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Brand new, and I have several questions/concerns
#1
Brand new, and I have several questions/concerns
Hi there!

As stated above, I am brand new to CPAP therapy. I had my diagnostic sleep study in mid-September, officially diagnosed with OSA in the beginning of October, and finally FINALLY got my Philips Respironics Dreamstation APAP on December 7th.

In my 5 hours of sleep during the study, I had an AHI of 27.6, a back index of 37.7, and an REM index of 42.5. A larger concern was the severe oxygen desaturations that happened during REM sleep, accounting for nearly 10% of my sleep time.

The loooong hold up was due to my neurologist's office needing to send notes to my DME. When I finally got a hold of an actual person at my DME's office, and was informed that's what they were STILL waiting on (since mid-October), I got them the notes sent over by the next working day, and an appointment within a week.

In all of this, I have not had a titration study. Yet, for some reason, they prescribed me a beginning CPAP of 9.0. In mid-November, I got a voicemail stating that my titration study was approved. I called her back, left a message for her, and didn't receive a phone call back until last Wednesday. I missed her call again, so once again I have missed her message.

Now, my insurance is renting my machine (as most do) for "up to 13 months" according to my DME. However, there is no compliance requirements, as per the list she showed me.

I have (mostly) taken to CPAP like a fish to water. I am averaging 10 hours a night for the last 4 nights. I am having some trouble with my mask fit, but I am not sure if it's paranoia or actual problem. I am also still rousing multiple times a night, however I am otherwise medically difficult (not quite complex, certainly no where near simple) and this may not at all be related to my sleep apnea or treatment. It has also removed my waking headaches from morning one and that feels like a miracle alone.

Now, on to my actual questions.

- Since I have not had my titration study, and my doctor (as per his assistant, at least) won't change my prescription without being able to bill for an office visit, and I can't have an office visit until I complete other tasks he wants done, why the HECK am I not on auto-pap? 

- Even though my sleep study summary says I didn't have any central apneas, is it possible I still do? Because I have problems with it while I'm awake, let alone I can imagine when I'm asleep. And my machine's data is saying I'm having clear airway apneas.

- Are they even looking at my machine data over the modem card since I'm not a compliance patient? If I change it to APAP..... am I gonna get yelled at by the CPAP police and made to give my machine back?

Thank you in advance. 

I have all of the data for the last 4 nights from SleepyHead on imgur if anyone needs it. As soon as I am permitted to post links....
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#2
RE: Brand new, and I have several questions/concerns
"why the HECK am I not on auto-pap? "

I can't think of a good reason. Looking forward to seeing your data from SleepyHead.


"Even though my sleep study summary says I didn't have any central apneas, is it possible I still do?"

Yes. It's possible you have some at baseline but not on the night of your diagnostic PSG, and it's also possible that you have CAs as a result of PAP.


"If I change it to APAP..... am I gonna get yelled at by the CPAP police and made to give my machine back?"

Seems unlikely, but personally I would discuss with them first.
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#3
RE: Brand new, and I have several questions/concerns
(12-11-2017, 10:41 PM)Shin Ryoku Wrote: Looking forward to seeing your data from SleepyHead.

https://imgur.com/a/545IB

Let's see if this works?

((I'm sorry Apnea Board mods, I know I'm being bad!))


<<Moderator action: I fixed the link for you Wink >>
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#4
RE: Brand new, and I have several questions/concerns
I’m just starting to look at these, but re:

“I have issues with central apneas and hypopneas while awake at least. This is illustrated here.”

Central apneas and hypopneas (or other events) while awake aren’t real central apneas and hypopneas. Events are only real if they happen while asleep...
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#5
RE: Brand new, and I have several questions/concerns
I wasn't sure if it was the same words or not. I do "forget" to subconsciously breathe while awake. It is likely related to my dysautonomia.

The longest delay in sleep is the first night. It was either an hour and a half or two hours. The second was within 15-20 minutes of beginning the second ramp. The third and fourth nights were within 45 minutes or so of beginning.
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#6
RE: Brand new, and I have several questions/concerns
The desaturations during REM sleep would explain the morning headache and why it is gone now.  So that is a good positive.

