Bilevel machine - advice needed

[Kosoku]

Don't know if this is applicable here or not, but I had really good results for getting rid of CA's when I set the Trigger to very high from Med. Again not sure if this scenario is applicable, but might be worth a shot for a night.

[Sleeprider]

What we actually did was put you on 12/8 (PS 4) fixed pressure. Nice! The good news is we disproved both EPAP 12 and PS 6 and got good comfort and no loss of tidal volume. Basically by dropping the pressure support to 4, we killed off about 20 CA per hour, but let a few OA in with the low EPAP of 8.0. Sorry for the deceptive approach, but this confirms the PS of 6 is the problem, and an EPAP of 8 is not so bad for obstruction. So if this felt good, then we can try Vauto with EPAP min 8.0, PS 4.0 and max IPAP pressure of 18. I think you will continue to see improved CAI and improved OAI when we allow EPAP to rise a bit.

Just to clarify...it was the treatment causing the problem.

[Sleeprider]

I want to get back to this for just a moment. The results you have do not mean that ASV may not be a good idea, but it must be a tremendous relief to have fewer events while you're waiting for the nest test and ASV approval. If your doctor and you want PS 6.0, then you will definitely need the ASV. For now, I'd like to encourage you to stay with PS 4, EPAP min 8.0, EPAP max 12 (maximum pressure 16). There is no reason to suffer with the 20+ AHI, when we can make you more comfortable, and meet most of your therapy goals.

[LookingForward]

What we actually did was put you on 12/8 (PS 4) fixed pressure.  Nice!  The good news is we disproved both EPAP 12 and PS 6 and got good comfort and no loss of tidal volume.  Basically by dropping the pressure support to 4, we killed off about 20 CA per hour, but let a few OA in with the low EPAP of 8.0.  Sorry for the deceptive approach, but this confirms the PS of 6 is the problem, and an EPAP of 8 is not so bad for obstruction.   So if this felt good, then we can try Vauto with EPAP min 8.0, PS 4.0 and max IPAP pressure of 18.  I think you will continue to see improved CAI and improved OAI when we allow EPAP to rise a bit.

Just to clarify...it was the treatment causing the problem.

I had actually figured out that your math was wrong but decided not to question it since there was a pressure support setting that I change to 6. I almost asked several times how you decided 12-8=6 instead of 4 but decided to trust you 

I'm glad I did. I have felt fairly good all day. I still only partly understand so much of this though since I did switch the setting to auto. So you think the actual pressure support of 6 (being that high) was causing the problem? And I'm guess that since I'm still having centrals (on a much smaller scale) that I still need the ASV instead of continuing to adjust my current machine? 

In this reply you said to switch to "Vauto with EPAP min 8.0, PS 4.0 and max IPAP pressure of 18." But in the next reply you mentioned staying the same as I currently am while waiting for the new machine. I'm willing to do either. 

Also KOSOKU mentioned this possible change:

Don't know if this is applicable here or not, but I had really good results for getting rid of CA's when I set the Trigger to very high from Med. Again not sure if this scenario is applicable, but might be worth a shot for a night.

What do you think of me making that change?

Thanks again, even though the deception was there 

If there are other changes that I should try, I am willing just to know better what to say to the sleep tech when I do the new sleep study.

[LookingForward]

I want to get back to this for just a moment. The results you have do not mean that ASV may not be a good idea, but it must be a tremendous relief to have fewer events while you're waiting for the nest test and ASV approval.  If your doctor and you want PS 6.0, then you will definitely need the ASV.  For now, I'd like to encourage you to stay with PS 4, EPAP min 8.0, EPAP max 12 (maximum pressure 16).  There is no reason to suffer with the 20+ AHI, when we can make you more comfortable, and meet most of your therapy goals.

Yes, this whole day has been better than all those other night with so many centrals. I only wanted the PS of 6 because of the bad result of changing from 17-12 and feeling so horrible the next day. I've pretty much stopped caring what the doctor thinks. But if I don't need that pressure support, all the better. 

