New and Better ASV Results

I have been on my ASV for about 9 months now and slowly improving.
My Tidal Volume averaged about 550 when I started, moved from 650 to 750 and now is hovering at about 800 mL.
Here is the most recent detailed report.

Note: Robysue, the insomnia demon visited last night. But not to be defeated, I took the time to boil 4 dozen eggs that will end up as deviled eggs for later in the week - take that demon!!! Catering a small get-together

Thanks to all for the encouragement and advice on how to live with this complex condition and very complicated machine.

Hi JDS. It doesn't sound like you are posing a question, but congratulations on getting a grip on the ASV beast and your TV boost My results with ASV are not dissimilar to yours... I had a long uphill struggle getting to work. It seems like every person who uses ASV is a test case and displays their own unique results and subsequent issues.

Congratulations on getting it figured out.
It seems I needed a chin strap to tame my ASV. The Higher pressures forced mouth leaks even when I did not notice them.

A surprising side benifit of the chin strap, My water chamber is no longer empty in the morning. It still has about 1/3 of the water left in it.

Every little detail trigers 2 more events, either positive or negative, Just like when walt Disney threw a ping pong ball into a room full of mouse traps with 2 or 3 ping pong balls loaded on each one. His explination of nuclear fission, which has stuck with me for almost 60 years.

Thanks for the comment.
The most interesting thing is the gradual increase in Tidal Volume over time.
When I started on this particular leg of this journey, I had (have??) a partially collapse lung.
I'm hoping that the ventilator mode pressure swings have managed to re-inflate it back to normal and that is what the Vt numbers really mean.

I also am starting on treatment for some pretty extensive damage to the interior of my knee as well as another (third time) try to control my PLMD at night. I'm hoping that these two treatments coming at the same time are contributing to the sudden increase in PTB% from an average of 80% (edit typo: change from 70% to 80%) to the 95% range for the last couple of days and the very low AHI values down from a range from 8-12 each night.

This whole process is very complicated and a struggle every day.
The folks on this board have been very helpful all during this time.

Hi JDS,
Congrats on your success!
Can you tell us a little more about your PLMD? What you've tried, what you're doing now?
Jay

I have been on ASV for about 1 month and have finally slept all night (after 15 months on xPap). I am experiencing similar successes as you, so I am very pleased to hear that you are doing so well. I hope you continue to improve!

Jay Aitchsee wrote:Hi JDS,
Congrats on your success!
Can you tell us a little more about your PLMD? What you've tried, what you're doing now?
Jay

Four years ago, was diagnosed with PLMD with a rate of about 31 per hour and maybe 3 arousals per hour.
Since it didn't actually wake me up, I just concentrated on getting treatment with my Auto BiPap machine and driving the AHI numbers down. Tried Pramipexole 0.125 about 18 months ago with no results. Late last summer my sleep doctor suggested an ASV titration which got me a scrip for my current machine. This time, the leg movements were more than 70 per hour and arousals doubling. That got my attention. So, my neurologist ( my sleep doctor sent me to the neurologist because treating PLMD for folks with peripheral neuropathy is different than for folks with plain PLMD ) suggested trying Pramipexole again in March of this year - again no result that I could see.

As a result of a fall in December and a broken bone in my foot, I ended up getting examined for knee pain in that leg and had an MRI this last weekend - lo and behold, lots of bad stuff in the knee that will eventually lead to surgery to fix it. Temporary first step in steroid injections to see if that will help. The pain is reduced.

At the same time, back at the neurologist I asked if increasing the dosage or changing to a different med would help.
so, as coincidence would have it, steroid injection in my knee to see if that would help and restarting Pramipexole all came together.

My theory is that the knee pain coupled with the PLMD kept giving me arousals that masked the effects of the PLMD meds and suppressing the pain lead to many fewer arousals and much better treatment numbers. If you have leg movements, so my theory goes, your breath rate becomes unstable and the ASV tries to fix that - PTB% drops. At the same time, again my theory, the same movements provide small changes in breath volume which get interpreted as hypopneas so the AHI goes up.

