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+--- Thread: New User [need help with my data] (/Thread-New-User-need-help-with-my-data)
RE: New User - DeepBreathing - 08-29-2017
Sometimes you need to go over their head. Get an appointment with Dr Ivan Ling who is the principal sleep physician at CRS - If I remember correctly, he's located in their Hollywood hospital branch in Nedlands. Go armed with all the SleepyHead printouts (which he probably won't want to look at) as well as the original sleep study result. You may also have a letter of diagnosis signed by Dr Ling or one of the other physicians. Explain to him that you are extremely concerned about your mother's health and you feel the current therapy settings may be endangering her life (which is a bit of over-reach, but should prompt some action, so long as you state it calmly).
A couple of points from what we've seen to date:
- The original sleep study showed up mainly central apnea. Whether that is endogenous or caused by her medication is to some extent immaterial. An ordinary CPAP or APAP will not satisfactorily treat central apnea.
- The central apnea is continuing while under treatment.
- The maximum pressure is not set high enough to treat the obstructive apneas, especially the cluster which seems to happen every morning (which I still think might be positional).
- The latest chart showed a significant amount of periodic breathing, which may not be significant, but does need to be looked at by somebody who knows.
The mouth-breathing is not an issue as far as I can see. It normally shows up as a very distinct leak pattern, which is not present in her charts.
CRS is a big company with a lot of branches. In such a situation it's always possible to get a one-off incompetent person. When I used them (about four years ago) I had a brilliant therapist and a couple of average ones. I think you've copped a dud. It's also the case that they see dozens of ordinary obstructive apnea patients for every one central, so often they are out of their depth in a serious case like your mother's.
RE: New User - Recurve - 08-29-2017
I have done as suggested gone over her head while waiting for a reply here. I asked to lodge a complaint against her for attacking us for trying to find a better fix that may help more than the current system they have set.
her reply was to reduce pressure from 6.4-15 to now set as 6.4-13.8 I am not sure if this is dangerous as i see she hits 15 most days ( I am not in anyway knowledgeable enough to refute this) even though my limited knowledge says this is wrong.
EPR she says is set now at 2 not 3
Do I accept this setting or should I change them before tonight.
I am worried 13.8 will not treat the obstructive
I am so new to all this trying to understand as much as I can but typically with our family it is not straight forward fixes
RE: New User - Recurve - 08-29-2017
I have just got off the phone with another technician. She has agreed with your opinion that maybe the wrong machine has been given. She was great to talk to listened and answered any questions I had
I have an appointment for mum this Friday to do extra tests to make sure the ASV is a safe alternative with her heart.
If her tests show that ASV is a safe option they have agreed it is worth trying, originally coming off morphine her results seemed positive ( I have no access to these results as I was not monitoring the results like I am now) they will test the ASV machine.
She explained that the central apnea may have been made worse by upping the pressure to correct the obstructive apnea.
She has set pressure as 6.4-13 and 2 EPR with explanation that lower pressure will help centrals
Any further advice appreciated
RE: New User - Gideon - 08-29-2017
If you post the SleepyHead charts, we would be better able to give you advice. Detailed data says a lot more than summarry results.
Glad you got a good Tech that understands.
Fred
RE: New User - DeepBreathing - 08-29-2017
G'day Fred, have a look at the first couple of posts in this thread - Recurve has posted several charts which are all showing high AHI with a very high proportion of centrals.
At this stage I think she would be best served by working with her switched on new therapist. I'm pretty much convinced that her Mum needs an ASV, but she needs to get clearance for a heart condition first, and that is now scheduled.
RE: New User - Sleeprider - 08-29-2017
Your mom has predominately central apnea and might be considered mixed or complex apnea. Ultimately, she is using the wrong machine to treat this and needs to be on an adaptive servo ventilator (ASV). Specifically, I would recommend the Resmed Aircurve 10 ASV. Until she is on ASV treatment, she will not improve regardless of your manipulations of pressure, sleep position and other things you can control on the CPAP.
There are a couple things you can do to optimize her results on CPAP, and it's going to mean using relatively low pressure, no EPR and a very narrow range or fixed pressure. There are many threads on this forum where we have assisted others with this very familiar problem get the treatment they need. The recommendations I will give you are a bridge to ASV, not a solution. You need to bypass technicians and find a physician familiar with complex and central apnea. I can provide an extensive reading list for you to use so you can avoid referring to this lowly forum and can use some recognized studies. Doing a search for "Efficacy of ASV in Central and Complex Sleep Disordered Breathing" will bring up a treasure of resources for you to consider.
My initial recommendation is very simple, and is based on her response to different pressures you have posted. Fixed CPAP pressure of 7.0 with no EPR. This will not stop all apnea, but it should minimize the events until you can act to put her on ASV. Even if you have to purchase this out of pocket and bypass your health system, it will be worthwhile. Consider Supplier #2 who ships internationally and has some very nicely priced "gently used" and new machines. Either the Resmed S9 VPAP Adapt or newer Aircurve 10 ASV will resolve this problem.
RE: New User - Gideon - 08-29-2017
DB no question about current direction. My thought was in better enabling us to provide better guidance and questions to bring forward on getting the ASV and perhaps helping tweak the CPAP treatment leading up to the ASV.
RE: New User - Recurve - 08-29-2017
After the change back to max pressure of 13.2 and EPR changed from 3 to 2 she had her worst night yet. I was an idiot and forgot to put the SD card back into her machine so I do not have a sleepyhead chart to upload all I can go by was the numbers the machine reported
AHI 56.7
Central 43.1
leak 2L/min
pressure 13.1
8.7hrs Use time
I contacted them again to ask if they had better data to see what was happening and she said the machine had no reported back to them yet but took me thru the sleep report on the machine where I got those figures from. She has booked mum in to get her heart checked on Mon 4th Sept to make sure she is safe to use the ASV. She has a doctors appt Friday to get the referral and we will fax that through to them.
They have said to leave settings as is until they can test her heart. I will start looking into what Sleeprider has suggested and consider locking them out of making changes and do it all myself with settings recommended here. Only issue with that is getting my mother to agree to it, she is old school where you do not go against doctors orders.
The technician is waiting on a reply from the head specialist.
She is very helpful compared to the original technician who got angry at the fact we questioned things.
RE: New User - Sleeprider - 08-30-2017
I'll stand by my previous advise. Sorry for the difficulties, and expect delays. It's very hard to watch loved ones deal with a problem like this when a solution is at hand, except for the stubbornness and bureaucracy of the professionals, insurers and suppliers.
RE: New User - Swisssleeper - 08-30-2017
Hi,
I found this a great read - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3704546/
I hope this helps give a better understanding as it did for me. I am also a new user with similar traits, I was diagnosed with OA and treated with APAP but I am now having very mixed nights due to CA events.
I hope you get it sorted for your mum.