Personally, I would not worry much about having a titration study.  That is just one night's data that is a starting point to finding the correct pressure.  You are better off using your machine in APAP mode (or CPAP Check) and using SleepyHead and many nights data to determine what are the actually correct pressures.

The CPAP of 9.0 is doubtless an initial guess.  Why the doctor did prescribe APAP I can only guess at.  Some doctors don't like/trust it.

Four nights in is way, way too early to be fretting about still waking up.  It takes time for your mind to adjust and  your body to heal.  You have months of gradual changes ahead of you.  Mask fit is a concern for most of us.  I adjust mine whenever I wake up to stop minor leaks.  They don't affect my therapy, but they annoy me.

It seems unlikely that you have true central apnea if the sleep lab did not pick it up.  These machines are not as accurate as the lab and almost everyone will show some level of central apnea according to these machines.  Rolling over in bed can get detected as a central apnea.  It is not something to worry about.  You might also have CPAP induced central apneas which is a common thing when starting out.  Reducing your Flex setting might help.

In other words, Welcome!
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#7
RE: Brand new, and I have several questions/concerns
Your leak rates look fine other than a couple minor blips that are not of concern.  They don't seem to be waking you up.  It is large leaks that are a problem.

Also, be aware that all masks have a leak rate considerably greater than zero.  That is by design.  The machines can compensate for quite a bit of leaking without affecting the therapy.  I think the DreamStation is good up to 24 L/min.
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#8
RE: Brand new, and I have several questions/concerns
Thank you so much!

It's really odd, as now that I am sleeping better, I am more aware of my wakings. I am more awake during them, yet also not awake enough to roll out of bed at all or anything haha.

SleepyHead says I haven't had any large leaks with my mask, but I also know it's kind of guessing. And I'm still working on deciphering all of the information on it haha.
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#9
RE: Brand new, and I have several questions/concerns
G'day Lexi. Welcome to Apnea Board.

Yes, you were bad, but I fixed the link for you anyway. Smile

Looking at your charts it seems the non-titration guess of 9 cm H2O was pretty good. At this stage I wouldn't bother with the titration test, but switch to APAP with a fairly narrow range around your current pressure (say 8 - 12) and take it from there. You my well get yelled at, but there's no law against optimising your own treatment. How you want to manage that really depends on the relationship you have with your doc and DME.

You can request your CPAP setup manual via the link at the top of this page - this will give you access to the arcane mysteries and secret handshakes menus of your machine.

You are showing a few central apneas but not enough to worry about. it's quite possible these will go away as your body adapts to the machine.

Finally, the mask is critical. If it leaks or is uncomfortable then all the effort is wasted. The straps should be firm but not tight. If they are hurting you then they're far too tight. This is where the relationship with you DME comes in - you may need to try several different masks to find the one that works for you. A friendly and compliant DME is essential for that process to work.
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#10
RE: Brand new, and I have several questions/concerns
(12-11-2017, 10:16 PM)stormylexi Wrote: Hi there!

As stated above, I am brand new to CPAP therapy. I had my diagnostic sleep study in mid-September, officially diagnosed with OSA in the beginning of October, and finally FINALLY got my Philips Respironics Dreamstation APAP on December 7th.

In my 5 hours of sleep during the study, I had an AHI of 27.6, a back index of 37.7, and an REM index of 42.5. A larger concern was the severe oxygen desaturations that happened during REM sleep, accounting for nearly 10% of my sleep time.

The loooong hold up was due to my neurologist's office needing to send notes to my DME. When I finally got a hold of an actual person at my DME's office, and was informed that's what they were STILL waiting on (since mid-October), I got them the notes sent over by the next working day, and an appointment within a week.

In all of this, I have not had a titration study. Yet, for some reason, they prescribed me a beginning CPAP of 9.0. In mid-November, I got a voicemail stating that my titration study was approved. I called her back, left a message for her, and didn't receive a phone call back until last Wednesday. I missed her call again, so once again I have missed her message.

