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newly diagnosed
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alby_c Offline

Preferred Members

Posts: 81
Joined: Aug 2013

Machine: resmed s9 autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: Resmed
CPAP Pressure: 6 - 12
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Brisbane, Australia

Post: #11
RE: newly diagnosed
Welcome.
As a reasonably new member myself I would encourage you to persevere with CPAP - The number of events an hour you are getting is significant - do some research on where this condition will take you untreated. - it is very scary but that is not the reason to get treatment - for me, and many others who have shared - it is literally life saving - going from dragging myself around simply working , eating and sleeping, to having energy again - feeling alive - actually wanting to get out and do things - like flying stunt kites!

I hate the masks - I dislike the smell, I hate how they feel on the face I hate I have to wake up to remove it to scratch my nose and the fact the hose drags around the bed but the proof is in the sleeping - my wife says I am actually restfull in bed rather than thrashing around all night and despite the snarly feeling with the mask when I wake up - I have the energy now.

I use the nasal pillows - very low profile and they really worked - only word of caution, I could not breath through them if the machine is turned off so I refused them at the titration study - they only work when pressurised and should only be tested that way. I actually used a very heavy duty nasal mask at my study which made me look like Hannibal Lector. I am glad I gave the nasal pillows a second go based on the fantastic reviews I kept reading about them
(This post was last modified: 09-13-2013 04:11 AM by alby_c.)
09-13-2013 04:09 AM
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Clementine Offline

Preferred Members-2

Posts: 208
Joined: Sep 2013

Machine: ResMed VPap Auto
Mask Type: Nasal pillows
Mask Make & Model: ResMed AirFit P10
Humidifier: ResMed H5i--not using currently
CPAP Pressure: Auto -- 8/13.2 PS 3.2
CPAP Software: SleepyHead

Other Comments: Began with machine on 7/7/14.

Sex: Female
Location: eastern Iowa

Post: #12
RE: newly diagnosed
Thanks again for all of the info. I've been living with this for years --- my first sleep study was in 1996 and I was initially diagnosed then. I had another sleep study last fall and then the resulting night of trying masks --- and I flunked. I feel so discouraged, but felt that I could help myself by losing weight.

I felt claustrophobic even with the nasal pillow type mask. What happens when the power goes out? The thought scares me.

So, if I get a prescription, I go to a medical equipment place and get a mask? And they will have several to choose from? Alby, I see that you use something called a Resmed Swift FX. For people like me with claustrophobia, is that a good model to ask for?
09-15-2013 11:07 AM
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me50 Offline

Advisory Members

Posts: 2,559
Joined: Aug 2013

Machine: resmed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Wisp and Silicone Head gear
Humidifier: resmed H5i
CPAP Pressure: 18/8
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location: USA

Post: #13
RE: newly diagnosed
This brings up another subject. When I went to the new DME last week, they have samples of masks that you can look at but none that you can try on. You choose one that you think will work and they order it (if they don't have it in stock) and you use it. That is pretty crazy to me. I think that any DME's office should have masks for a patient to try and also a bed to lay on to get a feel for the mask while in a sleeping position. The first DME I went to had a bed to lay on and also masks to try out (when I changed to a different insurance company, I had to change to a different DME).
09-15-2013 12:05 PM
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bwexler Offline

Advisory Members

Posts: 563
Joined: Mar 2012

Machine: PRS 1 BiPAP autoSV Advanced, with Heated Tube humidifier
Mask Type: Nasal mask
Mask Make & Model: Sleepweaver √Član
Humidifier: Resperonics Heated Tube humidifier
CPAP Pressure: Max pressure 25.0 cm H20, Max
CPAP Software: SleepyHead EncorePro

Other Comments: CMS 50i with Software for SpO2

Sex: Male
Location: San Marcos, CA, USA

Post: #14
RE: newly diagnosed
If they showed you less than 100 masks to choose from they were not trying very hard. Some DMEs stock a select few mask brands and models. I have found greatest comfort and success with them, oddballs they tend not to carry.
My current favorite being SleepWeaver cloth masks. An early favorite was called no mask. It had nasal pillows and was supported by a custom molded mouthpiece, no headgear straps at all.
Study the suppliers list and look at their selection help tools. That can help to narrow your choices to a manageable list.

