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Suspected UARS - Question Re Next Steps
#1
Suspected UARS - Question Re Next Steps
Hi All, 

I've been lurking on the forum for some time, but never posted.  I have a number of questions I'll get into here, but will try to summarize at the head end: 

Summary: 

I've experienced night terrors and parasomnias beginning around age 16.  Perhaps around age 19-20, I began experiencing daytime sleepiness off and on.  The EDS has gotten progressively worse over the years.  I'm 35 now.  I have had multiple sleep studies - all negative for apnea.  Today, I got result of an in-home study.  The reviewing MD says the study results do not indicate apnea, but I suspect UARS.  I'm interested in your opinions re the sleep study, and if indicative of UARS getting an Rx for a BiPap or purchasing a second hand unit, whichever model you'd recommend, and then self-treating. 

Background: 

As noted above, I have had multiple sleep studies, one about 10 years ago, another 3-4 years ago, both negative for apnea.  

Over the past year or two, my sleep has been getting worse, so I turned to this board to see if apnea/UARS might be a possible diagnosis.  For the past week, I've been sleeping on a wedge pillow w/ cervical collar, and using a backpack to keep me from going supine, which have helped a lot.

I took a WatchPAT home sleep study last night.  During the night, I had a few confusional arousals, which generally coincided with me snoring/ having respiratory arousals.  Fast forward to today, and I got the following results (can't post images b/c I'm a new member): 

total RDI events over sleep time of 6 hours, 49 minutes: 96
pRDI (all night) 14.1
REM pRDI: 34.5
NREM pRDI: 8.7

pAHI total events: 7 
All-night AHI: 1.0
REM AHI: 3.5 
NREM AHI: .4

No oxygen desaturation events.  
Mean nadir: 94%

As noted above, the reviewing MD indicated that I don't have sleep apnea, but having a pRDI of 14.1, and a REM RDI of > 30 sounds like UARS to me. 

So, Question 1: do forum members think that this sleep study points to UARS? 

If this does look like UARS, what's the best course to proceed? 

My understanding is that the Resmed VAuto is the best device for those w/ UARS.  I found a used device for $500, which is one option.  If I go this route, any suggestions on verifying that the device is in good working order?  

Another potential option is that I could ask an MD friend to write me an Rx for a PAP.  I think he would be willing.  However, my understanding is that insurance will typically only cover a CPAP and not a BiPap like the VAuto.  

I should specify that I live in the US.  If my doctor writes me an Rx for a CPAP, could  I use my FSA (Flexible Spending Account) funds to buy a BiPAP? 

Thanks in advance for all your help.
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#2
RE: Suspected UARS - Question Re Next Steps
It certainly could be UARS. As you are aware a high RDI/ low AHI is a characteristic that often accompanies UARS.
The common approach is to get a CPAP which will fail, though a ResMed will do better than others, preferably the AutoSet.
Following the failed CPAP is frequently a BiLevel. OK, not frequently because most Sleep Doctors don't recognize UARS as a treatable or defined illness.
If you are going self-pay, see if you can manage the BiLevel (ResMed VAuto, and get the script for a BiLevel (4-20, PS=4, until results are seen suggesting different settings)
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#3
RE: Suspected UARS - Question Re Next Steps
What should I look for in a used VAuto (# of hours, etc.)

Also, recommendation on type of facemask? I believe the Resmed P10 is a popular choice?

Thanks for your help.
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#4
RE: Suspected UARS - Question Re Next Steps
(04-21-2020, 02:24 PM)theclient1437 Wrote: What should I look for in a used VAuto (# of hours, etc.)

Also, recommendation on type of facemask?  I believe the Resmed P10 is a popular choice?

Thanks for your help.

Run hours is what I looked for: I looked for hundreds of hours or less, at a good price.

And yes, the RDI suggests UARS.
Caveats: I'm just a patient, with no medical training.
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#5
RE: Suspected UARS - Question Re Next Steps
I'm so sorry it took you multiple years and tests to finally get the information you needed. My AHI was 3 and my RDI was 13 when I got tested a few years ago, and the ENT told me I was fine. Last year I was re-tested by a fellow dentist and an ENT who were actually knowledgeable and I was diagnosed with "Inspiratory Flow Limitation - UARS."

Four month ago I tried a CPAP which failed, then bought an APAP which failed, and now I'm using a ResMed VAuto which is helping.

Down the line, I'm going to be doing SFOT (surgically facilitated orthodontic treatment, also known as SARPE [Surgically Assisted Rapid Palatal Expansion] or DOME [Distraction Osteogenesis Maxillary Expansion]) to widen my jaws, which also widens the sinuses alleviate nasopharyngeal flow limitations, and gives your tongue more room in your mouth so it doesn't impinge on your airway. Definitely look into orthodontists in your area who perform this. Here's an interesting case in which depression went into remission following palatal expansion https://www.ncbi.nlm.nih.gov/pubmed/23210848. I wouldn't be surprised if you suffer from mood disorders as it is common with UARS.

If there are still flow limitations from the oropharynx, MMA surgery is indicated to cure the UARS.

