Lessons Learned - 6 Months on CPAP
(Note: I copied this post from the Success Stories thread attempting to reach a greater audience and hoping readers might find something interesting and/or helpful!)
This is my 100th post to the ApneaBoard forum. I wanted my century mark post to be something fairly significant and since I'll be coming up on my 6-month anniversary of CPAP therapy on 3/30/12, I thought I'd post some of my experiences and lessons learned thus far. My apologies in advance, this post may be rather long, but if you read through it, you might find something beneficial that can shorten your learning curve.
I. Sleep Study - I went to a sleep center on two separate visits. The first study was to confirm whether I had sleep apnea or not and indeed I did. My AHI was 16.3/hour during any stage of sleep and 43.1/hour in REM sleep with an oxygen content level as low as 72%. These results I was told put me in the moderate level of sleep apnea and a 2nd titration study was performed to determine which mask type and optimal pressure settings I should use in beginning CPAP therapy.
Lessons Learned: It is not easy to fall asleep in a strange environment with wires hooked up to you and knowing that someone is watching you sleep. I had my doctor prescribe some sleeping pills before I went and was glad I did as I don't think I would have been able to sleep much without them and the study wouldn't have been as effective.
II. DME - There are good ones and bad ones. Good ones are seriously interested in helping you find the right equipment for effective therapy. Bad ones are most concerned with profit margins. I felt mine was middle of the road.
Lessons Learned: Do some research on the internet before visiting with a DME to determine which type and brands of equipment you think might be best for your treatment. Ask questions and insist on equipment that you feel is best for your situation. Find out about insurance coverage and determine to what extent free mask exchanges are allowed and what the replacement schedule is for CPAP supplies.
III. CPAP Machine - My doctor prescribed a CPAP machine with a 10.0 pressure setting. After performing my own internet research, I determined the ResMed S9 had the performance and features that I desired. It had the lowest noise level in decibles and a high level of customer approval in reviews I read. My DME set me up initially with a Respironics PR System One. I inquired about the ResMed S9 and was able to obtain an S9 Autoset.
Lessons Learned: The DME may try to steer you toward a machine that has a limited amount of features where they can secure the highest amount of profit from what insurance companies will pay them. Although you may never use it, try to get an Auto CPAP machine where you have the option to choose either a range of pressure settings or a single setting instead of a straight CPAP machine that can only be set at a single pressure setting. Also, insist on a machine that is data capable which will help you greatly in your CPAP therapy. I was able to obtain a ResMed S9 Autoset with an H5i humidifier and Climateline hose which I've been very happy with. The humidifier adds moisture so your mouth or nasal passages don't dry out and the Climateline hose is a heated hose that eliminates "rain out" where condensation can build up in your hose. I position my machine on a small step stool next to my bed below mattress level where it is virtually silent and use a hose lift system that helps me keep from getting tangled up in the hose while I sleep.
IV) Mask – This is probably the most critical piece of equipment in obtaining successful results from CPAP therapy. You wear it on your face to deliver PAP air to your system to keep your air passage open. There are all kinds of different masks available with the most popular classifications being nasal, nasal pillow, full face, hybrid, oral and total face.
Lessons Learned: For the most effective therapy, you need to find a mask that is comfortable and delivers air with a minimal amount of leaks. Masks are highly personal as far as fit as no two people have the exact same face structure characteristics. What may work great for one person may not work at all for you. If you obtain a mask from your DME, find out what their rules are on free mask exchanges or look into low cost mask trial programs such as the one provided by the CPAP Library (see ApneaBoard Supplier list for website link). I went through 4 different masks before settling on the ResMed Quattro FX as my mask of choice. I initially tried the Swift FX but mouth breathing and leaks were a problem for me with that mask. Next I tried the Mirage Liberty hybrid mask. I liked the concept, but I had a difficult time obtaining and maintaining a consistent seal with the nasal pillow portion of the mask. The Mirage Quattro gave me a good seal against leaks, but caused pressure sores on the bridge of my nose. The Quattro FX for me is the mask that provided the best combination of comfort and seal. I use mine with a Padacheek mask liner which provides even greater comfort by eliminating potential skin irritation from having the mask cushion come in direct contact with your face. I believe it should also prolong the life of the face cushion. Again, I must emphasize that mask fit is a totally personal thing that will vary from person to person. Try before buying whenever possible!
V. Software – Data reporting and compliance software is extremely useful in understanding progress and effectiveness of your CPAP therapy. I have a ResMed S9 Autoset machine which has full data reporting capability. Basic lower priced machines won’t have data capabilities but I believe all of the major manufacturers have models with full data capability. ResMed machines with data capabilities use ResScan software. I also use an open source software called Sleepyhead which is available for select machines and is currently in beta test status. I’ve found bugs with both software, but both systems provide invaluable information in understanding CPAP therapy effectiveness.
