PSG Results: Could this be UARS?

[deebob]

So I managed to get more of the raw data from the sleep clinic.  I'm not sure if this really reveals anything more about whether or not it's UARS but it's maybe more informative?

               

[Geer1]

I would be asking for arousal statistics as that is important in your situation. Imo they should be telling you # of RERA's, PLM Arousals and Spontaneous Arousals.

I would also be asking for the doctors interpretation, they only gave you the technicians notes here. The notes/info should have been reviewed by a doctor who would have provided an interpretation and recommendations to the referring doctor. You may need to ask the doctor who referred you for this if sleep clinic won't give it.

Your main period of distress appears to be during N2 sleep which is when both PLM and arousals were occurring. This could be breathing related or it could be because of the PLM or other causes and without the arousal data it is impossible to know what is causing what. You did have your few hypopneas during that same time and I have seen a couple studies that make UARS sound like it is more predominant in N2 sleep so that is possible. 

PLM is also more predominant in that same N2 sleep and it could be the issue. Or it might be a side effect of breathing issues or both might be working in combination to mess up sleep. 

Motor restlessness hints at restless leg syndrome. Do you believe you have that? RLS and PLM are treated with either dopaminergic agents like Ropinirole(usually for RLS) or benzodiazapines like Clonazepam (for PLM). Benzos have downsides but would also help with the anxiety and insomnia. I don't know what you have tried for medication but it is something that might be worth a trial depending on what your doctor thinks. If that calms things down and you sleep well and feel rested with it then that may be an easier test to perform than trying to treat UARS with CPAP which is often an ongoing battle (I believe there is more at play than just the restricted breaths).

[slowriter]

I'm no expert on these study reports, but it almost looks like they didn't score RERAs. Did you have a band around your chest or abdomen during the study?

[deebob]

It looks like there are PLM Arousals and Spontaneous Arousals at the top of the third page, but no RERAs. I'm not sure I'll be able to get that if they don't normally score that....I'd have to get them to go back and look for that and I don't know if they'll do that.

I did have a follow up appointment with a doctor and he basically said everything looked pretty normal and wasn't worried about SDB....he was leaning towards it being some kind of insomnia issue and recommended I look into Cognitive Behavioral therapy for Insomnia. He also mentioned I should get my family doctor to refer me to get my heart checked out just in case the arrhythmia and PVCs are problematic. But I still feel like they were mostly just looking for apneas and aren't even interested in considering UARS which makes me feel a little uncomfortable just dismissing it without having definitive evidence that it's definitely not UARS.

I have an appointment with another sleep doctor at the University of British Columbia on Monday who is probably one of the most well known in the city, because several months ago I was referred to him for a pre-sleep study meeting, but because I was told it was going to take potentially up to 6 months, I went through with the sleep study with this other sleep clinic (which I'm pretty sure isn't as good).  I could go through with doing another PSG with the university but I don't know how long it will take and will probably be another uncomfortable, unnatural sleep in a lab.  I'm leaning towards just paying the money to do the in-home Level 2 sleep study with AXG Sleep Diagnostics so I can get a regular night sleep analyzed...and he's also UARS friendly. But I'd rather not spend the time and money on that if I don't have to.  I'd really just like to know for sure if I'm dealing with UARS or not, because otherwise I'm just taking stabs in the dark trying to fix insomnia or breathing problems without knowing exactly what problem I need to solve. If I can know for sure that it's some psychophysiological insomnia then I can put all my energy into dealing with that, but I don't want to carry on for years assuming I don't have UARS when I actually do, just because a few lazy doctors/technicians didn't know what to look for.  It's all really frustrating.   I appreciate your help though.

[deebob]

I'm no expert on these study reports, but it almost looks like they didn't score RERAs. Did you have a band around your chest or abdomen during the study?

Yeah I did.

[slowriter]

I'm no expert on these study reports, but it almost looks like they didn't score RERAs. Did you have a band around your chest or abdomen during the study?

Yeah I did.

So they should then have the raw data to be able to score the RERAs.

The only way you can confirm UARS is to get that information.

Can't hurt to emphasize to them how important it is to you that you confirm presence or absence of UARS, to ask them to give you that RERA data, and if necessary to rescore the study to include that.

Or maybe you could get the raw data and have the new doc evaluate it??

[Geer1]

Doh, I was so focused on the hypnogram I missed the arousal section.

29.5 total arousal index
-17.6 spontaneous arousal
-6.8 PLM arousal
-2.7 A&H arousal
=2.4 RERA index

UARS would not be my first guess based on that data. That said the only way to definitively diagnose UARS is with an esophageal pressure sensor which is almost never done outside of research studies etc. I've been trying to understand the mechanics behind the non flow limitation version of UARS but haven't really found anything good to help understand it or to know how it is effectively treated but the short form is that these kind of RERA's likely would be scored as spontaneous arousals during a normal PSG so there is still that possibility. This study abstract touches on some of these comments if you want to try and understand it a bit better.

https://www.ncbi.nlm.nih.gov/pubmed/14592389

Unfortunately I think you will struggle to collect a definitive diagnosis. You could try a cpap trial to see if it helps at all. If you are going to pay for another sleep study I would try and arrange one that will do a CPAP titration study targeting reduction of arousals (whether they appear to be RERA's or spontaneous) and I would try to get some confirmation from the place doing it that they will start with CPAP EPR and if arousals are still occurring that they will try bilevel with a larger PS just to see if it has any effect. That is likely the best test you can get done unless can find someone to do esophageal pressure monitoring.

