Smargie’s Therapy Thread...in Need of ASV Advice

No more questions for now, thanks. I’ve got min and max both set to 7 and the flex is off. I hope I can remember what the settings were before I fiddled with them.

I’ll let you know what happens tomorrow.

You don't have to worry about remembering the prior settings.
SleepyHead has a record of all changes to settings down at the bottom of the main statistics page.
Every time we change something it gets noted. It notes it even if you change machines. Gives AHI and some very basic data also...so easy to see if the average AHI was maybe better at a different setting.
Good luck tonight. I will cross my fingers and toes....miracles do happen...rare but they do happen.

Welp...I don't think any miracles happened with my new settings last night, Pugsy and Jay.


It was a little more comfortable with a lower max pressure limit, although I was awoken a few times from mask leaks. I didn't feel leaks coming from my mouth which is often a problem for me. After having taken a night off it was really clear how much worse I feel in the mornings after CPAP. I always have a headache and a sore throat. But my level of fatigue seems to be the same with or without the CPAP.

So...was this enough of an experiment, or should I give it more time?

BTW, what are those grey lines in the flow rate chart?

I see no sense in another experiment...no amount of time is going to fix that mess.
I think the gray lines are PB flagged breathing...usually green but for some reason gray.

To be honest if these reports you are getting were my reports...I would set the machine aside and sleep without it until I had a chat with the doctor. If we are to believe the data recorded....it's making things a whole lot worse and you are also feeling it. I wouldn't do it if it were me. We aren't talking a little worse...we are talking hugely worse. No amount of time will ever fix this problem IMHO. You need a different machine most likely. There is a very real chance that it's making things a lot worse for you....I wouldn't do it if it were me.

beautifuldreamer wrote: ↑

Tue Apr 16, 2019 10:06 am

Last night I tried a soft foam cervical collar (not quite the right size) instead of my chin strap, and it worked much better than the chin strap for me!

My headgear from my mask stayed more in place as well (when I was using the chin strap over my headgear, both would get out of place during the night and was so difficult to get back in place) -

Also, I slept much better through the night and feel more rested than I have ever felt in quite some time

I've heard people say that collars can be uncomfortable and claustrophobic, so I'm glad it worked for you. I have the same trouble with the chin strap and headgear--they get all tangled in your hair and when you reach behind you can't tell what is what!

Chris8243 wrote: ↑

Mon Apr 15, 2019 11:33 pm

Smargie wrote: ↑

Thu Apr 04, 2019 4:17 pm

I’ve ordered a chin strap and it will be here tomorrow. I’ll also get a scunci tomorrow. I went to the medical supply store yesterday and they said to first try the chin strap and that if that doesn’t work I’ll have to use a face mask. Seems like some of you go pretty far in order to avoid a full face mask.

The full face mask is not bad! I've been using Amara View, trying now to switch to Resmed F30. Both sit over your mouth and up to and under your nostrils, but not over the bridge of the nose. There are some that cover the whole bridge of the nose. I wear glasses and tried that kind but no go, can't wear glasses with that style.

So switching (or trying) a full face mask will not be the end of the world. There is also one called Dreamwear, headgear can accept nasal or full face style masks. I tried it and it wasn't for me, some people think it's the best

Clearly one size or shape does not fit all. Trial & error to find a good fit!

Thanks for the encouragement. I think there will be a lot of changes coming up for me as what I'm using now has only made things a lot worse than when I started. If I do end up with a full face mask I definitely am interested in one like yours.

Pugsy wrote: ↑

Wed Apr 17, 2019 3:59 pm

I see no sense in another experiment...no amount of time is going to fix that mess.
I think the gray lines are PB flagged breathing...usually green but for some reason gray.

To be honest if these reports you are getting were my reports...I would set the machine aside and sleep without it until I had a chat with the doctor. If we are to believe the data recorded....it's making things a whole lot worse and you are also feeling it. I wouldn't do it if it were me. We aren't talking a little worse...we are talking hugely worse. No amount of time will ever fix this problem IMHO. You need a different machine most likely. There is a very real chance that it's making things a lot worse for you....I wouldn't do it if it were me.

