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[Equipment] Adjustment issues
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plumblossom Offline

Members

Posts: 5
Joined: Sep 2016

Machine: DreamStation (Auto?)BiPAP (Pro?)
Mask Type: Full face mask
Mask Make & Model: Philips Amara View
Humidifier: Philips Dream Station
CPAP Pressure: 13-17
CPAP Software: SleepyHead

Other Comments: My BiPAP might change? And I also use nose pillow sometimes

Sex: Female
Location: Santa Cruz, California

Post: #1
Adjustment issues
I've been using BiPAP for less than a week. I can tell I'm going to love the air, but for now I'm having problems and I'm getting even less sleep than before.

My sleep study was divided into two parts--after a couple of hours the tech came in and put the mask on me, and so I had measures with and without BiPAP support. This is relevant to my current troubles because they fitted me for the mask before I went to sleep so if they felt the mask was warranted it would be a simple switch, and the only masks they gave me to choose from was a funnel-shaped thing that went over the nose only and a set of accordion-shaped nose pillows. I chose the pillows and did fine.

So when the machine finally came I was having nasal congestion so I asked for the full face mask because I thought it would be better than the pillows if I had to breathe through my mouth. The upshot is that I have both, and I'm trying to get used to both of them before committing.

Here are my problems: with the nose pillows, my nostrils hurt and I can't keep my mouth completely closed so I end up with a drowning sensation. With the full face mask, it leaks constantly and I just can't seem to discover a fitting that will end it. I have loosened, I have tightened, I have nudged it up, down and sideways. There is a position it will apparently stop leaking in, but it won't stay there. Does this indicate the mask is the wrong size? It's a medium and I don't think my face is especially large or small.

With both of them, I think the pressure is too high but I don't feel free to adjust that on my own this early in the process. I think the pressure is too high because of the particular way my nose hurts and because when I am wearing the face mask the air blows my lips open (away from my teeth and jaws) and dries my mouth out. I already have to get up and use the bathroom in the middle of the night, and I am really very dry by then (I am not normally this dry at night). The leaky air dries out my eyes too, but that's another problem.

When I push the button to start the lower, "ramp" pressure, all of this goes away.

I haven't noticed anybody else on a pressure of 13-17. Is that a particularly high pressure?

(the sleep tech at the study said he knew I'd need a high pressure because of something something. I know I desaturated to 83% frequently during the study, and even continued to do so after the mask was put on and I no longer stopped breathing, but the sleep doctor refused to explain that to me, saying we'd deal with it at the followup if it didn't go away with the BiPAP machine. I want to understand everything so this did not sit well with me)

As for the actual purpose of the machine, it seems to be doing its job: all my events are very low with the machine going. I just need to solve these problems before I can benefit from it.
09-22-2016 01:08 PM
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PaulaO2 Offline
Wiki Editor
Moderators

Posts: 8,065
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #2
RE: Adjustment issues
Try another nasal pillows. If the mask hurts, it either isn't fitting right or it is the wrong mask for you.

If a full face mask is leaking that much at 15-17, then it too isn't fitted right for you. Watch YouTube videos on how to fit both of them. If neither of them work after that, try other masks.

It is exceptionally rare that the first mask works.

PaulaO2
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09-22-2016 01:26 PM
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PoolQ Offline

Advisory Members

Posts: 986
Joined: Jul 2015

Machine: AirCurve 10 VAUTO
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Integrated
CPAP Pressure: 6.2, 15, PS4.0
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Sillicon Valley

Post: #3
RE: Adjustment issues
A couple things: first (seriously) take a glass of water and take some water into your mouth, don't swallow. Breathe through your nose with the water in your mouth. Checkout what you are doing with your tongue, you do this quite often when you eat and drink-this is what you need to do so the CPAP air does not go into your mouth, you just need to learn to do it while you are on CPAP.

Adjusting a mask is a big thing, little changes and trying everything-seems like you already have tried everything, but unless you have some seriously different nose, there is one of more things you have not thought about.

1. mask size with the Amara View is more about the distance between the bottom of your nose and that spot on your chin where the surface comes in from your chin and starts to go back out over your teeth, the divot is where the bottom of the mask should sit.
2. that strap of silicone right next to the breathing slot should go flat against your upper lip and not under your nose
3. you do not want to pull this mask hard against the underside of your nose, it seals by inflating the silicone around the edge and tip of your nose.
4. you need to figure out what works for you to get it seated. After you turn on the CPAP chose a. pull the mask straight out to let the silicone inflate and then set it straight back down. b. start with a. above but first set the end of your nose into the little nose cup, then rotate the bottom of the mask in place. c. exact opposite of b. set the chin in place first and then the nose. d. as you start to do a. above and start with the mask slightly lower then it should be and as you get very close to letting go, slide the mask up-to get that strap of silicone in place- and then let go

Practice all this when you are not trying to go to sleep. sit up, lay down, turn over, see how the mask fits.

is 13 high, to some yes and to others no. From what I have seen "most" start lower than 13, but it is what it is. You seem to be using ramp, as do I, and you can play with the ramps duration and it's starting pressure separately from your therapy settings.

