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Paper_Nanny wrote: Is the suggestion of replacing the other sleep aids with neurontin because it has sleepiness as a side effect or for a different reason?

I think she felt like it would be a good way to kill two birds with one stone -- insomnia and PLMD. While we don't know for sure whether the Mirapex is or is not helping my PLMD, we do know that my sleep is still somewhat weak right now. If the Neurontin helped (i.e., I slept more restfully), that might give some indirect indication that it was better addressing the PLMD. Or at least that's how I understood the logic.

BrianinTN, wishing you luck with these changes. I know you have been working hard at trying to get more restful sleep. I do understand that particular "journey".

Just from first blush, it sounds as if you have a good doctor there. Hopefully the Neurontin will work for you. But it's good to see that she wants to make changes in a controlled fashion. It can be tedious doing so, but it's the only certain way to ascertain what change made which difference.

Hang in there. I do know how frustrating it can be. You are doing wonderfully. You will (eventually) attain better sleep through your diligence.

This discussion has been interesting and relevant to my situation.

I just switched from a RemStar Bipap AutoSV to a RemStar Bipap AutoSV Advanced.

On the older AutoSV model, my apneas were nicely reduced and often there were no hypopneas (settings: EPAP 10, PSmin 2, PSmax 20, Backup rate OFF) compared to my PRS1 Auto CPAP (Pressure range set to 10.5 - 15, A-flex 3). With the older AutoSV, I fell asleep much easier and had fewer wake ups. However, I didn't wake up as refreshed as with my Auto CPAP. The older AutoSV is not able to adjust the EPAP throughout the night.

I have only had one night so far on the newer AutoSV Advanced model and to my surprise there were almost no apneas but there were so many hypopneas that my AHI was 9! My data similar to BrianinTN's on the opening post of this discussion.

The night was disruptive because I was testing a new mask (Swift FX) the first half of the night and switched back to my original full face mask (Quattro FX) the last half. I had tons of wake ups with air coming out of my mouth with the Swift FX. The data was about the same for each mask period. I'm not sure how I feel today (rested versus not) or what impact the many hypopneas had because of the mask issues.

I was hoping that BrianinTN would have the magic answer to this issue of increased hypoapneas with the AutoSV Advanced but it seems that we haven't come to a conclusion here. I'll report back in the coming days with my progress on the AutoSV Advanced. Though my AHI looked great (1 - 3) on the older AutoSV model, I didn't feel refreshed... I'm hoping things will work out better with the AutoSV Advanced!

Passiflora wrote: I was hoping that BrianinTN would have the magic answer to this issue of increased hypoapneas with the AutoSV Advanced but it seems that we haven't come to a conclusion here. I'll report back in the coming days with my progress on the AutoSV Advanced. Though my AHI looked great (1 - 3) on the older AutoSV model, I didn't feel refreshed... I'm hoping things will work out better with the AutoSV Advanced!

Hi Passiflora,
I have the same issue with many residual Hypopnea's. Can have almost no CA's or Obstructive's, but truckloads of Hypopnea's. AHI's can range from under 5. to 12. For some reason they are going up lately as well, had three 12. nights in a row, then a 3. then last night a 10. Have tried to nail down exactly *why* this fluctuates so much but just don't see any pattern at all. My RT say's she's done with me as far as adjusting the settings, and that's as good as it's going to get. Have tried on my own adjusting the Min Epap settings and Min pressure support settings, which either yielded no better results, or made things worse. Only thing I have figured out is if I can get off my back, and just sleep on my side, have almost zero events of any kind. As soon as I roll over on my back the fireworks start!! Have lower back issues, so sleeping on my side for too long is very uncomfortable.

If you can figure out any "magic bullet" to get rid of the hypopnea's let us know, would be very interested. Although as been pointed several times, with the ASV's it can take our bodies a long time to get used to them and see better results. Good Luck and keep us updated on your progress.

I've wondered if those hypopneas we see when using an ASV is a former apnea-in-the-making that was partially tackled by the machine and reduced to hypopnea status.

I wish I had an answer to all of this, but I'm still in the dark and have more or less given up for now. I stopped replying on the forums because I got sick of the misinformation being propagated by some and the trolling by others, but I do still check in from time to time.

To bring people up to date on my situation, I've seen Dr. Christian Guilleminault a couple times at the Stanford Sleep Medicine Center. For those unfamiliar with the players in the field, he's one of the 2-3 godfathers of sleep medicine. His belief is that I never should have been put on an ASV to begin with and that its very functionality promotes excessive CO2 retention, so he wanted to see me go back onto a straight CPAP. He also, in conjunction with Kasey Li, who's a famous sleep apnea surgeon, recommended surgery. Their take on things is that the surgery would allow me to use a lower pressure, but probably not remove the need for CPAP altogether.

