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Mysterious case of apnea
#1
Mysterious case of apnea
Tl;dr - For the past two years I've been sleeping on the BiPAP for CO2 wash and all was well and normal. Recently, my oxygen saturation starts dropping as soon as fall asleep while wearing the BiPAP (connected to oxygen) and returns to normal as soon as i wake up (still wearing it) - doctors tried different settings but no avail. If i sleep on nasal cannula saturation is normal during sleep.. anyone has any ideas or knows of similar cases?

Hi all. So I'm suffering from a very weird case of apnea and several pulmonologists and respiratory therapists are not able to crack it yet, i thought I'd ask maybe someone here has an idea what's going on.

Let me start by saying that i suffer from COPD (emphysema) and am in need of a lung transplant, so I'm normally on 6L oxygen 24/7. I usually sleep on the BiPAP (for CO2 wash) and when I'm awake I sit on the normal nasal cannula, not the BiPAP.

Things were normally fine, until recently when during sleeping on the BiPAP (despite connecting the BiPAP to oxygen and wearing a full face mask) i would find that my saturation gradually drops to 70s and 50s mid-sleep once or twice. The weird thing is: as soon as i wake up the saturation returns back to normal (90s; still on BiPAP) - the saturation only drops while I'm sleeping on the BiPAP, not when i am awake!

At first doctors said to ignore this since it did not make sense and blamed it on the oximeter and we dismissed this (despite telling them i wake up to a throbbing headache and other signs of low O2), however, over the past three weeks this has gradually increased to the extent that now as soon as i fall asleep my saturation drops - someone has to stay beside me and wake me up every 20 minutes as my sat drops to the 60s! They checked me while sleeping and i breathe normally while sleeping - so it's not due to me stopping breathing, and the mask covers my face so it's not because of leaks, and the oxygen is well connected and the flow doesn't stop.

We tried different settings and configurations for the BiPAP, and increased supplemental oxygen up to 10L, however all this did was prolong the drop by a few minutes.
Now here is the thing: if i sleep on the nasal cannula this does not happen, my sat is normal while sleeping! (although actually it might just have begun to, first time to happen was today, so just hoping maybe it was due to something else)


My current bipap setup is ipap 20, epap 8, resp rate 19,tmax 2.1s, tmin 1s.
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#2
RE: Mysterious case of apnea
Please download OSCAR and attach both the standard and advanced charts, View / Graphics / Standard or Advanced, in addition please zoom in a couple of random areas to provide a couple of 3 minute views and a couple of 15 minute views by repeatedly clicking on Am area of concern until the duration listed on the top left of the flow rate chart shows the appropriate duration.

You will have to attach the charts as you cannot yet provide links.
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#3
RE: Mysterious case of apnea
Welcome to the Apnea Board,

Yes charts from OSCAR will be necessary to help. It would be great if you have your diagnosic and/or Titration results to show also.

By CO2 wash, that sounds like the ST is being used for Central Apnea maybe. If that alone were the issue, ASV is the right choice. However a big BUT. But you have COPD too. Now that combo is similar to my own, and ST-A would be better at a minimum. The ResMed Astral 100 or 150 models are really the best answer though in this overlap issue.
Dave

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#4
RE: Mysterious case of apnea
maybe not the answer you're looking for or need but if it only occurs while using the machine and you can maintain your O2 with supplemental O2, wouldn't you be better off not using the pap machine?
  Shy   I have no particular qualifications or expertise with respect to the apnea/cpap/sleep related content of my posts beyond my own user experiences and what I've learned from others on this site. Each of us bears the burden of evaluating the validity and applicability of what we read here before acting on it.  
 
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#5
RE: Mysterious case of apnea
@Gideon Thank you for the recommendation and the thoroughness! Let me "try" to put in a few hours of sleep on the machine and report back, since I've now been resorting to sleeping on the nasal cannula and doing CO2 wash when i am awake.

@SarcasticDave94 Lungs, hehhh Dont-know ... am i right? I will check with my respiratory therapist about the Astral devices, thank you for the recommendation!

@sheepless while what you do does logically make sense, however, when i sleep without the BiPAP machine i wake up feeling lost, dizzy and fatigued.
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#6
RE: Mysterious case of apnea
I was confused but think I understand it now. Please correct me if I have misunderstood anything.

You have supplemental oxygen that you require 24/7. You also have a bilevel that you were using for sleep but are not using anymore because when you use the bilevel during sleep your oxygen level drop extremely low. This didnt use to happen but has continuosly gotten worse (not sure how long though, days, weeks, months?) and now makes sleeping with the bilevel impossible. Adding supplemental oxygen to bilevel does not remedy the issue. When you don't use the bilevel for sleep and you use supplemental oxygen instead your oxygen levels are better (but perhaps still not good?) but you wake up feeling bad. Last night while using oxygen you had a similar episode (low oxygen level) for the first time while sleeping with oxygen, you are hoping it was a bad night and not a sign of this issue progressing.

If that is all correct I will answer your first question by saying no I (and I assume others) are not aware of similar cases since this is not an apnea related issue but rather a serious medical issue that frankly we probably aren't qualified to comment on.

That said OSCAR has a lot of capability that can at least be used to help us understand why your oxygen levels drop while using your bilevel. We may be able to help determine if the oxygen drops are being caused by shallow breathing, central apnea, extended loss of respiration drive etc and might be able to give some advice on other settings or equipment to try although considering the circumstances all recommendations should probably be reviewed and approved by your doctor (s).

You don't need to use the machine again to collect this data. All the data we need should already be on the SD card (assuming one was being used in machine). Trying to talk you through the process of using OSCAR and providing us with the image necessary could be a time consuming and a drawn out process. Some complex items that may be worth looking into may also be beyond your inexperienced capability with the program. This issue seems like it could be time sensitive so to speed up the process I will offer to review your data and post interesting findings here for others to comment on. I will send you a message with details on how you can send me this data if interested in doing so.
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#7
RE: Mysterious case of apnea
Hey everyone.. just wanted to update this post in case anyone opens this thread looking for answers. What worked for me was changing the mode completely, the machine is now set at IVAPS. Saturation during sleep mostly is stable now, maybe a few drops per night but other than that it seems fine.
This is not medical advice, but after months of suffering i thought i should help pass along a solution. Let your therapist/doctor adjust the settings accordingly
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#8
RE: Mysterious case of apnea
Always good to see someone return and leave a "what happened" message.
Who knows, it might help someone else down the road.
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#9
RE: Mysterious case of apnea
Yep good to hear when things work out like this. In extreme cases like this where underlying health issues are the main concern rather than apnea always best to get doctor intervention although sometimes help on forums like this may be required to point doctors in the right direction (or realize you need to find a new doctor etc).

IVAPS is the right call to maintain your SPO2. If you are still having desats feel free to post some oscar examples and current machine settings and we can advise if there appears to be any room for improvement or just to stick with settings as is.
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