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How to keep mask on while sleeping!
#1
How to keep mask on while sleeping!
Hello and thank you ahead of time for your help.

My 17 year old son newly diagnosed with sleep apnea. He had a hospital sleep study done and had an AHI of 9.9 per hour. Started the machine Oct 6th. He had 7 hours of sleep the 1st night and has not had success since then, it's been more than 6 weeks and he is so tired all the time.

The issue is, once he falls asleep, he cannot keep the mask on, as he takes it off as soon as he falls asleep.

We saw the pulmonologist, he had no suggestions for us, other than "he will get used to it". The respiratory therapist looked at the machine, said it is set correctly. We spoke to a "specialist" for fitting masks who recommended to switch to full face mask. We tried socks on his hands, changing from nasal prongs to full face mask, shortening the ramp time from 45 minutes to 30 minutes. No success. My son is very frustrated that he cannot keep the mask on and get sleep.

We are desperate to find a way to keep the mask on. The ap on his phone says his AHI goes down to 1.5 and the mask fit is 100%, with the usage time 1 to 1.25 hours, which we believe is the time he is laying there waiting to fall asleep, not actually sleeping during this time.

This sounds crazy, but our next idea is to put something on his elbows to keep his arms straight while he sleeps so he cannot reach the mask. Crazy, right? 

Anybody have any ideas? Thank you. Leila.
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#2
RE: How to keep mask on while sleeping!
I'd tend to agree! He'll have to get used to it. Not a real pleasant thought, but I think a very realistic one. 

Maybe have him wear the mask prior to going to bed, while watching tv or whatever else he might be doing. Acclimation is the key here. The more he wears it while NOT sleeping, might enable him to adapt faster. It could take a few weeks, but that's okay. 

17 yrs. old and he has sleep apnea. That's gotta be tough. I truly feel for him. I wasn't diagnosed until I was 64. 

Anyways, support him as best you can, motivate him as well. I wish him the best.
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#3
RE: How to keep mask on while sleeping!
What pressures is he seeing? If his pressure is set at 4-15, that's a very wide range. At that low starting pressure, try turning the ramp off and see if he can get used to the "normal" pressure the machine is providing. That might make getting used to CPAP easier if the pressure doesn't jump up at the end of the ramp time.

Also, he could try using the machine while watching TV or reading. That would allow him to get used to the feel of it before going to sleep.
The current version of OSCAR is 1.2.0.  We recommend upgrading from any earlier version.

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Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#4
RE: How to keep mask on while sleeping!
(12-01-2020, 10:45 PM)GuyScharf Wrote: What pressures is he seeing? If his pressure is set at 4-15, that's a very wide range.  At that low starting pressure, try turning the ramp off and see if he can get used to the "normal" pressure the machine is providing. That might make getting used to CPAP easier if the pressure doesn't jump up at the end of the ramp time.

Also, he could try using the machine while watching TV or reading. That would allow him to get used to the feel of it before going to sleep.

That's an outstanding suggestion!  Well-done
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#5
RE: How to keep mask on while sleeping!
Welcome to Apnea Board,

I'd suggest giving us a bit of sleep data. OSCAR is a free report tool that will show us a lot of info regarding his sleep. One area of importance is how many events are still happening, and pressures that are effective. Most of us on Apnea Board are familiar with the situation that sleep docs and sleep study technicians are not very good at choosing reasonable, useable PAP pressures. I myself had the issue of ripping off the mask when I started. Part of the reason, doc didn't really monitor anything but compliance time. He did not care about anything else than am I using PAP, nor were there any follow-ups on changing settings if warranted.

Here is what we do, we look at the data and suggest this or that event is still present. How about you adjust this setting. Voila things change. If better we keep going, if worse, we change it again or change something else until it does get better.

A main reason for ripping the mask off is too low of air pressure. It may feel like breathing through a soda straw. OK let's issue some homework and we together get therapy going right. It's very likely that 4 is too low. Try not to use Ramp button if possible, it delays therapy pressures.

Again, download OSCAR

Order the CPAP Setup Manual for the exact PAP machine. You need to find brand and model exactly as yours. ResMed, Philips Respironics, etc. Most models have a name on the front panel and an ID sticker on the back or bottom. Disconnect the water tub if you're about to turn the PAP over. Once you get the manual, read how to operate and adjust. In the US, you the patient can adjust pressures with no edited script. Doc and DME supplier cannot edit pressures without a new script.

