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Sleep doctors giving conflicting advice - Morgannon - 02-09-2023
Hey everyone I have two sleep docs who are giving me dramatically different device although they can agree on a diagnosis at least.
5'12" male asthmatic, 240 #. Lungs still clear of any damage on cT scans.
Diagnosis: OSA mild to moderate with hypoxia events. Basically my breathing is too shallow in my sleep. I understand this means I should probably get an IVAPS so I'm working towards that.
So my airway is floppy, I'm obese, shallow, asthmatic breather. I'm on BIPAP mode S on my ResMed AirCurve10. Settings are Mode S Ipap 8.4 Epap 3.2. I feel like my ipap is too high (mask keeps blowing out) and yet I feel like I need more air (lungs don't seem to want to expand and fill).
Any suggestions are welcome. I know this is sparse information but I cant Dl charts to Oscar until tomorrow. So for now: big husky asthmatic with fat floppy airway and shslllw breathing. Mask seems to be leaking if I go much higher yet I feel I need more volume to inflate my lungs. Need more support in REM sleep which makes me think I need IVAPS next.
Just briefly fell asleep with mask on and felt air hunger. Woke up a second later. Should I be in CPAP mode to address o2 issues?
Again very sorry about the lack of too much concrete information to go on.
Morg
P.S. I really want to go back to ASV mode so comfortable but I understand that is for CSAs and not OSAs nor shallow breathing
P.P.S. Going to post Oscar files tomorrow.
RE: Sleep doctors giving conflicting advice - Homerec130 - 02-09-2023
Morgannon,
You've taken the first step in asking for help. It would help if you could update your profile with your machine. Can find that info usually on the bottom of the machine. I wouldn't worry about the humidifier part of it.
Seeing as you are using OSCAR, I would update that as well on your profile. Once we have the charts some of our folks who are more conversant at reading them than myself should be able to help.
You mentioned you had two sleep docs. Are they in the same practice or was one of them a second opinion? I have found through experience, they all have their own philosophies as to the best course of treatment. Once you get on the right track, I would limit my treatment to who appears to be the most qualified doc.
Hang in there, things will get better if you can stick to it.
RE: Sleep doctors giving conflicting advice - Morgannon - 02-09-2023
Hey Homer I did some updating!
I'm really struggling with the BIPAP right now. I seem to have every damn sleep related condition under the sun. I have OSA. I have some CSAs. I have hypoventilation. Ugh. Is there any hope for me here? I'm just about to traech up to get rid of at least one problem.
I was just sailing on Auto mode but then I noticed my breathing was getting shallower and shallower. I really would like something that is like Auto mode but with support to keep me from going too shallow. Is that AVAPS or IVAPS? It would handle my central's and shallow breathing but would it help the CSAs?
Also this sucks. I am not getting anywhere near enough air it feels like with BIPAP. The air comes at me too fast and I can't take it in.
RE: Sleep doctors giving conflicting advice - Jay51 - 02-10-2023
Hello Daniel. Congratulations on testing negative for one test for ALS (I read your other post). I also have OSA, CSA, and hypoventilate.
Minute Ventilation = Respiratory Rate x Tidal Volume. Increasing one or both increasing minute ventilation. I first tried using a rate of 15 and tidal volume of 400. Did not work for me because it felt like the rate was too fast and I couldn't fall asleep with it.
With many months of tweaking, I am now on the "auto" breathing rate on the Evo with tidal volume of 500 (which I can fall asleep with normally and stay asleep most of the night. So having a machine that "ensures" a certain "X" amount of tidal volume with each breath seems to work for me. My rate is staying high enough on the "auto" setting also.
Some people do better with a faster rate and lower tidal volume. Others (myself included) do better with a slower rate and regular to high tidal volume with each breath at night).
VAPS therapy (IVAPS and AVAPS) have this "ensured "X" volume" setting for each individual breath. Most machines do not have this. I have taken about 20 to 30 naps with an S9 VPAP adapt ASV and the jury is still out whether it is working well enough for me or not. Some naps are just fine with 0.0 AHI. Other show increased AHI and more hypopneas and central apneas (and my pressures bounce up and down from 8 EPAP (it only has a single EPAP setting) to 20 IPAP (hits my PS max). I have learned to sleep through this, but my minute vent. swings wildly up and down while I am sleeping. My tidal volume does the same. Interestingly, my rate stays just fine (even though the ASV algorithm technically does not provide a steady rate; but bases it on previous mintues and 3 mintues rates). Just said all that to say this: ASV might work for you if your hypoventilation is not too bad. It might not work for you if it is very severe.
