Hope, finally!

I confess I've been a lurker on this forum for more than a few years now. I'd have to look back at my paperwork to confirm when my first diagnosis was, but I think 2010. I went for the study because when trying to fall asleep on my back I would wake up feeling short of breath, usually right after having some dream about drowning. Most of the data from that first sleep study was based on me lying on my back, which showed an AHI of 27. During my first titration they recommended a full face mask because I am a mouth breather. I remembered, though, the discomfort I had felt with the full face mask on during the titration. Air leaking into my eyes, and every time my mouth fell open the force of the air blowing out my cheeks would wake me up. So I said no thank you and I ordered nasal pillows and a chin strap. I got a CPAP machine with humidifier from a local DME (I had no idea what a DME was at the time and how this all worked). My pressure was set at 8. I tried. I really tried. And I failed miserably. I was either ripping the mask off after two hours, half the time I didn't even remember doing it, or I was getting sinus infections. I kept myself awake with coffee and tea.

Somewhere in the middle I did try an oral appliance. My apnea is definitely structural, I have an overbite (recessed lower jaw), deviated septum, etc. etc. I believe the oral appliance was effective, but it hurt my jaw. I should mention I am female, 5'0", and 130 lbs. Somewhat overweight, but nothing serious. Then I went for a re-titration, and they came up with a pressure of 7.5, which is really no significant difference from 8. However, I did learn a bit about DME complications at that point. At the center for the sleep study they were saying, "Well, we can't change the pressure setting on your machine because you didn't buy it here." And I'm thinking, "Hey, I am actually trying to do this, so many people quit, and now you are making my efforts so much more complicated." I never did get the pressure setting changed. I was trying again to use the machine, but I did quit again in fairly short order.

Dialing forward to December 2014, I've been diagnosed with GERD (reflux), and I had an endoscopy. The doctor found two very small ulcers, and the doctor said no caffeine! And was speechless and crushed and miserable and more tired than ever in my life! And that forced me to look back at my CPAP machine. (I'm not really a quitter.) I knew enough now from lurking here and reading other websites and talking to people that there are one stop shops where you can get your diagnosis and your equipment all at the same place. I also knew now that there are sleep doctors and sleep therapists that work specifically with apnea. Before I had just been seeing my PCP, what a mistake!

So I made an appointment to see a sleep doctor at one of these one stop shops. We scheduled another sleep study. I wanted to see what my sleep apnea was like when I slept on my side. I was hoping I would come out with an AHI under 5, and could just rely on positional therapy. I knew well enough form my own personal experience that my apnea was not as bad on my side, because I could sleep on my side, whereas I cannot sleep on my back at all.

During my follow-up appointment I found out that my AHI was just under 5 when I slept on my one side and was 11 on my other side. Diagnosis: mild sleep apnea Recommended treatment: CPAP. So the doctor and I spoke about my prior experience, and I told her I think my pressures needs might change during my menstrual cycles. She agreed to try me on an Auto CPAP machine. I took home a new full face mask too. She also said that I was ripping my mask off in the middle of the night because of dryness (I thought she was crazy on this note). So she recommended a heated hose. I left with the whole set-up, and pressure ranges from 4 to 10.

Got home, read my instructions, distilled water, and hooked up the machine. I used the preheat option on the humidifier. That heated hose made a tremendous difference. I was much more comfortable. The full face mask was comfortable, but when I mouth breathe I get too dry, even with the humidifier at the highest setting. It was one of my dreams to be able to sleep on my back as that was always my preferred position prior to getting apnea. Sleep on my back though absolutely requires a full face mask. I could not stand the mouth dryness so I gave up on the dream of sleeping on my back, took to my side, and went back to my old nasal pillows.

Leaving out a few details for the sake of not making a long story too long, I am feeling really hopeful now that I am on a positive road with my CPAP therapy. I had a follow-up appointment with my doctor this morning. My compliance is better, but not yet where it needs to be. However, it is consistently improving. My AHI needs to come down further, but I only got the A-flex turned on a few days ago (there were some technical difficulties with the modem). I think the addition of the A-flex is going to improve my numbers. Mostly I am super happy today that my CPAP therapy has become comfortable, mostly due to the higher humidity, and that my compliance has gone up. Also the A-flex is a must for me. My prior machine had C-Flex so I knew the difference immediately when the A-Flex was not turned on.

So far I feel a less tired, but still tired. I think it can only go up from here.

My recommendations to people that are new or struggling: 1. Get a sleep doc and a sleep therapist. 1. Try to find a one stop shop that does testing and provides equipment 3. I highly recommend A-flex or C-flex and a heated hose (maybe even with a hose cozy) for comfort. 4. And I almost forgot, the sleepyhead software that they always talk about on this forum is AMAZING!

