One Year Anniversary and Perplexed

[Spy Car]

Spy Car, if we were trying to resolve hypopnea, I'd be very supportive of the idea that a bilevel might help.  If you want to resolve CA, the correct machine is an ASV.  In your case you are probably marginal for getting insurance coverage of ASV due to low events, but i'm confident that if you had it, your events would be near zero.  

The trial of the Aircurve 10 will be interesting, but I agree with Walla Walla that pressure support is more likely to increase central events.  Anyway, the bilevel works to maintain your EPAP to prevent obstructive events, then can apply pressure support for hypopnea, flow limitations and other inspiratory obstructive events.  I will be interested to see the difference (if any) in how it responds to your needs.

I guess it can't hurt to try. I just have not seen much (if any) quality of life improvements (other than a suppression of snoring, which is great for my wife) and that has been disappointing.

Bill

[Sleeprider]

Bill, regardless of how this trial works out there is hope. Recently several member report a big change using 02 supplement with CPAP, and we can help you find and get setup on ASV which will resolve all these events. As I said, you won't get it through insurance, but I have gotten people in need connected at an affordable cost. Sometimes the "numbers" on AHI don't tell the whole story, and I think you probably need some relief that normal CPAP and bilevel may not offer.

[Spy Car]

Bill, regardless of how this trial works out there is hope.  Recently several member report a big change using 02 supplement with CPAP, and we can help you find and get setup on ASV which will resolve all these events.  As I said, you won't get it through insurance, but I have gotten people in need connected at an affordable cost.  Sometimes the "numbers" on AHI don't tell the whole story, and I think you probably need some relief that normal CPAP and bilevel may not offer.

Thank you for your offer of support. Over my year long journey I've read this forum almost daily and have been deeply impressed with your knowledge and kindness helping others.

I just (finally) had an appointment with a sleep doctor. He is said to be excellent and was until recently with Stanford. He seems willing to work with me and it was he who suggested we either try the bilevel or do an in house study (I only had a home study). 

I have a window between now and Wednesday (when I get the bilevel) to ask any questions. Should I ask for a PulseOx, or something else? Should I push for a real sleep study?

I am very motivated to be one of the success stories, but thus far the results of therapy have been  disappointing. 

Thank you for all the support you offer to so many. Greatly appreciated!

Bill

[Sleeprider]

I have no idea how he intends to setup the bilevel. I'd say let him do his thing and give it your best shot. Your job is easy...sleep as best you can. The problem of disrupted sleep and central apnea will probably be there, and if not, you win. If the problem continues on bilevel, then that would be the time to discuss the feasibility of ASV titration or evaluation.

I'm sure if your doctor is interested in seeing recorded oximetry, he can arrange that. Your doctor can consider your history, failure to tolerate CPAP, and other issues to give you his best opinion on how to proceed. That is preferable to going out on your own at this point. Let's take this one step at a time and give it a fair chance. If you have question as you go through the evaluation I'll try to give you an answer that is fair to you and the doctor. As long as he is working with you, I'm not going to interfere with that avenue of progress. If it dead-ends, then I might have some suggestions on where to go with that. The objectives here are really simple; get a good night of sleep consistently with PAP results that support your good health and help you feel rested. No miracles, just some good sleep.

[Spy Car]

I have no idea how he intends to setup the bilevel. I'd say let him do his thing and give it your best shot.  Your job is easy...sleep as best you can.  The problem of disrupted sleep and central apnea will probably be there, and if not, you win.  If the problem continues on bilevel, then that would be the time to discuss the feasibility of ASV titration or evaluation.  

I'm sure if your doctor is interested in seeing recorded oximetry, he can arrange that.  Your doctor can consider your history, failure to tolerate CPAP, and other issues to give you his best opinion on how to proceed.  That is preferable to going out on your own at this point.   Let's take this one step at a time and give it a fair chance.  If you have question as you go through the evaluation I'll try to give you an answer that is fair to you and the doctor.  As long as he is working with you, I'm not going to interfere with that avenue of progress.  If it dead-ends, then I might have some suggestions on where to go with that.  The objectives here are really simple; get a good night of sleep consistently with PAP results that support your good health and help you feel rested.  No miracles, just some good sleep.

He mentioned setting up the bi-level machine to Epap 6 and Ipap of 13 with a pressure support of 4. He also mentioned that it was possible that I might change the settings since it was done exactly the same way as with my machine. 

I am hopeful that this physician will work in my best interests. However, I'm realistic about how heavy his case-load must be and that if I am not self-advocating that my case will get lost in the cracks. KWIM?

So any good ideas you care to share will only help me help the doctor in keeping my case on track. My being passive won't help me. Constructive engagement is key here.

Bill

[SarcasticDave94]

Spy Car / Bill,

Best to ya on getting the assist you need. Hope PSG/sleep study goes well and you get the machine you need. FWIW guys, that chart of Bill's looks similar to my BiPap chart except my AHI was in the 20's I think. And you know what I ended up on.

Great evening all,
Dave B.

[Sleeprider]

Go with his suggestion the first night and let's see where that takes us. His proposal is actually an auto bilevel suggestion and is just fine. The increased pressure support will give us some indication of how you respond to the greater PS. I actually don't expect your pressure to rise much.

