[Pressure] Centrals increasing; new to BiPap

[cdbeardie]

This is Larry's wife, Ann, posting for Larry.  (If this is breaching protocol with the forum, I apologize, as I'm not too up on correct online etiquette.)  He (cdbearie - which stands for the See the Beardie - referring to our bearded collie),  left early this morning to head up to our cabin, but I'll be in contact with him via phone. You will notice it's definitely a female writing this, and not an older male : )

Yesterday, you gave cdbeardie some numbers to try to reduce the centrals he had been having.

He wasn't certain whether he wanted to go in and change the settings on his machine by himself, but after some consideration, and frustrated by his sleep experience, and trusting you guys, he decided to try it.

If you remember, the suggestion was to turn the EPAP from 11 to 8, the IPAP from 18 to 12, and the pressure from 3 to 1 or 0.  

Well, when he went to change the settings, the pressure had already been changed remotely to 1 by the sleep clinic.  (I don't know if Larry explained to you it is frustrating to him that while they are supposed to let him know when they change the settings,  so far, they have never let us know when they change the settings.  He feels he is entitled to know this ahead of time.)

Anyway ...... Larry had the best night last night he has had since starting therapy on September 23!!  Yeaaahhhh - a big shout out to all of you - and thanks to all of you for your help and support!!!!!

While he still had 17 + centrals / hour, his apnea / hypopnea was under 2, and that means that the lower pressures and settings are still effective, while reducing the centrals.  Plus, he said he slept sooooooo much better with the lower pressures.  He stated that it made a world of difference and he had the best night's sleep he's had since he started this 6 weeks ago!  

He was also frustrated that the clinic doctor changed the pressure setting to 1 without letting him know.  He stated that if he hadn't known about it ahead of time, he would have thought his machine was broken, because the pressure difference was so dramatic!  Is this common, that changes are made without contact?  Just curious.

In any case, even at the much lower pressures, the obstructive apnea / hypopneas are dramatically reduced.  


Questions on what to do next:   
#1 :   Does he keep these settings for a few nights, or should he make changes based on the results last night?

#2:  ResMed says his mask is sealing great, while Sleepyhead says his mask has terrible leaks.  I notice that the leaks seem to line up with the centrals.  I will keep working on the screen shot thing today and post one to this site for you to look at. 

#3:  They mentioned to my husband after his first sleep study that they "might have to have him come back and do another sleep study", but then they decided not to.   Could his titration be that off?   Is this common, where major changes are made, and the therapy is still effective ? 

As his wife, I'm working with the tech guy today to get screen shots up to you guys to look at.  

Also, as his wife, many, many thanks!  We are going to ask for the sleep study and sleep study report, because it isn't clear to us if the centrals emerged before or after the cpap therapy was started in the lab.  They were very secretive with the report when we picked up the machine and mask, shoving it back in the folder when we asked questions. 

Again, thanks, thanks, thanks!!! 

[ajack]

1, sleeprider is advising on pressure, under 2 is good.
2, go by the sleepyhead chart for leaks, the machine will have a mask fit function that blows a higher pressure to adjust the mask, there are also youtube videos..the clinical manual is also available form the top of the page.
3, I would go back for a titration sleep test, I think he may need another machine for the CA, given 8 per hr were already there, I don't think they are pressure induced and will resolve by themselves..

[Walla Walla]

If they give you any problems about handing over the sleep study you might want to remind them they're required by law. They seem to need that reminder from time to time.

[cdbeardie]

Thanks for the advice, AJACK!  (Larry's wife, here.)  As I said, we're unclear as to the origin of the centrals, because when I asked about it, they told me the number, but kind of hid the paperwork.  Not certain if they were there before the CPAP mask or during. This whole experience reminds me of the Wizard of Oz, where there is a wizard behind a curtain, if you can only get to him via the "yellow brick road".  We can't call the sleep doc directly, shes' not on the "my chart" messaging system our clinic has, no email, and technicians are two extensions away from the main desk, and only work part time, and the sleep doc is only there one day per week.

