Need advice on UARS and CPAP treatment

[Silvia10]

you could post your question on a dutch forum, there is a guy who knows a lot about uars. Its is a dutch forum but all dutch people speak good english. https://forum.apneuvereniging.nl/

[Jazst]

Brazen and Silvia10, thank you both for your advice and encouragement. Wish you'd been here about a year ago!

@Brazen
More or less every single one of the plethora of various specialists I've seen regarding my fatigue, anhedonia, etc., has told me I'm perfectly healthy and I should just exercise more and clean up my diet. I told all of them I'd tried a bunch of diets, from keto to GAPS and Failsafe, and did both cardio and strength training for years, but they just kind of went "uh-huh" and insisted there was nothing wrong with me. Some of them also told me I’ll just have to get used to being tired all the time. Yay.

The problem is I live in Slovenia, and while I can’t complain about our public healthcare when it comes to basic stuff, it’s really hard to get help (even from private practitioners) when your symptoms don’t really point to an obvious diagnosis, and our doctors are way behind on certain things compared to the US. You can’t get Adderall at all, for example, let alone things like ketamine or psylocibin. Not legally and under medical supervision, anyway.

If you don’t mind my asking, what’s the med that helps your fatigue? That’s basically 99% of my problem, I think everything else is just a product of constantly being tired.

@Silvia10
Yeah, I know bipap is preferable for UARS, but even a CPAP was pretty hard to get here. Thanks so much for the WatchPAT link! I’ve never heard of it, but it looks interesting. Probably can’t get it in Slovenia, though, and I’m guessing the device is too expensive to just buy one outright. Is it supposed to be better for diagnosing UARS than a full polysomnography done at a clinic?

Thanks for pointing me to the Dutch forum as well – I actually know a couple Dutch people and most of them really did speak English very well, so I’m sure that won’t be a problem. I’ll check it out when I get the time, though it might take a while, what with having a month-year-old at the house, haha.
Are you dealing with UARS as well? I’m guessing you came across this post searching for UARS-related stuff

[jcoleman]

First off, a lot of your symptoms seem to match what I have heard/read/experienced with UARS, which can be maddening. It is a tricky thing to run down, but it can me done. Doing a lot (and I mean A LOT) of searching/reading on UARS/Bi-Level here and at CPAP talk has been tremendously helpful for me.

Looking at your charts, if it were me, I would focus on two things. First of all, those flow limitations are pretty profound to my eyes. Are you aware of anything that seems to be blocking your breathing? Is your nose stuffy (either when going to bed/lying down or first thing in the morning)? Does your nose plug on one/both sides when you lie in a certain position? Does your throat close when you touch your chin to your chest? Do you have GERD or any other sinus/respiratory issues that you know of?

More pressure support could help with your flow limitations, but since you are already doing 3EPR (the max for your machine), there might not be much else you can do without a bi-level. One thing here, though, make sure you don't set your minimum pressure below 7 (since your machine cannot go below a pressure of 4). That is, to get the full EPR of 3 you need to have inhale pressures of at least 7.

More qualitatively, I would focus in on arousals. Seems to me that your FL and/or leaks are causing arousals, and I would be curious if these issues are much worse for you in REM sleep. Did you sleep study say anything about events in REM vs non-REM?

Anyhow, probably not much help here, but I do think there is hope. In my uneducated, layman, out-of-my-depth appraisal, I would focus on getting flow limitations as low as possible, keep leaks down as low as possible, and look for a nightly breath curve that is far less dynamic and ragged.

[Jazst]

@jcoleman

Thanks for your detailed reply and suggestions! Unfortunately, I no longer have the CPAP machine, as I gave up on it a while ago. However, I've checked and it seems there is a clinic in my country that does WatchPAT tests, so I'll look into that if it really is effective for diagnosing UARS and then try to get a BiPAP machine.

Yes, I do in fact have a deviated septum and inferior turbinate hypertrophy and related chronic rhinitis, so my nose is almost always at least partially blocked, which I'm sure is at least partly to blame, though I've suffered from chronic fatigue, etc., since at least my teens. I'm scheduled for surgery in about a month, though I've read it's rarely effective for sleep disorders. I also have GERD, but likewise only for the past year or so.

My throat doesn't really close when I touch my chin to my chest, but I've definitely noticed my jaw tends to drop and my throat closes if I try to sleep on my back, if that's relevant. I really only sleep on my side or stomach, though - or at least I fall asleep that way, but I filmed myself for a couple of nights and it turns out I often roll onto my back and sleep in a really weird position, with one leg at a ~45° angle and the other ankle resting on the raised leg's knee, lol. I also reportedly snored a lot at that time (if I recall correctly, my nose was really congested), so it might have something to do with that.