[geauxdbl]

Wow - you're basically me, 5 years ago.  Right down to the Vitamin D, magnesium, the anxiety, the heart palpitations, the hypopneas, the arousals and low sleep time, everything.

Let me guess, you started taking the magnesium because it helps the heart palpitations and calms you down?

I still don't have a definitive diagnosis, but I can tell you that I have been down the CPAP road and it presented some challenges.  First of which is that breathing out against pressurized air was in itself a trigger for anxiety for me.  That made my sleep worse.  I can also tell you that Vitamin D is poorly understood, next to impossible to get an accurate measurement of in your bloodstream, and I was given an inappropriately large dose once by a gastroenterologist that made me so amped up that it actually *caused* the heart palpitations.  Sleeping with a mask attached to my face was also stressful.  I gave it up after a couple of months, only to have everything come crashing down around me years later.

Difficulty breathing in + low arousal threshold = waking up a lot during sleep, high anxiety, and feeling terrible during the day.

Gonna skip to the happy ending now, because I'm recently in a good place with therapy:

I stopped taking the Vitamin D.  It was harmful.  Still taking Magnesium every night before bed since it helps me sleep.
An exhale pressure lower than inhale pressure helped.  EPR of 3 was good, but bilevel is way better.  I get a lot of air in on inhale and just a little air in on exhale.  Just enough to keep my airway open but not so much that it's a struggle to breathe out.  This was accomplished with an Aircurve 10 VAuto, a Xylitol nasal rinse, and the help of this board.

Easy to breathe in + low arousal threshold = now I just wake up a little but my anxiety is disappearing.

http://www.sleepreviewmag.com/2019/12/co...d-devices/
There's a strong correlation between UARS, insomnia, and people with anxiety.  Regrettably it doesn't seem that we fully understand this area of medicine yet.  But *PAP therapy can be helpful if you do it right.  

The challenge, of course, is doing it right.  But this board is exceptionally good at helping people get there.

[Geer1]

Do you have symptoms of reflux (either GERD or LPR)?

I recently realized I have LPR and have been researching it a bunch since. There are numerous studies indicating that reflux causes arousals, in majority of PSG like yours these would be scored as spontaneous arousals (of which you have plenty). The thought behind this is that the body senses the presence of acid and wakes you up to try and avoid it going into your airway, lungs etc.

Anyways was just another thought worth thinking about/looking into.

[deebob]

Do you have symptoms of reflux (either GERD or LPR)?

I recently realized I have LPR and have been researching it a bunch since. There are numerous studies indicating that reflux causes arousals, in majority of PSG like yours these would be scored as spontaneous arousals (of which you have plenty). The thought behind this is that the body senses the presence of acid and wakes you up to try and avoid it going into your airway, lungs etc.

Anyways was just another thought worth thinking about/looking into.

Thanks for the suggestion.  I actually don't think I have any symptoms of reflux.

I had my first night with the trial CPAP last night. I got a Resmed Airsense Autoset 10 with the Resmed N30 nasal mask.  It was surprisingly comfortable and easy to get used to. I was pretty impressed with the technology and the simplicity of it. They set me up with a pretty low pressure of 5 to 9 which might be why it wasn't too bad....but I didn't really notice much issue with the exhaling, and the inhaling was really natural and felt pretty good.  I seemed to sleep pretty well for the first 4 hours. I woke up two hours in, and then again another two hours later, which is better than every hour.  But then I got up to go to the bathroom and had trouble getting back to sleep four a few hours, but that might be just because I was kind of excited at the prospect of sleeping better and I had a lot on my mind. 

My AHI was 0.1 so it's pretty clear that's not my problem, and it's still hard to tell if there might be RERAs waking me up or if it's been some kind of insomnia/anxiety issue that's been causing the frequent awakenings. I suppose I could still be experiencing RERAs and not even know if the CPAP is effective if the pressure is too low to do anything. I guess if I continue to wake up frequently I could try increasing the pressure to see if that's effective? Or would the CPAP automatically increase the pressure when needed? I don't know if it's 'smart' enough to prevent a RERA automatically though.

 Because I'm still unsure if it's RERAs or insomnia/anxiety causing the awakening, I'm simultaneously implementing sleep restriction therapy to see if I can improve the insomnia component. I was previously spending like 10 hours in bed and only sleeping 8, so it's possible that's making things worse.  I will hopefully have a better idea in the next few days what's going on.