose and I think it is too small..it's a medium) BUT I get hardly any leaks with it and a very low OAI (1.0) and AHI (2.0). With the Quatro my OAI runs about 5.0 and AHI 8.0. The Quatro is much more comfortable (if you can call any of them that)...the DME is ordering me a new one thinking that may control the leaks. But what do you guys think I should be using?

[6PtStar]

Welcome Fellow Texan!! You can do the equipment by clicking the "User Control Panel" (upper left corner)and go to the Profile tab. List the equipment in text form, works better.

Question 2: The Quattro is one of the better masks in the FFM catagory although many do like the Ultra Mirage FFM maybe just a LITTLE better. Generall a personal opinion. Full Face Masks are hard to keep from leaking and take a lot of tweking with the straps to keep from rubbing in the wrong places. Many mouth breathers finally go to a nasal mask and tape their mouth closed or gule it closed with Polygrip strips. Some have some success with a chin strap but if you are a real died in the wool mouth breather they often don't work to well. Keepd the teeth together but won't keep the lips sealed.

Masks are always a real personal preference. It may take several before you find one that works for YOU!!

Jerry

[mermer40]

Thanks for the quick answer! Got the equipment listed.

I went to the FFM because of mouth breathing and snoring and extreme claustrophobia! Tried taping, tying (with panty hose, surgical tape) and couldn't keep it on 5 minutes. The FFM is bad enough, also fight it all night. Am still waiting for that first full night of sleep. I think I slept better before I found out I had sleep apnea...didn't have to wear a mask to bed. I feel like I'm being punished every night when I have to put that contraption on. I'm trying to keep my tongue on the roof of my mouth, but I think in deep sleep (which is rare!) I still open mouth! Don't really know if I'm snoring or if VS index is from noisy leaks or flopping back and forth trying to get comfortable! I am a widow and live alone so have no one to set up all night and watch me sleep!

OK, question #3 - the doctor now tells me I have another "serious" problem called "nocturia"...getting up five or six times a night to pee. I've done this for 40 years and thought it was just a way of life, never bothered me, I just went to the bathroom, pee'd, went back to bed and right back to sleep. NOW, I get up, take off mask, turn off machine, repeat steps, back to bed, mask back on, and try to get back to sleep before I have to get up again in one to two hours! I get more exercise every night than I get all day long! I haven't seen this addressed on the forum. Sleep doc sent me to a urologist who has me on Lasix now at noon...now I pee all afternoon AND all night!!! I think I'll just sleep in the bathroom! Any help or advice out there?

[rested gal]

Welcome to the message board, mermer.

I agree with Jerry (6PtStar) -- most people just have to keep trying different masks and/or different sizes of certain masks, and trying tweaks and fixes if necessary.

I never found a FF (Full Face) mask that lets me burrow the side of my face into my pillow the way I like. I began taping my mouth about five years ago, so I could use the nasal pillows masks that I like better. If I had to use a FF mask, the Quattro or the older Ultra Mirage FF would be my choices. But each person is different -- a mask that works beautifully for one person can be a leaky disaster on another.

Just have to keep digging into this message board to find tips and hints to make it all work as comfortably and effectively as you can. Sounds like you're off to a good start. Software and all...very good!

[Gerald]

Mermer.......

If you'll check your blood pressure when you get up to pee, I think you'll find the answer.

I find that if I don't get enough O2, my blood pressure goes up.....VERY up. When I need to pee in the middle of the night, I find that the urge subsides when my BP drops.

Although many here don't agree with me......I think it's a simple matter of "hydraulics"....high BP causes over-pressure throughout the system....including the pressure sensed by the valve holding the pee in the bladder.

Get your AHI down below 2.5....keep the O2 at 93% or above.....all night....every night.....and my bet is that your "nocturia" will fade away.

In short, I think your "doctor" probably made a wrong diagnosis. Did he give you a reason for the "nocturia"? Probably not. "Just give him some pills....collect the commission from the pill maker.....and send him on his way."

If you get your sleep problems under control, I'm betting that many...if not most...of your health problems will fade away.

Gerald

[Muse-Inc]

..."nocturia"...

I was getting up 8-10 times a night to pee. Apnea events cause increases in the hormone that causes nocturia (urine production), hence ya gotta pee at night. When you start getting restful sleep, it goes away. I was one of the lucky ones, first night on CPAP I quit peeing after I went to bed.

You might check out the hybrid-style masks: they combine the comfort of nasal pillows with a part that fits over the mouth for mouth breathing. There is less mask on the face, thus they are less likely to cause claustrophobia.

[mermer40]