I take full responsibility for this, as my husband had the heart attack where they discovered the apnea, and we were trying to get him in ASAP for the sleep study.  Our GP highly recommended her.  I didn't follow up with my own investigating, which is unlike me.  I wouldn't have suggested that a man with a long history of asthma with a recent heart attack, work with a family practitioner who spends one day per week running a sleep clinic. 

Which brings up still another question:  How do we find a good sleep doctor?  We are one hour from the Twin Cities, and two hours from the Mayo Clinic.  And, how do we convince them to take us "midstream", so to speak?  Suggestions welcomed!

[ajack]

They did an initial test without the mask to see if he had apnea, "When I was diagnosed I had 53 events / hour, 8 of them were "Centrals"
These 8 were already there and aren't 'initial user' CA that normally resolve for most people within 3 months. He needs his meds looked at and possible a neurologist to find out why the central nervous system is playing up.
You have to jump through hoops and fail cpap/bpap before they will advance to machines that will provide a breathe for you, during a CA

[cdbeardie]

Hi Sleeprider!

(cdbeardie's wife, not cdbeardie)

Larry is wondering what he should do now that the centrals have decreased to 17.  Should he continue to leave it at 12, 8, and 1 for the next few nights, or should he continue to decrease it until the OA's and Hypopneas increase but stay under 5, to see if the centrals diminish?

Your thoughts?  You've been right on so far!!

Thanks again!!

[Sleeprider]

Lower pressure is having the desired and expected effect in this case. I'm going to keep pushing lower to EPAP min 6.0, IPAP max 10.0 and PS 0 or 1. Many of our members can attest to their personal positive experiences with central apnea and moving to lower pressure.

[DeepBreathing]

G'day Mrs Cdbeardie. It's good to know that you're on the case for Larry, though as I said in an earlier message he really does need to "own" this therapy himself. But we all need help, so it's great to know he has soomebody vested in helping him.

You mentioned that your DME had changed the pressure remotely without permission (or even without letting you know). Here in Australia we have a concept called "informed consent" - I'm sure you have smething similar in the States. Basically it is illegal to perform any medical procedure (except in an emergency) without the express permission of a patient or legal guardian, and that consent must be given after all the ramifications of the procedure are explained.

As the CPAP pressure is dictated by a medical prescription, I would consider changing it to be a medical procedure. If it's changed without your permission (or even your knowledge) that is in breach of informed consent. I would be extremely unhappy if somebody did that to me! I'd be inclined to give the DME written notice that they do not have your (Larry's) consent to make remote changes.

[cdbeardie]

An update that's long overdue:  I have made some progress with the AHI's.  Mostly, what I have learned to do is sleep on my side without having major mask leaks, and that has reduced the AHI's to under 5 most nights.  Some nights it's under 3.  Most of these are CA's, but some of them could be waking up, moving, etc., so I don't know  the actual number, or how many are true centrals.   I do see some breathing that could be pattern breathing.
 

I ended up with settings of EPAP = 8, IPAP = 14, and pressure of 1.  That seemed to eliminate the Obstructive Apneas, while minimizing the CA's.  If I set it any lower, I had a whole bunch of OA's that seemed to happen in clusters.  

Now that the CA's have diminished, and my side sleeping is helping the obstructive apneas and the central apneas, I'm looking at moving  the settings back down to EPAP = 6, IPAP = 12, and pressure of 1.  

I have lost about 25 pounds, which is about 15% of my body weight.  Not certain how much difference that is making, as well, but I feel a lot better, that's for sure.

I meet with the sleep doctor for the first time in mid December, and she had mentioned another sleep study when I had so many CA's occurring in October to look at an ASV machine.  I'll keep you posted on what her comments are when we meet in December.

 If I hadn't gone online and found this support group, my pressures would still be in the high teens, my CA's would have remained in the 20's, I believe, and I would not be doing as well as I am at this time.  

Thank you!

[SarcasticDave94]

Congrats on the progress. FWIW: weight loss should be a good thing. For myself, the 300 lb version oh me had AHI of 70+ before any CPAP, the 225 lb version of me had 35-40 AHI with BiPAP, and the recent 200-210 lb Dave has AHI of averaging 2 with the help of ASV.

Dave B