+- Apnea Board Forum - CPAP | Sleep Apnea (https://www.apneaboard.com/forums)
+-- Forum: Public Area (https://www.apneaboard.com/forums/Forum-Public-Area)
+--- Forum: Main Apnea Board Forum (https://www.apneaboard.com/forums/Forum-Main-Apnea-Board-Forum)
+--- Thread: New User [need help with my data] (/Thread-New-User-need-help-with-my-data)
RE: New User - Recurve - 09-01-2017
Yet another update with logs, After a long chat with her new technician they adjusted setting in a way closer to that which Sleeprider suggested and we have seen some good results in the last 3 days. So much so my Mum now thinks she is on the correct machine and the heart test they have planned for Monday is a waste of time.
Her technician says the machine she is on will given enough time likely correct the CA but we have an Appt still booked to see the treating Doctor on Tuesday. Here are her last 3 nights Sleepyhead Data
https://imgur.com/a/JEJY3
https://imgur.com/a/lNRVu
https://imgur.com/a/vZ8XX
Do you all agree she still needs the ASV machine? Or does this machine seem to now be correcting results correctly.
RE: New User - DeepBreathing - 09-02-2017
They certainly look a lot better, but you've got three quite different results on three consecutive nights. That's why we tell people to adopt a setting and leave it for a while till a trend becomes evident. I don't see any clear trend here.
I am seeing a repeat of that huge cluster of obstructive apneas which showed up on her earlier charts. It's earlier in the night but following the same pattern and continuing for over an hour and a half. I think this is something which needs further investigation. I suspect it will require more pressure, but that might set off the centrals again. Alternatively it could be postural - do you know if she was using the collar on Thursday night?
My gut feeling is that you will end up with an ASV, but it would be wise to look at the alternatives first, including perseverance with the current machine. In your Mum's shoes I would still do the test on Monday - if nothing else it will give you some certainty about the condition of her heart.
RE: New User - Recurve - 09-02-2017
Thanks for the reply I agree with getting the test still done on Monday as you say she may still end up needing the AVS.
Yes she was wearing the neck collar each of those nights I can see that she had some leaking during that night at the same time of the cluster. Could this be mouth breathing and not real events? I just wish to be sure of what I know before seeing the doctor on Tuesday as the 1st technician blames every event on mouth breathing originally saying the leaks showed she was mouth breathing then when events happened with no leak she also claimed mouth breathing. Is there a way to tell if an event is due to mouth breathing?
RE: New User - Sleeprider - 09-02-2017
As I said when I made the recommendations, they are a bridge, not a solution. The Auto ASV will change pressure to resolve obstructive events, and provide breath by breath support to eliminate centrals and periodic breathing. I'm obviously pleased that this has had a positive result however the permanence of the improvement, and consistency in treatment will be lacking. From night to night you will not be able to predict the likely outcome.
The settings being used have retained an EPR of 2, and I think that is likely to be a continuing source of higher apnea. Since EPR is part of the patient control, I recommend you reduce or eliminate it.
Keep working toward the ASV, and if this turns out the best that can be accomplished due to heart issues, monitor the blood oxygen levels and if necessary add O2. Hopefully the ASV is able to be approved since it will have the best outcome.
RE: New User - Recurve - 09-05-2017
Disillusioned with our sleep doctor today.
I went in armed with questioned from this thread and received some crazy responses. To be blunt he said he changed pressure from 11 to 12, EPR left at 2 (he says EPR has no effect on Apnea). Also neck collars have no effect. Even though i got my mum to not use the collar last night to see if it was helping
Night with collar
https://imgur.com/a/tj9IQ
Night before Appt (no collar)
https://imgur.com/a/wW01h
He asked if I had a Health Degree as I seemed to knowledgeable. (Thank you forum).
He downloaded from the SD card but seemed incompetent in the Resmed software he had no clue how to do detailed daily graphs. He highlighted weekly events without looking at daily graphs. I asked him if he could look into daily graph and work out why the events are clustered. He tried but was obviously unable to work out how to check each days events.
The furthest he went into was into summary events and statistics never looking at 1 daily event even though I asked multiple times to review why the clusters appeared at specific times.
He was more shocked that my Mum used the machine as he said most stop using it after prescribed.
Questions I asked
1) Huge cluster of obstructive needs further investigation, suspect higher pressure needed but this may cause more Centrals.
Reply Yes maybe
2) Auto ASV changes pressure to resolve Obstructive and provides breath by breath support to eliminate Centrals and periodic breathing
Reply Yes maybe
3) Current machine settings will not provide improvement and consistency, will this be lacking?
Reply Maybe
4) EPR is set at 2 should this be reduced to 1 or none if staying with this machine.
Reply it is irrelevant and if I wished I could change this but it has no help in events just discomfort for my mum.
5) Sleep study showed predominately Centrals why was this machine advised with having to go off morphine which she needs to have any chance at a normal life
Reply He never thought with her reports she could go off morphine and he was treating her as if she still required it.
If I am 100% honest with my limited knowledge gathered here I could have seen his next patients and be more capable of giving better advise.