Sleepyhead can give you an idea of where your pressure should be, but this will be most accurate after you have gotten used to CPAP, the mask, the pressure, the movement.... This is why the Doctor said they will look at it during the next visit.

If you just plain cannot sleep as it is, then adjust what you can and then contact the Doctors office and tell them it's not working right, I am not sleeping at all. If it's way off ley will bring your in sooner or make some adjustments remotely.
09-22-2016 02:17 PM
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Sleeprider Online
Wiki Editor
Advisory Members

Posts: 3,369
Joined: Dec 2014

Machine: Resmed Aircurve 10 Vauto
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: Resmed Climateline
CPAP Pressure: Auto Bilevel 18/9, PS 3
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments:

Sex: Male
Location: Where they make Respironics

Post: #4
RE: Adjustment issues
PoolQ, good tip on holding water (beer, wine, whatever) in your mouth and being aware of where the tongue resides! I hadn't heard that before, but I'm going to use it in future posts if you don't mind. Good observation.

Plumblossom, if a nasal pillows hurts your nostrils, they are too small. Get a larger size and try again. A proper fit seals around the outside of the nares, and should not be irritating. Also, I have never experienced congestion that the nasal pillows cannot penetrate. It's a huge relief to put on the CPAP after a day of congestion and mouth breathing as I can finally breath through my nose. Truth.

As you get a few more posts, I think it would be helpful if you could post some data so we can help work out some of the pressure and comfort issues. Be sure to download Sleepyhead and get familiar with it (link at the top of this page), and you might want to look at ways to organize your data https://sleep.tnet.com/resources/sleepyhead/shorganize and use a hosting site like Imgur to display the charts on the forum. https://sleep.tnet.com/reference/tips/imgur

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09-22-2016 03:23 PM
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chill Offline

Advisory Members

Posts: 860
Joined: Mar 2016

Machine: DreamStation X500
Mask Type: Full face mask
Mask Make & Model: Walk-in Mask Closet
Humidifier: DreamStation
CPAP Pressure: 13-16
CPAP Software: SleepyHead

Other Comments: CPAP True Believer

Sex: Male
Location: Vancouver, Canada

Post: #5
RE: Adjustment issues
Welcome!

Quote:I've been using BiPAP for less than a week ... I'm having problems and I'm getting even less sleep than before.

That is a very common experience. You need to get the mask to fit property and you need to get used to the pressure before you can get a good night's sleep. It can be very frustrating as bad sleep is the reason that you are doing this and now you have worse sleep. Hang in there, it gets better - much, much better. But you have to allow yourself time to get it setup right and time to get acclimatized. For some people this is a few days, for others it is a few months. A positive attitude goes a long way in these frustrating times.

Quote:I can't keep my mouth completely closed

Is that because of the pressure, or some unrelated reason? A chinstrap can help keep your mouth closed if nothing physical is preventing that. But it won't stop lip leaking which is what sounds like is happening. A chinstrap might help to train your brain to seal off the mouth as PoolQ describes.

I have been trying the Amara View the last couple of nights as a replacement for my go-to mask the Simplus (also a full-face, my goal is to have as many masks as my wife has shoes). I had more leaks with the medium cushion than with the small so you should try different size. I'd describe my face as between medium and large. It is better to tighten it more at the bottom than the top. I think. I am still trying to learn.

Not all masks are for all people (faces). I suspect that the Amara View is going to end up in the box of "masks that are OK but which really don't work well for me". You might need to push your supplier to get some other masks to trial. I really do like the Simplus, but even it leaks into my eyes at times.

The pressure should not make your nose hurt. At a setting of 20, it won't even start to inflate a party balloon. What will make your nose hurt is an improperly adjusted and too tight mask. When it inflates it will increase that pressure. I did that to myself last night and work up at 4AM with a very tender nose.

Higher pressures can cause lip leaking and mouth opening. Both are things that most people can learn not to do. You might find it helpful to start with a lower pressure where this does not happen and gradually increase it. Be aware that you won't be getting the therapy you need at those lower pressures which is not going to help your sleep. But if you are not sleeping well already....