If my current machine can have the settings change to be even better than what it is now (I have still been tired all day) and not need to go an ASV, I'm okay with that too. I don't know what my future holds but in the long run if I'm better off with the advanced settings of the ASV then I think it's best to keep the settings like they are so that using the machine is very doable until I go through the process again to get a new machine. I don't want to change the settings so much that the insurance and doctor don't see the need for the change in machine, yet still have an underlying problem that can't be addressed by my current machine.

[LookingForward]

Don't know if this is applicable here or not, but I had really good results for getting rid of CA's when I set the Trigger to very high from Med. Again not sure if this scenario is applicable, but might be worth a shot for a night.

Thanks for the suggestion, at this point I'm still to new to even understand the Trigger setting, so I hope it's okay to let Sleeprider weigh in on this suggestion before I go ahead and make the switch.

[Kosoku]

Absolutely. Sleeprider has way, way more knowledge than me on this. I am just suggesting based on my experience with it. However I do realize that what works for one may not work for another. Took me a few months, several masks, tons of tweaking to get to a constant AHI around 1 5-2. For me I found that trigger at very high knocked down CA's and cycle at very high knocked out Hypopnea. Plus it feels more natural to me. Others may not like the sudden pressure  change but again what works for one  may not work for another. Guess the point of this rant is hang in there and you will prevail. The advice and support here is second to none, and don't be afraid to experiment with settings.

[LookingForward]

I want to get back to this for just a moment. The results you have do not mean that ASV may not be a good idea, but it must be a tremendous relief to have fewer events while you're waiting for the nest test and ASV approval.  If your doctor and you want PS 6.0, then you will definitely need the ASV.  For now, I'd like to encourage you to stay with PS 4, EPAP min 8.0, EPAP max 12 (maximum pressure 16).  There is no reason to suffer with the 20+ AHI, when we can make you more comfortable, and meet most of your therapy goals.

I wanted to add a quick update on this. Thanks Sleeprider for the help in changing settings. But after several nights I felt like I wasn't getting enough air. The number of night time apneas did go way down but I just wasn't feeling as good after several days on the lower pressure. Since I really know so little about all of this I decided to set the machine back to where it was on Spontaneous 18/12. I was also not sure if the insurance would see the need for the ASV even though I was still having some Centrals with the AHI between 3-6 each night. 



I do have another few questions for anyone to answer. Since I have Myotonic Dystrophy 2, I know that it's common to also get Congestive Heart Failure. I don't have it now but was concerned that in the future the ASV may no longer we appropriate for me. What machine would I go to from the ASV? A Resmed ST Auto maybe? Will this machine also be able to stop the Centrals?

[jaswilliams]

The ST can stop centrals but it is not as comfortable as the ASV to use, it is a fixed pressure machine with a backup rate

[Sleeprider]

The increased risk cohort for ASV is narrowly defined as HF with LVEF lower than 45%. This is a conservative extrapolation of a deeply flawed study that actually found increased risks at LVEF less than 35% . You should screen for ejection fraction, but if that checks out, then ASV is a better alternative to ST for therapy induced CA because PS 6 may not induce breaths, even with a timed backup rate.

I think you may be a very good candidate for EERS which we discussed before https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3998090/ The author of that article has been treating another forum member previously on ASV. I encourage you to have your doctor consult with that physician and try this technique in lieu of ASV. We have proven your central apnea is treated at PS less than 4.0 cm, and it is reasonable to conclude that enhanced rebreathing space would avoid the hypocapnea which is the root cause of your problem. Here is contact information taken from the linked article.
Robert Joseph Thomas, Associate Professor of Medicine, Harvard Medical School; Department of Medicine, Division of Pulmonary, Critical Care & Sleep, Beth Israel Deaconess Medical Center, 330 Brookline Avenue, Boston, MA 02215, Phone: (617) 667-5864, Fax: (617) 667-4849

Wiki link http://www.apneaboard.com/wiki/index.php...references
Tmember that uses EERS is Foxfire, and the DME that makes up the sevice is
The DME that provides the EERS supplies is:

Regional Homecare
125 Tolman Avenue
Leominster MA, 01453
Hours: Monday-Friday 8:00-5:00 Eastern
Phone: 978-840-0113