RE: New User - Gideon - 09-05-2017
Monday's test results?
and are you MAYBE trying ASV? ;-)
So what is the next step per her Doctors?
Fred
RE: New User - Recurve - 09-05-2017
Her appointment to have her heart tested was cancelled as technician was unwell she is getting heart checked on Thursday now.
He wants Mum to stay on this machine with his new settings either way for at least a month, then he suggested if ASV is needed they may look at a way to buy her machine off her if she needs the ASV. But as DeepBreathing says they sold her a machine not fit for purpose it should be a full refund.
I am still in shock he had no idea how to check daily graphs which even this forum require in order to help someone.
I will wait until mum has heart checked then gather a period of 7 days charts to post here and I think I trust you guys more than I do the specialist if you all think she is on the wrong machine as I do atm I will go down that path.
They are happy with any results under 10 AHI yet I read here under 5 is considered treated.
Next step for Doctor is 1 mth he has booked another appointment to see her.
RE: New User [need help with my data] - DeepBreathing - 09-07-2017
Given the very erratic results your Mum has been getting, it's probably a good idea to leave settings unchanged for a while and see how things settle down. Of course if they don't settle down, then a more aggressive approach will be required. Let's see the chart after a week and see how it's going - my guess is that AHI will be up and down, she will still be getting varying numbers of centrals and she will still be getting those big clusters of obstructive apnea.
Quote:I am still in shock he had no idea how to check daily graphs which even this forum require in order to help someone.
I'm not. These guys tend to be a bit academic and don't get their hands dirty with the hardware and software. The technicians know what's what (in terms of the nuts & bolts) and the Dr should have got a tech in to do the download & report. You can always take in your own SleepyHead reports (or even better, have SH running on a laptop), but a lot of doctors will ignore SH results as they don't come from the "approved" software.
It seems also that this doc (like your first tech) didn't know a great deal about central apnea. This is not at all unusual - for most of them "apnea" means "obstructive apnea". The literature implies that central apnea is very rare and often only found in people with heart congestion etc. From the limited sample on this forum I think it is much more common than they imagine, and occurs in otherwise healthy people as well. In your mother's case, the pain medication is obviously a contributing factor.
Quote:They are happy with any results under 10 AHI yet I read here under 5 is considered treated.
I've been trying without success to find a simple definition of what is or isn't "treated" from the Australasian Sleep Association https://www.sleep.org.au/ or the Australian Sleep Health Foundation https://www.sleephealthfoundation.org.au/ There doesn't seem to be a distinct cutoff that I can find at the lower end. 15 - 30 is classified as moderate and >30 is severe, but I can't find anything that says 5 or 10 is regarded as treated. There may well be a document in the American literature. In any case, I know there has been a push to raise the threshold in the States (and possibly also here) which is driven by insurance costs.
Edit: The nightly AHI is an indicator of the severity of apnea but it is not the only indicator and perhaps not the best. In some cases, the number of apneas may be low, but each event has a prolonged duration. Alternatively, the events may be limited to a short period, but with many events occurring during that period - this is what's happening with those big obstructive clusters your mother's having. If you were to zoom in on that 60 - 90 minute session I'm sure the AHI over that period would be extremely high. I think an hour of extreme apnea would do much more harm than the same number of events spread out over the night.
Quote:then he suggested if ASV is needed they may look at a way to buy her machine off her if she needs the ASV. But as DeepBreathing says they sold her a machine not fit for purpose it should be a full refund.
Absolutely - CRS undertake the diagnosis, treatment and supply of machines - there is an obvious potential for conflict of interest, as covered in the ASA code of ethics. On the basis of their knowledge and expertise they have diagnosed a condition and sold you the device to treat it. If it's the wrong device then you are fully entitled to a full refund. No doubt the doctor will go into CYA mode (and medics close ranks) but you must be very firm on this point. Perhaps you could politely ask about their liability insurance...
RE: New User [need help with my data] - Recurve - 09-07-2017
Yes I agree I am leaving the settings as he set them for a week before posting them here.
She had her heart tested today so we will see how that turns out.
Thanks
RE: New User [need help with my data] - Recurve - 09-11-2017
Well a week has past since he adjusted her settings, He told me not to call them no matter what her numbers showed and said they would be monitoring her results daily. I call BS on this as the results are unacceptable in my opinion.
He also stated it can take a while for results to improve so he does not want anything to be done to settings for at least a month, is this a true statement that leaving her like these results show may miraculously improve in a week/mth?
https://imgur.com/a/9tsYW
https://imgur.com/a/7rVdq
https://imgur.com/a/pWDQx
https://imgur.com/a/zvbzo
https://imgur.com/a/jhdsC
https://imgur.com/a/YpfLz
What do you think should be our next step? We are still waiting to hear about her heart report but Mum does not wish to fight with them to get a full refund if she needs ASV. I disagree completely they sold her a machine that her sleep study showed clearly she had predominately central and mixed Apnea. They sold her a device that was never going to help they where just happy to sell a machine IMO. He even stated he could not believe she was using it as most of his clients go home use it for a day or 2 then stop.