Please interpret my flow limitations - UARS is debilitating

Pugsy wrote: ↑

Fri Apr 19, 2024 6:33 am

And we wait for Rubicon's thoughts.

I think your observations and additional questions are spot-on.

Pugsy wrote: ↑

Fri Apr 19, 2024 6:33 am

genz9000 wrote: ↑

Fri Apr 19, 2024 6:12 am

I was told you were good at interpreting wave forms.

Me as a person or the forum members in general?
Rubicon is much better at this thing than I am. I just dabble in it and I only barely understand the basics. When I see something like your report my eyes glaze over. I don't normally evaluate flow rates from the type of machine you are using and mainly I just look for awake vs asleep breathing. The other subtleties I leave to the pros which I am not.

genz9000 wrote: ↑

Fri Apr 19, 2024 6:12 am

Could you please try to ascertain if my wave forms look abnormal to you, during the moments where I wasn’t having unclassified events? Please let me know

They don't look "normal" to my eye as they appear to be "too pointy" and not rounded. Why? I have no idea.
It could be what the machine is forcing your breathing to be doing and not you yourself and when not using the machine your flow rate is more "normal" looking. I do know that there is a lot of evidence of awake/arousal breathing going on during some of the night both with and without flagging. I also don't know anything about whatever surgeries you have had and their potential impact on the shape of the breaths.

Might be interesting to see a cpap report from your old machine if possible to see if the breaths looked the same on an different more traditional machine.

And we wait for Rubicon's thoughts.

Edit: One more question....has any of your doctors seen these reports and if so, what was said?

Here are some links to the nights I slept with a Resmed Airsense 10 last month, at lower pressures and lower PS. Thankfully that machine also records flow limitations on a graph.

Please investigate and let me know your thoughts on my wave forms. To me, they look terrible. The flow limitations graph confirms this. The fact that I feel exhausted and sleep-deprived every day confirms this for me also. And yeah, in 2021 I showed my sleep specialist my Oscar data and he looked at my wave forms and agreed that they are indicative of flow limitations. Would appreciate any help you can offer. Thanks again

https://sleephq.com/public/a154e626-38c ... 954f9b983d

https://sleephq.com/public/7acb9db8-000 ... edb5e9a2ce

Rubicon wrote: ↑

Fri Apr 19, 2024 2:42 pm

Pugsy wrote: ↑

Fri Apr 19, 2024 6:33 am

And we wait for Rubicon's thoughts.

I think your observations and additional questions are spot-on.

Please see my latest comment above and click on the links to look at my wave form data. I hear you are good at interpreting wave forms and I could really use your help.
Thanks Rubicon

genz9000 wrote: ↑

Sun Apr 21, 2024 12:39 pm

... your help.

In order for that to happen, I will need:

As previously requested, a description of every OSA-associated surgery you've had;
A complete report of every sleep study you've had;
A current list of all medications;
A 2-week sleep log (AASM has one);
The Oscar files; and
The broomstick of the Wicked Witch of the West (OK j/k on that last one).

Rubicon wrote: ↑

Mon Apr 22, 2024 2:04 am

genz9000 wrote: ↑

Sun Apr 21, 2024 12:39 pm

... your help.

In order for that to happen, I will need:

As previously requested, a description of every OSA-associated surgery you've had;
A complete report of every sleep study you've had;
A current list of all medications;
A 2-week sleep log (AASM has one);
The Oscar files; and
The broomstick of the Wicked Witch of the West (OK j/k on that last one).

I’ve had:
1. Tonsils and adenoids removed
2. Four premolar teeth extracted
3. Septoplasty, turbinate reduction, nasal polyp removal
4. SARPE (palate expansion, greatly improved my nasal breathing, no nasal resistance anymore)
5. MMA - I had my upper and lower jaw moved forward. The counterclockwise rotation technique was used, if you know what that is. About 7mm upper jaw and 11mm lower jaw (forward movements). Genioplasty was also done.
6. Tongue base coblation. My lingual tonsils/tongue base were burnt down with a coblation wand, giving me about 3-4mm more space in the airway behind the tongue. I also had one round of tongue channelling to attempt to shrink the body of the tongue but apparently a few more channelling sessions are needed to get a clinical result for sleep. I’m just scared of damage to the internal nerves of the tongue so I’m avoiding more rounds. After this last surgery, my surgeon said he did the best he could but it looks like I would still benefit from a MAD. He did a jaw thrust on me after the surgery and said it drastically opened up my airway. This was in December - 4 months ago.

So yeah, these are the surgeries I've had. They cured my snoring, apneas and poor nasal breathing, but I still have flow limitations all night long. Everything I've learned points to it being my tongue as the problem and my ENT agrees. I wake up struggling to breathe and full of adrenaline. I never feel rested. This was always the underlying issue and my surgeries didn’t fix it. I’m so exhausted I can’t work.

My current medications are Lexapro 10mg and Zopiclone 7.5mg. Don’t worry, they don’t worsen my sleep, I know Lexapro can reduce REM but I’ve been struggling with these very symptoms since I was 12, long before I started any meds. If anything these meds improve my sleep quality by reducing hyperarousal and stress throughout the day that comes from chronically crappy sleep.

I’m not sure I have the patience to do a two-week long sleep log. I’m happy to answer any questions you have about my sleep patterns, routine, habits etc.
If you want me to do a sleep log while actively using my BIPAP and adjusting pressures each night to see what works best, I’ll do that.

Here are my sleep study reports. For some reason this website insisted on uploading them out of order. It's necessary to add that they don't mean much. My sleep specialist said himself that PSGs aren't programmed to pick up on RERAs and flow limitations accurately. It's something to do with the fact that outdated definitions of hypopneas are used, meaning more subtle oxygen desaturations aren't picked up on. He said the only way to actually test for UARS definitively is esophageal manometry, but no one does that here (Australia).

