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Noob trying to feel my way around...
#1
Exclaimation 
OK, gotta lotta info to get down here, so I'll just get it done.Eat-popcorn

I'm 52y/o former USAF, 5'8", 450#, with COPD, lymphedema, water retention issues, spinal column problems (don't ask!), HBP and A-Fib. All are being controlled by VA meds (save for the weight) to some degree.

My machine is a Respironics REMstar M Series AUTO CPAP with A/C-Flex, SmartCard and Humidifier - upgraded from a DeVilbiss D-9000.

Questions:

1. Does anyone needs a CPAP like my DeVilbiss? If so, please contact me. I don't use it any more, and if someone needs it, maybe we can figure something out! It should do something for someone besides sitting around!Thinking-about

2. Also, whenever I change headgear or facemask gaskets I get a whole new rig from the VA...would anyone be of need for the perfectly GOOD plastic mask parts left over? I usually use a ResMed Ultra with a gel gasket.Big Grin

3. My machine is set to 16, and the headgear is pretty much cinched down to the point I wake up with creases in my face in order to lessen (note I didn't say 'alleviate') leakage, which still happens. Can anyone suggest a good nasal mask that doesn't leak at high pressure? Huh Nasal pillows and whole-face masks haven't worked, for various physical reasons.

4. On the subject of headgear: Where can one go to find any 'aftermarket' headgear? Is it available? Personally, most of the gear I've used braces over top of the head (which is pointless to me), and won't allow the gear to compensate for the roundness of the skull...hence, the mask will want to either ride high or the bottom won't be pressed down hard enough to maintain a seal at high pressure. Headgear that would fit around the head like a glove (say, a mesh netting with variable strap positions in addition to velcro use) would help, I think.

Right now, when I keep the bottom headgear fittings tight enough to minimize leakage, the headgear both cuts into my earlobes from below and compresses the area under and behind the ear itself...not comfy. The only other thing to do currently (and I'm using a good mask) is to have the lower straps ride directly over my ears --- both uncomfortable and unproductive, as they more easily slip around then, permitting leaks. Added to that: it don't feel none too good, neither! (I've spent too much time grading students' papers...)

5. I've noticed for the longest time that I have increased production of fluids from my ears since the CPAP pressure was boosted from 11 to 16...it's more pronounced on the ear I'm sleeping on than the one that's open to the air. I can soak up both sides of a good Q-Tip on one ear, which is both disgusting and curious: Does anyone know if this is 'normal'? My 'doctors' at the VA sure as heck don't know! Thinking-aboutToo-funny

Any ideas on anything I've posted? If you have any need for the 'leftovers' I've posted, just email me. I check email more often than I log in to most boards.

Yours,
The Chuckster
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#2
You might want to talk to your doctor about changing your machine's mode from a fixed CPAP pressure of 16 to a variable APAP pressure range of 11-16. This will allow the machine to lower the pressure when you don't need it so high, reducing the leaks.

Masks come in so many varieties that it's impossible to catalog them. It sounds to me like you do need to keep trying different nasal masks until you find one that works for you. Check with your equipment supplier and find out how often you're allowed to change masks.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
Hello Chuckster and welcome - For nasal mask suggestion, I use Activa LT mask works quite well for me even when the pressure goes to the maximum setting at 16 but of course everyone is different
http://www.resmed.com/au/products/mirage...s&sec=true

Your old machine might come handy as back-up when thing goes wrong with the new one and to dry up hoses

You can download the machine manual directly from here - section two
http://www.apneaboard.com/adjust-cpap-pr...tup-manual
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#4
(07-29-2012, 06:17 PM)Sleepster Wrote: You might want to talk to your doctor about changing your machine's mode from a fixed CPAP pressure of 16 to a variable APAP pressure range of 11-16. This will allow the machine to lower the pressure when you don't need it so high, reducing the leaks.