Sigh...that's not what I wanted to hear, but thank you so much for all of your help. I KNEW something was wrong and your responses have been insightful and validating. So, does this not appear to be a typical case of CSA, in your opinion? I wonder why it worked so well for the first 6 days and then went bonkers. And I felt really good in the beginning--more alert and energetic with a decreased appetite. It would be great if it were a matter of machine malfunction and I could just switch it out and go back to effective therapy. If I find out that that machine actually did some permanent damage to my health I don't know what I'll do.

It might be something as remote as the machine malfunctioning in terms of the sensors. Remote possibility.
Meaning maybe it did work properly for the first week and something broke...and what we are seeing being reported isn't real.
BUT...you are feeling worse which leads me to believe that something bad is happening that didn't happen that first week.
If you told me you felt great just like you did that first thing that would be one thing but you aren't saying that. What I hear you saying is that you feel as bad as those numbers look.

If you did develop Comp SA after that first week...as to why I don't know...and that's assuming the machine is flagging the events accurately...both OSA and central apnea events being flagged equally as ugly. I am questioning if those OAs are really OAs .....you are having more of them than you did without cpap at all...and that doesn't compute or make any logical sense. It simply doesn't add up that with the machine being used that you would have more OAs than you did without cpap...I can see it not changing but I can't see it getting worse if those are really obstructive in nature.

I am going to assume nothing else changed in your routine....like you didn't go on some heavy duty pain meds after a week on cpap...
Medication that suppress the respiratory system is one potential culprit when people who don't have problematic centrals during the diagnostic sleep study have them pop up once they get on cpap.

Something changed after that first week...as to what it was I don't know...might have been the machine but that's a remote chance.
Might have been something in your body that triggered the centrals after a week of good numbers. I honestly have no idea.
This is where the doctors get to earn their big bucks....
That appointment is in a couple of weeks isn't it?

Smargie, I'm sorry we didn't see any improvement. I really don't have a any suggestions for a different type of trial. Sometimes, centrals of this type resolve on their own with continued treatment, but that supposes one can continue the treatment. I understand, in your case, you may not be able to.

So, what I recommend is that you change your settings back to those prescribed by your Dr, 4 min - 20 max, I think, use it as much as possible and call your doctor to see if you can't get in earlier than your next appointment. I suggest you use it just to document that you are trying and it isn't working. There are machines designed to treat CSA, but usually one has to demonstrate failure of cpap before another more sophisticated machine is prescribed.

I know you have a fear that using the machine may harm you in some way, I don't think that's the case, but do relay that fear to your doctor.

Post any info or questions you have and we'll try to support you as best we can.

Anyway, hang in there. Hopefully your doctor will get this resolved and you'll be sleeping good again, soon.

My long awaited appointment with the sleep doc is tomorrow!

To be honest, my anxiety and “good girl” complex kicked back in after I last posted and I used the machine a few more times and drove myself crazy trying to interpret the results. I would say that some of the OAs and many of the Hs were false, but there were way too many to go through and the bottom line was a continuation of the ugliness, no more, no less.

Also, I did not mention this in my previous posts, but I have chronic pain and have had a pain pump with dilaudid in it for over 10 years. Since the medication is delivered into my spinal column instead of orally the side effects from it are supposed to be greatly reduced. In the doc’s preliminary evaluation notes she wrote “Possible obstructive and/or central sleep apnea” and “CO2 retention likely secondary to her Dilaudid pump.” Since I don’t have any of the signs of OSA I thought the sleep test would either be negative or show central apnea. I was surprised that it turned out to be OSA ( AHI 18, 15 Hs and 3 centrals). So, Pugsy, when you asked if I started taking heavy duty pain meds after the first 6 good days, yes I do take them, but no I didn’t suddenly start them after the first 6 days.