Stop the pain arousals, slow down the leg movement leading to breathing irregularities and the treatment suddenly looks good.

The most interesting part of this whole exercise is the change in tidal volume (Vt) that went from an average of 550 mL a year ago to close to 800 ml now. That is a 50% change in Vt. My theory again, is that the extensive breathing instability lead to a significant number of hours in ventilator mode ( one night it was 4 hours ) with the machine switching between 10 cm H2O and 25 cm H2O for all that time. I've been running at 30% ventilator breathing for 9 months now and, theory again, the part of my lung that was collapsed, got recruited back into functionality.

It seems to be just a coincidence that a cause of disturbed sleep (my knee) is quieting down at just the same time the PLMD med is now working.

I've known for a long time that pain can contribute to sleep disturbances and that for many people a Tylenol at bed time can improve sleep quality. I just didn't think the relatively low level of pain I feel in my knee would be enough to have this effect.

End of rambling on.

Thanks for your interest.

Well done JDS.
As far as I am aware I do not think I have problems with my lungs, but my tidal volume is in the 400s occasionally touching 500, but maybe a woman has a smaller tidal volume.

We are all learnings a lot from your posts and experimentation,thank you for all the effort you put into sharing it with us.

I too am slowly learning but at a much reduced rate

Just one question, I was just wondering how do you know when the machine is in ventilator mode? I have not been able to work that one out as yet.

Hi sleepinglass, haven't heard from you in a while.

Using Encore Pro, when the PTB% drops below 100%, its in ventilator mode.
So, look at the wave data and you will see a dot above the wave form that indicates a triggered breath. That's ventilator mode. Mostly one or two of those in a row doesn't mean much.
But, if you see lots of them - say 6 to 10 minutes or more, the machine is breathing for you.
My longest interval was over 2 hours in one stretch. I had one night where almost half of the 8 hours recorded was in this mode.

SleepyHead displays the data differently and it is less easy to see sequences like that. That's why I mostly use Encore but also have SleepyHead as well. Even it is more of a hassle to keep data in both, sometimes having both helps in looking at particular details.

Hope this rambling explanation helps. If not, I'll try to make a post with pics to better illustrate. Can't do it from my iPad - need to use desktop with PhotoShop to make the images legible.

Re: PLMD
Interesting, JDSS. Thanks.
I, too, have been diagnosed with PLMD and have tried most of the meds, including Mirapex, seemingly without positive results. But then, it's a little hard to tell, isn't it? Similarly, I have had some success with otc pain meds, most significantly Ibuprofen, but was concerned about its long term use so it was discontinued. Some of my drug trials were done before I had data access and perhaps before I really had my SDB under control so any positive effects on PLMD may have been masked by uncontrolled respiratory issues. Again, somewhat similar to your situation. Maybe it's time I give the meds another try.
Thanks again,
Jay

For this trial, my neurologist has agreed to schedule another sleep study to actually measure the changes in PLMD movements. I suggested, and he agreed, that I would use my ASV machine for the breathing part and the electrodes for the measurement part to make the study as much like my home environment as possible.

Have you had any additional sleep studies to actually measure the progress?
With complex interactions between SDB, pain, and PLMD, my feeling is that the available data coming out of the machine is indicative but not diagnostic, hence the new sleep study to measure the results.

If you don't have gross motions, then the electrode measurement is the only way to get to what is actually going on.
If your motions are gross in nature, then you could try making a video of your sleep at night and see if that gives you enough information. I looked at the video from my sleep study and I couldn't see any of the PLMD activity the system measured - my doc described it as twitching not big movements. Enough to screw things up, not enough to see on the video.

I have other issues with disturbed sleep. Last night I was fully awake 5 times totally unrelated to any apnea or PLMD issues. Waking that often screws up the stats somewhat. Been looking for a definitive diagnosis for that condition for 10 years now. The hunt goes on

JDS, I have been quietly following, desperately trying to learn.