Masks come in so many varieties that it's impossible to catalog them. It sounds to me like you do need to keep trying different nasal masks until you find one that works for you. Check with your equipment supplier and find out how often you're allowed to change masks.

I need to get a new mask anyway, so I'll ask them then. Do the manuals available here show how to do that? I might try it, though my machine is supposed to reduce automatically the pressure when I exhale (Respironics REMstar M Series AUTO CPAP with A-Flex, SmartCard and Humidifier) - at least, that's how I understand it.

I'll also do a Google for CPAP masks & headgear....

Thanks, Zonk...I'll check your suggestions out ASAP!!!


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#5
Welcome to the forum!!! We are glad you joined us!!! Welcome

I would definitely download the manual for your xPAP machine. If for no other reason to learn all the "ins and outs" of how the machine works.

There is plenty of good info here. Don't hesitate to use the search function to see if others have already asked some of the questions you have. Sleep-well
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
(07-29-2012, 06:06 PM)Chuckster Wrote: OK, gotta lotta info to get down here, so I'll just get it done.Eat-popcorn

I'm 52y/o former USAF, 5'8", 450#, with COPD, lymphedema, water retention issues, spinal column problems (don't ask!), HBP and A-Fib. All are being controlled by VA meds (save for the weight) to some degree.

My machine is a Respironics REMstar M Series AUTO CPAP with A/C-Flex, SmartCard and Humidifier - upgraded from a DeVilbiss D-9000.

Questions:

1. Does anyone needs a CPAP like my DeVilbiss? If so, please contact me. I don't use it any more, and if someone needs it, maybe we can figure something out! It should do something for someone besides sitting around!Thinking-about

2. Also, whenever I change headgear or facemask gaskets I get a whole new rig from the VA...would anyone be of need for the perfectly GOOD plastic mask parts left over? I usually use a ResMed Ultra with a gel gasket.Big Grin

3. My machine is set to 16, and the headgear is pretty much cinched down to the point I wake up with creases in my face in order to lessen (note I didn't say 'alleviate') leakage, which still happens. Can anyone suggest a good nasal mask that doesn't leak at high pressure? Huh Nasal pillows and whole-face masks haven't worked, for various physical reasons.

4. On the subject of headgear: Where can one go to find any 'aftermarket' headgear? Is it available? Personally, most of the gear I've used braces over top of the head (which is pointless to me), and won't allow the gear to compensate for the roundness of the skull...hence, the mask will want to either ride high or the bottom won't be pressed down hard enough to maintain a seal at high pressure. Headgear that would fit around the head like a glove (say, a mesh netting with variable strap positions in addition to velcro use) would help, I think.

Right now, when I keep the bottom headgear fittings tight enough to minimize leakage, the headgear both cuts into my earlobes from below and compresses the area under and behind the ear itself...not comfy. The only other thing to do currently (and I'm using a good mask) is to have the lower straps ride directly over my ears --- both uncomfortable and unproductive, as they more easily slip around then, permitting leaks. Added to that: it don't feel none too good, neither! (I've spent too much time grading students' papers...)

5. I've noticed for the longest time that I have increased production of fluids from my ears since the CPAP pressure was boosted from 11 to 16...it's more pronounced on the ear I'm sleeping on than the one that's open to the air. I can soak up both sides of a good Q-Tip on one ear, which is both disgusting and curious: Does anyone know if this is 'normal'? My 'doctors' at the VA sure as heck don't know! Thinking-aboutToo-funny

Any ideas on anything I've posted? If you have any need for the 'leftovers' I've posted, just email me. I check email more often than I log in to most boards.

Yours,
The Chuckster

Hey Chuckster Welcome

Wow, lot's of questions! Lets start off with your old machine. You can either keep it as a backup, just in case something goes wrong with your current machine you will have something to fall back on while it is getting repaired, or you might want to contact Supplier #2 and ask about donating the machine. There is a donation program for folks who can't afford machines and don't have insurance. Secondwind (supplier number 2 on this list: http://www.apneaboard.com/forums/Thread-...plier-List) is involved with their program from what I understand.