Just to refresh your memories, after 6 days of improved sleep with an AHI between 2 and 6, my AHI rose abruptly and permanently, and ranged between about 55 to 85. There were lots of OAs and Hs, but about twice as many centrals as the other 2 combined. When I spoke to someone at my doctor’s office on 4/10 she ostensibly pulled my file and reviewed the current data from the CPAP, and I was told I’d likely developed treatment related central sleep apnea, which was very common, , not to worry, and that I should continue the treatment for a week or two more and the numbers should come down.

So...she was obviously wrong. What do you all suggest I ask her at this appointment? Have any of you talked to your doctors about SleepyHead? What should I say about having gone into clinician mode and changing the pressure to experiment?

I’m feeling angry, scared and guilty all at the same time. It seems like the treatment made me worse. Any thoughts about what may come next? Or what SHOULD come next? I think the whole process is pretty strange...you have the sleep study, you are told over the phone you have moderate sleep apnea and are sent to a DME to get set up, and then there’s no one to talk to until your next appointment with the sleep doc. Thank god for this website and SleepyHead— I’d be even more in the dark without you. I feel I need to go into this appointment not only prepared, but armed.

Any advice would be greatly appreciated!

Hi Smargie,

Glad that you posted. I was wondering how you were doing.

What should come next? The Dr should look at the results of your therapy, listen to your concerns, and take steps to ensure your therapy becomes effective. Will that happen? Let's hope so.

First, you have nothing to feel guilty about. It is your therapy, you deserve to have it be effective. You have hired a Doctor to see that it is. You are the boss. You have hired someone to do a job. You have every right to expect that the job is done to your satisfaction. Always remember, your Doctor works for you. Don't worry about anything you've done to try to improve your therapy, like changing the pressure. It is your therapy. Probably, the doctor won't even be aware. If she asks, tell her you were hopeful you could make the therapy work.

Now, as far as taking SleepyHead results, I would, but I wouldn't take an overwhelming amount. Perhaps one day that is representative. The problem is that many Sleep Doctors aren't very adept at reading reports, unfortunately. Many, if not most, rely on DMEs to provide reports. These often are no more than summary data reports showing usage, leaks, broad AHI breakdowns etc. Few DMEs, in my experience, would include so much as a Flow graphic in the report. If the Doctor is versed in the reading of reports, most likely it is from the software associated with the particular machine in use, ie Encore or ResScan, and will be unfamiliar with SleepyHead and tend not to want to look at SleepyHead reports, or simply dismiss them out of hand. On the other hand, some doctors who do look at reports will recognize the SleepyHead report for what it is, simply another source of data, the same data provided by other "official" softwares and be happy to look at it. I wouldn't lead with SleepyHead, but try to discern whether or not the Dr is receptive during your visit. I would lead with your observation that the therapy is not working, as demonstrated by the number and type of events as reported by your machine, and the fact that you feel terrible and haven't been able to obtain restful sleep with the machine.

Even if your Doctor doesn't want to look at SleepyHead , she should have enough information from the data from your machine and your statements to determine that your therapy is not working. The next step, in my opinion, would be another sleep study to determine if a bilevel machine might be appropriate. Generally, one has to fail at cpap before bilevel is considered. You seem to have failed at cpap. Fail, here, is not negative. It simply means the therapy hasn't worked.

So, bottom line, you should go with the expectation that your Doctor will provide the proper course of action to see that your therapy is effective and you should be prepared to demand as much. Remember, she works for you. If you feel your doctor is not giving you the support you need, then you should consider finding another. Many of us had to go through more than one doctor before finding one we could work with.

Good luck.

P.S. I don't know if your therapy is being monitored remotely, or if your Dr has otherwise made arrangements to obtain a report, but in addition to your SleepyHead data, you should probably take along your SD card - just in case.

Regarding your upcomng doctor appointment and Sleepyhead...

