Newbie Seeking Path Forward

Pugsy wrote:4 to 5 hours of sleep is simply not enough sleep for the majority of people no matter how good the actual cpap therapy is going.
Have you always had trouble falling asleep and/or staying asleep?

Let's use the available software to see if anything is standing out screaming "fix me"...gotta start somewhere.

Do you know about the software?' If not..
https://sleep.tnet.com/equipment
Your machine is a full data machine so let's see what it says.

If you want to share the detailed reports here in this thread is an example of what we like to see.
viewtopic/t103468/Need-help-with-screen-shots.html

How to post images using imgur to host the image.
https://sleep.tnet.com/reference/tips/imgur

and how to organize the images...3 pages so be sure to read all 3 pages
https://sleep.tnet.com/resources/sleepyhead/shorganize

We don't need all the graphs that SleepyHead will give you. All that we need to see can easily be put on one screen shot.
On the right side just these graphs.
Events
Flow rate
Pressure
Leak
on the left side hide the calendar and turn off the pie chart (Preferences/Appearance tab and remove check mark) so that the AHI and each category of events shows up along with statistics.

Please note in the statistics there is a time over red line threshold leak statistic that may be alerting to large leaks that may not be happening because SH defaults to a ResMed leak threshold number and Respironics machines use a different number. So don't panic if it says you are having really bad leak...you may not. We can fix that by changing the threshold to something more suitable for your machine at your pressure....Preferences/CPAP tab and on the right see the 24 L/min threshold number...change it to maybe 50 or 60. Respironics never gives us an exact threshold number because it varies so much between pressures used and the mask used but at your pressure and with your mask 50 or 60 is a nice conservative number. I suspect the actual threshold is even higher.

As for the insomnia...we have a forum member RobySue who is much better at sorting out insomnia issues so I am going to ask her to stop by and help out.

As for your equipment profile....go in and edit it and select the correct machine. It will help avoid confusion later.
The DreamStation equipment is all in the "Ds" so look for it in the machine list and the humidifier list. They are in alphabetical order.

xxyzx wrote:

Hammer wrote:Hi All,

Have been lurking for a while and decided it was time to join and harness the power of this forum. I was diagnosed with severe sleep apnea exactly one year ago after complaining of chronic fatigue, inability to concentrate, lack of focus and even difficulty speaking coherently. I was ecstatic to have an actual diagnosis for my exhaustion and was told CPAP would change my life. While I was not keen on being hooked up to a machine for the rest of my life I was at my wit's end and said I would at least give it a try.

My home health company recommended the Respironics Dream Machine with humidifier and the Deamwear nasal mask. It took months before I finally got used to the mask and the forced air, but eventually I started to sleep a bit with it. After 6-months of use I went back to my doctor when I informed him that I felt no different, still fatigued, still exhausted still can 't focus on tasks. He checked the reports from my machine and said everything appears to be working fine, no clue why I'm not improving.

Last week I decided to seek a second opinion from another sleep specialist who was surprised that I had been so compliant with therapy all while seeing no benefit. I informed him that my research suggested that not sleeping can lead to serious cardiac issues and since those run in my family already I was hoping it had some preventative benefit. He told me that while he doesn't like to tell patients this, that new evidence suggests that CPAP may only be effective at preventing a second cardio event. I recently spoke to a gentlemen in my neighborhood about 10 years older than me that had a similar experience to CPAP and just abandoned it in favor of being comfortable at night. I mention this because lately I have been getting extreme dry mouth at night further interrupting my sleep and there is something appealing about being comfortable at night, even if you are not sleeping.

So here I am still not sleeping well and seeing little to no benefit from CPAP and now I'm told it may not even protect my heart. I am looking for any path forward and hoped a few of you have stood at this crossroad and can tell me which path, if any, to try next.

Thanks in advance for any and all recommendations!

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you may have the wrong machine-What type of machine should I have?
the settings may be wrong on the one you haveThe home health company set it to my pressure level, hose type and mask type
do you use a FFM? others hear have rinses and stuff to keep the mouth from feeling dry No I cannot tolerate a FFM
something else may be bothering yuor sleep in addition to apnea

get a full physical from the family doctor with FULL labs Coincidently, my regular check-up is schedule for Friday morning
have T3 T4 checked not just TSH
check for all vitamins as well as all the usual lab tests
maybe you will find the problem
otherwise you need to look at other causes besides apnea

what did the first sleep tests show That I had both central and obstructive
you may well have central apnea now even if you didnt show it at first
what does your current machine data show
there may be clues

if the apnea is not the issue then you need to look for unusual things
very few doctors enjoy doing the hard cases but there are some "QFT: both Docs just threw their hands up and said your that patient that we just can't help"
find one