No Improvement in Fatigue

[karnote54]

Hi, all.  This is my first time to post.  I have been on ASV therapy using nasal pillow mask for about 3 months.  Prior to starting therapy, my sleeping was very disrupted.  I would wake up every 90 minutes to 2 hours to go to the bathroom, so my concern was that I never really got into therapeutic deep sleep. Sleep studies showed that I had severe OSA (stopped breathing 40+ times an hour).   Since starting therapy I now sleep up to 4 hours at a time -- that NEVER happened in the last 3 decades of my life (I'm a 69-year-old female).  I've had follow-up appointments with my sleep doctor who says that all my ASV stats look great:  I use it 6-7 hours a night, with almost no leaking, and he's pretty sure he's got the pressure set correctly for my needs.  My husband says I don't snore any more.  I had such high hopes that being able to sleep better would have a significant affect on my daytime energy level and mood -- but such is not the case, at least not so far.  I'm still tired all the time and depressed.  Should I be looking in a completely different direction for answers (not that I'm going to stop the ASV therapy - certainly not)?  But I mean, should I be looking elsewhere for the cause of the mood and energy problem?  I am pre-diabetic, 80 lbs. overweight, stage 3a chronic kidney disease.  I was really hoping that poor sleep was the underlying cause of my daytime malaise and that good solid therapy was going to correct this, but so far, nothing.  Do I need to just give it more time?  And FYI, I'm just now starting a program (with apparently some proven science) that will help me with a metabolic reset of my body that should assist in taking off some of the excess weight. 

Any thoughts?  I am just so tired . . .

[SarcasticDave94]

Welcome to Apnea Board,

I've used a ResMed AirCurve 10 ASV myself until my COPD/Asthma hindered therapy. We can help you look at data on OSCAR, a free program. We can then help by seeing his well the therapy is going, and can offer suggestions to make it better. Besides the comfort settings, there's up to 5 therapy based settings. So this isn't hard to get tuned specifically to your needs.

You would need a standard SD card for the ASV in the left hand slot under the flap. This can be any brand, standard style SD card, 2-32 GB capacity, formatted to FAT32. It must be in the ASV slot before sleeping to capture the detailed info. You'll then look on OSCAR, upload that nightly info and attach it here with a post.

[karnote54]

I'm sorry, I'm not very tech-y, so I'm not sure about using OSCAR to upload my data to this site.  There is an SD card in the machine already that came with it (from the company -- Apria -- that provided my machine).  And they told me that that the SD card should not be removed at night when I'm sleeping because otherwise, neither Apria nor my sleep doctor would be able to download my stats.  Can I use the existing SD card in the ASV machine to link to OSCAR? Will that disrupt any of the stats that my doctor is seeing?  Also, I don't see any external controls on my ASV that would allow ME to change my own settings (except for humidity and heat in my tubing and machine ramp-up time).  My doctors sets the machine's settings remotely and I don't think he would approve me changing those settings without consulting him.

[SarcasticDave94]

The same SD card will work fine. It will not hinder Apria from getting your data. I've used Apria before myself, and used OSCAR charts almost daily with no failed compliance.

It's really a win win situation for you, DME gets their info and you can post OSCAR here, seeing all the details. The problem with not posting charts, we can't see what is needed to help you get better therapy.

I alone set my ASV for the 2 years on it. The Apria RT told me she guessed at the settings, not a big convince booster. I had my therapy tuned to about 1.5 AHI average with fairly low leaks, good comfort. At least until my lung disease became a hindrance.

I changed my own settings by accessing the clinical menu. After I set it to my needs, I explained it to the doctor what was changed and why.

Access clinical by clicking and holding the Dial and Home for 5 seconds. Dial to scroll to highlight setting, click to enter edit mode, dial to the right value, click to lock. Repeat for others needing edits, finally click Home to exit. Less than 5 minutes to set and it's free, legal in the US.

[staceyburke]

In using my machine I have never had the Dr. look at anything except time used. That is for compliance of Insurance. basically 4 hours a night. They don't care and unless you come in with a complaint they won't bother to look. I been on mine for almost 35 years. Only thing my Dr. asks is how is the cpap going....

[SleepyDawg]

There could be other causes to daytime fatigue. Some simple blood draw could check for B12, iron levels, glucose, etc.

[karnote54]

Good suggestions and worth looking into.  My doctor checks my glucose regularly, but I’m not sure about iron levels and B12.

[HalfAsleep]

While I think of it....totally have your doc check D3 vitamin levels. I inadvertently got mine down to "non-detectable". You can get to springtime and have lost your entire supply because of a dark winter. And, yep, we're at springtime.

My sleep technicians also think my stats look great, as does my DME. This has nothing to do with sleep quality, I have found. And the sleep center gets an alarmingly vague report on how you're doing.

You could be getting a lot of disruptions during REM that show up averaged as 40. And the mask could be leaky enough to compromise treatment, but you'd still get that cute lil' smiley face in the morning.

It's a really good sign that you are sleeping more hours in a row without having to get up to go to the bathroom. You're on the right track!

But, yes, post the data from the SD card via Oscar. It will likely change your whole experience. Someone will for sure be able to help you on your end if it's a challenge to download Oscar. Once you have that, it's EZPZ.

You are on the right track, you are on the right track, you are on the right track.....The most important element of this whole sleep thing is realizing the sleep experience belongs to you: it's not plug-and-play, and settings need to be individualized. Once you address the idea that "my sleep experience is up to me", as you're doing now, you're well on your way to finding answers.

I am newly on biPAP, and it's taken 2 months of commitment to feel anything other than stuporous during the day. It takes a bit for your body to adjust.

[karnote54]

Thanks for all the info the perspective.

---

Is the doctor you mentioned just a primary care physician, or is it a certified sleep specialist?  I’ve been seeing a sleep specialist for my sleep issues, and I would certainly hope that he would be asking more than just about time used. He has shown a great deal of concern about my insomnia, which is the other issue I have, and we are working to resolve that as well, so I hope he’s looking at more statistics than just my time.

[ischua]

I know that issue. If you have high sugar levels at bed time your body will try to get rid of it. Doesn't mater if your machine is working perfectly if you are up going to the bathroom you will be tired.  Are you on any meds for diabetes? And do you check your blood sugar levels before bed? (A1c level?) Controlled sugar levels before bed will help.