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Can’t treat my UARS — need suggestions
#21
RE: Can’t treat my UARS — need suggestions
Here is some of the data from OSCAR


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#22
RE: Can’t treat my UARS — need suggestions
(05-08-2020, 07:10 AM)Etirpsakdov Wrote: Very interesting. How did you track all that info? I really need to be doing something like that.

I've heard a lot of good things about nasal rinsing and will have to give your suggestion a try. I usually use Afrin nose spray which pretty much clears it all up though.

Now as far as that titration protocol goes, I obviously can't monitor for events and increase the pressure every five minutes......for sure, no way to do this... Did you up the pressure by 1 each night after reading over your OSCAR data and going from there?....yes, first, 5 minutes could become or night or more, it us up to us decide how to self titrating.....from my experience, all my events, flagged or not, are recounted by myself daily: never trust on Resmed  outcomes straitly. Maybe for UARS persons, which awakening all the time, with tens of back-to-sleep transitions, "false" CA'', OA, and so forth, Resmed outcomes should be taken with caution, working only as general guidance at first;

When I used just an APAP on starting pressure of 4cm, it would often work its way up to 9-10 cm by the time I woke up. Maybe this is a sign that I should be starting out with 8-10 as my EPAP? And perhaps a PS of 4? I definitely feel like I'm struggling to get air on 4cm and doubt I'd be able to sleep unless I started on 5 or 6cm.


I've been trying to get a full night's sleep for over a year with the machine and still haven't succeeded. At best I'll get 3 hours or so of sleep, but usually struggle to fall asleep at all or rip the mask off less than in hour into my sleep. I really feel like I should just be able to use the prescribed settings of EPAP 4 and PS 6 and get a decent night's sleep, but it just doesn't work for me. For people with UARS, are our bodies that "picky" to where I'm going to struggle to get any kind of good sleep unless I'm on pretty much my ideal settings...? I really feel like everybody else can just use whatever settings and still get 7-8 hours of sleep, which has literally been impossible for me in over 200 nights of usage......as I mentioned, my suggestion would be starting all over again, as if you had no used CPAP ever, otherwise I think might happens would be more difficult for you to get your tailored parameters. I think this pay off, as the total process would not take more than some 15 days.

I feel like one of my other problems is ENT related... I often feel an "obstruction" in my throat when I'm exhaling. This isn't as bad with the BiPAP as it was with the CPAP, however, I feel like it's nearly impossible to find the settings that will avoid this obstruction on exhale but also provide enough air to resolve any airway resistance. I believe this would be called a palatal prolapse... have also heard of things such as a "floppy epiglottis" causing such obstructions on exhales. If this were the case, I don't know if having surgery to fix that issue would just help me use the CPAP or treat my sleep problem itself.

I guess my next step is to try a cervical collar. I doubt an ASV machine would be necessary but have heard they're good for UARS. Anybody go from BiPAP to ASV with success after struggling to use a BiPAP or CPAP?
- that said, I would like let you know that quite recently , shortly after I first posted on your thread, I decided, for many personal reasons, not to post technical opinions in the Forum anymore.

Sincerily I wish Good luck
Mper
I am not a doctor. Nothing that I say here is medical advice
All my posts include only outcomes/learnings from my own/other therapies and medical literature



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#23
RE: Can’t treat my UARS — need suggestions
Here are a few more screenshots from OSCAR if anybody can help me read these. Trying to figure out if these are real central apneas or flow limitations and I need to up my pressure even more.


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#24
RE: Can’t treat my UARS — need suggestions
Here's some more charts. 

The 2nd chart an obstructive apnea which I find strange. I never have OA events marked so this is different than usual. I had a 0.0 AHI on my study.

I'm trying to figure out why it seems like sometimes I have a slightly higher leak rate that goes down after an "arousal" or disruption in my flow rate. Is it me adjusting my mask or moving in my sleep?

I also am curious as to what the jagged lines in mask pressure and flow rate are. It's like the mask pressure flatlines and then oscillates until my next inhale. 

A common pattern I'm seeing is that I'll be asleep (typical sleep flow waveforms) and then suddenly the flow rate will get all messed up, followed by an increase in flow limitation and then a clear airway event. Then, I'll go back to my normal sleep breathing pattern... and it'll happen again. Continues until I wake up it seems.

Any help or advice would be greatly appreciated. I can provide more charts or zoom in on any of them if there's anything that looks interesting.


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#25
RE: Can’t treat my UARS — need suggestions
(05-08-2020, 07:10 AM)Etirpsakdo Wrote: I guess my next step is to try a cervical collar. I doubt an ASV machine would be necessary but have heard they're good for UARS. Anybody go from BiPAP to ASV with success after struggling to use a BiPAP or CPAP?