Last but not least, thank you to all of you that post to this forum. You help so many!

Warm regards,
mlg123

Welcome! Many fight the diagnosis and/or treatment, but cpap is still the best option available for those of us with apnea. There is tremendous advice and support available here - we get to benefit from the experiences of many others.

Please add your equipment to your profile - it saves a lot of questions being asked. There are some great posts stickied at the top of the forum about how to get and install the free sleepyhead software and interpret your recorded data. Also, realize that you can make your own adjustments to the machine as necessary - the information on how to do so is available. The recent auto machines are very good at auto-adjusting so often we just let them do so and then download the data to see what it's doing and how that affects our therapy.

Thank you. It's nice to not just be lurking in the shadows, and maybe I can help some others as just reading different posts has been so helpful to me.

I added the info on my equipment, I just could not find where to do that earlier, but I found it now.

Unfortunately I cannot make adjustments to my own machine. At least, not according to my sleep therapist or my sleep doc. They refer to my pressure settings as a prescription. I am fine with that though as they are really attentive to my needs if I call them, and they can make adjustments remotely via the modem.

I'm just really happy to feel like I am finally on the right track, and I'm glad I never became completely closed minded to CPAP. I think I have other people's success stories to thank for that.

Oh, but you can, if you really want to - the information is out there. Let's wait for Pugsy to check in on the matter.

I wonder how much information the doctor gets to see via the modem - if it's just summary and compliance or if he actually gets the detailed reports? If you look at the posts at the top of the forum, you can find out how to install the software and look at the data yourself. For example, you can look at the post I made just the other day: viewtopic/t103999/viewtopic.php?f=1&t=1 ... 77#p979677 I find it very reassuring to see just what the machine is doing throughout the night to treat my apnea and to be able to see just how well it's working. It's unfortunate that sometimes the biggest worry from the doctor's office is if you are meeting the compliance requirements so that the insurance will continue to pay - NOT how effective the treatment is or how it might be adjusted to be even better.

We have the same machines. Have you tried the different a-flex settings yet? There are three, I believe, and I find a-flex 3 to be the most comfortable for exhalation. Did you get the user manual with your machine? They are also available for downloading, if needed.

Actually if someone isn't comfortable fiddling with the settings on their machines for some reason I don't think they should go messing with things just because they can figure out how.
If someone is under a doctors care and they are happy with that care and they are happy with the way their therapy is going and they don't want to fiddle with the settings then I wouldn't want anyone to do something that makes them uncomfortable especially if there is no need to fiddle with it in the first place.

Just because we can doesn't always mean we should.
Furthermore, I prefer to educate so the person understands what they are seeing on their reports and then understands what a change might accomplish instead of just saying "do this".
You know the old adage...teach someone to fish and they can feed themselves for life...or something along those lines.
I much prefer to do that than spoon feed someone little bits and pieces of fiddling suggestions.

I do think that people should be aware of how their machines function and have access to the clinical setup menu area if for no other reason than people should understand their machines and their therapy better.

mlg123 wrote:I would wake up feeling short of breath, usually right after having some dream about drowning.

OMG the drowning dreams. Horrible. Mine vanished when I started CPAP.

Welcome!!

yaconsult wrote:Oh, but you can, if you really want to - the information is out there. Let's wait for Pugsy to check in on the matter.

I wonder how much information the doctor gets to see via the modem - if it's just summary and compliance or if he actually gets the detailed reports? If you look at the posts at the top of the forum, you can find out how to install the software and look at the data yourself. I find it very reassuring to see just what the machine is doing throughout the night to treat my apnea and to be able to see just how well it's working. It's unfortunate that sometimes the biggest worry from the doctor's office is if you are meeting the compliance requirements so that the insurance will continue to pay - NOT how effective the treatment is or how it might be adjusted to be even better.

We have the same machines. Have you tried the different a-flex settings yet? There are three, I believe, and I find a-flex 3 to be the most comfortable for exhalation. Did you get the user manual with your machine? They are also available for downloading, if needed.

1. I know I can change the settings on my machine, but I am happy with my care and the sleep therapist and sleep doc are readily accessible if I have a problem. I have no desire to go against their instruction right now. They have been the most helpful to my therapy to date.

2. They can pull all of my data via the modem. They had pulled all of my data through the modem before my appointment yesterday, the assistant told me. She handed me the data that she had printed before I saw the doctor. She never touched the machine or SD card in order to get it.

3. I am using A-flex. I mention that in my original post. I am also using the sleepyhead software, which I also mentioned in my original post. I love the sleepyhead software. I had noted when I was lurking on this forum, that every post I saw mentioned the same software. I haven't seen anyone on this forum mention using any other. Sleepyhead rocks! I have learned a lot from this forum on how to read the data on sleepyhead too.