Lessons Learned: When purchasing your machine, be sure to insist on a machine with full data capability. Without the data software, you will have extremely limited information available to you as far as your AHI scores, leak rates and a number of other important factors. The software provides excellent graphs and reports that can help you spot trends and help you determine the best machine pressure settings, mask, EPR settings, ramp, etc.
VI. The Most Important Thing? – I spent a good three to four months playing with different machine settings and masks. If you’re one of the lucky ones, everything will be great and you’ll experience immediate benefits from CPAP therapy from the very first day. However, many others, myself included will experience incremental benefits from therapy over a longer period of time. My AHI scores have always been excellent from the start with average AHI consistently below 1.0. That has led me to focus on leak rates and obtaining 0.0 l/min leak rate scores. I figure with low AHI and no leaks, how can I do any better?
Lessons Learned: Don’t become overly obsessed with leak rate scores. With ResMed machines, unintended leak rates of 24.0 l/min or less can be compensated for by the machine and still provide maximum effectiveness. I’ve found some mask combinations where I’ve had 0.0 leak rates throughout most of the night, but for some reason, I don’t seem to be able to sleep through the night in those situations. With my mask of choice the ResMed Quattro FX, when I use a Padacheek liner, my maximum leak rates per night are usually between 2.4 and 6.0. Although the leak rates are slightly higher, they are still well below the 24.0 l/min goal for effective therapy and more importantly, I tend to sleep through the night without waking up, dream more frequently and wake up in the morning more refreshed. To me, that's the most important thing.
VII. Forum Participation – There are several very good forums available on the internet where sleep apnea sufferers can read about and learn just about anything you could possibly want to know about successfully treating sleep apnea.
Lessons Learned: Forum participants by and large are wonderful people who are willing to share their experiences and knowledge in order to assist their fellow sleep apnea sufferers in obtaining maximum benefits of CPAP therapy. In 6 months of therapy, I’ve learned so much from this and other forums and I continue to learn things every day. I do my best to share my positive and negative experiences to try and help other newbies benefit from CPAP therapy in the shortest amount of time possible. Hopefully, maybe something in this post has been of value to the reader. Participate!!!
This is my 100th post to the ApneaBoard forum. I wanted my century mark post to be something fairly significant and since I'll be coming up on my 6-month anniversary of CPAP therapy on 3/30/12, I thought I'd post some of my experiences and lessons learned thus far. My apologies in advance, this post may be rather long, but if you read through it, you might find something beneficial that can shorten your learning curve.
I. Sleep Study - I went to a sleep center on two separate visits. The first study was to confirm whether I had sleep apnea or not and indeed I did. My AHI was 16.3/hour during any stage of sleep and 43.1/hour in REM sleep with an oxygen content level as low as 72%. These results I was told put me in the moderate level of sleep apnea and a 2nd titration study was performed to determine which mask type and optimal pressure settings I should use in beginning CPAP therapy.
Lessons Learned: It is not easy to fall asleep in a strange environment with wires hooked up to you and knowing that someone is watching you sleep. I had my doctor prescribe some sleeping pills before I went and was glad I did as I don't think I would have been able to sleep much without them and the study wouldn't have been as effective.
II. DME - There are good ones and bad ones. Good ones are seriously interested in helping you find the right equipment for effective therapy. Bad ones are most concerned with profit margins. I felt mine was middle of the road.
Lessons Learned: Do some research on the internet before visiting with a DME to determine which type and brands of equipment you think might be best for your treatment. Ask questions and insist on equipment that you feel is best for your situation. Find out about insurance coverage and determine to what extent free mask exchanges are allowed and what the replacement schedule is for CPAP supplies.
III. CPAP Machine - My doctor prescribed a CPAP machine with a 10.0 pressure setting. After performing my own internet research, I determined the ResMed S9 had the performance and features that I desired. It had the lowest noise level in decibles and a high level of customer approval in reviews I read. My DME set me up initially with a Respironics PR System One. I inquired about the ResMed S9 and was able to obtain an S9 Autoset.