Hey, I love this forum!! You guys are going to get tired of me!!
Thanks for the nice reply Rested Gal..I was just reading one of your posts on another persons question and I thought "she looks so nice, I hope she talks to me!"
And Gerald thanks for the input also. As a matter of fact, my primary Dr. has been trying to control BP since Sept 2008..that's when all this started..I got a blood clot and spent 9 days in hosp...went in on the day Hurricane Ike was heading for the Gulf Coast and all our local hospitals were evacuated north...I got a 3 1/2 hr. midnight ambulance ride to North Austin! When I finally got to sleep about 4 a.m. a Dr. came in, woke me up and asked "where's your CPAP machine?" I didn't know what he was talking about. They had put me on a heart monitor and put me in ICU because of the blood clot and he said as soon as I went to sleep, my heart rate fell to 35! He said I needed to tell my hometown Dr. that I needed a sleep study. After those nine days (and another hectic ambulance ride back home after 3 days)...I forgot about it until Feb. 2009. My BP goes up at night and every morning it is around 198/101 (or thereabouts)...I take four different BP meds and it drops after about 3 hrs to around 132/58...take more meds every 6 hours but BP keeps jumping up and down.
They decided maybe the SA was causing the BP problems (when I finally remembered to tell them what the Dr in Austin said) so I got a sleep study and my OA's were 46 per hour!
Enter, CPAP machine and nasal mask with no explanations! So I went searching and found this forum...read it every night and told my dr a few things when I went back for the first visit! He's actually very nice...
But I'm not having much luck getting more sleep, so when I mentioned getting up and down all night to pee...I got a NEW Dr.! The Urologist actually did a sonogram of my bladder and said I wasn't emptying and gave me flomax along with the lasix and potassium...but the flomax dropped my BP to 89/53 and raised pulse to 134 after just two pills so he took me off the flomax...I go back to see him in two weeks.
I've only seen one other post mentioning "nocturia" and that person said it stopped after the first night on CPAP!!!! Not so, with me...

[Muse-Inc]

Mermer, there is a new study that says the oxygen deprivation we with apnea experience is just like that experienced at certain levels of high altitude. At that altitude, people develop high blood pressure. The drug used to lower the blood pressure might be protective against the oxygen deprivation damage. There's a link to the study posted here I think last Monday (by Rooster maybe?). The study was on Mt Everest and the drug was an angiotensin receptor blocker.

My BP, like my mom's and grandmom's was always low, something like 70-75/60-65 unless I had a migraine when my systolic went as high as 225. A doc discovered my BP had somehow gone to 210/120 -- waaay too high -- he thought I had apnea & sent me to a Sleep Clinic and a cardiologist for checkouts.

Thinking back on my symptoms, I'd had apnea at least a decade before diagnosis but the high BP only developed after I'd had apnea for at least 6 yrs. Now, nearly 2 yrs into CPAP therapy, I've lost 50#s and my BP is now stable at 128-130/64-66.

EDIT: See my post just before your latest, I'm the one whose peeing stopped my first night on CPAP, I had some fabulous results right from the gitgo (I had great sleep best I'd had in a decade), the rest of the benefits didn't start for another 9 months. I'm still seeing benefits so don't give up!

[KSMike]

With the Quattro, make sure you have the right size. The right size for me is a medium, even though every other mask I've used was a large. I started with a large Quattro (on an assumption) and have had fewer problems with leaks since switching to a medium.

If you haven't tried it, the Quattro fitting template is here:

http://www.resmed.com/us/documents/mira ... mplate.pdf

[Gerald]

Mermer....

For a long time, I've thought that "fight or flight, anti-suffocation, panic hormones, adrenaline, cortisol, or whatever one wants to call them" chemicals that we release when we have a severe apnea is what wears down our ability to regulate our blood pressure.

I liken this to what our pancreas experiences when we eat high glycemic foods.....the pancreas is overwhelmed and loses its ability to regulate our insulin levels.

I also suspect that....once we get our "apnea - bad-chemicals" under control......we slowly regain our ability to regulate our blood pressure.

Until we have our sleep apnea under control, the panic chemicals beat up our blood pressure regulating mechanism.....and it takes a long time for this mechanism to heal.

I realize that I haven't described my above thoughts eloquently, but maybe you can get my idea.

Anyway, I hope this helps.

Gerald

[mermer40]

Wow!! So much information to process. Muse and Gerald, is it against the rules for me to print out your replies and show them to my Dr? My sleep Doc thinks its great that I'm reading this forum and learning so much, but primary Doc, I'm not sure about...some docs think patients read too much and should just take their word for everything...kinda get that impression with her.

I printed out the mask template and I fall right on the line at the top of Medium and the bottom of Large on the nose part but the distance from mid-chin to bottom of nose is definitely large. I'm pretty tall and large boned for a female and have a long, thin face...have been using a medium but soooo many leaks, do you think I should switch to a large?...or would that give even more leaks?

[Muse-Inc]

Here's the link to the article you can print out and take to your doc:

http://eon.businesswire.com/portal/site ... ewsLang=en

Your docs may find it useful when battling insurance; you may find it helpful when battling, er, arguing, um, discussing your treatment with your docs

[mermer40]

Thanks, Muse...I'm going to go print that out right now, then have some errands to run so be back tomorrow!

But while I'm gone...
Question #6 ... What does OT stand for?

Question #7 ... What does UARS stand for?

Question #8 ... My data report does not give me my O2, so how do I know if it is at 93% or above? They do check it when I go to the Dr (always during the day, not while I am asleep ) and it is usually in the 90's.

[DBoone]

#6 - Off Topic. Used when you post about something other than sleep/apnea related.

#7 - Upper Airway Resistance Syndrome

Scroll through this thread for more abbreviations.

viewtopic.php?t=14902

[Gerald]

Mermer.....

The only way you'll check your O2 when asleep....is with your own recording Oximeter. I use a SPO-7500 from turnermedical.com. Good tool...good people.

As for printing out this stuff for your doctors......I wouldn't bother. Learn all you can from every direction....doctors....reading....this forum.....and then, manage your own therapy. You're already on your way to doing a much better job of managing your therapy than your doctors will ever do.

You've gotta do it yourself.

Gerald