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Causes of Unknown Apnoea events?
#11
RE: Causes of Unknown Apnoea events?
Ratchick, ASV as treatment for opioid induced central apnoea is perfectly on label. It’s one of the recognised uses of ASV. Due to your desats your consultant may also consider additional oxygen as a solution. I wonder how easy it will be to get an ASV without an in hospital sleep study I had my prescription before COVID so it was not a major issue to do an in hospital sleep study or 2 but since COVID my reviews have all been telephone based with supplies mailed out to me.
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#12
RE: Causes of Unknown Apnoea events?
(05-24-2021, 07:58 PM)Ratchick Wrote: ...And that's all I can do until my doctor finally deigns to honour me with his presence. It's frustrating, but I understand that CPAP/APAP isn't what I need and that this isn't helping, and as I'm living on disability benefits, I don't HAVE that kind of money to just cut the queues or buy out of pocket right now.

Is there any way that you can track down someone doing research who would find your case fascinating and give you lots of attention? If an academic can get a bunch of publications out of solving your problems, that is an alternative way that they get "paid". (And it could also hook you into the manufacturers providing machines to the researchers so that the researchers would grow the manufacturers' business by finding new ways to use their machines.)

(just spitballing here... maybe you already tried this or something like it...)
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#13
RE: Causes of Unknown Apnoea events?
Thank you all for your concern and feedback. I genuinely appreciate everyone reaching out with suggestions. Smile

jaswilliams: That's exactly how mine has gone. It took months of my appointments being cancelled to even get an initial appointment with the consultant over the phone because COVID, and then they gave up and just sent me the kit for an at-home sleep study. I've literally only managed to speak to the doctor ONCE, everything else has been the sleep clinic who have been incredibly helpful but they're limited in what they can physically do. The last person I spoke to from the clinic said the same thing, that he was frustrated because if he was still nursing and I was his patient, he'd be up the doctor's ass about my case.

cathyf: I will have a look and see what I can find. But right now I'm gonna be calling the sleep clinic and the hospital again and try to kick some doctor butt once more.

geer1: I considered EPR but then looking at how it has a habit of worsening centrals, I decided not to fiddle for now. But I can certainly turn it on tonight and see how it goes.


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#14
RE: Causes of Unknown Apnoea events?
(05-24-2021, 11:28 PM)Maskman888 Wrote: Most of the time unknown events are also caused by leaks that's too excessive

Hi Maskman888. As I said in the original post:

(05-23-2021, 11:49 AM)Ratchick Wrote: ... My understanding is generally that these are apneas in the presence of a leak? But ... mine are occurring at times where I have zero leaks measured...

As others have clarified for me, that's only one possibility, and any apnea that doesn't fit the algorithm for either an OA or a CA is going in there. Thanks for the response, though Smile


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#15
RE: Causes of Unknown Apnoea events?
There was another case on here at the beginning of covid that was having issues and from UK. With enough push back was able to organize an in clinic sleep study. Your case warrants a titration study and/or trial of a different machine, I would be asking everyone involved in your situation to either order one or help get one ordered. It probably doesn't have to be a sleep doctor so if you have a good general doctor ask him to help you out and order the necessary test. If you are having trouble with your sleep doctor inform general doctor and ask for a different referral.

You might improve chances by sharing Resmed's titration protocol with your doctors. Point out how they indicate to use ASV if centrals are still present on APAP (page 15). From page 19 down it talks about CSA, ASV and then IVAPS. Your doctors are putting trust in sleep doctor/clinic, prove to them that the sleep doctor isn't following titration protocol or helping you and force your doctors to take further action.

https://resmedwebinars.com/assets/upload...139041.pdf


As a side note back on topic. UA's are also a lot more commonly flagged in bursts of central apneas like this. You get enough oddities during periodic breathing that it throws of the machines ability to correctly flagged OA's, UA's or CA's.
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#16
RE: Causes of Unknown Apnoea events?
Thanks for the link. I will keep on chasing, even though it's trying to herd cats (or catch farts) sometimes.

(05-25-2021, 09:22 AM)Geer1 Wrote: As a side note back on topic. UA's are also a lot more commonly flagged in bursts of central apneas like this. You get enough oddities during periodic breathing that it throws of the machines ability to correctly flagged OA's, UA's or CA's.

That makes sense. I'm also pretty sure that the vast majority of my spurious occasional "obstructive" events that still occur in the middle of a series of centrals might have been misidentified, but that makes sense. Sometimes my breathing pattern is all over the place, so I'm amazed it can figure anything out!

I went ahead and tried PS=1 fulltime last night. I don't feel great today (slightly headache) and I went from the first hour or so where I had virtually no events to the rest of the night where it shot up to just under 40/hr. But I guess I need to give it a few days to see if it actively makes any real difference.


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#17
RE: Causes of Unknown Apnoea events?
When trying EPR I would be looking primarily at two things.

1) AHI, did it increase, stay the same or decrease? This needs to be an average over a few days (unless it is obviously making things noticeably worse).

2) SPO2, was it better or worse?

The main thing EPR will do is increase the flow rate slightly which should help with SPO2 levels unless it depresses breathing further by creating more CAs.
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#18
RE: Causes of Unknown Apnoea events?
Your comment on catching farts made me laugh this morning. Keep pushing you will get there eventually COVID has buggered everything up somewhat
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#19
RE: Causes of Unknown Apnoea events?
Haha glad you had a good laugh, at least. Smile

I'm onto day two of headaches and bonus fog/exhaustion so I think I'm gonna call EPR a fail. It's hard to say for sure that things are objectively "worse" stat-wise after just a couple of days... but I physically feel worse and the stats aren't great. I've had a few days with higher AHI, for sure, but my SpO2 is definitely not as good today.

Ah well. More info for the sleep docs.


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#20
RE: Causes of Unknown Apnoea events?
Yeah if your AHI is obviously higher, SPO2 lower and you feel bad that is all in agreement that EPR didn't help.

Can you post some SPO2 charts from an average night on PAP (an average night without it would be of interest as well)? I am curious to see what they look like since it seems sats due to CSA may be your main issue.
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