Suspect UARS, but sleep study showed 0 RERAs?

[Acinomer]

Hi all, 

First time post here. I'm new to UARS—in fact, not even sure I have it—and am hoping gather some insights from those who've been around this block before. 

I'm a 47-year old male, 150 lbs, 5'11", in good physical shape.

I tic many of the usual boxes for UARS symptoms: 

• Wake up tired/unrefreshed
  
• Insomnia
  
• Occasional snoring/gasping
  
• Frequent awakenings to use bathroom
  
• Teeth grinding (cracked teeth)
  
• Brain fog/poor memory
  
• Anxiety
  
• Cold feet/hands
  
• Headaches
  

And I seem to check many of the risk factor boxes:

• Thin build
  
• Deviated septum
  
• Smaller, slightly recessed jaw
  
• Overcrowded teeth
  
• Orthodontics as kid
  
• Extracted wisdom teeth
  

The symptoms have been with me for many years—probably 10-20. Over the past 3 years, the sympathetic nervous system became very activated (fight/flight), and insomnia became my biggest challenge. I thought poor sleep was the symptom of anxiety, but I had a paradigm shift and now think poor sleep might be what's triggering the anxiety and other symptoms. 

With this shift in perspective, I had an in-lab sleep study performed. The results are attached. I knew I didn't have sleep apnea, but was surprised that it didn't show any RERAs (absolute 0, or N/A on the interpretation). Is it possible to have absolutely zero RERAs (especially with "frequent spontaneous arousals"? The doctor didn't seem to have a whole lot of experience with UARS and wanted to steer the conversation away from that. I wonder if there was an error with sensors during the study, or maybe even mis-interpretation of the results? I don't know what I'd be looking for, but I'm tempted to request the raw data used to interpret RERAs. What specifically would I need to ask for?

I also saw an ENT doc a few weeks ago and he observed slightly enlarged turbinates and soft palette. He too wasn't very versed in UARS so he didn't have an opinion one way or the other regarding a diagnosis.

I understand that UARS is often missed in diagnosis. So, ahead of receiving the sleep study results, I was able to get a hold of a ResMed AirCurve 10 VAuto BiPAP. My thinking was that, regardless of what the test said, I would do diagnostic therapy with the BiPAP. If it helps, then I know what the problem is. If it doesn't help, well, I'm just out the cost of the machine. I mentioned this approach to the doctor and, surprisingly, he was on-board. So, while I didn't need the Rx, I now have it and am "on the grid". The prescribed setting was 5-20, with everything else set to default. I did change PS to 4.4 as 5 seemed to overfill my lungs. Also, I changed Cycle to High for the same reason.

It's only been a few days and I've wrestled with different masks and sizes trying to find the best fit. I really don't yet have any data to share as I've only had maybe a couple hours of sleep with it on. It's been very challenging adapting to it. I'm planning to start using OSCAR once I have some data.

Thanks for hanging in to the end of this long post. My biggest question is this: Am I wise to continue to suspect UARS and do BiPAP therapy?  Or do I accept the sleep study results and move on?

Thanks for your time.

[Gideon]

Post a copy of both your sleep study and your OSCAR screenshots. Let's see what we can see.

If you really want to find out contact Dr Barry Karkow currently in Savannah, Georgia. he is one of the leading experts on UARS. Get an appointment from him and any testing done at his recommended lab, as they will know what he is looking for. And do let us know what you find out in detail please. it may be a bit of a drive, but he is IMHO the best.

[Acinomer]

Sorry about that. Thought it was attached to the original email. Here it is...

[Sleeprider]

RERA is usually a function of flow limitation and is actually easier to see on the Oscar flow rate chart than anywhere else. You are already using an Aircurve 10 Vauto, with PS 4.4 which is probably mitigating flow limitation to a significant degree. We can see flow limitation as a flattening of the inspiratory curve on the flow rate chart. We have a couple wiki articles that may be of interest. Your sleep study is not very useful in confirming UARS but an Oscar chart may be.
Flow Limitation/UARS and Bilevel Therapy http://www.apneaboard.com/wiki/index.php..._and_BiPAP
Flow Limitation http://www.apneaboard.com/wiki/index.php...limitation

[Acinomer]

Sleeprider, thank you. Those wiki pages are a wealth of knowledge.