You will need an SD card for the PAP if you don't have one now. It must be: any brand is OK, SD or SDHC, 2-32GB capacity, standard SD size, sometimes micro SD in an adapter work, sometimes not, it also needs formatted to FAT32 or let PAP format when you insert the SD.

Next, you have this unlocked SD in the PAP machine, let son use the PAP, overnight if possible, after awakening, remove SD and insert in PC SD card reader, open OSCAR and create a user profile, then upload data from SD. Organize the Daily, chart on the left close calendar via the triangle next to date, turn off Pie chart in options, then post like your first but include an answer to "how do you feel?" and an Choose File/Add Attachment below.

I know it sounds like a lot, but it becomes easier quickly and is the best way to get answers and get PAP therapy up to comfortable, well treated status. Ask any questions or if more detailed help is needed.
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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#6
RE: How to keep mask on while sleeping!
I have an 11lb weighted blanket, it can make it much harder to move hands, arms, legs etc. Also really relaxing being squished by the blanket. Might help perhaps.
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#7
RE: How to keep mask on while sleeping!
Thank you for your reply and words of encouragement. I will have him wear it while not sleeping starting today!
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#8
RE: How to keep mask on while sleeping!
Hi GuyScharf,
Thank you so much for your post. The pressure he is seeing: 90% pressure is 7.3cmH2O, with an average cpap pressure of 5.4cmH2O according to his phone ap, Philips Dreammapper. 
Great idea! We are going to figure out how to turn off the ramp and try him getting used to the real pressure, instead of the ramp option with the pressure jump at the end. Thanks again.
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#9
RE: How to keep mask on while sleeping!
Thank you, SarcasticDave for your helpful post.

I downloaded OSCAR and set up a profile and organized the daily section. It's great to see the information, and I will be learning what it means. I'm attaching the information from last nights cpap usage. He went to bed, fell asleep and removed his mask. I got up before 1:00am and woke him up to put his mask back on. We switched him back to the nasal prongs to see how that went. Tonight we are going to figure out how to shut off the ramp option, and he is wearing his mask while doing homework (just the face part, not the hose & machine).

Any advice you have on the settings would be greatly appreciated. If turning off the ramp doesn't have any change, we plan to leave it off and then increase the pressure after I get the manual. What would be a good pressure to set?

Thanks again! Leila. P.S. Is the attachment visible on your end?

[Image: attachment.php?aid=28452]


Attached Files Thumbnail(s)
   
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#10
RE: How to keep mask on while sleeping!
I see the chart dated 12/1/2020 and others have the code for attaching but didn't. We're each limited to 3 attachments on a post as is. No worries, we do have the one to work with. Excellent job on chart organization.

OK some info. Respironics has a dedicated Ramp button, so removing it from the settings may not be needed. Just don't push the Ramp button and it shouldn't run the Ramp program.

Now what I'd suggest on the lines of setting edits, and I'll refer to the OSCAR chart that did attach so you can see why I say what I did. On the left side where AHI is in an orange box, you see AHI 3.88. OK not too bad as under 5 is medically treated. So we are dealing with comfort mostly for the edits. Below the AHI is colored bars for various things, including a blue one for Hypopnea. That is the high one here, it indicates a partial apnea at about 50-80% blockage. You can see the flags over on the right at the top Events area too.

OK for combat on these Hypopnea somewhat but more to assist in comfort, edit the Min pressure of 4 to 6. Also look for a setting called Flex. Try Flex of 2. This allows some exhale relief that should add comfort too. Note that you the patient may adjust this legally with no new edited prescription, but doc and the DME supplier can't unless they have a new script. The PAP machine needs plugged in but therapy is Off. Find the Ramp and Dial, hold both in for 5 seconds or so. A clinical menu pops up. Use the Dial to scroll around to Min Pressure 4. Click the dial and turn to change 4 to 6. Click dial to lock. Scroll again to find Flex, it may be in a comfort area instead of therapy settings. Click and edit to give Flex of 2. Have your son try that and see if it's better.
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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