Quote:(the sleep tech at the study said he knew I'd need a high pressure because of something something. I know I desaturated to 83% frequently during the study, and even continued to do so after the mask was put on and I no longer stopped breathing, but the sleep doctor refused to explain that to me, saying we'd deal with it at the followup if it didn't go away with the BiPAP machine. I want to understand everything so this did not sit well with me)

They might have been referring to Central Apnea (not obstructive, but your brain not initiating a breath). It is pretty common to have some of this when starting on CPAP, especially at the higher range of pressures. Often it just slowly goes away as your brain gets used to the new reality.
09-22-2016 03:44 PM
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trish6hundred Offline

Advisory Members

Posts: 6,449
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #6
RE: Adjustment issues
Hi plumblossom,
WELCOME! to the forum.!
I know CPAP therapy can take some getting used to but I want to encourage you to stick with it. Over some time, it does get better.
I wish you good luck on your CPAP journey.

trish6hundred
09-22-2016 06:42 PM
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plumblossom Offline

Members

Posts: 5
Joined: Sep 2016

Machine: DreamStation (Auto?)BiPAP (Pro?)
Mask Type: Full face mask
Mask Make & Model: Philips Amara View
Humidifier: Philips Dream Station
CPAP Pressure: 13-17
CPAP Software: SleepyHead

Other Comments: My BiPAP might change? And I also use nose pillow sometimes

Sex: Female
Location: Santa Cruz, California

Post: #7
RE: Adjustment issues
Thanks everybody. I did have an easier time last night after reading your advice and following it. When I held the water in my mouth I had a revelation-- I mean I knew this already but didn't register how it applied to the situation! So that was very cool and it did help. Though it didn't entirely prevent the air pressure from blowing my mouth open in either mask. I used the nose mask first last night, using your advice here to make sure it was sitting right--I'm not sure it is too small, and I can't try a bigger one till the fitting tech comes back (I expected him on Tuesday, I don't know what happened, so I'm calling in today to ask them to send him back as soon as possible). After I woke up for my first bathroom run (I reliably have to go downstairs twice or three times a night, nothing I can do about that unless I can magically get a different bladder), my nostril was sore in the same spot and I wanted to see how the full face mask worked with the new information anyway, so I switched. It was better, with less (subjective) leaking and less attacks on my mouth but it still leaked a lot and my mouth was still painfully dry when I woke up the second time. By then I had five hours on the machine so I gave myself a break, and didn't goi back on the machine till morning, when I decided to try it again for a bit while I tried to make up a little sleep.

I've been using Sleepyhead all along, which is why I know that since I've been using the machine I'm getting a marked reduction in all kinds of events, and all of them are in an acceptable range. I had one night with a lot of events, the second night, but I wasn't too worried about that because it was a terrible night in all other respects too, and it was only the second night. I do notice that Sleepyhead registers the leaks differently in different places. On the splash screen it tells me in increasingly urgent terms that my mask is leaking way too much and I need to talk to my provider. On the "Details" tab below the pie graph on the "Daily" page it says I have 0% large leaks no matter what it says anywhere else. But on the "Event Breakdown" chart it lists quite a lot of leaks I think (not knowing what the numbers mean yet)-- It says 7-Med, 27-95%, 37-Max, for leak rate, and 28-Min, 49-Med, 60-95%, 79-Max for total leaks. I have no idea what units those numbers refer to, but it's pretty clear something has to be done. I'm going to ask for a smaller mask to begin with, I guess.

I've long suspected I had a central apnea going on whatever else is happening (that is, whether or not I had the obstructive apnea that I clearly have). The reason I was told to schedule a sleep study is that my blood oxygen desaturates, waking or sleeping, when I'm given almost any kind of sedative (which they give to you by default when you have surgery or some other medical procedures I've had, and I've had to train the doctors here not to give me one unless they feel they absolutely must). I know that could be from throat slackening, but it always seemed to me that I just stop breathing with no obstruction. I have also always had a thing where, while wide awake, I discover I haven't breathed for a while and I have to catch up: and one of my mother's favorite stories about me as a baby is that I used to stop breathing for no visible reason & sometimes turn blue. She asked the pediatrician about it and he said "Sometimes they do that." And she said, "W@hat if she doesn't start breathing again? She could die!" And he said: "Sometimes they do that."

