got my data :)

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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pandatx
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got my data :)

Post by pandatx » Thu Apr 25, 2013 11:50 am

Okay, one more time. I picked up my data (brought my own flash drive) and another mask to try. The guy was really very nice, not defensive, didn't give me attitude at all so that was nice. Maybe we turned a corner.

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kaiasgram
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Re: got my data :)

Post by kaiasgram » Thu Apr 25, 2013 11:53 am

Long time coming, but YAY!

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pandatx
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Re: got my data :)

Post by pandatx » Thu Apr 25, 2013 2:28 pm

OMG...I am so pissed again. So he gave me a new nasal mask to try (Respironics Comfort Gel) and I tried it on there but he didn't hook me up to a CPAP unit. IT seemed okay. Then I got home and tried it with my machine and laying down. It didn't feel comfortable and it whistles. So I get online to look it up (b/c maybe there's some info on how to adjust it) and I find out that he gave me an old model. Why?? Why wouldn't he give me the newest model of it? I'm so over these people now. Enough of this bullshit with them. Luckily I have my RX and I finally got my data. If I never go back all I lose is that they gave me a sample of the mask and not a real "for sale" one. But at this point I don't even care anymore. I'm ready to just walk away.

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LSAT
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Re: got my data :)

Post by LSAT » Thu Apr 25, 2013 2:45 pm


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pandatx
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Re: got my data :)

Post by pandatx » Thu Apr 25, 2013 2:47 pm

Regardless..once I got home and tried it with an actual machine it was clear that it won't work for me. There is zero chance that I will be able to sleep with that whistling going on and I can't keep driving 40 minutes each way to try new masks. I need to find someplace closer. I have work, clients, and other doctors appointments going on right now. This is just one stress that I don't need and finding someplace closer to home works better for me.

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Dreamingofsleep
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Re: got my data :)

Post by Dreamingofsleep » Thu Apr 25, 2013 7:52 pm

Absolutely, Panda!
I wish you all the best in finding a good DME close to home. Good for you for hanging in

Dreaming

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mollete
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Re: got my data :)

Post by mollete » Thu Apr 25, 2013 8:28 pm

Well, here's the graphs from diagnostic they said did not exist:

Image

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mollete
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Re: got my data :)

Post by mollete » Fri Apr 26, 2013 3:56 am

Titration Night:

Image

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mollete
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Re: got my data :)

Post by mollete » Fri Apr 26, 2013 4:00 am

mollete's concept of diagnostic night:

Image

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mollete
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Re: got my data :)

Post by mollete » Fri Apr 26, 2013 5:15 am

A few extemporaneous thoughts:
  • You've got a lot of alpha intrusion
  • Many hypopneas may have been overscored in diagnostic
  • What appears to be a BiPAP titration approach looks to account for EPR
  • There is cyclic alternating pattern (CAP) noted
  • There is a great deal of flow limitation throughout
  • Sleep architecture is overall horrid
  • It may be more helpful to view this as Upper Airway Resistance Syndrome (UARS)

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mollete
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Re: got my data :)

Post by mollete » Fri Apr 26, 2013 6:20 am

A well-defined hypopnea, showing flattening of the waveform, desaturation, and increased inspiratory effort in the abdominal and thoracic belts leading to arousal:

Image

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pandatx
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Re: got my data :)

Post by pandatx » Fri Apr 26, 2013 6:31 am

Thank you for looking at it for me, Mollette. Of course I don't understand most of it. But a couple of questions because I am feeling extremely upset right now:

1. Would CPAP still be the treatment for UARS?
2. I do not have apnea at all?
3. Does this mean the sleep center lied to me? I did't need a second night? And with their diagnosis?
5. Why did I show less hypoapneas with the CPAP if they were incorrect with their diagnosis?
4. Do I now have yet another fight on my hands? I've read that once you are diagnosed with apnea good luck getting health insurance later. If I was misdiagnosed as having apnea this is something I'd need to fight to change....yes?
5. Is the CPAP machine just making things worse and that's why I can't sleep better now

I am beyond grateful that you have spent so much time trying to help me with this. I'm just so upset right now to find that my sleep study appears to have been run by idiots that were very happy taking my money and giving me faulty results/information/diagnosis/treatment.

