New to cpap and the board

[Tubaman]

Hello!
I'm somewhat new to this apnea cpap/apap forum and communicating with the folks who know what they're doing (I don't think I do). I started by trying to find a way to (successfully) merge my oximetry data with my SleepyHead &/or ResScan data but I have had no luck.

Anyway, that's not why I'm making this posting (which I hope I haven't posted in the wrong location!) ...

I have now been on (apap?) since June 13. I have not missed a night and my Resmed scores have all been above 95 -- most recently 98s & 99s. I must be doing the nightly apap tests properly. I have received a couple of emails from ResMed asking if I'm starting to feel better (I'm not). I also have read many other posts in this forum that say their average oximetry values have improved from 90s and below to higher values above 90. Mine have pretty much stayed the same, usually between 88 to 90 and usually below 90 (occasionally below 88). They have been in this range since October 2014 and the apap therapy has not changed them. The fact that my AHI events have dropped from my sleep test of ~13 per hour to currently around 1.5 per hour has not improved my physical feelings at all that I can see. My oximetry readings were actually slightly higher back in October 2014 when I first started recording them and have gradually (very gradually) been decreasing since them. Everything I've been able to find and read on this forum seems to indicate I should be seeing some improvement in my oximetry values by now and I'm not seeing anything -- nor am I feeling any better (always tired, no energy, easily winded).

My question is: What data / graphs do you folks need to see in order to give me some kind of opinion(s) as to what might be going on? Or if I am doing something wrong? I can supply either SleepyHead or ResScan information limited only by the forum's limitation on maximum picture size (512 kb).

If this is advice you folks don't wish to do I will understand.

Thank You!

[eseedhouse]

If your O2 levels are low even with a low AHI you need some further treatment. What that should be depends on the exact nature of the cause. In my case even though my AHI scores were consistently below 2 I was not feeling better, but instead feeling worse and feeling that I was going downhill. An overnight oxymetry showed that my O2 levels were nearly as bad on APAP as off it. In my case, since I was not experiencing Central Apneas they added oxygen from an oxygen concentrator and that's when I stopped deteriorating and gradually started to improve.

If you have mostly Central apnea an ASV machine may be the better solution. In any case, after a reasonable time with no improvement you should ask for a reassessment of your treatment regime. It *may* be just a matter of giving it enough time, but it may not. Get medical advice!

[PoolQ]

Tubaman

Your in the right place, starting your own thread would have been nice, but not required. First your apnea numbers are fine and all that means is that apneas are no longer causing a problem, not that you don't still have other problems.

There are now two things left that you need to look at: 1. My guess is that you are not getting good quality sleep. This means all 3 stages and REM sleep, you need all of this to be rested. Looking at your data may provide some insight: there should be stickies at the top of the pages, some of which talk about what and how to post. Then there are all the comfort settings that can only be done by trial and error, small changes and see if you feel different, keep a journal so you remember what settings did what. Your starting pressure of 5 is typically a little on the low side and many feel like they are not getting enough air. Then you have EPR and humidity settings. You are not going to get good sleep if you are not comfortable.

O2 levels: they should be up IF sleep apnea was the only thing lowering them. 13 apneas per hour is too high, but not really all that high: I had 29, FIL had 40 and I have heard of over 100 an hour. All this means is it is quite possible that your O2 levels were not caused by SA. You need your doctor to look to other sources for this and perhaps add O2 to your CPAP system to get them up. You are not massively low on the O2 side, have seen below 60%. So low but not panic low.

Get us some sleepyhead plots and lets get started: I am going to follow this thread.

[PaytonA]

The graphs of most interest in Sleepyhead, if I remember correctly are events, flow rate, pressure and/or mask pressure, flow limitations and snores

Best Regards,

PaytonA

[Tubaman]

Thank you! You've already given me an insight regarding what may be going on. I meet with my sleep doctor July 19 so I hope I will know enough about what may be going on to talk a little bit more intelligently to him.

I've attached the graphs that PatonA requested, including my oximetry graphs. These are for last night (morning of July 8, I go to bed kind of late so I get up kind of late). I had been getting AHI values around 1.7 for several days (I thought I was getting better) but suddenly my AHI jumped to 7.13 last night. I also got a CSR value of 6.23% and that scared me since that has always been 0% since I started (June 13). Maybe it's a fluke?

As usual, I still felt quite tired the rest of my day, no energy, etc. I did not feel any different while sleeping last night.

Thank you again!
Tubaman

[attachment=2631]

[PoolQ]

Others will chime in, but for now those snores and flow limits should not be happening if your machine is set correctly. This will not let you sleep well. I am not an expert on setting pressure and would just be guessing if I did. There are many here that are very good at this and will chime in tomorrow. I can see some things that I would focus on, so I am sure they will have something to suggest.

If your still awake, what does it feel like when you exhale? easy or like you are blowing into a strong wind. If it's not a problem then no worries, if it is then you should increase the EPR (exhalation pressure relief) setting. DO you have the "real" manual requested from this site? If not get it so you can adjust more of the comfort settings.

[Tubaman]

PoolQ,
Your question: "what does it feel like when you exhale?"
No problem. I can hardly tell there is any back pressure. That may be a result of playing very loud tuba in loud German bands for many years.

I don't know what you mean by "real manual"...? I know how to put my machine into clinician mode to make adjustments but I don't plan on doing any adjusting until after my next meeting with my sleep doctor (July 19), if then. I readily admit I know virtually nothing about what settings should be made so I am not ready to do that yet.

Thank you!
Tubaman

[pholynyk]

I think PoolQ is referring to the Clinician's manual, which you can get by clicking the 'CPAP Setup Manuals' link at the top of the page. Even if you don't plan on changing anything (yet), it is useful because it explains both the comfort features and the therapeutic capabilities of your machine. You will have a much more useful discussion with your doctor if you understand what your machine can do, and ask about features you don't understand. (You may scare him if you ask about things he doesn't understand, but that's a risk you take with many sleep doctors. - Mine says all those numbers confuse people...)

[NorthernGuy]

Back to the original poster. If the high AHI is preventing you from working (and paying the bills), be aggressive in getting it down to the point where you can get back to work, and then you can go about tweaking it lower from there. Get appt. with your doctor ASAP. Bring in the SD card (or whole machine if you don't know where it is) and have them check your data and prescription. Even machines that call in remotely don't send all of the detailed data (or so I have been told).

Do your part in being compliant with the mask. If something is bothering you - work it out. It is fixable.
1. Get a good comfortable mask set-up.
2. Use the machine daily, all night - get battery/adapter to use in the truck, if needed.
3. Have the doctor evaluate data after a week (or three) of being compliant,
4. Have doctor tweak the prescription - telling them that you cannot work, until the AHI is down (don't take wait and see for an answer).
5. Repeat from the top.

Good luck.

[PoolQ]

The OP has not posted since June 4th, this is an old thread with a similar situation to the NP. Hijacked for sure, but pretty sure the OP is gone.