Now, my insurance is renting my machine (as most do) for "up to 13 months" according to my DME. However, there is no compliance requirements, as per the list she showed me.

I have (mostly) taken to CPAP like a fish to water. I am averaging 10 hours a night for the last 4 nights. I am having some trouble with my mask fit, but I am not sure if it's paranoia or actual problem. I am also still rousing multiple times a night, however I am otherwise medically difficult (not quite complex, certainly no where near simple) and this may not at all be related to my sleep apnea or treatment. It has also removed my waking headaches from morning one and that feels like a miracle alone.

Now, on to my actual questions.

- Since I have not had my titration study, and my doctor (as per his assistant, at least) won't change my prescription without being able to bill for an office visit, and I can't have an office visit until I complete other tasks he wants done, why the HECK am I not on auto-pap? 

- Even though my sleep study summary says I didn't have any central apneas, is it possible I still do? Because I have problems with it while I'm awake, let alone I can imagine when I'm asleep. And my machine's data is saying I'm having clear airway apneas.

- Are they even looking at my machine data over the modem card since I'm not a compliance patient? If I change it to APAP..... am I gonna get yelled at by the CPAP police and made to give my machine back?

Thank you in advance. 

I have all of the data for the last 4 nights from SleepyHead on imgur if anyone needs it. As soon as I am permitted to post links....

Hi stormylexi, (DeepBreathing has more directed helpful info just ahead of my post, I'll leave mine up anyway)

Welcome to the Apnea Board. All of the following will be my opinions:

1. why not APAP? To the billing departments, brick CPAP (ones that can only convey remotely compliance data), better data-capable CPAP, APAP, etc. are basically similar in price when viewed by the insurance. BUT, here's the difference, on the DME side, the basic CPAP costs them less, and they could bill insurance the same. Is that THE reason you got a CPAP? Maybe. I think it is this reason plus the probability that your prescription did not specify APAP (at least as far as I can tell, this is true from your posted info).

2. Central Apnea? Maybe surprisingly to you, I am well aware of what you are experiencing. I do not yet know what to make of it myself. I KNOW, as in documented medical reports, I have Central Apnea. Unproven and cause(s) unknown, I have found myself where I had to remind myself to breathe while awake. Note, this did happen BEFORE I had my newest ASV machine, which is a much higher level device than a CPAP. It is issued to me due to Central Apnea. I cannot recall any further episodes of not breathing like that since being on my ASV. FWIW my sleep study for BPAP prior to the ASV sleep study showed Centrals as 124 and Obstructive as 24 for reference.

2A. Central Apneas can be caused/induced when starting CPAP therapy. This is considered normal and will likely begin to fade over time.

OR

2B. Centrals can also be more like I have, and do not disappear, but get worse while on CPAP. IMO though, centrals should have registered on a PSG/sleep study. I may be in need of correcting though, I'm basing info on my experience for this.

2C. CA that shows on the machine can be clear airway or it may indicate centrals. Gurus via viewing your machine data by loading your info from the SD card and reports on SleepyHead will assist these gurus tremendously. You can post links just like you have. Break it by a single space somewhere, gurus will get what you're doing, and you won't be made to stand in the corner. After 4 to 6 posts, you will not have to break your links with the space BTW.

3. Changing settings 99.9999% of the time will not get you into trouble with the CPAP police. Shall we say that means basically never. Almost every insurance company, doctor, or DME really does not care who adjusts the machine, so who better to make adjustments than the one that has to use it? In fact, I told both DME's I use(d) that I WILL adjust my ASV. I don't advise getting a T-shirt that says that, but if you'd like to do that, go for it. OK, some doctors may not like it because of some various reasons. Seriously, if you're editing the settings while EDUCATED on WHAT you're changing, and WHY you're changing it, absolutely do so. Get the clinical manual for your device here on AB by the way.

Sorry for a long posting. Again, welcome, and best wishes for success.

Dave B

lots-o-coffee
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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