Replies to This Discussion

Permalink Reply by Steven B. Ronsen on November 26, 2009 at 10:19pm

I didn't intend to belittle anyone's efforts. Perhaps I made an exceptionally easy adjustment to CPAP. I've never been a mouth-breather. Leaks have always been totally disruptive of my sleeping, and I don't need a machine to tell me when I'm leaking. Perhaps that's a benefit of a nasal-pillow mask - there's nothing subtle about their leakage. (Not meaning to rub it in, my leak rate is consistently zero.)

My point is that one should not obsess about numbers, particularly when starting. Focus on finding the most comfortable mask for you. That's not necessarily the most popular or highest rated one. I find the most popular nasal-pillow mask painfully uncomfortable and leaky. Don't worry about using a nasal mask with a stuffed nose. That can be dealt with separately. I'm amazed at the number of people who think that a full-face or hybrid mask is necessary to accommodate such possibilities, only to saddle themselves with inherently uncomfortable and leaky masks.

DME's mark-up equipment with VERY high margins. Don't hesitate to get your money's worth by trying as many masks as necessary to find comfort. One or two nights is all it takes to determine if you've made the right choice. If you can't forget you're wearing it within an hour or so, it's not the right selection and you will never be relaxed and comfortable enough to adapt successfully to CPAP treatment. Once you get a comfortable mask, everything else will follow, including low numbers. On the other hand, if the mask isn't right, you'll be plagued with leaks and sleep interruptions.

I may have forgotten the details of my adjustment and it may have been a bit more difficult than I remember, but be encouraged that at some point you will adapt and the whole CPAP thing will become a minor inconvenience in your life. You will feel uncomfortable even napping without your mask and machine.

Best of luck.

Jan said:

While I agree with you that how you feel is most important, I do also feel that some will benefit from a more careful scrutiny of the numbers. You are lucky. You felt better after three days of treatment. I didn't have the overnight "trip to Lourdes" that some others have. Elsewhere on the board, I asked how long it took to feel better. I didn't "calculate" the responses, but my general sense was that about 25% ish of the responders felt better right away...for the rest the range was anywhere from a few weeks to a year.

I'm one of the many people who is starting to feel better very gradually sometimes taking minute baby steps. I have good days and not so great days (an improvement over bad days and worse days). As a result, I feel that it is important for me to review the numbers and make sure that my 100% compliance to the therapy is resulting in AHI's and leaks and whatever else it allows me to review that will put me in the best position of continuing my slow but positive trend in how I feel.

I'm not doing this in a vacuum though. Just yesterday I had a phone consultation with my sleep doctor (and an in person meeting with him last week where we reviewed status together) to discuss next steps. (No one's ever called me low maintenance ;-) Both of us think that in addition to the apnea situation which appears to be getting into control through the therapy, that I have other sleep issues. As a result, I will be setting up a meeting with a behavioral therapist to discuss sleep hygiene and whatever else comes along with that. By eliminating a high AHI, and all the other goodies you can see through the reports, and combining that with a discussion of sleep habits and problems, a picture was painted that leads us to explore behavioral issues that goes beyond CPAP therapy. Without the numbers, trying a dozen different masks probably would make no difference since there seems to be multiple issues here with my sleep-- and I am loving my mask, it's in the right range of leaks etc :-)

In the big picture of "how do I get to feeling good" I feel that I have a toolbox. The numbers are an important part of my arsenal of tools...but just one tool. My sleep doctor, this forum, friendships I have made with people who are knowledgeable about sleep disorders, my primary care physician...etc. are all part of that tool box that I need to manage this condition.

I really wish I was one of those people, as you have been, who felt like a changed person overnight. There are times when I would get angry and sad that it wasn't working for me in the miraculous way is has for some others. In the first week or two, I woke up every morning "willing" myself to feel great and becoming disappointed when I didn't. I'm now resolved that this is going to take much more work and management from me...and I am going to need all of the tools available...especially the numbers...to help me get through to the other side on this.

Steven B. Ronsen said:

The numbers are unimportant - it's all about how you feel.

I recently replaced my almost ten year old dumb CPAP machine with a fully data-compatible machine.During that long period, I had no objective feedback, but I felt rested after my third night on CPAP, when I got the right mask. (It's all about the mask!)

Well, the new machine simply confirms this. After a month of recording numbers, my average HI is 1.2, and more importantly, my average HI is less than 0.1, (that's an AHI of 1.3) and I still feel rested.

Back to the original question, my numbers are pretty consistent. AI varies for 0 to 0.1 with on 0.2 on one night. HI varies from 1.0 to 2.1. I suspect that the HI numbers are affected by mask removal resulting from my chronically runny nose or conscious shallow breathing when trying to fall asleep.