I increased my pressure after posting Sleepyhead results on the forum and people made suggestions. I had to learn how to "crack the code' to get into the settings on my machine. With guidance from the group, it's easy to get the manual and figure it out. So when I had my next doctor appointment, I wasn't sure how he'd react. When he came into the room, he said "I see you changed the pressure. Good job. I would have done the same." That lead to me telling him about Sleepyhead and this forum. He was aware of Sleepyhead although he never looked at it. He complimented me on taking charge. So some doctors will appreciate patient's tweaking!

Jay, thank you so much for the pep talk — it was exactly what I needed and made me feel a lot more confident at my appointment today. Intellectually I already knew most of what you said, but this has been such a bizarre and unsettling experience that I needed that kind of hand holding.

The doc asked how it went and was very surprised when I explained what happened. I showed her a screenshot of my last night on CPAP and she immediately asked her staff for a much more detailed set of reports. Sure enough they matched up to my story...my average AHI for the 32 days of “treatment “ was 59. And then she said “Do you have heart failure?” I said not that I knew of and asked why she’d asked. She said that my pattern looked like someone who has heart failure. That was pretty scary to hear. I do have some arrhythmia but it’s nothing my cardiologist is concerned about. She ended up saying that it was very unlikely that I did.

She thinks that I am one of those rare people who respond to the continuous air pressure by developing central apnea. She says it was a little unusual for it to start after 6 days — most people react after the first or second day, and then it starts to go away on its own. She also pointed out the strangeness of the environment and conditions during a sleep study and that my one night spent there was not necessarily representative of “normal” for me. I’m also a night owl — I usually go to bed at 2 and get up at 9 or a little before. So when they got me up at 5:30 at the sleep study I was just getting to the time of night when I sleep most deeply.

Anyway, I will be having another sleep study in 9 days and am supposed to bring my CPAP to wear (but I don’t need to use it between now and then). She said that most likely I will get an ASV. I wonder what that will be like. Time for more research! What happens during titration studies? I can’t imagine they’ll be able to adjust the pressure on my machine to make it therapeutic for me. Is it just to double prove that I fail at CPAP?

Chris, if she noticed that I’d changed the settings she didn’t let on.

Smargie wrote: ↑

Thu May 02, 2019 5:38 pm

Anyway, I will be having another sleep study in 9 days and am supposed to bring my CPAP to wear (but I don’t need to use it between now and then). She said that most likely I will get an ASV. I wonder what that will be like. Time for more research! What happens during titration studies? I can’t imagine they’ll be able to adjust the pressure on my machine to make it therapeutic for me. Is it just to double prove that I fail at CPAP?

Most likely there will be a brief period on your cpap to document the centrals and then they will bring out the ASV machine.
Not sure why they want your machine though....they could use cpap mode on their machine just as easily and then just switch modes when they want to use ASV mode. Smoother transition and no need to be changing machines and wake you up and bother you.
Sleep lab machines aren't like our machines....lab machines usually have all modes available built into one machine and all they do is change modes.

At any rate...looks like you have a new machine in your future. They will adjust the exhale pressure up to where it takes care of the obstructive stuff and then set the pressure support so that it can give you a rapid quick burst of air to jump start your breathing when you have a central apnea happen and don't breathe. Pressure support is the difference between inhale and exhale.
You will probably start out with something around 4 or 5 PS and the machine can go up to 10 to 15 PS briefly to breathe for you.

And I agree....like I said before....I see no need to use the cpap machine between now and then. It was making things much worse.

Smargie wrote: ↑

Thu May 02, 2019 5:38 pm

Jay...

Sounds like your meeting with the doctor went well. Good. I'm glad.

Like Pugsy, I'm unsure why they would want you to bring your machine. Perhaps to test it? Bringing your own mask would make sense, though. Maybe that's what they meant? You might want to give them a call to clarify before you go.

As far as the titration goes, you probably won't notice any difference from the last one. You'll be hooked up with the same wires and the staff will test your response while you sleep, same as before. This time, though, since you've been through it before, it might be a little more comfortable.

Once you get your new machine and have it set up properly (it might take a little tweaking at the start), you should be sleeping well again, as you did the first few days with your cpap.

Let us know how your study goes. We'll be anxious to hear.

j