Doctor says perfect data, but extremely tired - OSCAR Data

[Auzzyrocks]

Thank you for the response, that is an interesting observation. It is interesting that you mention the dreaming, as I find I do not dream much or well anymore, and less so when I am experiencing a period of worse fatigue. 

I have attached two screenshots - from two separate nights in August, and they both contain several CA events towards morning. They seem to range from 10 - 13+ seconds. I'm not sure if that falls under innocuous or not. If it is causing an issue, how would I go about preventing CA events?

I do take buprenorphine daily, which I am working on getting off in hope that it helps to reduce my apnea index, but it needs to be tapered off over a period of time. I am curious if there are other things I can do to reduce the CA events. 

As far as reducing the AHI in general, are there any suggestions or methodologies for doing so?

[mesenteria]

Fortunately, based on what you show for two different nights (it's a small sample, but we can assume it is close to representative), you are indeed showing a late-onset pattern of CAs, but I saw only one over 14 seconds, and it was only16.  To be sure, anything over 14 seconds can draw your SPO2 down into the mid-80's, which ain't great.  But, it could also be worse...much worse.  Somehow, I am getting down into the low 80's some nights, and one night last week was, according to my Galaxy watch, down to 73!!    I think I have convinced myself that it was a spurious measurement because I didn't feel I had suffered unduly the next morning.

Your CA's come about 30 minutes or so apart, with the odd one at quite a bit less than that....five minutes.  So, I'm going to go out on a limb and decide, for my understanding, that your CA's aren't really that much of a problem.  I'm assuming that some of them, maybe nearly all of them, come from turning over, which many of us do a lot of in the last hour of sleep.  They could also be timed in such a way that they do interrupt your normal cycle through the various stages of sleep (initially 'light', then usually down into 'deep sleep', followed by a series of light sleep, REM (where we dream) and more light sleep, perhaps another dip into deep sleep.  In my case, my deep sleep all comes in the first three hours, and the bulk of my REM and dreams come in the final three hours.  

Perhaps someone else with more knowledge about the fineries of therapy-shaping as relates to pressures will be able to see something, but you have answered my concerns and I don't see what could be called a CA burden.  Then again, few of us are alike, and we all respond to a stimulus slightly differently.  My worry that the burden is sufficient later in your sleep might still be a valid concern, and it would be worth following up, with any one of similar nightly reports, with your RT or with your physician/expert.  Or both...get them talking to each other.

[Cam12]

Frustrating but don’t give up. Doctors are people too i.e.) make mistakes and cover them up. However, there is NO centralized way to hold doctors accountable! How is that?? Maybe get another PSG, tape it yourself. My story:

Prior diagnosed with Sleep Apnea and severe PLMD. Am much worse now in terms of EDS. So, I had a recent PSG. In approx 4hrs sleep period I had: 40 awakenings; 89 arousals (83 unspecified/“spontaneous”, 6 CSA related (“0” CSA’s last PSG 10mo ago), AI=20.9/hr); sleep efficiency 59%; approx. 70% N2 sleep, 0% N3; 108 sleep transitions (>13/hr is severe/extreme, mine=27.7/hr), 29 PLMS, PLMI 7.5/hr (mild - likely due to undercounting and/or archaic parameters); “spontaneous” arousal index of 20.9/hr. Physician, embarrassed by the news that I took my own video at PSG, refused to watch 2, 2.5 minute videos (each 20 min at 10x speed) showing repetitive, almost continuous PLMS with arousals. Study tech said their equipment can be viewed at 2X (as in, wow!) so will pick up even the tiniest movements (lol). Asked physician and she has no interest in determining cause of “spontaneous” arousals. Now diagnosed with Sleep Apnea only. Only change was a slight reduction in pressure. Now my wife and kids just think I’m lazy.

You, me, us….deserve better. I encourage everyone to take their own videos of their PSG to keep em’ honest by letting them know and requesting PSG RAW data. I sympathize with over-worked health-care staff but providing lower-quality care cannot be the answer that we accept. Right?

I attempted to get my PSG RAW data from OHSU Sleep Lab 10mo ago. First, they didn’t have the records at the “main” medical records storage. Wiping their hands clean (“I don’t know what else we can do for you here” (at medical records)) so she “suggested” that I call the OHSU Sleep Lab and request from that clinic directly (illegal for a lab tech to do this). Lab tech said the data was in a special “proprietary” ResMed format for which there is no available consumer/patient software. Had no suggestions other than contacting my doctor. Contacted doctor directly who, usually being responsive, deleted my message in MyChart (I luckily found it in the “deleted” folder weeks later providing person who deleted it)

I am going to request PSG data from the recent PGS described above. If I get the same answer, in reading HIPPA regulations in the US, this appears to be a violation of HIPPA rules which require the medical records to be provided and, to be provided in a format that can be easily accessed and understood.

It simply appears that ResMed and medical providers are breaking the law. They’ll probably claim that they are protecting “proprietary” licensed software. Unfortunately, this is not a valid legal argument to justify the withholding of medical records from patients.

Possible class action!? I’ll post if it happens. I am determined but encouragement welcomed

[Lucid]

Hi, Auzzierocks  You seem to be going to bed around 1 am and getting up around 9:30 am.  I like to do that, too, but the problem I encounter is that there's more light and noise in the last hour or two, which starts to disturb my sleep, plus needing to go to the bathroom but putting it off, etc.  So I feel like I'm sleeping less well during that time, even though it's not reflected in the data.

Is it possible that external factors are disturbing your sleep?

[Cam12]

This is a guess but based on the regularity of events, flow rate and flow limit, I’d guess that you’re having PLMS. It would be interesting to tape yourself and see if these events are all related. You’d need to sync the camera time to the CPAP time or make a hand gesture or something to coordinate the times. Many of my PLMS also have longer inspiration and expiration times as well as more arousals that can look like CAs because when I have one I inhale, hold it, and exhale. Sometimes a leak happens because I adjust my mask unconsciously and respiration rate usually increases.