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Here is the short summary:

I had my first sleep study in 2013 and could never sleep with the ResMed S9. Tried an oral appliance for years. In December 2017 I got a new Philips APAP and could easily sleep with it, but still exhausted after over two years of daily 8+ hour/night use. Sleep quality declined even more in fall 2020 so I had a new sleep study in January 2021. I purchased a new ResMed AirCurve 10 ASV Machine that I have used nightly since February. I get great scores but wake up almost unable to function. My new sleep doctor says my problems are not sleep related and there isn't anything else he can do. I just want to wake up not exhausted.


Here is the long version:

I have been using my Philips Respironics DreamStation Auto CPAP with my Philips Respironics DreamWear Nasal CPAP Mask since 30 Nov 2018. I have used it every day with an exception of about 10 days in the time period. The exceptions were when I was on a red eye flight or my nose was irritated so I used my mandibular advancement device. I am just as exhasted as I was before I started using it. My AHI scores are usually very low (<5, often <3) but I still feel exhausted when I wake up. For the first month I used it between 10 and 12 hours per night to see if that would help. I fall asleep immediately with it and wake up when my alarm goes off, but still feel exhaused. I have been looking at my data in SleepyHead. I have been back to my general practitioner and my sleep doctor since I started using it. I have had a full physical and blood workup. They both say I shouldn't be tired since the CPAP seems to be working. I just moved halfway across the country to the mountains of CO and a new job, but am still exhausted. I am open to any suggestions. I have been walking for about an hour probably five days a week, but still feel exhausted and too tired to really work out.

Here is a summary history. I am 6'9" tall and currently weight 305 lbs. I have always snored but I think it got bad around 2009 when I hurt my knee, began excercising less, and gained weight. Prior to that I was around 250 lbs.

I use SleepCycle on my iPhone as my alarm that also track sleep quality by noises. I useAutoSleep on my iPhone and Apple Watch to monitor my sleep based on movement detected by the watch. I use a Wellue O2Ring pulse oximeter on my finger every night to monitor my blood oxygen level. Since moving back to CO in 2019 I have connected an oxygen concentrator to my APAP/ASV to make sure my blood oxygen level stays above 90 due to the 8000 ft elevation at my house.

2013-06-30 Sleep study (AHI 13.0)

2013-07-15 CPAP sleep test (AHI 0.6 with CPAP)

2013-07-20 Prescribed a ResMed S9 Elite CPAP, tried it for a week, could not fall asleep with it on

2013-09-13 Tried Provent Sleep Apnea Therapy

2015-02-05 SomnoMed SomnoDent Classic Sleep Apnea Device, Oral Appliance, Mandibular Advancement Device

2018-11-30 Received Philips Respironics DreamStation Auto CPAP with my Philips Respironics DreamWear Nasal CPAP Mask, fell asleep immediately and slept through the night
-Still wake up exhausted

2019-01-10 to 2019-04-29 Multiple appointments with general practitioner and sleep doctor, both say I should be feeling fine based on physical exam, blood tests, and CPAP results

2019-06-28 Moved to CO at 8000 ft elevation

2019-07-17 Philips Respironics DreamWear Full Face CPAP Mask

2020-09-30 Sleep quality has been declining for several months, not sure why

2020-11-05 First appointment with new sleep doctor in CO

2021-01-30 New sleep study in Frisco, CO which is at 9000 ft elevation so higher than my home elevation at 8000 ft

2021-02-17 Received ResMed AirCurve 10 ASV Machine and started using it every night

2021-07-30 I have used the ASV machine daily since I received it, for an average of about 8.5 hours per night, very low AHI scores, still exhausted

I have lots of pictures of my OSCAR logs.

Any suggestions are welcome

Hello, ryanenorth. I know you were using Sleepyhead a while back; could you update to Oscar (see link below) and post a recent daily chart? Please include the left panel (calendar turned off; no pie chart), and please include only the following graphs:

Events
Flow rate
Pressure
Leaks
Snores.

I forget whether your ASV will provide data about flow limitations, but if it does, please include that graph as well.

When is the last time you had a full complete physical evaluation including routine labs...and some not so routine labs like hormone levels and vitamin D levels?