Best of luck, feel free to ask me any questions about those treatments.
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#6
RE: Suspected UARS - Question Re Next Steps
Hi UARS.DDS, thanks for your reply.

A bit of further background: I have a *gigantic* tongue, and large tonsils (Dr.'s frequently remark on them upon inspection).

As a child, I had palatal expansion. About 7 years ago, I had a turibnaplasty, sinuplasty, and septuplasty due to recurrent sinus issues. While I stopped getting as many sinus infections, my sleep symptoms still worsened/persisted.

Due to the parasomnias I experience, I have tried most commonly-prescribed sleep drugs, namely z-drugs, benzo's, etc. None was a solution to my sleep issues, though klonopin helped somewhat (probably because it reduced my REM sleep during which I suffered flow limitations/RERAs).

Recently, I saw another sleep doctor, who wanted me in for a lab sleep study. However, because of COVID, the best I could do was the WatchPAT study. When I asked this new sleep physician about UARS (before the WatchPAT study), he replied that he didn't believe in the diagnosis, insofar as the treatments for it are the same as those for apnea (CPAP, dental devices, surgery, etc.), which isn't exactly an encouraging sign.

In terms of my path forward, I purchased a used Resmed VAuto, much to my wife's chagrin, and intend to self-treat. My wife's concern is that I may harm myself, and that I'm essentially treating myself with what in her opinion amounts to: 1.) an "extreme" treatment measure for something that's 2.) a "borderline" (i.e., not officially classified as sleep apnea) case.

Any reassurance that folks in this forum can provide for my wife's benefit in terms of this not being a risky treatment would be helpful.

Also, I'll add that I've had at least decent luck treating my suspected UARS with positional therapy (backpack, wedge pillow, cervical collar), but not to the point that I'm willing to forego testing the BiPAP.

Finally, I'm very encouraged that I have something fitting an accurate diagnosis for the first time that I can recall.
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#7
RE: Suspected UARS - Question Re Next Steps
On your wife's concern, tell her not to worry. Recommendations here are typically based on the same titration protocols that sleep labs use.

When you're ready to get started, just ask and someone can suggest settings.
Caveats: I'm just a patient, with no medical training.
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#8
RE: Suspected UARS - Question Re Next Steps
Hi All, 

I just had my first night with the Resmed VAuto.  I slept perhaps 3-4 hours but was in bed from roughly 9:30pm - 6:30am, but I actually feel better this morning than I do most days.  I'll post OSCAR logs in a subsequent post.  From a non-metric standpoint, I had a few issues, which as I'll detail below are: 

1.) Resmed P10 nasal pillow comfort issues
2.) Air temp/humidity comfort issues
3.) Possible inhalation pressure issues 
4.) Tubing placement

1.) Resolved & Unresolved: Resmed P10 nasal Pillow Comfort Issues

I had some issues with the nasal pillows.  

My first unresolved issue is that the nasal pillow seemed to chafe the skin below my nose and above my upper lip.  Perhaps this was due to my roughly 3/4c facial hair.  I've trimmed my facial hair, and will see if this resolves things.  Also, has anyone used some sort of moisturizer (e.g., vaseline, etc.) to help avoid this chafing?  Does anyone have any other suggestions?

My second unresolved nasal pillow issue is that I felt some water accumulating just below the pillow, i.e., above my upper lip and below my nose.  Is this most likely fit-related? Or, perhaps rainout/humidity-related?

I also believe that I started off with the pillows too tight around my head (thinking tighter is better).  However, when I lied on my side, the pressure coming from the machine and the general pressure of the pillows against my nostrils felt too strong, so I adjusted the straps, which helped a lot. I would say I've resolved the tightness issue. 

2.) Resolved? - Air temp/humidity comfort issues

I had initially set the temperature of the tubing to 81 degrees F, and the humidity level to 5.  I struggled to breathe with these settings, as the incoming air felt too warm and humid (tropical), and I sort of felt that I was suffocating.  Adjusting the temp to 74 degrees, and humidity level to 4 helped quite a lot. I would consider this issue resolved.

3.) Unresolved: Possible inhalation pressure issues 

For lack of a better description, occasionally, when I would inhale, I would take in too much air to the point that I would feel that I was suffocating.  This seems to me (based on my highly naive opinion) that the max IPAP might be set too high.  What are your thoughts?  I will post OSCAR screenshots later in the day.  

4.) Unresolved: Tubing Placement 


I couldn't figure out how best to place the tubing in order to be able to roll around freely in bed.  Does anyone have suggestions?
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#9
RE: Suspected UARS - Question Re Next Steps
Have you tried a non heated tube like the slimline? I'm using that and have better success with it. The heated tube is too hot and heavy for me. I use that with 6 humidity with no issues. I think I need less humidity though because of congestion. I started on the P10s also. Maybe try the N20s? I like those a little better. What are your pressure settings at?
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#10
RE: Suspected UARS - Question Re Next Steps
Per Bonjour's suggestion, I started at: 

4-20, PS=4
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