I looked at my sleep study results again and yes, my REM index was 11.5 (all hypopneas) vs. a NREM index of only 2.7 (mostly hypopneas), but they either didn't track RERAs, or I had none, which I think even the pulmonologist who finally prescribed the CPAP machine said was hard to believe. What does the high REM arousal ratio imply?

I've attached my full sleep study results in case you're interested and willing to take a look. Mind that I've only been overweight for the past 2.5 years or so, while my issues have been going on for at least 15 years. I've been actively working on getting in shape again recently.

Thanks again for your insights, much appreciated!

[Brazen]

@Jazst
Congrats on the new baby!

It is so incredibly frustrating when the medical community can't find the reason for your symptoms so they determine it must all be in your head or lifestyle driven.
The US is a complete mess when it comes to mental health, so I hear ya on that. There is starting to be a decent body of research on things like ketamine and psylocibin, hopefully that will lead to treatment options for conditions resistant to other forms of treatment.

For ADHD treatment I take Vyvanse (lisdexamfetamine dimesylate). Chances are if Adderall isn't available there neither is Vyvanse.
I'm also working on behavior modifications to improve executive function, things like writing out a to-do list each night for the next day, setting 15 min alarms to focus on work in short bursts, limiting distractions like minimizing everything on my computer except for the one thing I'm working on, etc.  I also read Driven to Distraction by Dr. Edward Hallowell, some helpful information and tools. 

Hope you can find some help and get some relief!

[jcoleman]

@Jazst

Glad that was at least somewhat helpful, and many of your comments echo either things I have experience, or have seen in immediate family. Again, I am by no means any kind of an expert, but I'm happy to share what I have done and what has seemed to work. Also, apologies, I could not open that .zip file. For some reason, I am not allowed to download.

You comments about nasal/sinus congestion seem similar to me. I've never gone down the ENT route, mostly because I view surgery as a last resort, but that's me.

I have had nearly constant issues with nose stuffiness in the past, most of which I have cut down through really paying attention to what stuffs me up and not doing those things. A big one for me was dairy, so I am dairy-free most of the time (e.g. maybe one dose of dairy per month, if that). My nose also stuffs up when I lie on my right side, so I make a conscious effort to mostly stomach sleep. I seem to have a visceral reaction to sleeping on my back, meaning I seem to just stare at the ceiling and my mind races when trying to go to sleep on my back (I chalk this up to having an enormous tongue and thus probably much worse apnea on my back, especially during REM sleep, which is why I asked about that). I also find myself pretty sensitive to wood smoke as well, so I limit my time outdoors when air quality is bad either due to summer forest fires or winter inversions.

With nose/sinus stuff, I've also had a fair amount of success with various forms of nasal irrigation. I use the Navage off and on, but I've also been using Xlear Max a couple of times a day. I also find that getting my humidity settings right and managing leaks to the best of my ability really helps keep things happy as well.

One easy test to see if nasal congestion is a major issue for you would be too try and take an antihistamine like Claratin or Allegra (or Zyrtec or Zyzal, etc.) before bed. There's a doctor in S. California (Dr. Falcon) that swears by this for UARS. For me, it didn't seem to do much, and I don't love how anti-histamines make me feel the next day. If you try this, just make sure that you don't use Benadryl or another antihistamine that causes drowsiness (since this will affect your sleep quality) and make sure your antihistamine doesn't contain pseudoephedrine (like Claratin-D, for example). For a one-day test, you could even use a steroid like Afrin just to see if that is the issue (just make sure to not continue use, it is addictive). Something like Flonaise might be helpful too.

GERD is something I also work to manage (since it seems to make my sinus stuff way worse), doing the basic things. No food at least three hours before bed, limit carbs/sugar at dinner, keep portions sane, etc. Basically, I pay attention to what food choices/timing seem to allow my sleep to be as restful as possible and do that. Meds to control/limit GERD might be helpful here too as may supplements (e.g. if you have low stomach acid, Betaine HCL, for example).

As for the snoring, I've read that people can have some luck using simple means of preventing back sleeping, such as getting a t-shirt with a front pocket in it, wearing it backwards, and putting a tennis ball in the pocket (I think that is from Dr. Falcon as well). In addition, if snoring is coming from the tongue being too large, weight loss can help here quite a bit (it is my understanding that one's tongue gains weight/size just as their body does).