To be clear, when we are talking about surgery in my context, we aren't talking about the old style UPPP where they ream out your palette. It's tonsillectomy plus a lingual tonsillectomy, which is substantially less invasive. The other component is nasal turbinate reduction via radio frequency waves. I have done the latter part, but have put off the big stuff for a variety of reasons. I haven't been able to tell much breathing difference from the nasal procedure, although that's to be expected.

I've gone back to using the APAP off and on (more off lately), and my results remain as confusing as ever. I was consistently getting medium AHI values (8-10ish on average) when allowing it to vary the pressure over a wide range (4-15). Restricting the pressure reduces my AHI on most nights by quite a bit (I opt for something like 4-7), but with so little air going through, I psychologically feel like I can't breathe sometimes, so I have to take it off. And even when I do wear it, I still feel more tired the next morning. At some point I should go in for another sleep study, but after nearly two years of fighting this, thousands of hours under the masks, and every doctor having a different diagnosis and treatment, my willingness to push forward is pretty low right now.

I realize the above update doesn't answer the reasons why this thread has resurged -- namely, the deal with residual hypopneas on an ASV device. I've come to believe these are pretty common on Respironics ASVs, based on the testimony of lots of people on these forums, and that it's unclear how problematic they actually are or what they represent. My own tinkering suggests that there's something about the "nudge" for breathing (dictated by the backup rate) that's related to the hypopneas....but I just don't have nearly enough empirical evidence to make that claim.

BrianinTN wrote: I realize the above update doesn't answer the reasons why this thread has resurged -- namely, the deal with residual hypopneas on an ASV device. I've come to believe these are pretty common on Respironics ASVs, based on the testimony of lots of people on these forums, and that it's unclear how problematic they actually are or what they represent. My own tinkering suggests that there's something about the "nudge" for breathing (dictated by the backup rate) that's related to the hypopneas....but I just don't have nearly enough empirical evidence to make that claim.

Thanks for the update. Very interesting. On my second night with the ASV Advanced I had very rhythmic clusters of hypopneas. I would have a bunch in a row and then none. This pattern repeated every 30-60 minutes. I thought maybe I was mouth breathing during the hypopnea-free periods but I have no idea. I have kept the backup rate OFF because I'm concerned about excessive pressures causing reflux if I'm trying to exhale and the machine is confused. This happened with the older model Respironics ASV as I was falling asleep. I had it on Auto backup rate and must have had a central apnea... suddenly I had this surge of pressure that woke me up completely... I was fighting the pressure to exhale and then I had some reflux in my throat.

The ASV Advanced injects pressure pulses to test whether the airway is open or closed. Sometimes these pulses cause me to inhale a little even though I do not want a backup rate. When I start to inhale, suddenly the minimum PS kicks in and the machine is encouraging a full breath.

Another thing I have noticed is that the ASV Advanced is much slower at increasing the PS than the older ASV model. When I try to get it to increase PS by taking shallow breaths, I start to feel like I'm suffocating before the PS goes up. With the older ASV model, it adjusted quickly and I wouldn't feel suffocated. Maybe the ASV Advanced is slow because it is looking at all of the tiny little waves generated by the test pressure pulses and calculating it's 95% target based on inappropriate data?

Maybe I should try a ResMed VPAP AdpatSV Enhanced?

As my neurologist explained it to me (and I've seen DeltaDave confirm it) the Respironics unit makes every effort to encourage you to breathe on your own. Thus, the pressure changes are not as large. Resmed steps in and acts much more quickly. However, that can lead to serious problems with leaking masks. Rather than trying another model, It's possible the EPAP minimum needs to be raised if you feel you are suffocating.

Just a thought.

JohnBFisher wrote:As my neurologist explained it to me (and I've seen DeltaDave confirm it) the Respironics unit makes every effort to encourage you to breathe on your own. Thus, the pressure changes are not as large. Resmed steps in and acts much more quickly. However, that can lead to serious problems with leaking masks. Rather than trying another model, It's possible the EPAP minimum needs to be raised if you feel you are suffocating.

Just a thought.

Yeah, I played around with that too. Higher EPAP minimums led to (statistically significant) higher AHI values, again predominantly hypopneas. MIght work well for Passiflora, though!

I've tried higher EPAP as well and while my AHI's remained low, the bottom dropped out on my PTB's, and I saw an increase in periodic breathing. Meaning I quit breathing more often with the higher EPAP settings.