I do have a question on A-flex. According to Sleepyhead my machine is set at A-Flex x2. My sleep therapist says the machine is set to Auto Flex. Is there such a thing as Auto Flex?

Guest wrote:My sleep therapist says the machine is set to Auto Flex. Is there such a thing as Auto Flex?

No...there is no Auto Flex per se...now the amount of Flex reduction is flow based so maybe they were thinking about that variability but it isn't the machine adjusting flex for therapy results. So while it will vary with force of breathing it doesn't decide how much to vary on what it senses in terms of therapy results.
They also may have meant the auto adjusting pressure function as AFlex is only available with the APAP mode auto adjusting pressure.

AFlex has 3 settings...1, 2 and 3 with 3 offering the most potential exhale relief and the most it will ever give you is 2 cm reduction.
Also the amount of reduction is flow based and not based on the setting...so that setting of 3 may or may not give you 2 cm reduction during exhale. Someone who breathes a lot more forcefully is going to see more reduction than someone who breathes rather shallowly even if they are using the same pressure and the same AFlex setting.

Guest wrote:I do have a question on A-flex. According to Sleepyhead my machine is set at A-Flex x2. My sleep therapist says the machine is set to Auto Flex. Is there such a thing as Auto Flex?

Sigh. The Philips Respironics product line has names that remind me of AKC [American Kennel Club] names for dogs (the English springer spaniel that won the Sporting Group category at Westminster this year is named Wynmoor Sweetgrass White Diamonds, a/k/a "Liz"). In the case of PR I think it's a question of brand names/trademarks/corporate acquisitions over the years.

So, for example, one machine is named "PR System One REMstar Auto A-Flex." It would be super easy to think of an auto machine with A-Flex as having "Auto-Flex," but the correct proprietary name of the feature is "A-Flex." I'd guess it's just a slip of the tongue on her part.

As a footnote, my machine (and probably yours) has A-Flex, C-Flex, and C-Flex+ available. There is no A-Flex+. My provider manual for my PR APAP says that A-Flex is the same thing as C-Flex+ when the machine is set in auto mode.

The user manual you should have gotten with your machine at the bottom of page 8 has a description of the flex modes available and there is a demo function so that you can try them out and see which one you like.

Flex Screen
From the Home screen, highlight “Flex” and press the wheel. The following Flex screen will appear.
Flex Screen
note: “Flex” shown above will display as the current Flex mode chosen by the provider.
• Flex - The Flex comfort feature allows you to adjust the level of air pressure relief that you feel when you exhale
during therapy. Your home care provider can enable or disable this feature. When your provider enables Flex, a level
will already be set for you on the device. If this is not comfortable, you can increase or decrease the setting. The
setting of “1” provides a small amount of pressure relief, with higher numbers providing additional relief. If the provider
has disabled this feature, this setting will not display.
note: This same setting is also available under the “Setup” screen.
• Flex demo - The Flex setting allows you to set the Flex level prior to beginning therapy. The Flex demo setting
allows you to try out the different Flex settings in real time. After a period of time of inactivity, the device will stop
therapy and will use the last Flex demo setting as the new Flex setting for your device. When therapy is again started
from the Home screen, the device will operate using the new Flex setting.

HA! I had assumed I could not change the settings on the A-Flex myself, and I had not tried. However, I am able to change the setting and I just upped it to 3! Yay!

mlg123 wrote:HA! I had assumed I could not change the settings on the A-Flex myself, and I had not tried. However, I am able to change the setting and I just upped it to 3! Yay!

as others have pointed out, you *can* change any setting on the machine, should you ever decide you want to.

mlg123 wrote:HA! I had assumed I could not change the settings on the A-Flex myself, and I had not tried. However, I am able to change the setting and I just upped it to 3! Yay!

There are different levels of settings. A-Flex is considered a "comfort" setting so it is normally user adjustable unless they specifically disable it. Other, more critical settings, like pressures and limits require putting the machine into a special mode as was mentioned earlier. But feel free to experiment with the comfort settings to see which settings you like best - that's what they are there for. The same thing with the ramp. Many people, like myself, want no ramp at all - too hard to breathe. Others want a ramp or they can't fall asleep. That's why it's so easy to adjust.

If you've got a doctor who is very involved and responsive to your needs, then you're lucky to have a good one! Get as much help as you can from him/her. The bottom line is how you feel during the day. And looking at our sleepyhead data just provides confirmation that the machine is doing what we need it to do.

Was the A-Flex 3 any more comfortable for you? I tried it and liked it so I haven't tried the others yet.