Looking back through your posts, you don't have an extraordinarily high AHI, your respirator rate, tidal volume, I:E ratio are all normal (good). You have had event rates as low as .5 (11/17/16), which showed you're capable of very good results with low leaks and minimal events, flow limits etc at a pressure from 10/8 to 16/14 with EPR 2 http://www.apneaboard.com/forums/Thread-...#pid182514 At that time you suggested you were going back to EPR 3, but your results with that higher EPR were consistently worse http://www.apneaboard.com/forums/Thread-...#pid186661

One thing we don't have from you is a close up of your respiratory flow chart. It might help to see that so we know the shape and timing of your respiration a bit better. Also, let's get a look at your Statistics page with prescription history. Please use the "huge thumbnail" option on Imgur. For some reason your images are kind of small and low resolution. While your event rate is not very high you seem troubled by chronic fatigue. I'm not sure we can attribute all of that to your CPAP therapy, but we'll do our best to optimize.

[Spy Car]

Go with his suggestion the first night and let's see where that takes us.  His proposal is actually an auto bilevel suggestion and is just fine.  The increased pressure support will give us some indication of how you respond to the greater PS.  I actually don't expect your pressure to rise much.  

Looking back through your posts, you don't have an extraordinarily high AHI, your respirator rate, tidal volume, I:E ratio are all normal (good).  You have had event rates as low as .5 (11/17/16), which showed you're capable of very good results with low leaks and minimal events, flow limits etc at a pressure from 10/8 to 16/14 with EPR 2 http://www.apneaboard.com/forums/Thread-...#pid182514  At that time you suggested you were going back to EPR 3, but your results with that higher EPR were consistently worse http://www.apneaboard.com/forums/Thread-...#pid186661  

One thing we don't have from you is a close up of your respiratory flow chart.  It might help to see that so we know the shape and timing of your respiration a bit better.  Also, let's get a look at your Statistics page with prescription history.  Please use the "huge thumbnail" option on Imgur.  For some reason your images are kind of small and low resolution.  While your event rate is not very high you seem troubled by chronic fatigue.  I'm not sure we can attribute all of that to your CPAP therapy, but we'll do our best to optimize.

I'm attaching last night's Sleepyhead results and the requested Statistics page. You will be able to see my results have worsened in recent weeks.

I hope I have resolved the low-resolution image problem. I'd been using a third party "Grab" software instead of F12 on Sleephead. I used "Original" on Imgur rather than "Huge Thumbnail," please let me know if that was an error.

As to chronic fatigue, when I was 26 (33 years ago) I was slammed out of the blue with a debilitating viral-like condition that was poorly understood as "yuppie-flu" and came to be seen as Chronic Fatigue Syndrome. After many months in bed completely de-habilitated, I crawled out and resolved to have a life with-in my limits.

With-in CFS patients I'd be considered a success story. I resumed a demanding career, met a beautiful and intelligent woman who became my wife, bought a lovely home, and we have a very fine son who just turned 13. The struggle with fatigue never went away, but I'm tough, have lived well, and have been lucky I've been able to manage it for the most part.

In the past two years my health began going south. Fatigue that was "manageable," became de-habilitating once again. Not as bad as the initial "viral" stage of CFS, but my quality of life was unraveling. About the same time we got more "user-friendly" employer provided insurance vs the high-deductible self insurance that I paid a lot for (but was afraid to use).

Some non-CFS "fatigue related" issues cropped up. Testosterone was low, so I fought successfully for TRT (which has helped a lot). Thyroid was also low (low normal) and I'm taking Levothyroxine (still trying to optimize dose). Also supplementing Vitamin D and B12, which were low. 

And I was diagnosed with sleep apnea. I started with my machine a little over a year ago, and had been doing better.

I do not expect APAP therapy to be a "cure all" for my fatigue issues. I'm happy to feel a marginal improvement that makes the difference between feeling functional, and not. Good sleep makes all the difference for me.

On the occasions I've reduced the EPR I have not done well the next day. Even during periods where I've left the setting alone the daily "Christmas tree lights" of my events has looked very different day to day. To my untrained eyes, it looks like random charts most of the time. But CA events have averaged about 40% and that has increased lately. I associate CAs with feeling poorly the next day.

I can't tell you how much I appreciate the help. My family needs me and I feel like I'm letting them down. I am 100% committed to staying with my machine (or another). I am a little discouraged that after a time when I felt benefits, that I'm in decline.

I'm attaching 2 charts. If there is a section of last night's (or other night's) charts you'd like to see blown up for respiratory flow, please advise and I will happily provide.

I'm very grateful for the help. I need it!

Bill

 

[Spy Car]

As a quick update, I was at my medical group today getting blood work, so I dropped into the Slep Apnea department and spoke with a Tech about my diminished results and asked about the possibility of an Oximeter, and mentioned increasing CA events.

The Tech (who also has sleep apnea) put one of the ResMed probes on the order for next week. Then he asked how I knew my percentage of CA events was up? So I turned him on to Sleepyhead, which he'd never heard of, and he was really pleased to have a new tool for himself.

Never hurts to be a helpful patient, rather than a nuisance. He also strongly suggested a real in-house sleep study after the bi-level where I can try an ASV if the bi-level is not the ticket.

One step at a time.

Bill

[SarcasticDave94]

It certainly never hurts us to have a medical tech on our side, especially another apnea sufferer. My Apria RT is CPAP user too and it does make a difference. Keep up the progress.