Is it unusual to have a RERA score of absolute 0? It feels suspect to me, but I barely know enough to be dangerous. I wonder if it's a sensor or interpretation error. Would it be helpful for me to try to obtain the raw data from the sleep study?

I'm looking forward to getting some actual sleep on the BiPAP so I can upload OSCAR reports. So far, I've only gotten an hour or two of sleep with it.

[Sleeprider]

RERA is not easily detected in a sleep study because the criteria for scoring it varies. It may be that an arousal without hypopnea or apnea is "spontaneous". Sleep studies do not normally attempt to detect flow limitations, but your Vauto in combination with Oscar can do it very easily by looking for user defined events for flow limit. Screen those events and look for increases in inspiration time during flow limitation with increases of respiration tidal volume immediately following FL flags and you will start to see where the arousals that are potentially RERA occur. We can talk about how to do this. Start with an Oscar chart, and let's see what it looks like.

If you are having trouble sleeping with the Vauto at your current settings, lets discuss less aggressive pressures and pressure support to get you started.

[Geer1]

Regardless of whether RERAs were scored ideally or not your total arousal index was only 6.8 which is very good and a sign that RERAs and other sleep issues were not present at least the night of this study.

UARS is a grey area even when patients have defined RERAs because many of the symptoms somewhat related to UARS are not specific to UARS.

I fall into this same category with a lot of the same symptoms as you (wake up unrefreshed, bruxism, brain fog at times etc) although unlike you I have a high arousal index (54 and 37 in my two sleep studies) supportive of a sleep issue whereas your sleep study appears to indicate sleep is decent (minus perhaps insomnia).

Since you already have the equipment you might as well give it a whirl for a while. 5-20 pressure range is reasonable but 4.4 PS is a bit high for someone with no known breathing issues and 3 would be a more regular starting point (and what level majority of PAP units are limited to). It will take weeks/months to fully adjust to PAP especially because you don't have obvious breathing issues being corrected (worse your breathing is the quicker you adapt) and potentially you may find it advantageous to your sleep quality even if breathing doesn't appear to be the issue. For example I am told I don't have apnea but yet I obviously sleep better with PAP, I believe in part due to the humidity (I used to have issues with dry bloody noses etc).

I am still struggling my way through to figuring out what is wrong with my sleep/health and how to improve it. The main things that have caused improvement and fairly significant improvement at that is elimination of dairy and gluten. I challenge anyone with unknown health issues (and doubly so if they have concomitant IBS or nasal congestion) to try elimination diets (6-8 weeks elimination and then reintroduction) of common foods that cause people issues. Top allergy foods are common issues (dairy, gluten, soy, nuts etc) and paleo diet is one that many people do well on because it gets rid of most of these. Fodmaps can also be a common issues and low fodmap can help it. I personally improved from this significantly and now know multiple others including my mother that saw noticeable improvements with targeted elimination diets and then diet changes pending the findings. Unfortunately this is something not often brought up by doctors (although it was an internist that first recommended I try them) because each case is different, there are no helpful tests (only elimination diets) and they can't be certain they will help or if they just restrict a persons diet.

[Acinomer]

Geer, thanks for the explanation. I think I had fewer arousals during the study because I took a much higher dose of clonipin (2mg) than I usually take at home (.25mg). I did this because even under normal circumstances I have a tough time sleeping. And I wanted to make sure I got at least some sleep during the study. 

The general takeaway from all the advice I've been given is to just try the VAuto and see if it helps. That's my plan. And will post OSCAR results. Actually, attached here, are a couple charts. Not sure this is helpful since it was during a period when I got only 1.5 hours of sleep.

Yeah, I'm going to lower the PS level tonight. The overinflating of lungs keeps capturing my attention while trying to fall asleep, and alas, prevents me from doing so.

Thanks again.

       

[Sleeprider]

Acinomer, your brief use of the machine reveals no flow limitation or changes in pressure. Based on my own experience, it can be difficult to relax and sleep with pressure support at this level without prior experience with bilevel therapy. It is stimulating to have that mechanical assist to your breathing effort, and I'm sure it was disruptive to your ability to sleep. My suggestion is that you reduce pressure support to 2 and limit the maximum IPAP pressure to 10.0.

[Geer1]

Fyi Klonopin is a contraindication for apnea so although it may have improved arousals during the sleep study it should also have decreased breathing quality and it did not do so.

Imo uars is a long shot but give pap a try and see if it provides any benefit.