have tried so many masks

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Deborah K.
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Re: have tried so many masks

Post by Deborah K. » Sat Oct 09, 2021 12:09 pm

Have you considered the Bleep system? It involves no straps and no actual mask, and I think it would fit literally any face shape. I use it and love it. It's a tad tricky to learn to use, but so worth the effort.
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onward60
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Re: have tried so many masks

Post by onward60 » Sun Oct 10, 2021 5:55 pm

ChicagoGranny wrote:
Fri Oct 08, 2021 10:19 am
onward60 wrote:
Fri Oct 08, 2021 9:52 am
He said no way would my nasal mask cause my tooth pain.
Doesn't that put the onus on him to diagnose?
Yeah, I think I need a new dentist but I have very limited options with my dental plan.

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onward60
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Re: have tried so many masks

Post by onward60 » Sun Oct 10, 2021 5:58 pm

ILoveFlowers wrote:
Sat Oct 09, 2021 12:58 am
I don't have much to add but I also have connective tissue disease (currently is mostly in remission, thankfully) and a small face. I have tried a lot of masks and I understand it can be so frustrating, so many of them cause pressure points or don't seal properly when you have a thin face. I always seem to come back to the AirFit P10. I find that it helps to switch the pillow size from time to time. I don't know why but some nights the medium just won't work for me and I grab the large and it's comfortable and seals. Other nights it's the other way around. Also this keeps from getting sore spots from one size. I also have rigged up my own memory foam padding for the straps and that helps a lot. I had some memory foam from a mattress topper and I cut thin strips with an electric knife and then just sewed a tube that fits over the side straps of the mask out of soft cotton rib knit and cut a strip of memory foam to fit inside it on the faceward side of the strap. It took a couple tries to get something I can live with but it's very soft. I don't toss and turn a lot; if you do this might not work for you.

Some nights I have trouble with mouth breathing and I use the 3m paper tape with lots of chapstick on my lips first and then peel it off very carefully and slowly in the morning. I am interested to try that new product for sealing the lips to see how it works.

Don't give up. Think outside the box and try things, you'll get it worked out.
Thanks for this. That's very interesting about swapping the sizes. I don't toss and turn so maybe your side strap idea would work for me.

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onward60
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Re: have tried so many masks

Post by onward60 » Sun Oct 10, 2021 6:02 pm

Julie wrote:
Sat Oct 09, 2021 4:40 am
For pressure points, I cut small (1.5" sq) pieces of foam to put under the mask where necessary and it does help, even if at some places there may be a tiny leak as a result.
Thanks. I am going to try the F20 tonight, maybe (because that's what they gave me) but it does make red marks on my nose. Is that the sort of place you can put foam?

I don't like the full face because it smooshes my cheeks into my mouth between my teeth. I guess I have to try it once in the night, though, before I reject it.

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Re: have tried so many masks

Post by onward60 » Sun Oct 10, 2021 6:05 pm

Deborah K. wrote:
Sat Oct 09, 2021 12:09 pm
Have you considered the Bleep system? It involves no straps and no actual mask, and I think it would fit literally any face shape. I use it and love it. It's a tad tricky to learn to use, but so worth the effort.
I have been thinking about it but I have fragile skin so I'm not sure it would work for me. I think I will go to the pillow next if I can get my hands on one and save the Bleep for last. If I have any money left by then!

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Janknitz
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Re: have tried so many masks

Post by Janknitz » Sun Oct 10, 2021 6:12 pm

Onward, maybe you need to consider something else.

Listen to Karen Wolk's presentation for the American Sleep Apnea Association conference in 2019. https://www.youtube.com/watch?v=pozyDRaE-LI She ended up with an implanted stimulator. And she had significant cognitive issues related to her apnea that cleared up with this device--so there's hope!

This device is not something most of us would choose (if anyone suggested it for me the answer would be a big HELL NO!!!), but consider that there would be no mask issues to struggle with.

Before anyone flames me for suggesting this, while CPAP is considered the "gold standard" for treatment and all of us are here because we really believe in CPAP treatment, every individual is unique and has unique needs. Given all the challenges Onward is facing, this might be an option for her to consider. Onward, I hope you will have frank talk with your sleep doctor about the struggles and the memory issues, and if your doctor pooh pooh's this as an option while nothing else is working, get a second opinion.
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onward60
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Re: have tried so many masks

Post by onward60 » Mon Oct 11, 2021 8:31 am

Janknitz wrote:
Sun Oct 10, 2021 6:12 pm
Onward, maybe you need to consider something else.

Listen to Karen Wolk's presentation for the American Sleep Apnea Association conference in 2019. https://www.youtube.com/watch?v=pozyDRaE-LI She ended up with an implanted stimulator. And she had significant cognitive issues related to her apnea that cleared up with this device--so there's hope!

