One month in, things seem OK, feedback welcome

[JimInPT]

It's been four weeks now since I received my first-ever CPAP system and I think things are going pretty well.  I had zero problems adjusting to the new way of sleeping from the very first night and it's been almost no effort at all to use it all night, every night for 100% compliance.  My setup details are in my profile box to the left, and some charts are below - I'm just wondering if anybody has feedback, ideas or suggestions to offer for even better results, if such are possible.

I was diagnosed in June with a home sleep-test report showing AHI of 48.  First night was down around 7 and the last few weeks it has generally been between 2 and 3, which I think is pretty good, but others have mentioned a target closer to 1, which would be amazing.  I'm a numbers geek and making numbers the best they can be is one of my things.

The only "complaint" I have is that all my apparent success is strictly in the data; I feel almost no change upon waking up or through the day - still drowsy in the afternoons, maybe not quite as much but I can't say it's been a noticeable change and I understand that it can take a while to really feel better.  One thing I have noticed is that I rarely have to get up to pee in the middle of the night, where it used to be pretty routine at least once, so I figure maybe my apnea was either waking me or getting me close, then I'd feel the need to head to the can.  Another benefit is that I almost always wake up with unobstructed sinuses and no stuffy nose, which I assumed is due to pressurized humidified air all night - that's cool.

In my Overview chart, you'll see the last few days of Pressure missing - ever since I added in the CMS50F PulseOx gadget after about a week it always seems to drop out at least a couple days at the end, but they always reappear as they age out, so I'm ok with waiting for a SleepyHead update to maybe fix that glitch.  I have the clinical manual and have tested access to settings changes, so I'm comfortable with twiddling the knobs but so far haven't changed a thing from the originally-prescribed settings.

I'd also welcome suggestions for what charts to bring, questions to ask and comments to make at my sleep-clinic first followup appointment in a few weeks.

So, comments anyone?  Thanks!

[sheepless]

wait for more experienced members to reply; I'm replying to test my knowledge a little.

there may be several things you can do to improve things. I'll mention 2.

if you increase your min pressure to closer to your median of 11.96cm you should see a reduction in hypopnea, flow limitations and rera. min 9 - 10 might be your target but if it's too much for you all at once, move your min up gradually.

try a soft cervical collar to reduce leaks, rera and clusters of hypopnea. any method to reduce leaks that works for you would be good. the collar has the additional benefit of easing clusters of events.

[OpalRose]

Hi JimInPT,
Your numbers are good and I’m sure that’s what your doctor will say as most docs consider anything under 5 AHI to be good.

What I see is that your starting pressure of 5cm is too low.  It is too far away from where it should be to tackle events.  

Look at your median and 95% numbers.  A good rule of thumb is that your minimum pressure should be set at approximately 2 to 3 cm below the 95% number, which in your case brings you close to the median pressure of 11.96.  

I would change the minimum pressure to 11cm.  If you feel that’s too much of a jump in pressure change for you, then do it slowly, but try to reach a goal of 11min.

Also, should you see an increase in Clear Airway events, lower the EPR from 3 to 2.

As far as being tired during the day, there could be reasons not related to Sleep Apnea. It is still early in your Cpap therapy, but if that continues, you may want to consider getting a complete physical and blood work done.   Also, check your vitamin D levels and Thyroid levels.

[JimInPT]

Ok, before we get too far into the discussion, would it be worthwhile for me to post details from a day with a low AHI and/or low RERA for comparison, or would that be gaming the system? These just happen to be my most-recent results from last night; I've seen better data previously.

[mesenteria]

All data is useful, but especially so is data following a change in settings.  This is even more especially true if the results show you settling and accommodating over a period of days and if there is a change in your data or how you feel about the therapy upon waking.

It's not gaming the system if you show data with a good AHI result next morning over one with a poor result, and if the settings have not changed.  We may then follow up with questions about your sleeping position, overall health, any anxieties, etc. (without asking you to reveal too much that is sensitive or private), and so on.  Eventually, we may help you to feel more secure, or to even feel better about the data.

I have my therapy, simple CPAP, dialed in quite well, and it worked for me very early.  However, in any two week period my variance in AHI runs from the very rare 0.0 all the way up to 1.3.  Honestly, upon waking, I can't tell the difference.  But, anything less than 5.0 is what the science says is a good 'fit' for therapy.  Even so, I'm always surprised at how many report almost embarrassingly low numbers, consistently, and still feel like they live in a thick soup.

[sheepless]

you have a lot of hypopnea and flow limitations. it seems to me that these tend to be discounted in the push to address full-on apnea. it also seems to me that as 'precursors' to apnea these would have their own deleterious effects. I am convinced these things are hard on our bodies. it should be no surprise that you're not feeling as refreshed as you would like.

[JimInPT]

All data is useful, but especially so is data following a change in settings.  This is even more especially true if the results show you settling and accommodating over a period of days and if there is a change in your data or how you feel about the therapy upon waking.

It's not gaming the system if you show data with a good AHI result next morning over one with a poor result, and if the settings have not changed.  We may then follow up with questions about your sleeping position, overall health, any anxieties, etc. (without asking you to reveal too much that is sensitive or private), and so on.  Eventually, we may help you to feel more secure, or to even feel better about the data.

Ok, thanks; I've attached a chart from 8 August, my lowest AHI to date - maybe there's something useful to see there.  I need to get a feel for what to look for and how machine settings can influence the data. I don't feel insecure about this at all, in fact I thought the almost-immediate plunge from my diagnosed AHI of 48 was a pleasant surprise - I'm just trying to get a feel for how much improvement I might achieve if I fine-tune things.

I get your point about reposting data after making changes; to date I haven't made any, but I know how to do it.  Tomorrow is my first followup appointment with the clinic since diagnosis and starting therapy.  Will bring my machine's SD card; not sure if anything else is necessary for them at this stage.  I'll explain my vast improvement in knowledge, acquired here - thanks!, and that I'm using SleepyHead to keep a close eye on things - so maybe she'll have more to say once she realizes I'm staying on top of this.

Here's my additional Daily chart (that big Snore at the end is me getting up to go pee):

[Sleeprider]

You are doing all the right things, and since moving EPR to 3 your hypopnea has dropped. I would use minimum pressure of 9.0 and keep EPR at 3 and suggest some patience for how you feel to recover. This looks very promising.

[JimInPT]

You are doing all the right things, and since moving EPR to 3 your hypopnea has dropped. I would use minimum pressure of 9.0 and keep EPR at 3 and suggest some patience for how you feel to recover.  This looks very promising.

Thanks for the feedback.  The EPR setting has been unchanged at 3 since I got the machine and will bring up the idea of raising the minimum pressure from 5 to 9 or maybe a bit more at my consult tomorrow.  Even if advised against, I'll probably give it a try anyway just 'cause I'm ornery and like to play with knobs.

[Gary1of2]

Some people take months to start to feel a difference in the way there fell.