No Answers Yet For Problems With ASV

Paper_Nanny wrote: I need to go to my appointment on Tuesday with no bad attitude.

Any update on how this went?

BrianinTN wrote:

Paper_Nanny wrote: I need to go to my appointment on Tuesday with no bad attitude.

Any update on how this went?

The appointment went really well. I did manage to shed my residual bad attitude and go into the appointment with an open mind. The physician I saw yesterday- let's call him OSD, for "Other Sleep Doctor"- was very well informed, listened to what I had to say, was interested in what was going on, and had some suggestions about where to go from here. He also allowed me to ask as many questions as I wanted without making it seem like I was asking too many. He said he appreciated me being so well prepared for my appointment, so involved in my care, and so well informed about my sleep issues. Rather a different attitude than MSD's.

First, with regard to the xyrem, he said xyrem really doesn't do anything to restore normal sleep architecture. Also, there is no way it would be covered by my insurance plan unless I have a definitive diagnosis of narcolepsy, which I have no reason to believe applies. So, I won't be adding that medication to my regime. He did suggest trying amber glasses to filter out the blue (?) wavelength light as well as some low dose (0.5 mg) melatonin in the evenings.

The previous studies show that I go into REM only after hours of sleeping and never get into stage 4 sleep. He is thinking that maybe if I get to my first REM earlier, then I might get into the deeper stages before the night is over and that could result in a more normalized architecture. And if it doesn't work, well then, it doesn't work. He disagreed with what my rheumatologist had said about REM deprivation causing hallucinations. OSD said it is deprivation of sleep itself that causes that. Research is a little sketchy on what happens when people are deprived of particular stages of sleep. He said that holds true with regards to stage 4 sleep and fibromyalgia symptoms also.

He had many of the same questions that have been already raised about my initial sleep study and the titration. Why wasn't CPAP tried initially? Why was the titration so aggressive? What was happening to my CO2 levels when my O2 levels were dropping? He was a bit concerned with my O2 stats in general during the previous studies. My awake sats are right around 98- 100%. He said he would expect to see no more than a few points difference when I was asleep, not the more significantly lower levels shown during the studies. Depending on what was going on with that, maybe CPAP with some supplemental O2 would be more appropriate than any form of BiPAP.

He said he really wonders about the hypopneas shown during the studies and also the residual ones while I have been on therapy. He is wondering if there is a volume issue, possibly from the ms, possibly for other reasons, in which case an AVAPS would be the more appropriate treatment.

I am scheduled for another titration study on the 19 September. He said between now and then, he will have a chance to look over the data from my other two studies as well as the downloads from my machine cards, and may have some additional thoughts on what he wants to find out based on that.

It was refreshing to be talking to a physician who is interested in the details of my specific issues, in optimizing my treatment, and in having me as involved as possible in the process.

I think that about sums everything up. I don't have any of my notes with me just now, so I may have missed something. If so, I can add it later. Or if there are any questions about anything, I can try to answer those.

Deborah

It sounds like you have found a great sleep doc. YEA!!!!!!!!!!!!!

Paper_Nanny wrote:The appointment went really well. I did manage to shed my residual bad attitude and go into the appointment with an open mind. The physician I saw yesterday- let's call him OSD, for "Other Sleep Doctor"- was very well informed, listened to what I had to say, was interested in what was going on, and had some suggestions about where to go from here. He also allowed me to ask as many questions as I wanted without making it seem like I was asking too many. He said he appreciated me being so well prepared for my appointment, so involved in my care, and so well informed about my sleep issues. Rather a different attitude than MSD's.

Hooray!!!!

Paper_Nanny wrote:He had many of the same questions that have been already raised about my initial sleep study and the titration. Why wasn't CPAP tried initially? Why was the titration so aggressive?

Good for him!!!!!!

Paper_Nanny wrote:I am scheduled for another titration study on the 19 September. He said between now and then, he will have a chance to look over the data from my other two studies as well as the downloads from my machine cards, and may have some additional thoughts on what he wants to find out based on that.

More "hoorays!!" for him.

Paper_Nanny wrote:It was refreshing to be talking to a physician who is interested in the details of my specific issues, in optimizing my treatment, and in having me as involved as possible in the process.

Sounds like you've found a real keeper, Deborah. So happy to hear all that you said about him and what he said. A "good'un."

This is my first time i visit here. I found so many entertaining stuff in your blog, especially its discussion. From the tons of comments on your articles, I guess I am not the only one having all the leisure here! Keep up the good work.

I thought I would post the end to this long story. I had my titration study done in mid September. The tech gave me a hard time about my mask. I use the FitLife Total Face Mask. He kept trying to convince me that there are better masks out there and I don't need to use such a large, cumbersome mask. I finally convinced him to drop it. My DME provider has been awesome about letting me try different masks and I do love the FitLife.

My REM sleep was less delayed than during previous studies. I have no idea why. Just one of those things... During the study, my oxygen and CO2 levels were monitored. Both were excellent. I was titrated on CPAP, CPAP with O2, BiPAP, and AVAPS. I did the best on BiPAP.

The prescription I was sent home with was for EPAP min of 7, max of 9; min pressure support of 2 max of 4; back up rate of 5 bpm. During the study, they noted that I breathe more slowly than most people.

My AHI at home using those settings has been pretty good. Most of the time, it is below 5. Sometimes it is a bit above. The highest it has been is 9.2. The lowest is 2.9.

One interesting thing the doctor pointed out was the heart rate line on the graph. He said normally, there is a fair amount of variability in the heart rate. Mine had way less than the normal amount. He said that it was clear my heart wasn't being paced by the pacemaker, because when that happens, the line is nice and straight, like it was drawn with a pencil. So, whatever lesion in my brain messed with my heart rhythm in the first place is messing with it enough now for it to show up on the sleep study heart monitoring.

So, that is the end of my story about the ASV. I had a very thorough titration study which gave good and useful information to determine what the best therapy for me would be. And I do believe the settings I am currently on are good.

Thank you to all who journeyed through this thread with me, offering advice and assistance, friendly support, and comic relief as I slogged my way through this mess. I hope that my troubles will shed some light on someone else's problems down the road and someone will benefit from hearing about my experience.

Deborah

It is great to hear your settings now meet your needs. It is also great go hear you are doing well. Thank you for so clearly communicating your journey. We all learned as you went on this adventure. Thank you for sharing.

Deborah, I have been wondering for some time how you were doing. Its good to know you are doing better now. You sure seem to have found a better doctor in OSD. Thank you for sharing your story with all of us.

Deborah, so happy to hear that the titration went well and that your therapy is going well. And comfortably!

The FF mask you're using, the Respironics "FitLife Total Face" mask is one I like, although I rarely have to use a FF mask. Weird as it looks, it's more comfortable for me than any FF or "hybrid" style FF mask ever was.

Hope you continue to get good breathin' sleep.

Do please keep posting here any time you can. You're the dog's sneakers in my book, you know!