This device is not something most of us would choose (if anyone suggested it for me the answer would be a big HELL NO!!!), but consider that there would be no mask issues to struggle with.

Before anyone flames me for suggesting this, while CPAP is considered the "gold standard" for treatment and all of us are here because we really believe in CPAP treatment, every individual is unique and has unique needs. Given all the challenges Onward is facing, this might be an option for her to consider. Onward, I hope you will have frank talk with your sleep doctor about the struggles and the memory issues, and if your doctor pooh pooh's this as an option while nothing else is working, get a second opinion.
Thank you very much. I have heard of this. I think you have to have an AHI of 15 to get it. I am 14.2. However, I think I fell asleep in my recliner during my test (long story), so probably that's not an accurate number. Also you have to fail a serious attempt at CPAP. This is my serious attempt. Also not sure if my insurance would cover it no matter what. I may have to wait until I qualify for Medicare which is several years away. And I would have to travel a distance to get any kind of surgery for this. So I am keeping this in mind and struggling on with the bleepin mask.

That video really hit home. Her story was so much like mine. Mine also started with a nightmare in psych and years to get a diagnosis and still on disability.

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onward60
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Re: have tried so many masks

Post by onward60 » Mon Oct 11, 2021 11:52 am

I wonder if anyone can help me with the results of my home sleep study. I copied this from my patient portal. I know there is more info, but it was not released. I think I could get it if I needed to be I really dislike my sleep NP. He seems awkward and uncomfortable which makes me feel awkward and uncomfortable. He also discourages me. He said, "Fixing the sleep apnea isn't going to fix your sleep problem," and then got awkward and wouldn't elaborate.

Here's what it says:

STUDY PARAMETERS: Quality of the recording was satisfactory for
accurate interpretation. Recording montage consisted of pulse
arterial tone (PAT), pulse rate, pulse oximetry, snore
microphone, actigraphy and body position using a type 3 device.
During the recording, hypopneas are associated with a 4% or
greater oxygen desaturation. Although EEG was not recorded, sleep
staging was estimated by the analysis software. The reported
pAHI, pAHIc and pRDI are surrogates for the AHI, CAI and RDI,
respectively.

TECHNICAL LIMITATIONS: None

Data presented in the following interpretation reflects a subset
of recorded data. Please see the technical scoring summary for
additional data.

Recorder: Watch-PAT ONE
Recorder started by patient: 04/02/2021.
Total recording time: 498 minutes (08 hours, 18 minutes).
Valid total sleep time: 275 minutes (04 hours, 35 minutes).
Patient identification bracelet: no

BMI: 19. kg/m2
Epworth sleepiness scale score: 11 / 24
Snoring.

Obstructive apneas/hypopneas: 65
Central appearing apneas: 0
Apnea-hypopnea index: 14.2 events per hour.
Central apnea-hypopnea index: 0.0 central events per hour.

Oxyhemoglobin saturation range: 99% to 94%
Oxygen desaturation index: 11.3 desaturations per hour.
Time oxygen saturation < 88%: 0.8 minutes (.02%) of sleep time.

IMPRESSION: Mild obstructive sleep apnea syndrome. Obstructive
sleep apnea is associated with oxyhemoglobin desaturation to a
low of 83%.


It says my apnea is mild. It says stuff about desaturations that I don't understand. It says I had "valid" sleep about half the time. But then it says I was only desaturated below 88% .02% of the time.

If this is mild and fixing the apnea isn't going to fix my problem, then I wonder why I am going through so much stress and difficulty trying to find a mask that works. I'm very discouraged. And very, very tired. If my apnea is mild, why am I so tired? I don't understand this. :(

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Julie
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Re: have tried so many masks

Post by Julie » Mon Oct 11, 2021 12:19 pm

Probably because you're trying to deal with a 2nd rate 'patient portal' (whatever that is). My cousin was an NP and a good one, but I'm sorry to say yours doesn't have a clue.
Can you not afford (qualify for?) a proper study, or at least one that uses EEG and/or a home study not graded by the NP but a proper sleep doctor? And one that doesn't do BMI's (outdated - tho' they may all use them I suppose)?

And I agree that your desats are almost not worth mentioning.

Sorry, haven't read through your whole story, but have you had recent labwork for other conditions that might be causing your sleep problems?

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ChicagoGranny
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Re: have tried so many masks

Post by ChicagoGranny » Mon Oct 11, 2021 12:32 pm

onward60 wrote:
Mon Oct 11, 2021 11:52 am
If this is mild and fixing the apnea isn't going to fix my problem, then I wonder why I am going through so much stress and difficulty trying to find a mask that works. I'm very discouraged. And very, very tired. If my apnea is mild, why am I so tired? I don't understand this.
The study results show mild obstructive apnea with relatively minor desats (blood-oxygen levels below normal). CPAP could fix the apnea if the mask problems could be solved.

