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One week in...the good, the bad, the ugly
#1
Surprised 
Well, after having my titration group refer me to a DME out of network initially, I've been involved with the CPAP lifestyle for a week now. I'm disappointed with the machine chosen for me. Its a Philips System One unit, but it only records usage - not results and has no auto feature. By the time I pay my deductable, I could have almost bought the Resmed 910. I hate getting no feedback.

My prescribed pressure is high (17cm). So the first challenge was just getting used to that much pressure. Ramping 45min 4->17 has helped that. Second challenge was keeping a seal. I learned the units actually seal better when you're laying down. I have three masks - a Wisp, and Amara View (new model) and another Amara model with a gel seal that looks like an athletic cup. This one originally burned the bridge of my nose but seems to be the most effective.

I've developed a problem of removing the mask in my sleep...any ideas?

I have a Fitbit watch that records my heartbeat and lack of motion when I sleep. I understand it may not be 100% accurate but prior to CPAP my beats per minute was 51 and now its almost 70. That's a 20% increase. Any idea what's going on there?

In addition I never registered any "restful sleep" prior and now my best is about 4 hrs continuous motionless sleep.

I'm no longer sleepy at lunchtime or driving home, but I do find myself yawning more. I no longer get up with a thick paste on the roof of my mouth and my sinuses seem much clearer. Initially my lungs kinda felt like they had a little water in them (?) but that seems to be going away. Then this morning I looked in the mirror and the dark circles/bags under my eyes are going away too.

Seems I'm on my way...
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#2
(06-11-2015, 09:53 AM)jumpinminnow Wrote: I've developed a problem of removing the mask in my sleep...any ideas?

I have a Fitbit watch that records my heartbeat and lack of motion when I sleep. I understand it may not be 100% accurate but prior to CPAP my beats per minute was 51 and now its almost 70. That's a 20% increase. Any idea what's going on there?

It will take awhile to get used to the mask. One week is not enough time for most people to get used to wearing a mask. Keep trying and maybe wear it while you are watching TV or reading if your mask allows you to.

As for your heart rate, did your sleep study or titration show reduced oxygen levels?


Using FlashAir W-03 SD card in machine. Access through wifi with FlashPAP or Sleep Master utilities.

I wanted to learn Binary so I enrolled in Binary 101. I seemed to have missed the first four courses. Big Grinnie

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#3
(06-11-2015, 09:53 AM)jumpinminnow Wrote: Well, after having my titration group refer me to a DME out of network initially, I've been involved with the CPAP lifestyle for a week now. I'm disappointed with the machine chosen for me. Its a Philips System One unit, but it only records usage - not results and has no auto feature. By the time I pay my deductable, I could have almost bought the Resmed 910. I hate getting no feedback.

My prescribed pressure is high (17cm). So the first challenge was just getting used to that much pressure. Ramping 45min 4->17 has helped that. Second challenge was keeping a seal. I learned the units actually seal better when you're laying down. I have three masks - a Wisp, and Amara View (new model) and another Amara model with a gel seal that looks like an athletic cup. This one originally burned the bridge of my nose but seems to be the most effective.

I've developed a problem of removing the mask in my sleep...any ideas?

I have a Fitbit watch that records my heartbeat and lack of motion when I sleep. I understand it may not be 100% accurate but prior to CPAP my beats per minute was 51 and now its almost 70. That's a 20% increase. Any idea what's going on there?

In addition I never registered any "restful sleep" prior and now my best is about 4 hrs continuous motionless sleep.

I'm no longer sleepy at lunchtime or driving home, but I do find myself yawning more. I no longer get up with a thick paste on the roof of my mouth and my sinuses seem much clearer. Initially my lungs kinda felt like they had a little water in them (?) but that seems to be going away. Then this morning I looked in the mirror and the dark circles/bags under my eyes are going away too.

Seems I'm on my way...

what did your prescription from the doctor say? If the prescription didn't say a specific machine and dispense as written, I would research which machine you prefer, go to your doctor and get him/her to rewrite the script with the specific machine that you want and add dispense as written and if you want/need the heated hose, that should be added to the script. Supplies preferred by customer.

Do this before too long or they won't take it back. Also, my suggestion would be to consider a vpap/bipap machine because most cpap machines only go to the pressure of 20.

Hope this helps.
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#4
(06-11-2015, 10:29 AM)AlanE Wrote:
(06-11-2015, 09:53 AM)jumpinminnow Wrote: I've developed a problem of removing the mask in my sleep...any ideas?

