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I am TOTALLY (and hopelessly) lost!
#1
I am TOTALLY (and hopelessly) lost!
Good day to all!

I am a newbie. A novice. A virgin, if you will. I know NOTHING about CPAP.APAP, or anything related to them!

Ten weeks ago all I knew about CPAP was it is a four letter acronym. Now I'm beginning to consider it more of a four letter word!

I succumbed to the wishes of my wife and the mandates of my Doctor and agreed to a sleep study. I knew it was a waste of time but I wanted to appease them.  Two weeks later I'm laying in a strange bed, in a strange building, listening to a strange gentleman telling about how he's going to "wire me up" and monitor my every move and breath for the next 6 hours.

What did I get myself into?

Two hours later I get awakened by this guy and he pushes a mask in my face and says I'll sleep much better with this on. I thought I was doing fine all by myself!  His question of "is that too tight" was an understatement.  I felt like he was trying to push it out the back of my head. I accepted the mask and went back to sleep. At least until the air blowing out form under the mask felt like Hurricane Hilda on my cheeks and I had to force an exhale! 

Two weeks later I find myself at the DME (Covid-19 precludes them from house calls) and I get a mask of my own.  The "therapist" did an excellent job of showing me how to turn the machine on and back off and where to put the water in the humidifier tank.  Other than that, there wasn't much more than sign this, give me your credit card, and we'll contact you when you need supplies.  That's been 6 weeks ago and I know very little more than I did when I walked out of the DME office.  What little I do know came primarily from trolling this board.  I am confused. I am aggravated. I am awaiting that "aha" moment when I wake up and say "that was the best nights sleep I've had in years" that I read everyone talking about.  I installed OSCAR and it is VERY impressive on the amount of information that it reveals.  I have absolutely NO IDEA what any of that information means or what to do with it.  I am inundated with a series of acronyms that have no relevance for me at all because I don't know what they mean or what the "ideal" charts for them should be.  I've read the beginners guide (well at least until I was thoroughly confused) for the Sleepyhead program and I am no better informed than when I started.  I think I tried to stuff way to much information in my brain at one time.  I know what you're thinking, "Is he ever going to ask a question?". I have tons of questions.  I just don't know where to start.  Let's try this, is there any place that explains the graphs and compares them to the ideals in a simple, layman's format?  I'll even do one more. My AHI is 11.53. Where do I even BEGIN to consider how to bring it down?  Do I just experiment?  With what?  Do I need to camp on the specialist's doorstep and hope he has the answers?  I am lost!

   
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#2
RE: I am TOTALLY (and hopelessly) lost!
I'm sure an expert will be along to take a look, but I want to welcome you and offer a few preliminary thoughts.

You have an excellent machine (and a caring wife!). I think there's a good chance you will feel improvement with some adjustments to your settings and some additional time getting used to the whole set-up.

Mask. I see that you have some periods of "large leaks." These are leaks that are so high the machine can't produce the therapy you need. Do you feel you need a full-face mask? The answer would be a definite yes if you breathe through your mouth fairly often during the day, but if you mostly breathe through your nose, you might want to try a nasal mask or a nasal pillow mask. The reason to think about that is that the full-face mask has the maximum perimeter that touches your face and thus offers opportunities for leaking.

Patterns of events. You have some "clusters" of obstructive events (obstructive apneas, hypopneas, and FLs). That might be due to sleep posture (see below), but it might also be that you are tucking your chin down toward your chest. That can narrow your airway, making it easier for events to occur. It'd be very worth your while to try wearing a soft cervical collar at night, or a half-collar like the Eliminator anti-snore collar. It might also help if you used a fairly flat, firm bed pillow, though perhaps you do already.

Flow limitations. You have a lot of them. Think of FLs as baby obstructive events. They can be exhausting, because you have to work harder drawing your breaths during the night, and they can also keep you from having normal sleep cycles. You may get some help from increasing your EPR (Expiratory Pressure Relief) to 3, but you may in the end need a different kind of machine. But one thing at a time.

Pressure settings. It would be good to have some expert advice, but you can see the period when your pressure stays at its maximum and meanwhile you are having a lot of events. I recommend raising your maximum to 20. The machine won't go that high if it's not necessary, but it does clearly need to go higher than 15.

You can make changes yourself by entering the clinician's menu. You can do that by simultaneously pressing the home button and the big round button for a few seconds. Would you be comfortable doing that?