Nevertheless, I just ordered a card reader to look at my data in more detail. Why? When my primary care physician thinks it's time for another expensive sleep study, I want to show him that's it's not necessary. I doubt any additional analysis will improve my treatment - my numbers are pretty close to optimal.

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Permalink Reply by Jan on November 26, 2009 at 11:25pm

And sorry if I seemed defensive. I am wondering which nasal pillow mask you are using. I'm using the Swift nasal pillows for her. I find it wonderfully comfortable though at higher pressures (im on an auto bipap) I think leaks sometimes wake me up. Outside of that occasional annoyance, my "leak rate" is in the 30's -- about where the manual suggests is appropriate at the pressures I average. I do love the mask, but am happy to try other nasal pillows.

Thanks
Jan

Steven B. Ronsen said:

I didn't intend to belittle anyone's efforts. Perhaps I made an exceptionally easy adjustment to CPAP. I've never been a mouth-breather. Leaks have always been totally disruptive of my sleeping, and I don't need a machine to tell me when I'm leaking. Perhaps that's a benefit of a nasal-pillow mask - there's nothing subtle about their leakage. (Not meaning to rub it in, my leak rate is consistently zero.)
My point is that one should not obsess about numbers, particularly when starting. Focus on finding the most comfortable mask for you. That's not necessarily the most popular or highest rated one. I find the most popular nasal-pillow mask painfully uncomfortable and leaky. Don't worry about using a nasal mask with a stuffed nose. That can be dealt with separately. I'm amazed at the number of people who think that a full-face or hybrid mask is necessary to accommodate such possibilities, only to saddle themselves with inherently uncomfortable and leaky masks.
DME's mark-up equipment with VERY high margins. Don't hesitate to get your money's worth by trying as many masks as necessary to find comfort. One or two nights is all it takes to determine if you've made the right choice. If you can't forget you're wearing it within an hour or so, it's not the right selection and you will never be relaxed and comfortable enough to adapt successfully to CPAP treatment. Once you get a comfortable mask, everything else will follow, including low numbers. On the other hand, if the mask isn't right, you'll be plagued with leaks and sleep interruptions.

I may have forgotten the details of my adjustment and it may have been a bit more difficult than I remember, but be encouraged that at some point you will adapt and the whole CPAP thing will become a minor inconvenience in your life. You will feel uncomfortable even napping without your mask and machine.

Best of luck.

Jan said:

While I agree with you that how you feel is most important, I do also feel that some will benefit from a more careful scrutiny of the numbers. You are lucky. You felt better after three days of treatment. I didn't have the overnight "trip to Lourdes" that some others have. Elsewhere on the board, I asked how long it took to feel better. I didn't "calculate" the responses, but my general sense was that about 25% ish of the responders felt better right away...for the rest the range was anywhere from a few weeks to a year.

I'm one of the many people who is starting to feel better very gradually sometimes taking minute baby steps. I have good days and not so great days (an improvement over bad days and worse days). As a result, I feel that it is important for me to review the numbers and make sure that my 100% compliance to the therapy is resulting in AHI's and leaks and whatever else it allows me to review that will put me in the best position of continuing my slow but positive trend in how I feel. I'm not doing this in a vacuum though. Just yesterday I had a phone consultation with my sleep doctor (and an in person meeting with him last week where we reviewed status together) to discuss next steps. (No one's ever called me low maintenance ;-) Both of us think that in addition to the apnea situation which appears to be getting into control through the therapy, that I have other sleep issues. As a result, I will be setting up a meeting with a behavioral therapist to discuss sleep hygiene and whatever else comes along with that. By eliminating a high AHI, and all the other goodies you can see through the reports, and combining that with a discussion of sleep habits and problems, a picture was painted that leads us to explore behavioral issues that goes beyond CPAP therapy. Without the numbers, trying a dozen different masks probably would make no difference since there seems to be multiple issues here with my sleep-- and I am loving my mask, it's in the right range of leaks etc :-)

In the big picture of "how do I get to feeling good" I feel that I have a toolbox. The numbers are an important part of my arsenal of tools...but just one tool. My sleep doctor, this forum, friendships I have made with people who are knowledgeable about sleep disorders, my primary care physician...etc. are all part of that tool box that I need to manage this condition.

I really wish I was one of those people, as you have been, who felt like a changed person overnight. There are times when I would get angry and sad that it wasn't working for me in the miraculous way is has for some others. In the first week or two, I woke up every morning "willing" myself to feel great and becoming disappointed when I didn't. I'm now resolved that this is going to take much more work and management from me...and I am going to need all of the tools available...especially the numbers...to help me get through to the other side on this.

Steven B. Ronsen said:

The numbers are unimportant - it's all about how you feel.