I have a Fitbit watch that records my heartbeat and lack of motion when I sleep. I understand it may not be 100% accurate but prior to CPAP my beats per minute was 51 and now its almost 70. That's a 20% increase. Any idea what's going on there?

It will take awhile to get used to the mask. One week is not enough time for most people to get used to wearing a mask. Keep trying and maybe wear it while you are watching TV or reading if your mask allows you to.

As for your heart rate, did your sleep study or titration show reduced oxygen levels?

Thank you for the response. My 02 saturation levels were dropping to 60% in the study.
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#5
Any chance you can return the CPAP? With a pressure of 17, you should have been considered a candidate for BiPAP anyway. I agree that it is unacceptable not to have a data recording machine today. Without the therapy data, you have absolutely nothing to go on but qualitative "how do I feel today?".

Is the DME a well known national?
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#6
Just want to add, if you want to return that brick, your best approach is to complain you can't exhale against the pressure, and are not sleeping well. Non-compliance might be okay in this instance IF you want the upgrade.
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#7
I am also a week in. I also notice I no longer falling asleep against my control on the drive to work or in meetings, but I am also yawning more....weird...

I'm happy with my doc who ordered an resmed air curve 10 vauto bipap. It's a great little machine with all the bells and whistles.

My top pressure is only 14, but the doc ordered the bipap because I was getting excess air in my stomach with the cpap....so much so I had to call in the sleep study technician about it.

My biggest problem has been masks. The FP simplus is nice and comfy, bu tends to leak like crazy around the eyes. The opus nasal mask is a lot more convenient and doesn't leak, but is so far very uncomfortable to wear.

I've got my events down to around 3 per hour on avg....looking forward to dialing in less than 1 per hour.
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#8
Just want to add, if you want to return that brick, your best approach is to complain you can't exhale against the pressure, and are not sleeping well. Non-compliance might be okay in this instance IF you want the upgrade.

This is actually a good approach. I did complain about this the day I got it although I've gotten used to it a bit. I've also been swallowing air during the night.
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#9
I am also just about a week in on the CPAP journey. I slept through the night last night for the first time in more years than I can remember. I am using a Resmed Airsense 10 Auto. It is working very well. My pressure level is set to auto ramp between 5 and 10. My "score" as displayed on the Resmed Myair website has been 95 for three of the four nights that are recorded. The other was 93. The website data indicated that I had removed my mask three times last night. I recall waking up briefly but not removing the mask at all. Oh well.

I have also found that I am less sleepy during the day but, as with others, still yawn frequently. I have the same issue that Cygnus has experienced. My FP Simplus full face mask leaks out the top blowing across my eyes. I found that tightening the mask straps reduce that problem. Air blowing past my eyes is very hard to ignore. Otherwise, the Simplus is very comfortable. I have to breathe through my mouth at night. My nose can barely keep up with my needs at rest during the day, any activity and I must breathe through my mouth. At night, while lying down without gravity pulling fluids downward, my nose is totally useless. I am sure I will always have to use a full face mask.

I was told that the lab, Z Sleep, is monitoring my sleep data via the cellular system. Makes sense since it shows up on the Myair website. They also told me that they could adjust my machine remotely through the same system. I am concerned about access in that manner. Can they just log in and change my settings without notifying me first? Could a hacker do the same thing? I know that I can disable the cell access by enabling the airplane mode. I am sure pulling the power cord would even be more effective.

I travel frequently. The remote access for the professionals to see and adjust my machine will be a convenience. I am quite capable technically. I intend to set up one of the monitoring systems this weekend. I am very happy with my doctor. I am confident in her ability. Now that I have found this website, I will be able to track my own progress and not just take their directions blindly.
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#10
(06-11-2015, 09:33 PM)foss Wrote: I was told that the lab, Z Sleep, is monitoring my sleep data via the cellular system. Makes sense since it shows up on the Myair website. They also told me that they could adjust my machine remotely through the same system. I am concerned about access in that manner. Can they just log in and change my settings without notifying me first?

Yes they can - but if they do it without your consent you should complain vociferously. I'd say it's malpractice.

Of course you have to find out before you can complain. You might call up your DME and aske about their policies.

Quote:Could a hacker do the same thing?

Unlikely via the cell network. Wifi networks are in general more vulnerable. Cell networks are generally highly encrypted these days as everyone's gone over to digital networks.

I have the same machine and I don't lie awake nights worrying about it.

Ed Seedhouse
VA7SDH

Your brain is not the boss.

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