Sleep position. Do you sleep on your sides, back, or some of each? By any wild chance were your sleeping on your sides for the first few and first last hours of the night? And on your back in between?
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#3
RE: I am TOTALLY (and hopelessly) lost!
Welcome to Apnea Board. I can't add anything to what Dormeo has made mention of.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: I am TOTALLY (and hopelessly) lost!
All that leaking in the middle of the night is something that needs to be sorted out.  It may be fit, it may be pressure, it may be sleeping position, it may be the wrong mask entirely.

Dormeo has pointed out that your events cluster a lot, including commensurately with the leaking.  I don't know if this is when you turn onto your side, your back, your stomach (don't laugh, you'd be amazed at how adaptive some of us are, even managing to sleep on our stomachs with all this apparatus).  We don't know if your mask is being deformed by something or merely deflected/displaced.  Raising the pressure all the way to 100 won't improve anything; the leaks will just get noisier and more voluminous.  

If we could be accorded a sanitized view of your sleep study, that would really help.  Obscure the private stuff, but let us see what transpired and why you have the machine and fittings you're currently using.  It may not be correct...at all.
Serial Tapist
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#5
RE: I am TOTALLY (and hopelessly) lost!
I agree with Dormeo's assessment, and will suggest you increase EPR to 3 and read the mask primer wiki that is linked in my signature.  Very good advise so far.  Here are your reading assignments:
Mask Primer: http://www.apneaboard.com/wiki/index.php/Mask_Primer
Positional Apnea: http://www.apneaboard.com/wiki/index.php...onal_Apnea
Soft Cervical collar: http://www.apneaboard.com/wiki/index.php...cal_Collar
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
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Soft Cervical Collar
Optimizing Therapy
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: I am TOTALLY (and hopelessly) lost!
(06-09-2020, 05:03 PM)Dormeo Wrote: Mask.  I see that you have some periods of "large leaks."  These are leaks that are so high the machine can't produce the therapy you need.  Do you feel you need a full-face mask?  The answer would be a definite yes if you breathe through your mouth fairly often during the day, but if you mostly breathe through your nose, you might want to try a nasal mask or a nasal pillow mask.  The reason to think about that is that the full-face mask has the maximum perimeter that touches your face and thus offers opportunities for leaking.

The tech used a ResMed F20 with the foam cushion at the titration. I got the ResMed with the silicone at the DME.  When the month rolled around and I was to get a new mask I requested the foam.  I'm not sure it's for me.  I didn't have the SD card until a couple of days ago so I have no idea what the specs were since I started but I am sure the AHI is at least the same and I think appreciably higher than with the silicone mask.  I used to drool a lot while sleeping, presumably from breathing with my mouth open and laying on my side.  I don't have a puddle in the mask so I'm assuming either I'm not mouth breathing or the humidifier helps me to not drool. (That really sounds kind of sick when I type that, doesn't it?)

Patterns of events.  You have some "clusters" of obstructive events (obstructive apneas, hypopneas, and FLs).  That might be due to sleep posture (see below), but it might also be that you are tucking your chin down toward your chest.  That can narrow your airway, making it easier for events to occur.  It'd be very worth your while to try wearing a soft cervical collar at night, or a half-collar like the Eliminator anti-snore collar.  It might also help if you used a fairly flat, firm bed pillow, though perhaps you do already.

I do use a relatively soft, fluffy pillow. I also begin the night on my side because then the mask doesn't leak. Well, I think it doesn't anyway. I fall asleep pretty quick so I really don't know how bad it leaks until I roll on my back and it blows all over.


Flow limitations.  You have a lot of them.  Think of FLs as baby obstructive events.  They can be exhausting, because you have to work harder drawing your breaths during the night, and they can also keep you from having normal sleep cycles.  You may get some help from increasing your EPR (Expiratory Pressure Relief) to 3, but you may in the end need a different kind of machine.  But one thing at a time.  

Pressure settings.  It would be good to have some expert advice, but you can see the period when your pressure stays at its maximum and meanwhile you are having a lot of events.  I recommend raising your maximum to 20.  The machine won't go that high if it's not necessary, but it does clearly need to go higher than 15.

You can make changes yourself by entering the clinician's menu.  You can do that by simultaneously pressing the home button and the big round button for a few seconds.  Would you be comfortable doing that?

Sure!  I love to push buttons! I'll set the max to 20 and the EPR to 3.


Sleep position.  Do you sleep on your sides, back, or some of each?  By any wild chance were your sleeping on your sides for the first few and first last hours of the night?  And on your back in between?