Thank you for that information, I had no idea, despite all my reading! Now I get it!
I use both SH and other to record my data daily, because I am very curious and intrigued.

So if I have understood correctly, I have not been looking but found a day where my percentage of average triggered breaths was 74 presumably then, the rest of the time, the ASV kicked in. On that particular night there were loads of timed breaths, many uninterrupted lines of dots. I am amazed that I do not feel the timed breaths whilst sleeping or ever wake up. I never struggle breathing with the machine, unlike when I was on on straight bipap. ASV just seems to happily follow my breaths quietly in the background even when it has to ramp things up quite a bit.

I am still questioning this lovely machine and still wondering if I actually need it, despite feeling much better?

Another burning question I have, but I suppose there is no way of us ever finding out is, if someone without any 'sleep issues' used the ASV if they too would have the same results? Is it all a natural part of sleep, so that they too would also have lots of timed breaths like us?

The other question is, if everybody's % of patient triggered breaths drop naturally, during the night? Again is that a natural part of the sleep process?
I wonder if these questions have been asked before or am I just being weird for wondering?

JDS74 wrote:If you don't have gross motions, then the electrode measurement is the only way to get to what is actually going on.If your motions are gross in nature, then you could try making a video of your sleep at night and see if that gives you enough information. I looked at the video from my sleep study and I couldn't see any of the PLMD activity the system measured - my doc described it as twitching not big movements. Enough to screw things up, not enough to see on the video.

I do have gross motions. Done the video (see links in my signature) and have a Zeo. Problem is, even with gross motion and a ZEO, the Zeo is not capable of determining micro arousals so medication efficacy can't truly be determined and It's difficult to tell from the video how much movement decreases, if at all. I was going to devise a counter I could wear to see if the number of leg moments decreased with meds, but I never got around to it. My next step, like yours, is another sleep study which replicates home conditions as much as possible to try to pin point non-respiratory arousals. I'm hoping to have it done in August or September.

sleepinglass,

If your PTB% drops to 74%, you need the machine.
Normal, non-apnea patients do sometimes stop breathing at night. But not very often and not for very long.
For example, during the transition between being awake and being asleep, your breath control mechanism switches between blood oxygen as a control and blood carbon dioxide as a control. It does happen that these trigger points are not exactly in synch. So for a little while, you don't get the command to take a breath. That is called a false central apnea and only an instrumented sleep lab can tell for sure.

Look at your Encore wave data and see if you can see a pattern in which the breathing wave line is a little higher just before one or two of the triggered breath dots and a little lower and more regular just after. For me, that's how one of these shows up. But without the EEG data you can't be actually sure.

Now look until you see just one or perhaps two trigger dots all by themselves. When you roll over or make some movement while sleeping, it is very common to just stop breathing while the movement is going on. Its perfectly normal and voluntary. But the ASV machine is so sensitive, it will try to correct this as well.

For a normal, non-apnea patient, then you could see several of these during the night and it would be meaningless. The clue would be that the PTB% would be very high, I suspect (my theory here) that the number would exceed 99% in those circumstances. Remember "normal" is an AHI of less than 5 per hour without treatment.

Jay Aitchsee wrote:I do have gross motions. Done the video (see links in my signature) and have a Zeo. Problem is, even with gross motion and a ZEO, the Zeo is not capable of determining micro arousals so medication efficacy can't truly be determined and It's difficult to tell from the video how much movement decreases, if at all. I was going to devise a counter I could wear to see if the number of leg moments decreased with meds, but I never got around to it. My next step, like yours, is another sleep study which replicates home conditions as much as possible to try to pin point non-respiratory arousals. I'm hoping to have it done in August or September.

Have you asked your doc if you can use your home machine during the study as you will not be looking for SDB stuff but PLMD stuff only. My doc thinks that to be a good idea.

When I get my study done in August (as well), I plan to give a complete printout to the sleep center so their records can be complete. My center uses ResMed equipment so they don't have the capability of generating reports from my SD card. If your center uses ResMed, perhaps they will be happy to just get the data from your card.