Don't give up.


(09-15-2013 11:07 AM)Clementine Wrote:  Thanks again for all of the info. I've been living with this for years --- my first sleep study was in 1996 and I was initially diagnosed then. I had another sleep study last fall and then the resulting night of trying masks --- and I flunked. I feel so discouraged, but felt that I could help myself by losing weight.

I felt claustrophobic even with the nasal pillow type mask. What happens when the power goes out? The thought scares me.

So, if I get a prescription, I go to a medical equipment place and get a mask? And they will have several to choose from? Alby, I see that you use something called a Resmed Swift FX. For people like me with claustrophobia, is that a good model to ask for?
09-15-2013 02:59 PM
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Clementine Offline

Preferred Members-2

Posts: 208
Joined: Sep 2013

Machine: ResMed VPap Auto
Mask Type: Nasal pillows
Mask Make & Model: ResMed AirFit P10
Humidifier: ResMed H5i--not using currently
CPAP Pressure: Auto -- 8/13.2 PS 3.2
CPAP Software: SleepyHead

Other Comments: Began with machine on 7/7/14.

Sex: Female
Location: eastern Iowa

Post: #15
RE: newly diagnosed
Well, I'm back . . . at my yearly physical in April, my family dr convinced me to see a dr. at the sleep clinic (hadn't seen one previously; just had the sleep studies). The sleep clinic doc convinced me to have another sleep study with the masks, using the nasal pillow masks specifically. I tried 3 of them and settled on one that has two stretchy straps around the back of the head. The dr also gave me a prescription for Xanax, since I had mentioned claustrophobia and anxiety with those masks on my face.
That night I actually slept, and slept well! The sleep clinician said that according to the readings she could see, it was good sleep. So, I now have a ResMed machine and the nasal pillows mask.

So, I have been getting through about 3-4 hours in the night with the mask before I rip it off my face. Sad

But, I'm encouraged that I could actually sleep with the thing on. The one night I actually slept all night with it, I had taken the Xanax. I don't like taking it and just plain don't want the xanax here in my home at all, but maybe I'll have to use it in order to get used to this mask?


Now, I'm fighting a cold, and didn't even try to sleep with the mask last night due to congestion. How do you all deal with illness and using the mask? Should I be getting a new mask? I did wear it the first night of illness.

ETA: My pressure is 4 and 10, if that makes any difference. Bi-level air pressure really made the biggest different during the most recent sleep study. I'm surprised the previous nurse didn't try that with me -- I swear she was determined to blow my head up like a balloon.
(This post was last modified: 07-12-2014 04:49 PM by Clementine.)
07-12-2014 04:46 PM
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vsheline Offline

Advisory Members

Posts: 1,907
Joined: Jul 2012

Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
Mask Type: Full face mask
Mask Make & Model: F10 or SimPlus w/ 2Liners. MirageQuatro & Gecko gel pad
Humidifier: H5i
CPAP Pressure: 15 EPAP, PS 5-10
CPAP Software: ResScan

Other Comments: Marfan Syndrome, chronic bradycardia, occasional Cheyne-Stokes Respiration

Sex: Male
Location: California, USA

Post: #16
RE: newly diagnosed
(07-12-2014 04:46 PM)Clementine Wrote:  So, I have been getting through about 3-4 hours in the night with the mask before I rip it off my face. Sad

But, I'm encouraged that I could actually sleep with the thing on. The one night I actually slept all night with it, I had taken the Xanax. I don't like taking it and just plain don't want the xanax here in my home at all, but maybe I'll have to use it in order to get used to this mask?
...