Hi. I am new to the forum and have been searching UARS posts. Seems like we have some common challenges. I have a slightly deviated septum and feel obstructions in my throat sometimes and during one of my in-lab sleep studies they observed snorts/brief snores (don't know the technical term for these) which woke me up. This also happens to me sometimes if I fall asleep on the couch or while sitting in a chair meditating. I ordered a cervical collar earlier today to see if it helps. Had a phone appointment this week with a well known ENT who specializes in sleep and he thinks I may have Epiglottic Laryngomalacia or Expiratory Palatal Obstruction both of which he said may not allow PAP therapy to work unless addressed surgically (this was a bummer for me to hear).

Regarding your ASV question, I started out with an AirSense 10 AutoSet and could not fall asleep with it. Upon the advice of someone on another site, I turned off auto, set the pressure to a constant 7cm, and EPR to 3. I noticed a definite difference, but still not ideal. When I listened to this podcast episode with Dr. Park and Dr. Krakow:

[as I am a new member to this forum, I received a notification that I cannot yet post links. Google Dr. Krakow Dr. Park UARS ASV and you should see the podcast episode on Dr. Park’s website, titled “Which is Better for Insomnia: CPAP vs. ASV”]

Dr. Krakow's enthusiasm and outcomes of the study he published last year in The Lancet (haven't read the full study, just listened to his comments about it in this podcast episode) really sold me on ASV so I bought one from Secondwind and it arrived last week. I am having some difficulty getting started with it (details in the first thread of my post history, cannot add URL yet since I am a new member here) I plan to be persistent and try various settings on my ASV for a while and if it doesn't work out may try BiPAP next.

On multiple sites, I have heard of mixed results from UARS folks who've been patients of Dr. Krakow. Part of that I think though is simply because UARS is a complicated and difficult condition to treat, even if you're the best Dr. in the world.

I wish you success and am eager to keep an eye on this thread.
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#26
RE: Can’t treat my UARS — need suggestions
I am exactly the same way. I have a slightly deviated septum and can feel an obstruction in my throat. I can even feel it when I’m awake sometimes... it feels like a floppy piece of tissue. I’ve read Dr. Park’s posts about expiratory palatal obstruction. I can’t get cpap or BiPAP to work AT ALL and am considering seeing Dr. Park to get everything figured out. I feel like no other doctors have a clue what to do.

I’ve seen second wind... almost bought a machine from them. I’ll read more about Krakows thoughts on ASV.

PM me if you want to discuss everything more. Best to you as well.
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#27
RE: Can’t treat my UARS — need suggestions
(05-31-2020, 07:20 PM)Etirpsakdov Wrote: I’ve seen second wind... almost bought a machine from them. I’ll read more about Krakows thoughts on ASV.

PM me if you want to discuss everything more. Best to you as well.

My experience overall with Secondwind was good, but I do wish I'd known I'd be getting such an old machine when I bought my ASV from them the other week. Had to get a prescription also, which my primary care doc provided.

They had the AirCurve 10 ASV in stock and I just asked for the one with the lowest runtime which was only 32 hours. However, based on the serial number it looks like it was manufactured all the way back in 2014. So if you get anything from them, you may want to first get the serial number or at least the relevant parts of it.

Happy to talk more and have sent you a PM.
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#28
RE: Can’t treat my UARS — need suggestions
First, pretty sure it's strongly recommended not to discuss therapy issues on PM.

Second, on ASV: there's no magic in it, and I think many people over interpret Krakow's claims. Read the details of his studies, and the types of patients he includes in them, and also what he does say about ABAP (which he also promotes). Or consider his latest study only compares CPAP and ASV.

Your FL numbers and graph suggest you have very little problem with breathing restriction on your current machine and settings.
Caveats: I'm just a patient, with no medical training. And my first experience with xPAP was fairly recent. So I'm somewhere along the path of a steep learning curve.
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#29
RE: Can’t treat my UARS — need suggestions
(05-31-2020, 08:50 PM)slowriter Wrote: First, pretty sure it's strongly recommended not to discuss therapy issues on PM.

Second, on ASV: there's no magic in it, and I think many people over interpret Krakow's claims. Read the details of his studies, and the types of patients he includes in them, and also what he does say about ABAP (which he also promotes). Or consider his latest study only compares CPAP and ASV.

Your FL numbers and graph suggest you have very little problem with breathing restriction on your current machine and settings.


Writing to acknowledge your comment about PMs. I'm new here so still learning the rules.

May I ask, what is "ABAP", I am not familiar with this term and several Google searches turned up nothing for me.
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#30
RE: Can’t treat my UARS — need suggestions
Auto bilevel; like the vauto. I meant to write ABPAP.
Caveats: I'm just a patient, with no medical training. And my first experience with xPAP was fairly recent. So I'm somewhere along the path of a steep learning curve.
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