UARS Diagnosis - Seeking Advice on Path Forward

[ayyzee23]

Hi All,

Apologies in advance for the novel... My (healthy 30yo male) sleep issues have existed for most of my life, but they really started to dramatically affect my quality of life beginning in college about 10 years ago. I have a family history of sleep apnea (my dad and all of my uncles and aunts on his side of the family). Back in college, I did a sleep study and it showed I had mild to moderate sleep apnea. I tried CPAP therapy but was young and couldn't stick to it. It was a long time ago but IIRC, breathing out was a struggle with that machine. A few years went by and I went to an ENT who noted that I had a deviated septum. I received a septoplasty and turbinate reduction which drastically improved the airflow through my nose. 

A year or so following the surgery, I did another sleep study (see GDrive link below) which showed that I no longer had sleep apnea with an AHI of 1.4, RDI 1.5, REM AHI 0.0, Supine AHI 3.9, PLM Index of 27 (see GDrive link below). Part of that sleep study was an MSLT and the Dr. felt that due to a sleep latency of 5:25 and 2 REM onset naps, a narcolepsy type 2 diagnosis was appropriate. I went through all of the possible treatments with no success. 

I then moved to NYC and met with a top sleep neurologist at Mt. Sinai who reviewed my studies and said that my results were in fact not indicative of narcolepsy and adjusted my diagnosis to idiopathic hypersomnia. He had me do another sleep study recently (see GDrive link below). Unfortunately the sleeping conditions in the lab were not very comfortable, so I only got ~4 hours of sleep. It was determined in this study that I have "very mild upper airway resistance".

I give the above background to convey my struggle to find a diagnosis, and I come here to ask for guidance regarding next steps. My current doctor does not seem to be well versed in UARS and I'm not even sure whether that is a diagnosis that I should rely on for the path forward. He said he could prescribe me a CPAP but that it's only 20% effective in his experience. I've read on this forum and Reddit that bipap seems to be more effective for UARS. I'm willing to pay whatever amount of money out of pocket to find a resolution, so whether that is a top tier bipap / ASV machine, a DISE, surgeries, I don't care.

1. How could my study in 2022 not be diagnostic of UARS but the one I did recently be diagnostic of UARS?
   
2. Should I go straight to bipap / ASV if money is no object? 
   
3. Is DISE reliable and/or worth it to dive deeper into the UARS diagnosis?
   

I feel like I'm starting to go crazy with the amount of doctors I've seen. One thing is for sure, my sleep quality has declined over the past decade. The daytime sleepiness, fog, memory and recall issues have been exacerbated as well. Let me know if there is any additional information I can provide that would be helpful. I appreciate any guidance.

It won't let me post a Google Drive link or add attachments even though I made 4 posts. I will try replying on top of this post with a link. If that doesn't work, I'm happy to share over DM. Not sure what else to do.

EDIT: It still won't let me post a link or add a PDF, and the JPG file size is too big so I'm out of options.

Best,
Alex

[OpalRose]

Please follow these  instructions for attaching images and files.

https://www.apneaboard.com/wiki/index.ph...pnea_Board

[ayyzee23]

Confirming I did read through that post, but the sleep studies I have are in PDF format and are multiple pages (7 pgs for one and 8 pgs for the other). When converting to JPG, the file size is too pig to post. Nor can I post them in their <1MB PDF format or a GDrive link because of the 4 post "new member" limitations.

[Sleeprider]

The characteristic feature of UARS is flow limitation, with and without hypopnea and obstructive sleep apnea, but nearly always includes respiratory effort related arousals, which is why you always feel tired, and why it is so difficult to fall asleep. Here is some reading for you on the Apnea Board Wiki:
https://www.apneaboard.com/wiki/index.ph...limitation
https://www.apneaboard.com/wiki/index.ph..._and_BiPAP

The problem with all the expensive diagnostics you have purchased, is that they are performed by individuals that simply have their focus on sleep medicine, otolaryngology, pulmonary issues and everything else except your problem. Also, insurance companies have created a very narrow range of conditions for which they will reimburse the costs of a CPAP or BiPAP. DISE is a great way to find yourself in surgery and ending up sicker. Dump the specialists and get a Resmed Aircurve 10 or 11 Vauto. You could ask your general primary doctor for a prescription, or just buy one on Craigslist, Marketplace, or Dotmed without one. The Aircurve Vauto will let you self-diagnose a flow limitation/UARS pattern, and can solve it by using low exhale pressure to keep your airway stented and pressure support to provide a mechanical assist to inspiration, eliminating the increasing airway resistance with higher inspiratory flow. It won't be covered by insurance, but that doesn't mean you don't need it.