Do you take any medications of any kind? If so, what?

Do you have any other physical or mental health issues going on?

Do you wake up very many times during the night?

I have had several physicals to rule out other issues over the last three years, where the doctors have said that I seem remarkably healthy for as bad as I feel.

I'm not sure why the OSCAR figures didn't display as I uploaded them along with the original post. Here they are.

You can turn off the calendar and pie chart to allow other info below them to show up.

Also please review one of the 'how to post' guidelines, it'll save YOU time by only having to post one pic, and it'll make sure we get what we need to help you.

Here's one: https://www.cpaptalk.com/wiki/index.php/Oscar:organize

When is the last time you had a full complete physical evaluation including routine labs...and some not so routine labs like hormone levels and vitamin D levels?

About a year ago.

Do you take any medications of any kind? If so, what?

No

Do you have any other physical or mental health issues going on?

No

Do you wake up very many times during the night?

No, I go to bed and usually fall asleep in a few minutes. Most nights I don't have any conscious waking events and wake up with my alarm.

Here is the updated screen shot from OSCAR.

I wish I could say something jumps out at me, but I'm not seeing anything in the chart to suggest a sleep-related breathing disorder. One last question: why were you prescribed an ASV?

It's really hard to pursue a diagnosis when the primary complaint is exhaustion, sleepiness, or fatigue. Been there, done that. Fortunately a few small anomalies in my blood tests led my primary care physician to refer me to a rheumatologist, who ordered additional tests, made some observations my primary doctor hadn't, and diagnosed undifferentiated connective tissue disease. After a whole lot of prednisone over a long period of time, I stopped having flares, and I feel very fortunate to have had no recurrence during the past thirty years.

I mention this saga by way of saying I think you will benefit from a having a primary care physician who listens well, asks good questions, makes referrals to specialists, and is ready to investigate less-likely possibilities. To keep pressing for this kind of care is especially hard when you're wiped all the time. Do you have a spouse, other family member, or friend who can help you? Having someone go with you to key appointments, help with googling stuff, write down questions, and just generally be there in your corner -- all of that can be truly helpful.

I'm not really sure why I was prescribed an ASV as my results with my previous Phillips APAP were almost identical. I think the ASV was prescribed since that is what was used during my sleep test this past January. I guess the Dr. thought it addressed some central apnea events that I seem to be having since moving back to CO a few years ago. I see no real difference between the results of my previous APAP and the current ASV.

I had a physical today and the Dr. said that it looks like my sleep problems are cured and implied that my exhaustion is mental. I was pretty frustrated by that. I'm not depressed, I'm a pretty optimistic person, and I really like what I do. I have some frustrations at my job, but they are management issues not with what I do day to day.

My last two sleep doctors said that I don't seem to have any sleep problems as my machines are solving any existing problems.

Do the doctors not realize that not all "sleep problems" are apnea related?

These machines only fix sleep problems that are related to airway issues and it certainly appears that the machine is doing a bang up job in that area.

Doesn't mean that there isn't something else messing with your sleep quality or the cause of unwanted daytime symptoms...and it may or may not be "mental".
There are lots of things that mess with sleep and how we feel during the day that are very physical.

These machines only fix sleep problems caused by airway/apnea problems...they can't do a darn thing for some other problem that is messing with a persons sleep quality or causing other unwanted daytime symptoms.

Fatigue.....lots of causes for fatigue and sleep apnea is but one item on a very long list.
Insomnia...sleep onset or sleep maintenance...poor sleep quality....long list of potential culprits for it as well. It isn't a given that we would automatically remember awakenings...we can have them and not remember them.
I could go on an on. The point is that maybe you have something going on...physical or maybe mental...that is responsible for your unwanted symptoms.

More detective work needs to be done. Simple as that.
Common misinformation that cpap/xpap automatically fixes all sleep problems and all unwanted symptom problems.
It can't fix a problem that isn't related to the airway.

My general description of my sleep is that I usually fall asleep right away and sleep until my alarm goes off. I just feel that I don't get into the deep sleep for the three or four times per night that normal sleep cycles would expect.