The thing that is the hardest about UARS (or UARS-like symptoms) is that it seems to be 100% subjective. Not to mention, most sleep doctors won't really know how to help, and even PAP machines aren't really built to treat this in their "auto" modes. So, it is a lot of trial and error, using how you feel as the main guide to what works and what doesn't.

After being on CPAP/APAP since 2009, in the last few months I feel like I have *finally* made some progress in chronic fatigue/brain-fog/anhedonia that I feel like I have had my whole life. I don't feel like I am constantly fighting against drowsiness, and I don't feel like most days are simply there to be endured. I've recently moved to a bi-level machine, which has taken things to the next level, but I am still tweaking. Tweaking thanks to this forum and CPAP talk. Case in point, my original CPAP prescription was a continuous pressure of 8. To actually feel better, on my APAP, I found that I needed a minimal pressure of 13, 14 being even better. EPR of 3 made things even better.

If/when you get another machine, if you can, I would push for bi-level, and then learn to manage flow limitations, leaks, and your overall arousals and breath smoothness. There are TONS of threads on each these in both places. But, more than anything, go by how you feel and keep going until you feel better. Perhaps PAP cannot solve all, or even most of the issues here, but with forums like these, the resources exist to take control of your own therapy and keep trying until you get the results you are after.

[fishfinderG]

jcoleman   Do you happen to have any OSCAR flow chart examples of what your breathing looks like now that your UARS is well treated?  I haven't seen a lot of people with UARS report success so I'm curious what got you there and how your data looks.  What did you go off of to know that you ultimately needed such a high pressure?

Apologies if this is hijacking a thread... didn't know the best way to ask jcoleman specifically while still having any response be useful to other readers.

[jcoleman]

@fishfinderG

Sure, happy to post what seems to be evidence of progress. I'll do crops to zero in on flow. Also, again I am no expert. I am mostly fumbling my way towards not feeling like wet garbage every day, but I am happy to share what I have done and what has seemed to work in hopes that it might help someone else.

The first attachment is the last night on my AirSense 10 (APAP). Settings 14-20 EPR=3 (pressure usually stuck at 14 all night, my apneas are totally managed, AHI<.5, at ~ 10).

   

The second attachment is the first night on my AirCurve 10 (PS 4, 8-25).

   

Notice how much less ragged the overall curve is? Long stretches of low variation/amplitude. BTW, those flags are FL of 30%. And, these are not ideal settings.

Now, as far as individual breaths go, attachment 3 shows what I got a lot of on APAP on the top and what most of my breathing looks like now on the bottom. I am still tweaking things, and some nights are better than others, but I see a lot of this on bi-level (far fewer dimples, much more rounded curves).

   

Even though a lot of these charts look good, the main things I am doing is going with subjective feeling as much as possible. I use how I feel each morning/day as an overall guide, with the data/charts as a tool to point me in the direction of another thing to test. I try not to let metrics dictate my experience, instead using metrics to guide towards better experiences.

[fishfinderG]

Very fascinating. Thank you for sharing @jcoleman. I have a lot of dimples in my flow but in my case it's a mix of irregular shapes and often my heartbeat being visible in my flow rate which makes it difficult to tell how rounded things actually are. I'd love to try a bipap just to see if it smooths things out like you saw but I don't think I can convince my doctor it makes sense given that at EPR=3 at 8.6 gets rid of all real events and my only lingering issue is waking up throughout the night.

In any case, thank you for sharing. I think it's important that we have examples like this searchable for folks trying to learn about what improvements to treatment can look like.

[jcoleman]

@fishfinderG

Glad that was helpful. Personally, I would love it if there was some sort of udemy or other resource that did a deep-dive how to read these curves (especially in spotting flow limitations and arousals, with lots of examples of varying clarity/obviousness). It has taken long time, and I feel like a lot of what I glean has just come from the osmosis of reading so many threads.

Personally, I just purchased a bi-pap on my own. I just felt like I had gotten as far as I could go with APAP/EPR and I still wasn't "better". Even with PPO insurance, my cost of an APAP, for example, is actually more than I could get a new one from [DME Link Removed]Supplier #1
 I was able to find a used AirCurve on FB Marketplace for a little over $200. It has high hours on it (~ 13,000), and I had to fix the start/stop button when I got it, but I feel like it has already paid for itself. If I get even a year of use out of it, I feel like I am way, way ahead.

With these arousal/flow-limitation/UARS issues, I feel like a lot of us are really on our own, which makes progress difficult. However, it's been my experience that taking in a ton of info (thank goodness for forums like this), looking at lots of my own data, doing experiments following hunches, and knowing that feeling better is all I care about, progress can be made. It may just require me to take full responsibility for my treatment and use every tool I have available.

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