Replies to This Discussion

Permalink Reply by Mike on April 23, 2009 at 10:24pm

when you mention a whistle, the first thing i think of is there's a slight leak of some sort. what happens when you adjust the pillows in your nostrils a bit -- i.e., play around with the fit a little more (NOT make it tighter, just kind of switch positions of the pillows in your nostrils)? does the sound go away?

having a hard time pushing out against the air pressure is normal. i'm not sure whether your ResMed Escape System has a feature called EPR (Expiratory Pressure Relief) which helps folks manage exhaling against the pressure by adjusting the exhalation pressure a notch or two. if not, you should ask for a machine with EPR. for me, the Respironics equivalent of EPR (A-Flex and C-Flex), meant the difference between using the machine and not using the machine -- it was that important.

With the tired feeling, it's perfectly normal to feel more tired as you have more fragmented sleep trying to get used to this dang thing strapped to your face. trust me: it goes away. you get used to it, and then you'll be waking up more refreshed than ever. with time.

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Permalink Reply by BeeAsleep on April 23, 2009 at 10:31pm

Thanks Mike. I did giggle the pillows around in my nose. It is weird, just a tiny high pitch whistle. I will make sure everything is in place and fitting correctly.

I am going to talk to my doctor and see if he will recommend the biPap machine so I can get the insurance to pay. I have mixed sleep apnea and I am going to get the Sleep report as you all have suggested. I have gotten so much good information from this forum I feel like I can go in to my doc and ask him for what I want. I don't like the CPAP as it stands, I feel panicy when I try to breath out, but I try to stay calm and talk myself into wearing the mask all night long. Thanks for telling me that it will get better and I will have more energy.

Mike said:

when you mention a whistle, the first thing i think of is there's a slight leak of some sort. what happens when you adjust the pillows in your nostrils a bit -- i.e., play around with the fit a little more (NOT make it tighter, just kind of switch positions of the pillows in your nostrils)? does the sound go away?

having a hard time pushing out against the air pressure is normal. i'm not sure whether your ResMed Escape System has a feature called EPR (Expiratory Pressure Relief) which helps folks manage exhaling against the pressure by adjusting the exhalation pressure a notch or two. if not, you should ask for a machine with EPR. for me, the Respironics equivalent of EPR (A-Flex and C-Flex), meant the difference between using the machine and not using the machine -- it was that important.

With the tired feeling, it's perfectly normal to feel more tired as you have more fragmented sleep trying to get used to this dang thing strapped to your face. trust me: it goes away. you get used to it, and then you'll be waking up more refreshed than ever. with time.

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Permalink Reply by Judy on April 23, 2009 at 11:19pm

Forgive me, BeeASleep, but when I first saw the subject of this thread I had to giggle. A little story about why. I had been on xPAP for quite a while and was doing well altho we didn't have my Leaks under control as yet. One night I was STARTLED out of sleep by a loud, piercing whistle!!! I had no idea what it was and lay in bed waiting for another or some other sound worth getting out of bed and checking for. But nothing so I just snuggled back down and was dozing off when there was another whistle, not as loud or piercing but still as strong as when you are whistling for your dog. So I lay there aware again waiting for .... whatever. When all was quiet and nothing else occurred I snuggled back down again and dozed off, except that there were two more soft whistles. IT WAS ME! It was air escaping from the corner of my mouth!!! Now, I'd experienced the "lip flutters" a few times before - and since - but that was the ONLY night I whistled!!! And thus, why I snickered and giggled when I saw the subject of this thread.

1] Make sure you have secured your humidifier lid tightly. It should snap when you close it securely.
2] Check your hose for leaks
3] Roll or turn the barrel of your Swift LT a bit or swizzle the pillows a bit in your nostrils
4] You should NOT have to force air out on exhalation. You either need an xPAP w/EPR or your pressure lowered.
5] If you have mixed apnea you are a candidate for a special type of bi-level, an ASV
6] Most insurances will not pay for a bi-level until you have "failed" CPAP therapy.
7] Try real hard to get a fully data capable APAP instead of that Escape. An APAP would serve as a good backup device for a bi-level ASV.
8] A properly set APAP w/EPR (Resmed S8 AutoSet II) should do very nicely to alleviate that struggle to exhale and if you can drag things out w/an APAP for the term of the purchase of your APAP before giving up and having a bi-level titration for the mixed apnea you might end up w/the APAP as paid for and yours AND a bi-level ASV.

