Am I missing something, or do I just have a crappy doctor?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
ATXFerret
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Re: Am I missing something, or do I just have a crappy doctor?

Post by ATXFerret » Sat Apr 19, 2014 11:24 am

Julie wrote:Btw - when you lie down everyone's face changes quite a bit, which is why we suggest trying on potential masks while lying down - ask your DME about doing that.
I did, twice with the original mask, and then again with this smaller one. Sealed fine at the DME place, makes crazy fart noises on my face a few hours in to sleeping. I'm wondering if it's just something with the shape of my face. When I adjust and tighten it myself, it's almost always the area of my face on either side of my nose, just above the nostril area, that seems to leak most.

Anyway, did a little better last night, though still only had one 1.5 hr sleep cycle worth of <10 AHI.

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JDS74
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Re: Am I missing something, or do I just have a crappy doctor?

Post by JDS74 » Sat Apr 19, 2014 12:07 pm

ATX:
Can you adjust the mask or have someone help you, like your DME, with the pressure set to 20 cmH2O?
The problem comes after you are asleep for a while, perhaps in REM sleep and all of your muscles relax.
When that happens, the shape of your face changes and the fit is no longer perfect.
Using a higher pressure while fitting, may partly compensate for the face changes - just a guess.

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ATXFerret
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Re: Am I missing something, or do I just have a crappy doctor?

Post by ATXFerret » Sat Apr 19, 2014 12:27 pm

JDS74 wrote:ATX:
Can you adjust the mask or have someone help you, like your DME, with the pressure set to 20 cmH2O?
The problem comes after you are asleep for a while, perhaps in REM sleep and all of your muscles relax.
When that happens, the shape of your face changes and the fit is no longer perfect.
Using a higher pressure while fitting, may partly compensate for the face changes - just a guess.
There is nothing that a DME can do that I can't do better here at home with my bed and on my pillows. I can get a somewhat decent fit for a pressure of 20 on my own, though it has to be very tight. But there doesn't seem to be a particular "fit" that works with my face at all points of the night.

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Pugsy
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Re: Am I missing something, or do I just have a crappy doctor?

Post by Pugsy » Sat Apr 19, 2014 12:56 pm

When looking at the AHI...mentally remove the Clear Airway Index (centrals) from the number when evaluating the pressure needs for obstructive events. Those Clear Airway events won't respond to pressure increases and we don't expect them to. So for right now put that part of the AHI on the back burner. They may be real centrals or they may be related to awake/semi awake breathing...either way we can't fix them with more pressure with this machine.
I suspect that a little more minimum pressure is needed to better prevent those obstructive events.
Regarding the clear airway events...they have to be evaluated separately after the Obstructive events are better managed and you were close last night...Hyponea 1.94 and Obstructive 4.79 so 6.73 I think it adds up to.

For some reason your pressure needs are more significant during some parts of the night and not so much the other parts.
That's not unusual at all.
The usual suspects are supine sleeping or REM stage sleep or maybe even a combination of both. I have the REM stage sleep part myself. In REM sleep I see pressures pushing 20 often but other parts of the night I might only need 9 or 10. This was documented on a sleep study. It's actually quite common.

Your leak line from last night's graph...quite acceptable if the leaks didn't wake you up. Not excessive at least in terms of numbers. Though leaks that wake a person up need to be fixed and comfort issues with a mask that disturb sleep also need to be fixed no matter how good the numbers might look.

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SleepyStar
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Re: Am I missing something, or do I just have a crappy doctor?

Post by SleepyStar » Sat Apr 19, 2014 1:01 pm

Some of the DMEs do home visits for CPAP setup/mask fittings.

Ask them if it's something they can schedule. Then you can get things fitted with your pillows, your bed, and your face. Mine also if you say "hey I want to try a bunch of masks in x style (FFM or pillows, for example)" they can make sure to bring those along, too.

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Re: Am I missing something, or do I just have a crappy doctor?

Post by Janknitz » Sat Apr 19, 2014 2:21 pm

Have you tried the hints in "Taming the Mirage Quattro" in my blog linked below? No guarantees, I STILL get leaks, but not too terrible.

Be sure you:
1. Fit the mask with the machine ON
2. Fit the mask at your highest pressure
3. Fit the mask LYING DOWN. If you were sitting up when the DME fit the mask for you in their store, all bets are off because your face changes shape when you lie down.
4. Don't crank down on the straps where the leak is--if the mask is leaking at the top near your eyes, gently tighten around your chin. Really! That will let more air go in to inflate the cushion around the top of your nose to seal off that leak. It's counterintuitive, but it works.
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ATXFerret
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Re: Am I missing something, or do I just have a crappy doctor?

Post by ATXFerret » Sun Apr 20, 2014 12:56 am

Janknitz wrote:Have you tried the hints in "Taming the Mirage Quattro" in my blog linked below? No guarantees, I STILL get leaks, but not too terrible.

