Blind Dial Wingin'

[JQLewis]

Three days ago, after the two worst days of aerophagia I've experienced, I adjusted the pressure on my machine from 13 to 12.4. So far things definitely seem better, but because of the lack of data from my machine I really don't know what's going on. A few questions/observations.

1- I'd read not to adjust the pressure more than .5 at a time, but the machine seems to go in increments of two, so I had to choose between 12.6 and 12.4. Did miss something, or is that just the way the Escape works?

2- My aerophagia the last three days has gone from an elephant to a Chihuahua.

3- My sleep has seemed better as well. I woke up this morning with the most energy I've had since starting CPAP four months ago. I've had back-to-back solid blocks of three hours sleep the last three days, which for me is something I haven't had for twenty years. 8 hours total sleep on Friday, 9 Saturday and 7 last night. No daytime naps needed.

My new sleep doc scripted for a new machine, and it worked its way through the DME to my insurance company one week ago. It might be a couple of weeks before I hear a decision, and if it's no, I've got to try an appeal, and I have no idea how long that might go on for. Meanwhile, I've got my Escape and my lowered pressure. Any suggestions, warnings, etc. are appreciated.

[Pugsy]

1- I'd read not to adjust the pressure more than .5 at a time, but the machine seems to go in increments of two, so I had to choose between 12.6 and 12.4. Did miss something, or is that just the way the Escape works?

You didn't miss anything. It's just the way all the ResMed machines do things. The adjustment is offered in 0.2 cm increments.
Respironics machines offer adjustments in 0.5 cm increments.

[Janknitz]

PERFECT example of the stupidity of machines withou data capability.

Let us know if you want help with the appeal, but your doctor's letter will be key. Sometimes THEY need help with what to write. He needs to emphasize that without data he cannot assess whether changes in setting are effectively treating your apnea and that you are unable to tolerate the titrated pressure. The alternative is to do a titration study over and over again each time you need a pressure change.

[Ayleone]

I am still new to this whole thing, but my personal experience has been so:

After 13 days of CPAP, I got a severe sinus infection and got really congested. My husband noted I started snoring again. After extensive research into the issue (many answers were found in this forum) I found out how to access the provider menu on my Resmed S9 Elite and adjusted my pressure from 9.0 to 9.4. I stopped snoring. Yesterday, I learned how to used Sleepyhead and pull data from my machine to look at. I saw that in the 2 weeks of 9.0 compared to the 2 weeks of 9.4, my AHI was consistently lower (a few nights at .22 or .45!) and I had fewer events overall.

I found a site that talked about our right to adjust our pressure as we see fit; the argument was that we take home our prescription medications and adjust them at home as needed-so why can't we adjust our pressure along with our humidity settings? With proper information at your disposal, I see nothing wrong with adjusting your own pressure in response to changes in your needs as time goes by, but recommend that you keep a notebook and document the changes. A good Dr. will appreciate your thoughtful approach to maintaining your health and work with you.

[Sir NoddinOff]

I am still new to this whole thing, but my personal experience has been so:

After 13 days of CPAP, I got a severe sinus infection and got really congested. My husband noted I started snoring again. After extensive research into the issue (many answers were found in this forum) I found out how to access the provider menu on my Resmed S9 Elite and adjusted my pressure from 9.0 to 9.4. I stopped snoring. Yesterday, I learned how to used Sleepyhead and pull data from my machine to look at. I saw that in the 2 weeks of 9.0 compared to the 2 weeks of 9.4, my AHI was consistently lower (a few nights at .22 or .45!) and I had fewer events overall.

I found a site that talked about our right to adjust our pressure as we see fit; the argument was that we take home our prescription medications and adjust them at home as needed-so why can't we adjust our pressure along with our humidity settings? With proper information at your disposal, I see nothing wrong with adjusting your own pressure in response to changes in your needs as time goes by, but recommend that you keep a notebook and document the changes. A good Dr. will appreciate your thoughtful approach to maintaining your health and work with you.

The classic counter argument on this forum to a doctor objecting to a patient checking and acting upon their own CPAP data is the example of a diabetes patient. Nobody tries to discourage a diabetic from looking at their blood sample data and making changes to their glucose levels etc. Should be the same for CPAP.

[Nick Danger]

How about buying an oximeter for about $50 to $100? Not nearly as helpful as a full data CPAP, but will at least let you know if you are having problems with O2 desaturation.

[jencat824]

My new sleep doc scripted for a new machine, and it worked its way through the DME to my insurance company one week ago. It might be a couple of weeks before I hear a decision, and if it's no, I've got to try an appeal, and I have no idea how long that might go on for. Meanwhile, I've got my Escape and my lowered pressure. Any suggestions, warnings, etc. are appreciated.

Since your doc scripted for a full data machine, different from your 'brick' you should get it. I had a similar situation, had a straight CPAP, doc scripted for a APAP & I got it without any trouble, just a few months after having gotten the straight CPAP. Let us know what your insurance does with this.

Jen

[Tatooed Lady]

I think you're on the right track. No major changes, just tweaking enough that you can SLEEP. That's what this is, after all....SLEEP THERAPY. If your doctor complains or threatens...fire him/her.

[Janknitz]

I am still new to this whole thing, but my personal experience has been so:

After 13 days of CPAP, I got a severe sinus infection and got really congested. My husband noted I started snoring again. After extensive research into the issue (many answers were found in this forum) I found out how to access the provider menu on my Resmed S9 Elite and adjusted my pressure from 9.0 to 9.4. I stopped snoring. Yesterday, I learned how to used Sleepyhead and pull data from my machine to look at. I saw that in the 2 weeks of 9.0 compared to the 2 weeks of 9.4, my AHI was consistently lower (a few nights at .22 or .45!) and I had fewer events overall.

I found a site that talked about our right to adjust our pressure as we see fit; the argument was that we take home our prescription medications and adjust them at home as needed-so why can't we adjust our pressure along with our humidity settings? With proper information at your disposal, I see nothing wrong with adjusting your own pressure in response to changes in your needs as time goes by, but recommend that you keep a notebook and document the changes. A good Dr. will appreciate your thoughtful approach to maintaining your health and work with you.

The classic counter argument on this forum to a doctor objecting to a patient checking and acting upon their own CPAP data is the example of a diabetes patient. Nobody tries to discourage a diabetic from looking at their blood sample data and making changes to their glucose levels etc. Should be the same for CPAP.

Insurance companies care about their own bottom lines. So you have to put it in terms they understand. It will cost them MORE to pay for additional titrations. It will cost them MORE if the patient is non-compliant because he can't tolerate the device and has long term sequelae of untreated apnea which the insurer will have to pay for. AND, the machine provided is NOT MEETING HIS MEDICAL NEEDS because it doesn't have provide the necessary data to determine treatment setting that he can use effectively.

[JQLewis]

How about buying an oximeter for about $50 to $100? Not nearly as helpful as a full data CPAP, but will at least let you know if you are having problems with O2 desaturation.

Good suggestion. Thanks. I'll have to look into these devices.

[The Latinist]

the argument was that we take home our prescription medications and adjust them at home as needed

We do?