Altho I didn't plan it that way that was what I encountered. I have COPD. I was started on CPAP. It was a struggle but it helped. I bought an APAP out of pocket. I did bug my sleep lab and sleep doctor during the first year on CPAP and then just got discouraged and spent the next 6 months adjusting pressure settings myself. I did better than the sleep lab had. But - I still wasn't doing as good as I should nor as I wanted. So - I decided to give the sleep profession one more try. I ended up w/a bi-level titration and an insurance paid bi-level (plus my insurance paid CPAP and self-purchased APAP). I wanted a back up bi-level so I sold my CPAP and searched carefully for quite awhile at cpapauction.com until I found a lightly used bi-level auto and purchased it outta pocket. All in all insurance purchased a CPAP and a VPAP Auto (bi-level) for me and I self-purchased 2 APAPs and one bi-level auto.

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Permalink Reply by BeeAsleep on April 24, 2009 at 9:10am

Judy, I wish you could come to Colorado and be my xPAP advocate. (No, really :>D) When I read your post I feel so lucky to had found a place with real answers, but I feel soooo overwhelmed. I am sooo not technical, I can barely work the TV remote control.

Do I call my ResMed provider and tell them what I want or do I call my doctor and tell him what I want and have him write out a prescription for the provider? In my experience, doctors don't like being told what do do. (Understandably). I don't quite know how to approach getting the right machine. Do I take a list in to the doc and say, "This is what I want." ?

All I know is I feel like I am drowning when I use this machine. At night I eventually make myself calm down and force myself to breathe against the machine...but it is NOT a rest inducing experience. I want to make this work, I am committed to pushing through the problems. My level is set at an 11 and it does ramp up to that point.

Thanks so much.

bee

Judy said:

Forgive me, BeeASleep, but when I first saw the subject of this thread I had to giggle. A little story about why. I had been on xPAP for quite a while and was doing well altho we didn't have my Leaks under control as yet. One night I was STARTLED out of sleep by a loud, piercing whistle!!! I had no idea what it was and lay in bed waiting for another or some other sound worth getting out of bed and checking for. But nothing so I just snuggled back down and was dozing off when there was another whistle, not as loud or piercing but still as strong as when you are whistling for your dog. So I lay there aware again waiting for .... whatever. When all was quiet and nothing else occurred I snuggled back down again and dozed off, except that there were two more soft whistles. IT WAS ME! It was air escaping from the corner of my mouth!!! Now, I'd experienced the "lip flutters" a few times before - and since - but that was the ONLY night I whistled!!! And thus, why I snickered and giggled when I saw the subject of this thread.

1] Make sure you have secured your humidifier lid tightly. It should snap when you close it securely.
2] Check your hose for leaks
3] Roll or turn the barrel of your Swift LT a bit or swizzle the pillows a bit in your nostrils
4] You should NOT have to force air out on exhalation. You either need an xPAP w/EPR or your pressure lowered.
5] If you have mixed apnea you are a candidate for a special type of bi-level, an ASV
6] Most insurances will not pay for a bi-level until you have "failed" CPAP therapy.
7] Try real hard to get a fully data capable APAP instead of that Escape. An APAP would serve as a good backup device for a bi-level ASV.
8] A properly set APAP w/EPR (Resmed S8 AutoSet II) should do very nicely to alleviate that struggle to exhale and if you can drag things out w/an APAP for the term of the purchase of your APAP before giving up and having a bi-level titration for the mixed apnea you might end up w/the APAP as paid for and yours AND a bi-level ASV.

Altho I didn't plan it that way that was what I encountered. I have COPD. I was started on CPAP. It was a struggle but it helped. I bought an APAP out of pocket. I did bug my sleep lab and sleep doctor during the first year on CPAP and then just got discouraged and spent the next 6 months adjusting pressure settings myself. I did better than the sleep lab had. But - I still wasn't doing as good as I should nor as I wanted. So - I decided to give the sleep profession one more try. I ended up w/a bi-level titration and an insurance paid bi-level (plus my insurance paid CPAP and self-purchased APAP). I wanted a back up bi-level so I sold my CPAP and searched carefully for quite awhile at cpapauction.com until I found a lightly used bi-level auto and purchased it outta pocket. All in all insurance purchased a CPAP and a VPAP Auto (bi-level) for me and I self-purchased 2 APAPs and one bi-level auto.