At the end of the link are CT scans of me. The double pic is me before MMA (left) and after (right). The single pic is me after both MMA and tongue base coblation+tongue channelling. These pics indicate a narrow airway.

https://postimg.cc/gallery/T5Rw68R

And here is my Oscar data:

https://postimg.cc/gallery/C5n7dws

Based on the information provided:

1. Your conclusion that UARS is the cause of your difficulties appears unfounded. Indeed, there isn't any evidence of it at all.

2. Your sleep quality is about 30 times worse than it should be.

3. A sleep log would help to examine overall sleep hygiene (it only takes seconds each AM to do), or looking at the entire Oscar folder (you'd have to upload it to a third party server) and examining trend data could serve the same purpose. SleepHQ says you're sleeping from 4AM to 11 AM but those times can be screwy as data is observed in different time zones. At any rate, sleepy hygiene would need to be put under the microscope.

Rubicon wrote: ↑

Mon Apr 22, 2024 10:10 am

Based on the information provided:

1. Your conclusion that UARS is the cause of your difficulties appears unfounded. Indeed, there isn't any evidence of it at all.

2. Your sleep quality is about 30 times worse than it should be.

3. A sleep log would help to examine overall sleep hygiene (it only takes seconds each AM to do), or looking at the entire Oscar folder (you'd have to upload it to a third party server) and examining trend data could serve the same purpose. SleepHQ says you're sleeping from 4AM to 11 AM but those times can be screwy as data is observed in different time zones. At any rate, sleepy hygiene would need to be put under the microscope.

I think that’s a moronic statement to make, considering you haven’t elaborated on why you think I don’t have UARS. You asked me for all that data which took me hours to compile, only to skim over it and dismiss it completely.

I’ve received a UARS diagnosis by a sleep specialist, my flow limitations on Oscar are constant, I toss and turn all night and wake up struggling to breathe, and have had two ENTs confirm tongue collapse during a DISE. I’ve shared my Sleep HQ profile with you and now you’re still demanding more data. I should’ve expected this. What could you possibly be expecting to see in my entire Oscar folder that’s so different from what I’ve already shown you? I have no idea what a third party server even is.

Up till last year I was working, waking up at 7am every day, that’s also what I did all throughout my teenage school years, and I was as exhausted then as I am now, so if the time I wake up had anything to do with my level of fatigue, I think I would know by now. I’ve always gotten 8-9 hours of sleep a night. I’m not that dense that I wouldn’t think to mention my sleep hygiene if it was really an issue.

Would’ve been preferable for you to just admit you don’t have the answers rather than being all pseudo-intellectual and putting the onus on me, saying I haven’t yet provided enough data, or insinuating that I’m just pulling this diagnosis out of my ass or haven’t done research into my fatigue for the past 6 years and consulted a multidisciplinary team of doctors. Thanks for getting my hopes up

genz9000 wrote: ↑

Mon Apr 22, 2024 10:29 am

considering you haven’t elaborated on why you think I don’t have UARS.

Sure, no prob.

UARS by definition is a disease (although some clinicians don't even believe it is an entity) that is based on having RERAs, specifically =/>5/hr.

Your 4/5/16 study shows RERA Index = 0.2.

Your 4/23/23 study shows one RERA all night.

Consequently

there isn't any evidence of it at all.

And even if you wanted to use Tufik Criteria, AFL was not reported in your studies-- besides even he notes

It is characterized by an increase in upper airway resistance and/or flow limitation leading to sleep fragmentation, resulting in daytime sleepiness.

again underscoring the concomitant need for arousals as part of diagnostic criteria.

genz9000 wrote: ↑

Mon Apr 22, 2024 6:20 am

My sleep specialist said himself that PSGs aren't programmed to pick up on RERAs and flow limitations accurately. It's something to do with the fact that outdated definitions of hypopneas are used, meaning more subtle oxygen desaturations aren't picked up on.

"Not programmed"? He could have (and should have) looked at the raw data himself and manually made that determination. He could have overwritten anything that was "programmed".

He said the only way to actually test for UARS definitively is esophageal manometry, but no one does that here (Australia).

Page 23. Tell the cheap bastard to start:

https://www.mvapmed.com/skmvapcatalog/C ... at_web.pdf

So in answer to your question, you can make pretty waveforms (and did so) with BiPAP.

However, everything you've presented so far shows your sleep efficiency to be about 55%. You'd need to get to 70% just to get to awful.

Well, I really tried to be civil, but that kinda went to shit.

Rubicon wrote: ↑

Tue Apr 23, 2024 6:38 am

Page 23. Tell the cheap bastard to start:

But you know what that aborigine fuck is going to say?

"We don't have to because AASM says nasal pressure and inductance plethysmography are perfectly fine alternatives" (Note: Australasian Sleep Association follows AASM criteria) and why few, if any, centers do esophageal monitoring.

So even if the sleep center is shit, it was the AF's responsibility to put out an accurate report. If the report says no RERAs, then there were no RERAs despite AF saying "Well, y'know, esophageal manometry is blah blah blah, just cause you can't see something, you can never tell..."

Crapola!

Yes you can!

The PIFMF measured by RIP allows for the most accurate identification of UARS patients when breaths are selected for analysis immediately prior to arousals.

I feel better now...

It has been brought to my attention that there is some confusion as to who

Rubicon wrote: ↑

Tue Apr 23, 2024 10:33 am

that aborigine fuck

is because there are quite a few players in the mix here.

Note in this most recent study where x is noted to have

nothing

the reviewer is Brendon John Yee.



Dr. Yee is in fact a SuperStar sleep guy whose Word should be taken as The Gospel.

I apologize for any confusion.