Here is my recommendation. Take a two-week hiatus from CPAP. When you go to bed, try to avoid back-sleeping. Sleep on your sides or stomach. We can give you some tips to avoid back-sleeping, but avoiding it entirely is difficult. You might consider avoiding back-sleeping a good part of the night to be a success. Which position are you accustomed to sleeping in?

The reason for avoiding back-sleeping is that obstructive sleep apnea is most severe in this position. Gravity is pulling the tongue and soft palate directly into the airway. In the other positions, the effect is not as great.

If you decide to take a break from CPAP, come back to this thread in a week or two and let us know how things are going.

BTW, did you ever say why you sought a sleep study to begin with?

Janknitz
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Re: have tried so many masks

Post by Janknitz » Mon Oct 11, 2021 12:44 pm

Are you with Kaiser by any chance? You need an in-lab polysomnogram to see if something else is going on. The Watch Pat is fine for "run of the mill" OSA, but with the cognitive issues you are complaining of, you need a more thorough assessment.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

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ChicagoGranny
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Re: have tried so many masks

Post by ChicagoGranny » Mon Oct 11, 2021 12:49 pm

onward60 wrote:
Sat Oct 02, 2021 9:54 am


To complicate my life, my doctor has referred for neurological testing for my memory problems. I think if I have dementia, I don't want to know. Just more anxiety, worse sleep, more trouble with the CPAP.
What brought this on? Did you tell the doctor something about memory problems?

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onward60
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Re: have tried so many masks

Post by onward60 » Mon Oct 11, 2021 12:55 pm

Janknitz wrote:
Mon Oct 11, 2021 12:44 pm
Are you with Kaiser by any chance? You need an in-lab polysomnogram to see if something else is going on. The Watch Pat is fine for "run of the mill" OSA, but with the cognitive issues you are complaining of, you need a more thorough assessment.
No, we don't have Kaiser up here.

I used to be on sleep meds and was really messed up cognitively from them. My PC said to see how I was after she got me off the meds. I've been off 2 years and am still messed up. My wonderful doctor left the practice, and I have an NP now who's just so-so. It was my physical therapist who I've been seeing for years who really leaned on me to get a sleep test. I did it to make her happy, not because I believed I had OSA. Low and behold, she was right.

Once I was diagnosed, my daughter had a sleep apnea at home test, too, that showed only a few apneas per hour. But she is exhausted all the time, as though she does not sleep, and has mood swings. I told her to go to a lab. I think she might. But I'm afraid to go, myself. :roll:

She went to a different medical group and liked her NP. I wonder if I could switch groups. I am so unimpressed with my current group.

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Re: have tried so many masks

Post by onward60 » Mon Oct 11, 2021 1:45 pm

Julie wrote:
Mon Oct 11, 2021 12:19 pm
Probably because you're trying to deal with a 2nd rate 'patient portal' (whatever that is). My cousin was an NP and a good one, but I'm sorry to say yours doesn't have a clue.
Can you not afford (qualify for?) a proper study, or at least one that uses EEG and/or a home study not graded by the NP but a proper sleep doctor? And one that doesn't do BMI's (outdated - tho' they may all use them I suppose)?

And I agree that your desats are almost not worth mentioning.

Sorry, haven't read through your whole story, but have you had recent labwork for other conditions that might be causing your sleep problems?
Actually, there was a sleep doctor who reported to the NP, and at the appointment I could see the NP was reading some long, complicated thing with graphs, but all that showed up in my portal (secure messaging system) was that summary. I didn't clip all of it. My BMI is on the low side.

I've had tons of labs. I had an NP looking at menopausal stuff but she left, too, and there's a very long line to see her replacement.

Is that 88 number the desat number? And if I don't have desats, then why go to a lab? In fact, if I'm not having desats, why use a CPAP?

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Re: have tried so many masks

Post by onward60 » Mon Oct 11, 2021 1:49 pm

ChicagoGranny wrote:
Mon Oct 11, 2021 12:49 pm
onward60 wrote:
Sat Oct 02, 2021 9:54 am


To complicate my life, my doctor has referred for neurological testing for my memory problems. I think if I have dementia, I don't want to know. Just more anxiety, worse sleep, more trouble with the CPAP.
What brought this on? Did you tell the doctor something about memory problems?
Yes, I told her that my daughter has been constantly telling me I already said that or she already told me that. I asked her to please stop. And recently I had a couple of holes in my memory where I did something and nothing could jog my memory to remember that I did it. There's just a hole there. Not little things. Important things. :( So my doctor did a little memory test in the office with me and told me I did fine and then sent for for testing. I suspect I did not do as fine as she said.

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