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Permalink Reply by Judy on April 24, 2009 at 11:43am

Go to cpap.com. Go to CPAP Machines. Go to Auto Adjusting CPAPs. Notice that that page will allow you to make comparisons. Click on the box for those you want to compare. Print out the Comparison page.

Do the same for the AutoPAPs. Print out that Comparison page too. That the Comparison Page(s) to your sleep doctor - show him the APAP comparisons first. Soften him up first w/how much trouble you are having w/exhalation, etc. w/your current CPAP and not being able to determine if your Leak rate is too high. Ask him which of these APAPs he would prefer you have and ask if he would write a new script for that specific APAP. Remind him these APAPs are coded the same as a straight bare bone CPAP.

If you can't budge him, then fall back on plan 2. Well, if he isn't interested in helping determine any pressure change needs except "by guess and by gosh" or by more expensive, time consuming in-lab titration studies, would he at least script a fully data capable CPAP so the TWO OF YOU at least have SOME idea of what your problems w/therapy might be. Ask him which of the devices on this comparison printout he prefers and if he would write a specific script for that device.

If he goes w/the APAP, stick w/the APAP as long as you can. If he insists on your remaining on the CPAP you are one, keep bugging him and the local DME supplier w/every little problem you have w/it. The squeaky wheel gets the grease. Be sure to get copies of the full scored data summary report w/condensed graphs and well as his dictated results report. Use them as amunition to point out the mixed apneas, etc.

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Permalink Reply by BeeAsleep on April 24, 2009 at 11:47am

Judy, YOU ARE AWESOME!

Judy said:

Go to cpap.com. Go to CPAP Machines. Go to Auto Adjusting CPAPs. Notice that that page will allow you to make comparisons. Click on the box for those you want to compare. Print out the Comparison page.

Do the same for the AutoPAPs. Print out that Comparison page too. That the Comparison Page(s) to your sleep doctor - show him the APAP comparisons first. Soften him up first w/how much trouble you are having w/exhalation, etc. w/your current CPAP and not being able to determine if your Leak rate is too high. Ask him which of these APAPs he would prefer you have and ask if he would write a new script for that specific APAP. Remind him these APAPs are coded the same as a straight bare bone CPAP.

If you can't budge him, then fall back on plan 2. Well, if he isn't interested in helping determine any pressure change needs except "by guess and by gosh" or by more expensive, time consuming in-lab titration studies, would he at least script a fully data capable CPAP so the TWO OF YOU at least have SOME idea of what your problems w/therapy might be. Ask him which of the devices on this comparison printout he prefers and if he would write a specific script for that device.

If he goes w/the APAP, stick w/the APAP as long as you can. If he insists on your remaining on the CPAP you are one, keep bugging him and the local DME supplier w/every little problem you have w/it. The squeaky wheel gets the grease. Be sure to get copies of the full scored data summary report w/condensed graphs and well as his dictated results report. Use them as amunition to point out the mixed apneas, etc.

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Permalink Reply by Brian Katzung on October 27, 2009 at 11:35am

I know I'm a bit late to this thread, but there's another possible cause of whistling, which seems to be somewhat underrepresented on this board, and that's whistling from condensation. (I had it night before last.)

According to a search for "mask whistle" at http://tinyurl.com/scan-cpap-bbs, some (long-term, not necessarily same-night) options seem to be turning down the humidifier settings, getting a hose cover or a heated hose, and using toothpicks to make sure the exhalation holes are all clear.

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Permalink Reply by BeeAsleep on October 27, 2009 at 2:19pm

I think I do have my humidifier setting high, is is so dry in Colorado that I like the extra moisture. I whistle if my nasal pillows aren't sparkley clean as well. thanks. b

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Permalink Reply by Renee on October 27, 2009 at 6:27pm

Dear BeeAsleep,

Good Luck as your getting used to CPAP and you have found a good place here at SG. I have been getting a great deal of info, support and courage here myself.

Renee
_________________________________

And ~ Hello Judy,

Thanks again for the great info! I just hung up the phone after the doctor from the sleep center where I had my center done finished, literally "yelling" at me and telling me that I did not know what I was talking about. The DME had told me that I could have only the C-Series and when I told them I knew my insurance would cover whichever xPAP I choose, they complained to my doctor that I was insisting on receiving the S8 AutoSet II and she agreed with them to give me only the C-Series Tango. When I still refused to accept the C-Series, my doctor's office said the doctor would return my call whenever she had a chance as she is busy with studies, patients and other important matters. When I reminded them that I am a patient, they said that yes that is so but that still the doctor is busy and will get back to me whenever she gets a chance.