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mollete
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Re: got my data :)

Post by mollete » Fri Apr 26, 2013 6:02 pm

In an attempt to answer some of the questions:

CPAP is the treatment for UARS (although it may be amenable to several other treatment options).

You did not have any apnea at all. You had hypopneas and RERAs.

The sleep center scoring looked sloppy in areas (the extent of which is still TBD).

There looks to be breathing improvement with CPAP.

The diagnoses of OSA and UARS are not dissimilar (at least from a layperson's perspective). But those 2 groups are different as night and day (so to speak- more on that later).

It might not be a bad idea to petition the sleep center to rescore the diagnostic NPSG, using this specific statement:

"An independent reviewer observed that many of the hypopneas scored during the diagnostic NPSG did not meet the criteria established by AASM 2012, specifically 30% reduction on the nasal pressure channel and /or association with 3% desaturation or arousal."

SDB can have adverse health consequences in 3 ways:
  • Drops in oxygen level (of which you have virtually none).
  • Arousals which cause sleep disruption (of which you have lots. Whether or not they are all due to SBD remains to be seen (see previous post on arousals).
  • Constant inhaling against resistance (and since you have a lot of flow limitation, you probably have a lot of this).
Respiratory events are apneas, hypopneas and RERAs. The AHI is composed of apneas and hypopneas. The RDI is composed of apneas, hypopneas and RERAs. OSA is an AHI disease. UARS is an RDI disease.

And actually, none of this is really a surprise, reread the posts to this point. You sleep quality is poor, it may be a combined effect of Grave's and UARS, CPAP is reducing total sleep, may be improving sleep you do get, but the Grave's variable may be needed to get under much better control before the true benefit of CPAP may be realized.

Coming up next: differentiating UARS from OSA, the role of flow limitations and alternative therapy.

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mollete
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Re: got my data :)

Post by mollete » Fri Apr 26, 2013 6:19 pm

From Cleveland:
The diagnosis of UARS requires a high degree of clinical suspicion. Diagnosis of UARS requires symptoms (excessive daytime somnolence, fragmented sleep, fatigue), anatomic features consistent with upper airway narrowing, and supportive PSG findings.

UARS is present only if there are documented elevations in upper airway resistance, sleep fragmentation, and daytime dysfunction or excessive daytime sleepiness. The clinical complaint of fatigue or daytime sleepiness can be documented by an abnormal increase in the Epworth Sleepiness Scale (Table 1) score to a value greater than 10, or by use of another validated sleep questionnaire. A low respiratory disturbance index (RDI) is also needed to distinguish UARS from OSAHS. The elevated EEG arousal index related to increased respiratory efforts is the specific measurement that distinguishes UARS from idiopathic hypersomnolence. The clinical complaint of snoring (including crescendo snoring), increase in snoring intensity before EEG arousals, and clinical improvement with a short-term trial of nasal CPAP can be regarded as supporting a diagnosis of UARS.

The diagnosis of UARS requires full polysomnography. Although measurements of upper airway resistance were first used, based on the original definition of UARS, substitute measurements of effort and ventilation may be used as long as there is no evidence of hypopnea or apnea. A normal apnea-hypopnea index (AHI) of less than 5 events per hour of sleep should be seen on the polysomnograph. Additionally, EEG arousals should occur at a rate of more than 10 per hour of sleep and must be associated with increased respiratory effort (usually made by nocturnal esophageal pressure monitoring). Studies have shown an association of alpha-delta sleep pattern in the EEG of patients with UARS. Alpha-delta pattern is a nonspecific EEG finding in which there is intrusion of wake alpha pattern into the deep, slow-wave sleep. This is also seen in some functional somatic syndromes listed above but is not a feature of OSAHS.
That said, seems like your Epworth was 7. Could also be comorbid insomnia underfoot.

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pandatx
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Re: got my data :)

Post by pandatx » Fri Apr 26, 2013 6:48 pm

Molette, what is the benefit of petitioning the sleep center at this point? I'm not being flippant, I really want to know the pluses and potential minuses before I open that can of worms...