While it is counter-intuitive, over-tightening masks can actually make leaks worse rather than better. I assume the VA works with some DME somewhere? If so it might pay to spend some time with them and have them show you how they can make this not leak at your pressure. This means either they will share some tricks and tips or realize you have the wrong mask! Either way, you win!

I understand what you are after as far as an aftermarket headgear source, but since a mask is a prescription item, there are a whole host of reasons why someone who understands ergonomics and anatomy would not wish to get into producing a line like that! They would end up having to go through the same basic process as someone creating any new prescription appliance and that would not be something I would wish on anyone! You might be better off taking your ideas to a friend who can sew!

Good luck with your therapy!
As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.

PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
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#7
(07-29-2012, 06:06 PM)Chuckster Wrote: 3. My machine is set to 16, and the headgear is pretty much cinched down to the point I wake up with creases in my face in order to lessen (note I didn't say 'alleviate') leakage, which still happens. Can anyone suggest a good nasal mask that doesn't leak at high pressure? Huh Nasal pillows and whole-face masks haven't worked, for various physical reasons.

My pressure is 8-14 cm. which I have found is too much for the three different nasal pillow masks that I have tried. But I just acquired a Fisher & Paykel Pilairo which is a nasal pillow mask that is rated up to 20 cm. It leaks less than any other mask I have tried, including regular nasal masks. The best part is that it is amazingly inobtrusive.

The Pilairo is brand new on the market so some places do not have it yet. Push come to shove you can get it from Supplier #1 (see list at top of page) if you pay for it yourself. If the VA hasn't heard of it yet just go up the chain until you find someone who knows about it. The Pilairo is currently getting a great deal of positive press in the sleep apnea community, so eventually you should find someone who knows about it.
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#8
Hi Chuckster, First, WELCOME! to the forum.! I think there is a company who makes a cap type of arrangement that you might be interested in. Put into a searchengine CPAP Cap and maybe you will find what you are looking for. Best of luck with your therapy.
trish6hundred
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#9
(07-29-2012, 06:31 PM)Chuckster Wrote: Do the manuals available here show how to do that?

Yes, the manuals here do show you how to change the mode from CPAP to APAP, and to change the pressure. It's pretty simple, but please be careful if you're going to go that route. Make small infrequent changes and use software to monitor their effects.

Quote:I might try it, though my machine is supposed to reduce automatically the pressure when I exhale (Respironics REMstar M Series AUTO CPAP with A-Flex, SmartCard and Humidifier) - at least, that's how I understand it.

A-Flex can be set to 1, 2, or 3. This lowers the pressure when you exhale. This is different from, and a small effect compared to, the automatic adjustments made by the machine in APAP mode.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
(07-29-2012, 06:31 PM)Chuckster Wrote:
(07-29-2012, 06:17 PM)Sleepster Wrote: You might want to talk to your doctor about changing your machine's mode from a fixed CPAP pressure of 16 to a variable APAP pressure range of 11-16. This will allow the machine to lower the pressure when you don't need it so high, reducing the leaks.

Masks come in so many varieties that it's impossible to catalog them. It sounds to me like you do need to keep trying different nasal masks until you find one that works for you. Check with your equipment supplier and find out how often you're allowed to change masks.

I need to get a new mask anyway, so I'll ask them then. Do the manuals available here show how to do that? I might try it, though my machine is supposed to reduce automatically the pressure when I exhale (Respironics REMstar M Series AUTO CPAP with A-Flex, SmartCard and Humidifier) - at least, that's how I understand it.

I'll also do a Google for CPAP masks & headgear....

Thanks, Zonk...I'll check your suggestions out ASAP!!!

Your machine is an APAP - it's quite capable of adjusting up and down. Thing is, from what you've said, it's programmed at a fixed 16 cm pressure, not to a pressure range that would allow the auto-adjust to actually do anything. You have an APAP, that's programmed to fixed CPAP mode.


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