I'll go with option three, some of each.  I typically start out on my left side and sometime throughout the night drift to my back. When the leakage gets so strong it feels like a fan blowing on my face, I wake up and usually roll on my side again and start the process all over.  In the past I have typically tried tightening the straps on the headgear, first the bottom straps, then the top.  I have it now to the point that it feels uncomfortable but I'm willing to put up with it if it helps (it doesn't seem to be working).  I tried the mask fitting setting and followed the instructions I read on this board and that worked great when I started but when i rolled over it obviously didn't fit as well as I thought.  I tightened the straps and here I am. Uncomfortable and with lots of leaks.

I really don't want to be a bother but I don't know where else to ask these questions.  Should I be addressing these to the Doctor at the sleep center?  Well, actually his PA because I've never met him.
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#7
RE: I am TOTALLY (and hopelessly) lost!
Danno54, keep the questions and observations coming! The whole purpose of this forum is to try to help people solve problems that keep them from good therapy and sound sleep.

It sounds as though when you're on your back, the contours of your face change a little (maybe flesh shifting back/down a bit) and open up those leaks. Have you tried fitting the mask while lying on your back? Use the loosest adjustment that stops leaks. You want to give the foam some room to expand. If that doesn't help, then I would recommend trying a different mask. A mask can work well for one person and horribly for another, so unfortunately many of us need to try a variety of masks to land on the one that works best.

If you're not seeing drool in your mask or experiencing a very dry mouth, you may actually be sleeping with your mouth closed. (About drool: hey, I'm the person who just last night started using tape reinforcements against an out-of-the-blue drool problem with my beloved Somnifix.) Do you breathe through your nose during the day?

If you have a flatter pillow around somewhere, you might give it a try. But it sounds as though you would also benefit from sleeping more consistently on your sides, on both the leak and AHI fronts. People do train themselves to do that, if you're willing to give it a try. An easy first step is to put something like a little ball in the pocket of a t-shirt and put the shirt on backwards so that you get a little reminder to move from your back to your side.

I'll be interested to see a chart with the new settings, if you'd like to post one.
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#8
RE: I am TOTALLY (and hopelessly) lost!
Thanks for the responses.  This site (and especially people like all of you!) are a Godsend!  I've perused the WIKI entries and, while they are FULL of information, I must admit, I feel more confused and lost when I am finished reading than when I started. Keeping that in mind, it is getting much easier to read and understand the entries.  I think I am slowly developing a knack for at least understanding just how complex this all is.  I was (mistakenly) under the impression I would get a machine and voila, I'm cured!  I can see now this is going to be a long and arduous process.

I was amazed at how simple it was to get a copy of my sleep report.  I just asked and she said "sure, I've got your records on screen now, I'll just e-mail the pdf to you". Wow!  I cleaned all the identifying stuff off the report and saved as a pdf.  I'll attach it here.

Thanks again for all of your help!


Attached Files
.pdf   Sleep.pdf (Size: 84.67 KB / Downloads: 38)
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#9
RE: I am TOTALLY (and hopelessly) lost!
Of note, oxygen levels are very low at times, as Minimum sleep oxygen saturation was down to 56, a dangerous level. Average here in sleep oxy level was 90. That's a bit low as well, most should be seeing in the mid to upper 90's. I'd be thinking sleep usage of supplemental oxygen should be discussed.

Average sleep oxygen saturation: 94
Minimum sleep oxygen saturation: 85
This isn't as bad as the average and minimum listed separately and mentioned at the top of this post.

There's quite a lot of Obstructive Apnea noted 110 total, mostly in non-REM, no CA, arousals are noted as high at 155 and an arousal index of 66.7. This will disrupt sleeping unless reduced. You will be classified as severe apnea on an AHI of 71 or so.

I'd guess they will try a CPAP, but you may be more comfortable with something like the ResMed VAuto.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
RE: I am TOTALLY (and hopelessly) lost!
Danno54, thanks for posting the sleep study. You do definitely need treatment for sleep apnea and sleep-disordered breathing. This is not just so you can have more pleasant nights and function better during the day; it is to help reduce the long-term risks of an untreated condition. Untreated, your condition could contribute to cardiovascular and metabolic problems; see this from a trusted source:
https://www.hopkinsmedicine.org/health/w...leep-apnea

While looking this over, I noticed mention of night-time open mouth and drooling as signs of apnea -- fits you to a T, doesn't it? I'm still curious whether you breathe through your nose during the day.

Do post a chart with the new pressures when you have a chance.
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