Lessons Learned: The DME may try to steer you toward a machine that has a limited amount of features where they can secure the highest amount of profit from what insurance companies will pay them. Although you may never use it, try to get an Auto CPAP machine where you have the option to choose either a range of pressure settings or a single setting instead of a straight CPAP machine that can only be set at a single pressure setting. Also, insist on a machine that is data capable which will help you greatly in your CPAP therapy. I was able to obtain a ResMed S9 Autoset with an H5i humidifier and Climateline hose which I've been very happy with. The humidifier adds moisture so your mouth or nasal passages don't dry out and the Climateline hose is a heated hose that eliminates "rain out" where condensation can build up in your hose. I position my machine on a small step stool next to my bed below mattress level where it is virtually silent and use a hose lift system that helps me keep from getting tangled up in the hose while I sleep.
IV) Mask – This is probably the most critical piece of equipment in obtaining successful results from CPAP therapy. You wear it on your face to deliver PAP air to your system to keep your air passage open. There are all kinds of different masks available with the most popular classifications being nasal, nasal pillow, full face, hybrid, oral and total face.
Lessons Learned: For the most effective therapy, you need to find a mask that is comfortable and delivers air with a minimal amount of leaks. Masks are highly personal as far as fit as no two people have the exact same face structure characteristics. What may work great for one person may not work at all for you. If you obtain a mask from your DME, find out what their rules are on free mask exchanges or look into low cost mask trial programs such as the one provided by the CPAP Library (see ApneaBoard Supplier list for website link). I went through 4 different masks before settling on the ResMed Quattro FX as my mask of choice. I initially tried the Swift FX but mouth breathing and leaks were a problem for me with that mask. Next I tried the Mirage Liberty hybrid mask. I liked the concept, but I had a difficult time obtaining and maintaining a consistent seal with the nasal pillow portion of the mask. The Mirage Quattro gave me a good seal against leaks, but caused pressure sores on the bridge of my nose. The Quattro FX for me is the mask that provided the best combination of comfort and seal. I use mine with a Padacheek mask liner which provides even greater comfort by eliminating potential skin irritation from having the mask cushion come in direct contact with your face. I believe it should also prolong the life of the face cushion. Again, I must emphasize that mask fit is a totally personal thing that will vary from person to person. Try before buying whenever possible!
V. Software – Data reporting and compliance software is extremely useful in understanding progress and effectiveness of your CPAP therapy. I have a ResMed S9 Autoset machine which has full data reporting capability. Basic lower priced machines won’t have data capabilities but I believe all of the major manufacturers have models with full data capability. ResMed machines with data capabilities use ResScan software. I also use an open source software called Sleepyhead which is available for select machines and is currently in beta test status. I’ve found bugs with both software, but both systems provide invaluable information in understanding CPAP therapy effectiveness.
Lessons Learned: When purchasing your machine, be sure to insist on a machine with full data capability. Without the data software, you will have extremely limited information available to you as far as your AHI scores, leak rates and a number of other important factors. The software provides excellent graphs and reports that can help you spot trends and help you determine the best machine pressure settings, mask, EPR settings, ramp, etc.
VI. The Most Important Thing? – I spent a good three to four months playing with different machine settings and masks. If you’re one of the lucky ones, everything will be great and you’ll experience immediate benefits from CPAP therapy from the very first day. However, many others, myself included will experience incremental benefits from therapy over a longer period of time. My AHI scores have always been excellent from the start with average AHI consistently below 1.0. That has led me to focus on leak rates and obtaining 0.0 l/min leak rate scores. I figure with low AHI and no leaks, how can I do any better?
Lessons Learned: Don’t become overly obsessed with leak rate scores. With ResMed machines, unintended leak rates of 24.0 l/min or less can be compensated for by the machine and still provide maximum effectiveness. I’ve found some mask combinations where I’ve had 0.0 leak rates throughout most of the night, but for some reason, I don’t seem to be able to sleep through the night in those situations. With my mask of choice the ResMed Quattro FX, when I use a Padacheek liner, my maximum leak rates per night are usually between 2.4 and 6.0. Although the leak rates are slightly higher, they are still well below the 24.0 l/min goal for effective therapy and more importantly, I tend to sleep through the night without waking up, dream more frequently and wake up in the morning more refreshed. To me, that's the most important thing.
VII. Forum Participation – There are several very good forums available on the internet where sleep apnea sufferers can read about and learn just about anything you could possibly want to know about successfully treating sleep apnea.
Lessons Learned: Forum participants by and large are wonderful people who are willing to share their experiences and knowledge in order to assist their fellow sleep apnea sufferers in obtaining maximum benefits of CPAP therapy. In 6 months of therapy, I’ve learned so much from this and other forums and I continue to learn things every day. I do my best to share my positive and negative experiences to try and help other newbies benefit from CPAP therapy in the shortest amount of time possible. Hopefully, maybe something in this post has been of value to the reader. Participate!!!
We're all family here...you can call me B36 if you'd like!