[ayyzee23]

Thank you for your response, Sleeprider. I am willing to go fully out of pocket and it sounds like that will be what's required to move forward with treatment. Is there a material difference between Resmed Aircurve 10 or 11 Vauto? Happy to pay extra for the newer model if it means a higher chance of successful treatment. Will give the links you sent a read after work today. 

[DaveSkvn]

Hi Alex,

If you're interested in UARS you might want to have a look at this video (you may get a bit of a jolt at 2:05).

https://www.apneaboard.com/forums/newrep...?tid=48514

There is another, more recent, video on why UARS is so difficult to diagnose...

https://www.apneaboard.com/forums/newrep...?tid=48514

You can spot OSA easily because (A) the air flow stops completely and (B) the blood oxygen (SpO2) becomes "desaturated". You can add up the As and the Bs to get the AHI index which gives a clear diagnostic criterion. This in turn means the money men can move in and prepare an industry to take advantage of the condition. With UARS the air flow does not stop and there will be no "desaturations". There is no clear diagnostic criterion. Insurance/Health systems therefore say it doesn't exist. No professional will spend much time dealing with it when they can focus on OSA.

I've had 3 hospital sleep studies to try and work out why CPAP wasn't helping me stay awake. They found nothing. Last December I found the OSCAR software, put my SD card into the PC and it showed absurd breathing patterns - breathing rates up to 50 breaths per minute (should be between 12 and 20).

As @Sleeprider says I would not rely on medics getting to the bottom of your issues - my attempts got nowhere. Get a Resmed Aircurve - that is BiLevel. We might disagree if VAuto is necessary (i.e. if the auto algorithm is much use to you) - but it won't do much harm. It will have a "dumb" fixed mode if you want it. The first step is to get used to sleeping with CPAP - a low pressure (8 or 9 cmH2) will do at first. When you've got a few days of data, upload it to OSCAR and have a look at the "flow limitations" box. If it is blank then you have no sleep breathing issues - you can then move on to other explanations for your fatigue. If it has some "activity" then you are in the UARS/Flow limitation zone and can start looking for treatments.

To get controversial for a moment, It is my opinion that the "flow limitations" registered by Resmed are only a subset of "flow limitations". They are specifically chosen to help the auto algorithm when managing OSA. They may not be the whole story if your issue is UARS. So don't think a relatively low Flow limitation score on the CPAP means you don't have a flow limitations issue. In my experience flow limitations of 0.1 and 0.2 (out of 1) on Resmed can mean serious issues. My view is if OSCAR has a 95% flow limitation score of 0.05 or above you would benefit from taking action.

I've knocked up some software to look deeper at flow limitations - based on Resmed S10 SD card data (https://www.fortaspen.com/sleep/). In the "introduction" page you can see two heat maps showing the difference in flow limitations for (A) a night in pure CPAP mode and (B) a bi-level like mode called EPR. The EPR makes a considerable difference so I would go straight to bi level - and have a look around to see if you can find second hand - certainly for the diagnosis/confirmation stage - it be quicker than getting a prescription and waiting for a machine.

It would be worth checking this stuff out before considering a DISE. If your problem is not sleep disordered breathing then surgery is of little use (and painful and risky).

Good luck

[Sleeprider]

The Aircurve 10 and 11 are equally capable machines with , and no therapeutic differences. It is not worth extra to upgrade to 11 unless the smaller size and newer model is of value to you. Both have minor advantages, and you want to make the purchase of tubing, humidifier tubs and filters as convenient as possible for your location as those parts are slightly different between the models.

[donsburg]

I've knocked up some software to look deeper at flow limitations - based on Resmed S10 SD card data (https://www.fortaspen.com/sleep/). 

Hi Dave,

This looks like an incredible resource! I'm very interested in flow limitations for my own therapy. Unfortunately I'm using a Lowenstein Prisma machine. If you ever wanted to collaborate I'd be happy to share my data and provide feedback/testing etc. Afraid I have no coding skills though.

[ayyzee23]

Thank you, Sleeprider and DaveSkyvn! I will report back once I've obtained a unit.

[meraa]

Possible explanation to your PSG UARS outcomes (as also mentioned in one of the replies): some PSG reports, and Resmed's treatment implementation so far, don't recognize the need to include SUB-APNEIC events, like UARS & snoring  into RERAs. So it is just a decision about where on the scale they can recognize and hit the alarm bell for available treatment.
ASV Auto fixed my OA's but until recently I was suffering from sub-apneic periodic clusters, which I could see in OSCAR Flow Rate time histories.