Sludge: Help Needed, Please!

[perchancetodream7]

Hello again Sludge,

I finally got SleepyHead installed and have several weeks of data listed. I am posting my screenshot overview here. I have an appointment with my sleep doctor tomorrow and plan to pick up my titration report; so far I've only gotten the diagnostic study.

My plan is to ask her to switch my current Cflex+ with an auto bipap. I am hoping that the adjusting pressure will help me stay asleep; I have been on fixed Cpap for almost two months and there hasn't been any improvement at all.

She has refused to switch therapies so far, even though the centrals are more than likely linked to the morphine. Her reasoning is that the cpap will "eventually work." My pain doc disagrees.
If she refuses again tomorrow, I have a new sleep doctor in the wings, because I can't stay this way much longer. Thanks for looking.

~Susan

[perchancetodream7]

Thank you

[palerider]

I have NO idea!? It is not my post!

pay no attention to avi, his love of selfies is getting out of hand.

[kaiasgram]

*Bump*

[Sludge]

Sorry, was taking some time off at The Game.

Without the previously requested data, I think it's tough to make an objective case to switch from CPAP to anything else. The AHI is certainly low enough for her to use the "Needs More Time" argument, or even the "You're Doing Fine" argument (AHI < 5).

However, given the horrible therapy continuity given Session Data, you could argue that you're not "Doing Fine". Additionally, the AHI could be totally spurious (you're doing much better, or much worse, or maybe it all averaged out and it's representative).

Anyway, I think the only way you could argue for BiPAP (assuming that's what you need) would be to invoke AASM Clinical Practice Standard 4.3.1.1, which states

If the patient is uncomfortable or intolerant of high pressures on CPAP, the patient may be tried on BPAP. If there are continued obstructive respiratory events at 15 cm H2O of CPAP during the titration study, the patient may be switched to BPAP (Consensus).

[perchancetodream7]

Thank you! Hope you enjoyed your time away. I went to see her yesterday and am just so confused. She wouldn't even look at the study data I printed out from the Journal of Clinical Sleep Med; she dismissed it by stating that I should be careful going online because there's a lot of "crap" out there. True, I may not know what I'm doing, but I had legitimate info to show her. I guess I'm just used to being able to discuss study data with my pain doc--he doesn't automatically refute findings.

I wish I knew about that Clinical Practice Standard you cited yesterday. With reluctance, she did agree to try an Auto. Only, she wrote for an Auto Cpap machine instead (why, I don't know), while stating she doesn't believe it will help me. Maybe it won't. She said that the fixed Cflex+ was working on the OSA. That's great, but I'm still waking up every hour on the hour and that is what's disabling my ability to function.

She said that my case is particularly difficult and I could tell she wasn't sure how to proceed. She asked if my pain doc had any ideas. Sludge, I know the morphine is destroying my sleep health (has been for years), but the journal studies that exist so far say that the most effective trial treatment for long term opioid dependent patients has been with "bipap accompanied by ASV. But, my AHI goes up and down for some reason. So, that's that, I guess.

She wants to take 2mg. of Klonopin every night before bed. I asked, won't that suppress my breathing even more and make it harder for my body to wake up to breathe? She agreed but said it is a "catch 22 situation." Easy for her to say. I'm not comfortable doing that. Plus, I get so many headaches as it is.

I have no idea if the Auto Cpap will help. My brain is swimming with all of this stuff. I just feel like there's no way to fix this.

I also picked up a coy of my titration study...not that I know what I'm looking at. lol.

Thanks again for getting back to me; I really appreciate your help. ~Susan

[avi123]

Username:perchancetodream7
Gender:None specified

You are not providing (hiding?) a lot of information about yourself such as:

your age and gender
your set- up of CPAP, mask, etc.
besides sleep disorder, what other medical ailments you suffer from?
why do you take morphine?
your Docters, what designations do they hold, why don't you seek a neurologist who also holds an MD in Sleep Medicine?
your last sleep study results, what were they?

[perchancetodream7]

Mea culpa! I am officially out of hiding! The withholding of information wasn't due to secrecy, but rather brevity. I am not feeling well and decided to bypass the profile section when I signed up. I know some of the members here from the old apnea forum where I told my original story.

I don't "take" morphine; I have a morphine device implanted subcutaneously that delivers the drug directly to the area of pain in my back. i have been diagnosed with failed back surgery syndrome, which has left me with a host of unpleasant ailments, including my apnea. I used to take oral opioids but switched to the pump in 2000 to, among other things, rescue my liver; ironically, the pump is the culprit for all these nasty centrals.

You may see, from my previous posts, that I mention my pain control doctor; it appears I will be wedded to one for the rest of my life. So be it.

