CPAPtalk.com

After 2 months of futzing with my settings, using painful devices to stay off my back, being awake half the nite, being discouraged because nothing seemed to help, I was finally able to see my doctor this morning. The DME was supposed to have sent her my data a week or so ago, but since they still haven't sent me my card back I knew something wasn't right so I brought my laptop with me so I could show her my SleepyHead graphs. Good thing I did, she still hasn't gotten the latest report from the DMS yet.

So, after talking through things and looking at my data, she thinks I may need an ASV. Good, but potentially expensive news. She's ordering me another sleep study. 1/2 night BiPap and half nite ASV. I guess we'll see what happens from there. While I'm not thrilled with the idea of another study, or the expense of the machine (I have a very,very high deductible which I haven't even started to rack up yet for this year) I am glad to have a new direction to go in since things really aren't working all that well as is.

Thank goodness for SleepyHead, it was very helpful to have all that data right there with me.

Time to read up on ASV, and oh yeah, call my DME and find what they did with my card.

Hi Tomma,

That is great you are getting some direction although it stinks the news is expensive.

Since your situation sounds somewhat similar to mine, I am curious as to whether you had centrals? I tried searching your posts but didn't see indication that you did.

Ah, the joys of DMEs One advantage of not having health insurance.

By the way, for various reasons my experiment didn't work last night. But in limited time trials, I have noticed that if I sleep on my side, the pressure stays at 5 at a sub 2 AHI without the neck collar that I need when sleeping on my back

49er

tomma wrote:After 2 months of futzing with my settings, using painful devices to stay off my back, being awake half the nite, being discouraged because nothing seemed to help, I was finally able to see my doctor this morning. The DME was supposed to have sent her my data a week or so ago, but since they still haven't sent me my card back I knew something wasn't right so I brought my laptop with me so I could show her my SleepyHead graphs. Good thing I did, she still hasn't gotten the latest report from the DMS yet.

So, after talking through things and looking at my data, she thinks I may need an ASV. Good, but potentially expensive news. She's ordering me another sleep study. 1/2 night BiPap and half nite ASV. I guess we'll see what happens from there. While I'm not thrilled with the idea of another study, or the expense of the machine (I have a very,very high deductible which I haven't even started to rack up yet for this year) I am glad to have a new direction to go in since things really aren't working all that well as is.

Thank goodness for SleepyHead, it was very helpful to have all that data right there with me.

Time to read up on ASV, and oh yeah, call my DME and find what they did with my card.

49er wrote:Hi Tomma,


Since your situation sounds somewhat similar to mine, I am curious as to whether you had centrals? I tried searching your posts but didn't see indication that you did.

Ah, the joys of DMEs One advantage of not having health insurance.

By the way, for various reasons my experiment didn't work last night. But in limited time trials, I have noticed that if I sleep on my side, the pressure stays at 5 at a sub 2 AHI without the neck collar that I need when sleeping on my back

49er

Yes, I'm stilling having quite a few centrals every night. That was her main concern, even though I finally got the AHI down closer to what it should be (a little over 3 right now), what was left was mostly centrals. Going back through my history over the past couple months we could see that even with all the pressure changes I've tried out, the centrals were still always there.

tomma wrote:

49er wrote:Hi Tomma,


Since your situation sounds somewhat similar to mine, I am curious as to whether you had centrals? I tried searching your posts but didn't see indication that you did.

Ah, the joys of DMEs One advantage of not having health insurance.

By the way, for various reasons my experiment didn't work last night. But in limited time trials, I have noticed that if I sleep on my side, the pressure stays at 5 at a sub 2 AHI without the neck collar that I need when sleeping on my back

49er

Yes, I'm stilling having quite a few centrals every night. That was her main concern, even though I finally got the AHI down closer to what it should be (a little over 3 right now), what was left was mostly centrals. Going back through my history over the past couple months we could see that even with all the pressure changes I've tried out, the centrals were still always there.

Thanks Tomma for letting me know.

Good luck with the titration.

49er

I seem to remember you are having trouble not sleeping in your preferred back position, and trying to sleep on your sides,right? So is it possible those centrals are being caused by restlessness, lots of turning,tossing? I know in my husband's case if he's too cold, too warm, dreaming,etc, he will have CAs show up on his data on nights like those. I'm pretty sure from my own observations that he's doing a lot of breath-holding and other "stuff" when he's that restless.

DoriC wrote:I seem to remember you are having trouble not sleeping in your preferred back position, and trying to sleep on your sides,right? So is it possible those centrals are being caused by restlessness, lots of turning,tossing? I know in my husband's case if he's too cold, too warm, dreaming,etc, he will have CAs show up on his data on nights like those. I'm pretty sure from my own observations that he's doing a lot of breath-holding and other "stuff" when he's that restless.

Yes, that's me.

I suppose restlessness is possible, although as I look back through the data over the past couple months, I see alot of centrals even before I started trying to keep off my back. I always just kind of thought they were due to too high pressure, or just plain false readings. I went over all that with the doc today and she seemed pretty convinced they were real, or that there's at least enough question to warrant another study.

I hate going to the sleep clinic, I figured I was all done last time I went, but in a way I'm kind of looking forward to it so I can finally (hopefully) make all this work.

Just my luck I started with a new insurance carrier this year (UHC) who my doc says is not the easiest to work with.

tomma wrote:I'm stilling having quite a few centrals every night.