I recently replaced my almost ten year old dumb CPAP machine with a fully data-compatible machine.During that long period, I had no objective feedback, but I felt rested after my third night on CPAP, when I got the right mask. (It's all about the mask!)
Well, the new machine simply confirms this. After a month of recording numbers, my average HI is 1.2, and more importantly, my average HI is less than 0.1, (that's an AHI of 1.3) and I still feel rested.
Back to the original question, my numbers are pretty consistent. AI varies for 0 to 0.1 with on 0.2 on one night. HI varies from 1.0 to 2.1. I suspect that the HI numbers are affected by mask removal resulting from my chronically runny nose or conscious shallow breathing when trying to fall asleep.

Nevertheless, I just ordered a card reader to look at my data in more detail. Why? When my primary care physician thinks it's time for another expensive sleep study, I want to show him that's it's not necessary. I doubt any additional analysis will improve my treatment - my numbers are pretty close to optimal.

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Permalink Reply by Donald R. Byrd on November 27, 2009 at 9:49am

I have been on cpap for 3 yrs. using an auto cpap machine - pressure setting 11-20 cmh20, 90%pressure avg. =15 I use a nasal mask. My AHI does change slightly from 1.3-2.3 ahi per night.

AHI will increase if you need a chin strap but dont use one "large leak" or if mask does not seal right causing a "large leak" leaks are not cpap users friend.

If your cpap machine is set at a single pressure such as 10cm it may not prevent some apneas from occurring however the auto titrating cpap machine can respond by changing between pressures i.e., 10-20 cmh20 as needed to consistantly control apnea from occurring.

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Permalink Reply by Steven B. Ronsen on November 27, 2009 at 10:12am

I'm using a Breeze Sleepgear with a few minor modifications I incorporated over the years: a tube to divert the exhaust upward and away from my spouse and pillow; a cable tie to hold the strap guide in place and lock one of the adjustments; several methods of locking the rear cradle adjustment. I also have successfully used an Everest Headrest which, unfortunately, is really sensitive to rain-out. However, I may give it another try now that I've added a hose heater to my toolkit. I have a Swift LT, which I have really, really tried to use, but I just can't get it comfortable and leak free. The Breeze seems to be a love-it or hate-it thing. People complain about the multiple adjustments (hence some of my modifications), and it is really not conducive to back sleeping, which is the worst position for apnea anyway, so that doesn't bother me. The Headrest's layout is very similar to the Breeze, in that nothing touches the face other than the nasal pillows. As a result these masks are great for side sleepers. They also seem to be better able to accommodate higher pressure than the Swift, as increased air pressure just pushes the pillows tighter to the nose. (My pressure is 9 - 13.) The downside of the Headrest, in addition to rain-out, is that it seems to be made for big heads. However, there are a number of vocal female devotees on cpaptalk.com who have made modifications to accommodate their smaller skulls. My leak rate with the Headrest is also perfect. Oh, lest I forget, comfort and leakage also seems to be dependent on hose routing and support. I have some clips behind my headboard which keep the hose properly positioned to eliminate any pulling on the mask.

I hope this helps. It does remind me that it did take some time to get from a point where I could benefit from the therapy to being oblivious to it. See if the other masks work better for you. Once you find the right mask . . .

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Permalink Reply by Joe Brown on November 27, 2009 at 8:28pm

Hi Jan! My machine is the REMstarPro M series with a set pressure of 8. My present reading average AHI for a seven day period is 4.6 with an average usage of 7:06. The thirty day average is also 4.6 with an average usage of 7.24. I have been a hosenose for about six years and the ResMed Mirage Swift ll w/nasal pillows was the greatest improvement ever. There were times with the nasal and full masks when the leaks became so annoying that I threw them across the bedroom. Praise the Lord for those that continue to research for improved methods. I hook-up everytime I go to bed, without fail!

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Permalink Reply by Andy on November 27, 2009 at 8:54pm

Hi Carolyn,

I found the "secret combination" to the kepresses to get into the review data menus by research on the Internet. I forget where it was that I found it. I then just played around with all of the menus, to see what they'd do, then wrote up the instructions I posted just for you!

I'm a techie-type, and I work on "unfamiliar" equipment all the time, so I'm not afraid to jump in and see what all of the buttons and commands do. I also have a very useful skill-- I know when to stop!

One of the most interesting things for me, whenever I get any new electronic or mechanical device, is to poke around with it, and see what it does, and how it does it. I have had a very difficult time with the ResMed, because the first thing I want to do is take it apart to see inside!

The second thing I want to do is see how I can access all of the data, especially the data that "they" don't want me to see!

the card you're referring to is probably the data card. You'll insert it into the back of the ResMed, which will copy all of your data onto the card. Then you'll typically take the card to the doctor's appointment, or mail it to either the doctor or DME company to be read.

My AutoSet has a ResTraxx, which is a cell-phone-like device attached to the back. It transmits the data directly to the DME or doctor, so I don't have to use any cards. The downside is that I don't have an easy way to extract the data from my AutoSet...

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