ETA: My pressure is 4 and 10, if that makes any difference. Bi-level air pressure really made the biggest different during the most recent sleep study. I'm surprised the previous nurse didn't try that with me -- I swear she was determined to blow my head up like a balloon.

Hi Clementine,

Welcome back!

Glad to hear you're making progress and are working on getting used to the mask.

Best to be patient with yourself. As long as you never give up you are making progress and you will get there, to a place where the therapy is working for you and it is no longer hard to wear the mask. Actually, the mask is your friend and will give you a fuller and longer life.

Let's assume for the moment (for sake of discussion) that 10 and 4 will be the optimal pressures for you. Nonetheless, it is less important to use optimal settings (10 and 4) than to use the mask all night.

If different setting would make it easier to get used to using the mask all night, it may be better to use whatever settings you can bear to use all night, and then gradually change back to the optimal settings of 10 and 4.

So I suggest that you talk to your doctor about whatever you think may make it easier to keep the mask on.

For example, if perhaps you are feeling the pressure is too high, your doctor may agree that it would be okay to use 9 and 4 (or 8 and 4, or whatever) for a while and then, when it is not such a struggle, to gradually work up to the originally prescribed settings.

Take care,
--- Vaughn

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 07-13-2014 02:35 PM by vsheline.)
07-13-2014 01:49 AM
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JimZZZ Offline

Advisory Members

Posts: 370
Joined: Dec 2013

Machine: ResMed S9 AutoSet
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: ResMed H5i (not using)
CPAP Pressure: 9 - 14
CPAP Software: ResScan SleepyHead

Other Comments: CareFusion PureSom Ultra Chinstrap

Sex: Male
Location: Western North Carolina

Post: #17
RE: newly diagnosed
(07-12-2014 04:46 PM)Clementine Wrote:  Now, I'm fighting a cold, and didn't even try to sleep with the mask last night due to congestion. How do you all deal with illness and using the mask? Should I be getting a new mask? I did wear it the first night of illness.
Some of the nasal mask users keep a full face mask around to use when nasal congestion precludes the use of a nasal mask. As for me, I find the full face mask (F&P Simplus) more comfortable and use it exclusively. It's roomy and feels less restrictive than nasal masks to me. I can't tolerate anything touching or anywhere near my nose. Just me.Blowing-nose
07-13-2014 08:53 AM
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Clementine Offline

Preferred Members-2

Posts: 208
Joined: Sep 2013

Machine: ResMed VPap Auto
Mask Type: Nasal pillows
Mask Make & Model: ResMed AirFit P10
Humidifier: ResMed H5i--not using currently
CPAP Pressure: Auto -- 8/13.2 PS 3.2
CPAP Software: SleepyHead

Other Comments: Began with machine on 7/7/14.

Sex: Female
Location: eastern Iowa

Post: #18
RE: newly diagnosed
vsheline, thanks for your reply. The air pressure seems fine to me --- the bi-level really did the trick. 10/4 doesn't seem bad to me at all. I agree that it's more important that I get used to the mask. My sleep doc said the same thing, and that's the reason for the low numbers.

I looked through alternate masks yesterday online, and I see one called the tap pap that really looks interesting and like it might be the one for me. The straps on my current mask are too tight --- I just have a fat head, I guess, LOL. Actually, the straps hit my cheekbones and are very tight across there. When I lift the straps up off my cheeks, it feels soooo much better. I need to find something different. They did give me a loaner to try --- nose pillows with adjustable straps -- but the mask on that one is larger and more uncomfortable.
I'm about ready to just sew some elastic on the too-tight straps, and that may do the trick.

Jim, I KWYM about not liking anything touching the nose. But when I put a full mask on, that claustrophobia kicks in.

Still fighting a cold, so I gave up on the mask last night. I lasted about a half hour with the thing.

I am so glad I have found this board --- thanks, everyone, for the replies!
07-13-2014 10:45 AM
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