RE: Sleep doctors giving conflicting advice - Jay51 - 02-10-2023
Quick repost. I apologize I did not see your other thread. I agree with Sleeprider and Gideon. The best move is probably to skip the ASV and try to move directly to a machine that provides Ivaps or avaps (since ASV is contraindicated for "severe and profound hypoventilation"). Based on my prior experience, you qualify for the "severe and profound hypoventilation" already.. It sounds like you low tidal volume is the major issue. This is the exact same path I took in the beginning to get here where I am now.
I had a CapOX test. (Capnography/Capnometry). Ask your Dr.'s about this. It shows the amount of hypoventilation present at night during sleep. It qualified me for this Evo ventilator and should qualify you for a VAPS.
RE: Sleep doctors giving conflicting advice - Morgannon - 02-10-2023
Jay thank you for replying! Yeah the really odd thing is that most of my hypos didn't go below 93%. But that was a month ago and whatever condition I do have is progressing. My shortness of breath really kicked into high gear after that test.
I notice you are on a Trilogy ventilator - may I ask, do you have ALS? Or MS? I've sadly become experienced with all types of respirators and ventilators and Trilogies or Astras seem to be the go to ventilator for those conditions. I'm doing it a little differently - I'm trying to get a breathing cuirass since I have a very hard time with PAP. I'm also enrolling in a clinical trial for the AerSleep II - a negative pressure collar - to help me with keeping my airways open instead of using a pap device. Depending on whatever condition I end up having I might have to eventually move to a traech and vent but I want to put that off as long as possible.
RE: Sleep doctors giving conflicting advice - Jay51 - 02-10-2023
You are most welcome Daniel. I don't have MS or ALS or any neurological diagnosis. The only diagnosis I have are hypothyroidism and a shortness of breath diagnosis from my Pulmonologist.
My SPO2 remains good all night also even when I have not used the vent. It takes a longer time for my SPO2 to fall because I hypoventilate over a larger period of time (which brings down my spo2). I then quickly hyperventilate to get my spo2 back up to normal. (This is what my CapOx home tests have shown). Fairly easy test to take to diagnose hypoventilation (and even hyperventilation). It measures end tidal CO2 - the % of Co2 in each exhale. Hypoventilators exhale a larger % of CO2 with breaths than normal. Hyperventilators do just the opposite.
I have no traech (use a full face mask) and personally think of the Evo as a "very fancy cpap". (Or very fancy bipap would be better). My daytime breathing is not affected in any way by my using the vent at night. Neither better nor worse.
I would like to hear how the AerSleep II goes for you. My I:E (inspiration/expiration) ratio on my OSCAR data also showed around 1:1 or so (about 2.2 inspiration to 2.5 expiration). Normal is supposed to be around 1:2 ratio.
As far as VAPS machines go, I think the Evo (and possibly another AVAPS machine PR makes) have the "auto" breathing rate. To the best of my knowledge, all the IVAPs machines only have a numerical setting for a rate (must put in some number). I was not able to tolerate a rate, so I ended up with the PR Avaps which has worked for me.
You will need to find your own personal sweet spot for both tidal volume and rate through experimentation. I had the same problem initially that Sleeprider described to you in the other thread: I was being hyperventilated by my treatment at the beginning. My lungs felt as if they were going to pop.
When I said that were are on the exact same path, I meant through the medical system (how they handle cases like ours). I tried cpap, bipap, bipap with back up rate, ST (A) ivaps, Astral ivaps, and finally got PR Avaps to work for me through many months of effort and tweaking.
RE: Sleep doctors giving conflicting advice - Sleeprider - 02-10-2023
Thanks Jay51. Great reply and better than anything I could have offered here.
Morgannon, I am detecting the onset of a panic attack. Considering your issues, I don't blame you for that, but you do need to calm down a bit or you could work yourself into a problem. If you have any recent charts I have not seen that show any of these issues you are concerned about. please post them, and maybe we can work through what is going on. Be assured, your current results do not suggest an impending crisis and are actually good other than possible hyperventilation.
RE: Sleep doctors giving conflicting advice - Gideon - 02-10-2023
To ensure that you get the proper machine and therapy I'd want to understand why you vent stats are so high. That is what jumped at me with review of your data. My first instinct is Dial back your breathing volume but that is something I don't want to do without through understanding of what is going on and what the appropriate therapy would be. Other than that what we see on the charts you have provided indicate you are doing well.
I'd suggest to wait and see what your specialist say.