Well, in those days they didn't take the ills of kids as seriously as they do now, and I didn't die, and here I am, dealing with this as an almost-old person.
09-23-2016 12:00 PM
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chill Offline

Advisory Members

Posts: 860
Joined: Mar 2016

Machine: DreamStation X500
Mask Type: Full face mask
Mask Make & Model: Walk-in Mask Closet
Humidifier: DreamStation
CPAP Pressure: 13-16
CPAP Software: SleepyHead

Other Comments: CPAP True Believer

Sex: Male
Location: Vancouver, Canada

Post: #8
RE: Adjustment issues
Hi PlumBlossom, good to hear things are moving in the right direction.

Quote:After I woke up for my first bathroom run (I reliably have to go downstairs twice or three times a night, nothing I can do about that unless I can magically get a different bladder)
You may be surprised. Nocturia (frequent nighttime urination) is a common result of sleep apnea. Normally, when you sleep your body slows the production of urine. With SA, you don't stay in a deep enough sleep for that to happen so you continue to produce at daytime, or near daytime, levels. The result of this you are very familiar with. As was I. Now I wake up once in the night but it is not because I need to pee, thought sometimes I get up anyway.

Quote:I had five hours on the machine so I gave myself a break, and didn't go back on the machine till morning
I understand why you are doing this, but feel compelled SHa_biggrin5 to remind you that until you always use it, you won't get used to it and, of course, will not get the full benefit of therapy. Hopefully you get the right mask soon. I think you should try a chin strap too, it may help. Some people use a soft cervical collar (cheap at any drug store) to keep their mouth closed.

Quote:I'm getting a marked reduction in all kinds of events, and all of them are in an acceptable range
I think you will find that what is medically acceptable (AHI of 5 or less) and what you personally find acceptable is quite different. I'd term an AHI of 5 or less as "survivable", not acceptable. If I have a night with an AHI of 4.5, I feel like I have been clubbed in the head with a board. Below 2 I feel good, and below 1 I feel great. Still working on the consistent great. You need to focus on "How do I feel today?", not what you AHI number was last night. Sadly, this is where you need to take control of and responsibility for your therapy. Your doc and RT probably won't on their own.

Quote:On the splash screen it tells me in increasingly urgent terms that my mask is leaking way too much and I need to talk to my provider.
That comment tends to be a bit dramatic. I don't pay any attention to it.

What you describe does not sound like central apnea to me. Most of that applies to be and I don't have CA. It is something to keep an eye on and if the proportion of CA to OS and Hypopnea grows, get your doc to check it out. The only way to diagnose is in a sleep lab. The machines are just guessing. They often get it wrong, and leaks make getting it wrong more common in my experience (i.e. I get a lot of CA events when I get a lot of leaks and none when I don't). So don't get too concerned yet. But do keep an eye on it.
09-23-2016 12:46 PM
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plumblossom Offline

Members

Posts: 5
Joined: Sep 2016

Machine: DreamStation (Auto?)BiPAP (Pro?)
Mask Type: Full face mask
Mask Make & Model: Philips Amara View
Humidifier: Philips Dream Station
CPAP Pressure: 13-17
CPAP Software: SleepyHead

Other Comments: My BiPAP might change? And I also use nose pillow sometimes

Sex: Female
Location: Santa Cruz, California

Post: #9
RE: Adjustment issues
Thanks, Chill. I have an appointment Monday to get a new fitting. I have to go to San Jose (40 miles away) for it, which is annoying because I don't usually drive "over the hill"--I don't think I've done it yet this year!

I'm spending more time on the machine every night--the first time I only made the 4 hour minimum because I tried again in the morning. Last night my total from all 3 sessions was seven hours. I fiddle with the machine sometimes during the day too, trying to learn my way around it. As for the events, most nights the AHI number is more between 1-2. The second night was 10, but it's never been much over 2 since. I had 3 periodic breathing events last night, but they were when I was still awake so I am discounting them.

A question I have is what do the numbers in parentheses mean in the list of events in daily view? for example, it might say:

Clear Airway 4 events
#1 22:59:22 (18)

What does that 18 mean? seconds? some other unit of measurement? This isn't covered in the "Beginner's Guide."

And what does "Pressure Pulse" mean?


My bladder issues may be exacerbated by the apnea, but it's also for me general issue with known complicating factors & not limited to waking in the night.
09-23-2016 02:18 PM
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Sleeprider Online
Wiki Editor
Advisory Members

Posts: 3,369
Joined: Dec 2014

Machine: Resmed Aircurve 10 Vauto
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: Resmed Climateline
CPAP Pressure: Auto Bilevel 18/9, PS 3
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments:

Sex: Male
Location: Where they make Respironics

Post: #10
RE: Adjustment issues
As best we can tell, the number in parenthesis is time in apnea. You can double check that by clicking on the event to zoom in until you can see the no-flow and seconds of time.

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09-23-2016 03:16 PM
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