BrianinTN wrote:(Dr. Christian Guilleminault's) belief is that I never should have been put on an ASV to begin with and that its very functionality promotes excessive CO2 retention

I would take exception to the word "excessive". When patient selection is appropriate in ASV, pCO2 "normalizes".

I have a couple of questions.

All that soda you consume-- is it caffeinated?

Your AHI was reportedly doing well with mirtazapine. What happened to that?

Your PSGs all showed REM suppression, probably from clonazepam, so I would not necessarily label them "stellar" (but not necessarily call them "non-stellar").

PLMs extend into REM. Very unusual. Lots of EMG activity there is suggestive of REM Behavior Disorder, but of course, the treatment for that is clonazepam.

BrianinTN wrote:Their take on things is that the surgery would allow me to use a lower pressure, but probably not remove the need for CPAP altogether.

Sounds pretty accurate (albeit noncommittal) to me.

A lot of the respiratory variation (like all that PB) could be caused by the PLMs. I imagine one could eventually engineer the waveform (and you'd probably need an ASV algorithm to do this) so that it wouldn't be classified as an event by the software, but it wouldn't correct the underlying cause (or, for that matter, make a difference in sleep quality).

That leg stuff-- have you checked your electrolytes lately?

"IMHO", it's your underlying sleep quality that's the issue, F/B PLMs/RLS (although the symptomology there is WAY too stong- check K+ level) and the SDB, where a junior xPAP attack should be sufficient (now that you have one, an ASV could be used as a "comfort measure", albeit a very expensive one, and essentially bypassing the entire ASV functionality).

deltadave wrote:(now that you have one, an ASV could be used as a "comfort measure", albeit a very expensive one, and essentially bypassing the entire ASV functionality).

However, this should not be construed as a variance from my original opinion in May 2007:

It will be interesting to see their definition of CompSAS, and one would expect that it would include central apneas. And also how they specifically define period breathing. Everybody is leaning towards persistent central apnea index (CAI) > 5 after treatment to define CompSAS, so I'm maintaining that if you have a central apnea index of "0" you don't have CompSAS, and if you don't have CompSAS or CSR, being put on an AdaptSV is a monumental waste of time and effort.

Upon further review, my main point may not have been entirely clear. Towards that goal, I might offer the following supplemental information:

YOU CAN'T FIX BAD SLEEP WITH A CPAP MACHINE!!!
YOU CAN'T FIX BAD SLEEP WITH A CPAP MACHINE!!!
YOU CAN'T FIX BAD SLEEP WITH A CPAP MACHINE!!!
YOU CAN'T FIX BAD SLEEP WITH A CPAP MACHINE!!!
YOU CAN'T FIX BAD SLEEP WITH A CPAP MACHINE!!!
YOU CAN'T FIX BAD SLEEP WITH A CPAP MACHINE!!!
YOU CAN'T FIX BAD SLEEP WITH A CPAP MACHINE!!!

Thank you.

deltadave wrote:

BrianinTN wrote:(Dr. Christian Guilleminault's) belief is that I never should have been put on an ASV to begin with and that its very functionality promotes excessive CO2 retention

I would take exception to the word "excessive". When patient selection is appropriate in ASV, pCO2 "normalizes".

His phrasing -- not mine. It may have been "too much." But it was definitely something along those lines.

deltadave wrote: All that soda you consume-- is it caffeinated?

Until very very recently, with resuming school, no.

deltadave wrote: Your AHI was reportedly doing well with mirtazapine. What happened to that?

Two things. First, that effect was seemingly temporary and went away after a couple weeks. Second, I just hated how sluggish I felt on the mirtazapine, so I'm not on it anymore.

deltadave wrote: Your PSGs all showed REM suppression, probably from clonazepam, so I would not necessarily label them "stellar" (but not necessarily call them "non-stellar").

I'm not quite sure why you say this. The klonopin was something I took pretty rarely and in small doses (usually 0.25-0.5mg). I did use it in two of the four sleep studies to try to get to sleep, but still in those low dosages.

deltadave wrote: That leg stuff-- have you checked your electrolytes lately?

Nope. Is there a specific test that you'd suggest I have run? Sounds like potassium from your next paragraph -- anything else?

deltadave wrote:Upon further review, my main point may not have been entirely clear. Towards that goal, I might offer the following supplemental information:

YOU CAN'T FIX BAD SLEEP WITH A CPAP MACHINE!!!

Then what else can I do? I really would welcome some input -- public or private -- because as I mentioned a couple posts ago, I've more or less given up.

BrianinTN wrote:His belief is that I never should have been put on an ASV to begin with and that its very functionality promotes excessive CO2 retention, so he wanted to see me go back onto a straight CPAP.

I've been wondering if that is the issue I've been having of very difficult wakeups and still having occasional morning headaches.