Tomma,

BiPAP machines can often do a good job treating someone who has pressure induced centrals. The issue in this case is a catch-22 situation...the pressure that is high enough to keep your airway open turns out to be higher than your threshold for having centrals. A BiPAP can be set to use a much lower pressure on exhale, which still keeps your airway open, but is lower than your threshold for centrals. BiPAP machines are more expensive, maybe double what a traditional CPAP machine costs, whereas an ASV can run $5,000.

The good news here is that your issue appears to be understood, there appears to be workable treatments, and you have a plan for moving forward. That is no small victory all by itself. Good job on sticking with it to get this far.

-john-

Thanks for the info and encouraging words jweeks.

I'm hoping the BiPap does the trick, but I guess either way at least I should have better results than my current setup. One thing I'm just a little worried about, at my first titration study back a few months ago I slept a grand total of 1 hour. I'm sure this time I'll do better since I'm now used to the mask etc, but, I do distinctly remember at one point during the night sensing something had changed, something odd about the way the machine was acting. At the time I had no idea what it was, I just remember it being very odd, like the machine was trying to breath for me or something. Looking at those results yesterday with the doc, it was because they switched me over to Bipap for a while that night.

So, we'll see, hopefully now that I'm used to all this and understand it better it won't be as bad.

After 3 weeks of phone calls with the doctor, the sleep clinic and insurance, my split night study is complete as of a couple nights ago.

What a horrible night. I just could not stay asleep. Between the strange surroundings, the wires all over me, changing modes from Bilevel to ASV etc etc. I thought for sure I was going to have to come back and try again. In the morning the tech said something like, 'not sure we got enough data, if we did, it was just barely'

As it turns out I guess the PAP gods we watching out for me. My sleep doc's office just called and told me they're prescribing an Adapt SV. I should be hearing from my DME within the next few days.

The thought of having to learn how to sleep with this thing is a little scary I guess, but the thought of actually sleeping far outweighs it.

So, here we go again........hopefully I'll have better results this time.

tomma wrote: Just my luck I started with a new insurance carrier this year (UHC) who my doc says is not the easiest to work with.

I had UHC when I got my CPAP stuff, and they just paid for it, no rental, no dispute. So they were fine from my end. I don't know what the DME and doctor will have to deal with, though, they may pay less than the DME and doctor would like.

tomma wrote:What a horrible night. I just could not stay asleep. Between the strange surroundings, the wires all over me, changing modes from Bilevel to ASV etc etc.

Hi,

This is good news. It is nice to have a plan, and that gives hope for a solution. BiPAP is a piece of cake. I haven't used an ASV, but I don't see that being that much more difficult from a user point of view.

BTW, I had a sleep study like that were I thought I was awake all night. It turns out that you remember being awake, but don't remember being asleep. So while I thought I was awake most of the night, I actually got 5 hours of sleep. I was really surprised by that.

On my most recent sleep study, I even took a sleeping pill, and even that didn't help me get any more sleep. OSA must be a pretty tough thing to sleep through.

-john-

Man, talk about disillusioned!!!

Last night was my first night with my new Respironics DS950. My numbers are virtually unchanged, same AHI (12.1), same number of CA's, OA's and Hypopneas. Actually the CA's were higher than normal. I know it's only been one night, but I should have seen some difference!

I did feel like I slept better, and I actually slept around 90 minutes longer than usual, so I guess that's good. My settings right now are:

Max Pressure 25
EPAP Min and Max are both 14
PS Min = 3
PS Max = 10

Any words of wisdom, suggestions, a rope?

Thanks

Hmmm, I wonder if I have bad data here. When I load the data to SleepyHead it shows an AHI of 1,700. In Encore Basic it shows a little more realistic number of around 12, but it also says I only used it for something like 2 hours, instead of the 7 I actually did. On top of that when I view the data on the machine, it shows an AHI of 0.

I keep coming back to the fact that I feel better than usual and slept longer than usual. If the data I'm seeing were accurate I don't think that would be the case, would it?

Signed,

Confused but rested.

tomma wrote: I wonder if I have bad data here. When I load the data to SleepyHead it shows an AHI of 1,700.

Yeah, SleepyHead doesn't appear to be working with your machine.
Try the Patch file....just in case it helps...if not SH isn't going to work for you.
Remember...some of the PR S1 ASV machines it worked fine and some it didn't and we have no idea why.

I suggest you change your subject line to something like "new ASV..have questions"....get the ASV in the subject line to hopefully get the attention of the few members here with experience with your type of machine...SWS, JohnBFisher or DeltaDave's alias.

Pugsy wrote:

tomma wrote: I wonder if I have bad data here. When I load the data to SleepyHead it shows an AHI of 1,700.

Yeah, SleepyHead doesn't appear to be working with your machine.
Try the Patch file....just in case it helps...if not SH isn't going to work for you.
Remember...some of the PR S1 ASV machines it worked fine and some it didn't and we have no idea why.

Pugsy, I was looking at the files on my SD card this morning and realized there were some files from 2/2012 on it that had some really weird data on it, no graphs, AHI of 1700 and the like, that's what SH was showing me the first time I tried it. Now that I have a few days on the card I decided to try SleepyHead again, once I got rid of that old data SH worked just fine. So, just an FYI, SH is working with my 950.