Be sure you:
1. Fit the mask with the machine ON
2. Fit the mask at your highest pressure
3. Fit the mask LYING DOWN. If you were sitting up when the DME fit the mask for you in their store, all bets are off because your face changes shape when you lie down.
4. Don't crank down on the straps where the leak is--if the mask is leaking at the top near your eyes, gently tighten around your chin. Really! That will let more air go in to inflate the cushion around the top of your nose to seal off that leak. It's counterintuitive, but it works.
That's all pretty much what I have done. Since the Quattro only has two places to tighten, it didn't make sense to tighten it on my forehead, and I have had some luck tightening the lower strap.

I don't understand why some of you guys keep saying I should get with the DME to do this. Each time, they have done an initial fit, and each time, it has looked fine with me laying in my normal sleeping position and muscles as relaxed as I can make them while awake. And each time, it wakes me up with leaks. It's not like they're going to stand around and wait for me to fall asleep and be asleep for a few hours, which is when the leaks start and wake me up.

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Jay Aitchsee
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Re: Am I missing something, or do I just have a crappy doctor?

Post by Jay Aitchsee » Sun Apr 20, 2014 6:19 am

ATX, I understand your frustration. It took me 5 tries (all certified sleep Drs) to find one that I could work with. As someone above said, I think you should gather your previous sleep lab reports and take them to another Dr for review.
In the meantime, I think you'll be able to improve your therapy on your own by working with folks here like Pugsy. If I read your posts correctly, you have to give the APAP back and switch to CPAP soon? Even so, self titration can still be done, it just requires methodical patience and perseverance.
As far as masks go, I don't know of any way to find one that will work without sleeping in it. As you've mentioned, fitting in the DME presence doesn't guarantee success. One mask that has worked for me, a long time Mirage Quattro user, is the Simplus. It is very similar to the Quattro and still leaks a little, but it doesn't seem to produce the squeals of the Quattro, at least not for me.
Good luck to you,
Jay

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49er
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Re: Am I missing something, or do I just have a crappy doctor?

Post by 49er » Sun Apr 20, 2014 6:29 am

ATX, regarding mask issues, are you limited to full face masks or would nasal pillow and nasal masks be an option, particularly if you can breath through your nose during the day?

49er

ATXFerret
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Re: Am I missing something, or do I just have a crappy doctor?

Post by ATXFerret » Sun Apr 20, 2014 10:17 pm

49er wrote:ATX, regarding mask issues, are you limited to full face masks or would nasal pillow and nasal masks be an option, particularly if you can breath through your nose during the day?

49er
Nope, I open my mouth too much at night, even with a jaw strap.

Tonight, I'm going to try a minimum of 16 and see what that does. Last night I had 9 AHI and it barely leaked at all. Oddly, still very sleepy today.

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Julie
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Re: Am I missing something, or do I just have a crappy doctor?

Post by Julie » Sun Apr 20, 2014 10:57 pm

Have you been checked for 'silent' GERD? It's not that uncommon and can really mess up your sleep without your realizing it, but just not being aware that it has.

ATXFerret
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Re: Am I missing something, or do I just have a crappy doctor?

Post by ATXFerret » Mon Apr 21, 2014 12:22 am

Julie wrote:Have you been checked for 'silent' GERD? It's not that uncommon and can really mess up your sleep without your realizing it, but just not being aware that it has.
That would probably be hard to check for since I have GERD. Strangely, though, the CPAP seems to control that, regardless of pressure. It is due to a hiatal hernia...maybe the pressure pushes the esophageal sphincter shut?

ATXFerret
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Re: Am I missing something, or do I just have a crappy doctor?

Post by ATXFerret » Mon Apr 21, 2014 6:17 pm

From last night.

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Looks better, but still feel like crap. Maybe I just have some catching up to do. Think I should adjust the minimum up some more?

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Pugsy
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Re: Am I missing something, or do I just have a crappy doctor?

Post by Pugsy » Mon Apr 21, 2014 6:32 pm

ATXFerret wrote:Think I should adjust the minimum up some more?
I would if it were me even though the report isn't horrible..just a little too much clutter to suit me...with the snores and stuff.
But at this point I would go with small increases in the minimum and be prepared to use it for a few days to see trending.
You are real close now and time to slow down just a little. AHI can and will vary from night to night without changing anything so there comes a time when you have to make sure that what you are seeing is a real pattern and not a fluke night.

I have those flukes even now...AHI less than 1.0 one night and the next night 5.5 and then the next night 1.4....
I have more low AHI nights though..so that is my trend and pattern and I can't/don't make any adjustments based on flukes.
Until you have more nights with no changes...you don't know if what you are seeing is a fluke or not.

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Re: Am I missing something, or do I just have a crappy doctor?

Post by islandboy5150 » Mon Apr 21, 2014 7:08 pm

This may sound stupid as youve probably already tried it, but skin oil used to make my mask fart in the middle of the night and nothing I could do would get it to seal again. Until I started using alcohol to strip the oil off my face right before I masked up, AND I use a fleece mask liner on top of the regular poly/lint free liner you get from Karen. I use one on tops of another, with a nose bridge pad in between and have it all attached to a PapCap so it never moves. Ever. I have to tighten it up pretty good, but all I have to do after I clean my face is pull on the PapCap, bring the straps around front, click them in, and I get the most comfortable easy breathing full nights sleep!

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