As for a "sleep neurologist," this is a new title to me. I've only heard it here once before. I am hopeful that I will not have to seek one out, but if things continue the way they are I very well may.

Well, there it is. I guess we all have a story, huh?

Have a Happy and Healthy New Year!

[Sleeprider]

This is not meant as advise, I'm just surprised at your sleep doctor or DME insistence on using a dated fixed CPAP for complex apnea. Are you really interfacing with a physician? What is your current Cflex setting? What is causing the fragmentation of your therapy hours?

[ChicagoGranny]

I hope the auto helps you and what pressure settings will you use???

That is what I was wondering. If the doc sets it at 4 - 20, things might get worse.

[Sludge]

AASM Clinical Practice Standard 4.3.1.1, which states

If the patient is uncomfortable or intolerant of high pressures on CPAP, the patient may be tried on BPAP. If there are continued obstructive respiratory events at 15 cm H2O of CPAP during the titration study, the patient may be switched to BPAP (Consensus).

BTW, here's the document with that CP in case you need to wave it at her:

http://www.aasmnet.org/resources/clinic ... 040210.pdf

[cathyf]

For me, at least, the data from the apap is really important. An apap is a highly sophisticated piece of engineering, based upon decades of research. I see a particular pattern -- I fall asleep, and the flow limitations start, and my pressure goes right up into the double-digits. Then I eventually go into REM sleep, the flow limitations really take off, and the pressure zooms into the high teens. Then the REM sleep is over, and the FLs back off, and the pressure wanders back down. Then I cycle through it all again.

Because of how it is engineered, the machine wants to raise and lower the pressure in response to its real time observations of what your breathing is doing. Breath by breath, all night, when you are asleep. WHY does your sleep doctor want to prevent the machine from observing your breathing? WHY does your sleep doctor want to prevent the machine from changing the pressure continuously in reaction to the data that it is collecting about your breathing? Does your sleep doctor believe that there is something about your particular health that would cause an apap to do things which are not good for you in your particular circumstances? Or does your sleep doctor believe that there is something wrong with the science that is engineered into a modern apap machine? If it's the former, then that's good -- although it would be a lot better if she communicated better and could explain to you, at least in general terms, what she thinks the problem is. You DO have complicated health problems, after all. On the other hand, if she's a wacky control freak who doesn't like the idea of the machine changing the pressure without the doctor's permission, then I'd say RUN don't walk to another sleep doctor.

[perchancetodream7]

Sludge,

Thank you! I noticed the document comes from the Journal of Clinical Sleep Medicine--that is where I pulled all my studies from (to no avail because she has no interest in them). I am very glad to have this, but am afraid that she will turn her head away from it as she does with anything I present.

Sleeprider,
My Cflex is actually a Cflex+ but, for some reason, that machine will not post in my profile so I listed it as Cflex. I have my Cflex+ setting at the highest--3; I find that provides me with the least resistance on exhale. She bumped the pressure up to 14 two weeks ago because she didn't know what else to do. It was worse for me, I believe, so I set it back to 12 the other night.

CPAPIST,
Believe me, waking up every hour IS very bad because I do not fall back asleep quickly. My husband has OSA and if he awakens he will be out like a light again within maybe ten seconds. When I wake EVERY hour, I am not groggy. My eyes pop open and stay open for a while. It's awful. As for the Auto pressure settings, I don't know them--I was so tired yesterday that I looked at the script but forgot them before I could write them down when I got back to the car.

I have been going to a board certified pain management clinic since my two failed surgeries seventeen years ago. They just basically help you control pain through procedures like epidurals, trigger point injections, etc. That's where I had my morphine pump implanted.

Cathyf,
I am hoping the new machine will help. She's allowing me to try the Auto, but she doesn't think it will make a difference. Honestly, I believe she doesn't have other patients like me; I can understand that, though, because there are not a high number of sleep apnea patients who have chronic opioid use.

Sleep-disordered breathing is common, though, in chronic pain patients on opioids. According to my pain doc, the morphine is causing my centrals--basically, my brain is not telling my body to breathe.

Thanks to all who responded. I am glad to be part of this forum--without it, I would probably still have my old brick. ~Susan

[squid13]

According to my pain doc, the morphine is causing my centrals--basically, my brain is not telling my body to breathe.

I'm not an expert by any means but it looks to me like you should be using an ASV machine. Maybe your pain Doctor should tell her that.

[Wulfman...]

Is this the actual machine you're using?

Machine: PR System One REMstar Plus CPAP Machine with C-Flex

It's not data-capable.

If not, what's the actual model number on the bottom of the MACHINE? (don't turn it over with water in the HH tank attached)


Den

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