I had been polite through all the communications. When I told the DME that my insurance would pay for any device, they had simply said OK on the phone and changed the order - or I thought. When I hung up with them everything seemed fine and dandy with no upsetments. It was only afterward that I found out that there were backchannel communications between the DME and my doctor and that I was naive to the nasty storm brewing.

After talking with the doctor when she did call me and explaining reasonably and calmly about the S8 recording efficacy data: pressure, leak rate, apnea / hypopnea index for the doctor (I didn't tell her that I also wanted that info) and EPR (she said EPR is of NO consequence what-so-ever) and Ramp - which is only optional in the C-Series, she agreed to permit me to have the S8 AutoSet II. But then she started yelling at me about how I should be using CPAP - even though I don't yet have the equipment and she knows that I have just recently been in the hospital - so I couldn't possibly yet have started. When I mentioned that she knew I couldn't have started because of having gone into the hospital as an emergency, only then did she spit out: Oh, yes, I hope you be alright.

At the start of the yelling - which came out of nowhere - I had reflexively started to hang up the phone on her but decided to hold on for a minute - and in the end, I am glad I did because I have a consultation at another sleep study center this coming Monday and I am hoping to switch there for further evaluation and treatment. But I think it would be good to have the option of getting the equipment for the next 30 days through this doctor's RX and DME and get going with xPAP in case it will be a little while until I am set up under the guidance of the new sleep center's doctors.

So thank you so much, once again, for the info you provided here on comparison of equipment and your posting to my earlier inquiry regarding ResMed equipment and for all the on-going support you offer to members of SG.

Best,
Renee

Judy said:

Go to cpap.com. Go to CPAP Machines. Go to Auto Adjusting CPAPs. Notice that that page will allow you to make comparisons. Click on the box for those you want to compare. Print out the Comparison page.

Do the same for the AutoPAPs. Print out that Comparison page too. That the Comparison Page(s) to your sleep doctor - show him the APAP comparisons first. Soften him up first w/how much trouble you are having w/exhalation, etc. w/your current CPAP and not being able to determine if your Leak rate is too high. Ask him which of these APAPs he would prefer you have and ask if he would write a new script for that specific APAP. Remind him these APAPs are coded the same as a straight bare bone CPAP.

If you can't budge him, then fall back on plan 2. Well, if he isn't interested in helping determine any pressure change needs except "by guess and by gosh" or by more expensive, time consuming in-lab titration studies, would he at least script a fully data capable CPAP so the TWO OF YOU at least have SOME idea of what your problems w/therapy might be. Ask him which of the devices on this comparison printout he prefers and if he would write a specific script for that device.

If he goes w/the APAP, stick w/the APAP as long as you can. If he insists on your remaining on the CPAP you are one, keep bugging him and the local DME supplier w/every little problem you have w/it. The squeaky wheel gets the grease. Be sure to get copies of the full scored data summary report w/condensed graphs and well as his dictated results report. Use them as amunition to point out the mixed apneas, etc.

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Permalink Reply by Jan on October 27, 2009 at 9:44pm

Hi-- I am using the same mask. Someone suggested the following when putting the mask on, and I know that it gives me a better fit/seal when I do. I put the gear on, turn the machine on, put the nasal pillows in place and then, with the air blowing just lift the pillows a teeny bit out of your nose and allow the pillows to inflate as you allow then to slip back into your nostrils. I feel like I did a terrible job of describing that...if it isn't clear, maybe someone else can step in.

Also, in response to the difficulty of sleeping with the air pressure...in addition to some of the other very good suggestions, you might want to trying the CPAP/mask just lying in bed reading or watching tv without the pressure of having to fall asleep. I did that a few times before attempting to sleep with it. It is pretty alien and it takes time to get used to it. Am still in the phase, also.

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Permalink Reply by RockRpsgt on October 28, 2009 at 5:53am

Renee get a new doctor, DME, and complain to your insurance company about the way that you were treated. No service representitive should ever yell at a customer/ client.

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Permalink Reply by wallace j smith jr on October 28, 2009 at 9:44am

i agree with rock!!!!! find a new doc he doesnt care about you or he wouldt yell at you!!!

Rock Hinkle said:

Renee get a new doctor, DME, and complain to your insurance company about the way that you were treated. No service representitive should ever yell at a customer/ client.

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