Change Your Own Settings--A Year Later

We often get questions here as to whether you should change your own settings. Here's my story:

I started CPAP with no followup from my provider, the VA. I felt somewhat better, but I thought there was more. After discovering this forum I bought the software and started monitoring my progress. My initial pressure was 7. Here is where I started, and where I would be today if it weren't for you guys:

I saw that this was not ideal and began to slowly increase my pressure. I kept each change for at least a week. I am currently at 10.5, and here is my report from last night, a little over a year later:

This was a very good night, but my AHI is usually 1.0-1.5. There were several turning points in my progress:

1. I had a Swift mask and the discovery of Ayr Gel (thanks!) immediately made the difference between a partial night and a full night.

2. A flatter pillow brought the AHI down.

3. A Headrest mask (thanks!) brought it down again.

4. The rubber band trick (thanks!) brought it down again.

I have not slept without the machine for a single night, and I feel better than I have in years. I am totally comfortable with it, and sometimes I feel for the exhaust to just make sure it is still running. It doesn't bother me a bit, and I can't imagine sleeping without it. I can wake up with a headache after a nap without it. A whole night would be torture. I run a report every morning and keep looking for ways to improve my therapy.

So if you're wondering if you should take things into your own hands, the answer is YES! You have to have a data-capable machine and software so you'll know what you're doing, and you should make the changes slowly. I have met several CPAP users who have no idea how they're doing, and others who have stopped therapy because they "don't like the mask" or "it was just too hard". They're going to die earlier than they should, and they will feel worse while they're getting there. This therapy IS NOT optional, and you owe it to yourself and your loved ones to make it as good as possible.

Thanks again for helping me in this journey.

Sam

I'll try again to post the images:

Before:

[img]

After:

[img]

Sam

My opinion:

You are NOT making any progress with those reports, too many events seen on the report,

you NEED to increase your pressure, THEN watch the report, start with the snores (VS), as you increase pressure those snores should start to subside, then the Apnea should start to subside, then the Hypopnea and finally the flow limitations.

From those reports, your sleep is a train wreck. Your pressure needs to be at least at 10 cm and work from there.

Can't tolerate the pressure? then make sure you have Cflex enabled and set to at least 2.

I don't know what I'm doing wrong, but I can't see my images. I guess you can paste the url into your browser.

The Before AHI was 16.3 and the After was .5.

Sam

Sorry, looked at what I thought was your "after" image, it must have been another "before" image, you must have hit the "Img" button too many times (should only be one set of those img statements in the brackets).

Your "After" report at 11 cm pressure looks MUCH better, but what I said in my above post holds true (on the pressure increase).

I think taking over control of your own therapy is the best thing you can do.

Snoredog, I think you're a victim of my problem posting the images. Before I edited it I had posted two copies of Before, indeed showing no progress. After is nearly blank with an AHI of .5.

I agree that it WAS a train wreck, and I did exactly what you suggested to fix it. You may have even suggested this a year ago! And your intuition is great, because my "sweetspot" right now is 10.5.

I have no problem tolerating the pressure, and my Cflex is set at 3.

Thanks!

Sam

Here are your images. Before is truly a trainwreck. After is smooth sailing.

RAINSUX wrote:I don't know what I'm doing wrong, but I can't see my images.

You were posting the website address rather than the address of the pics. Right click on the picture at the photobucket website, select properties, then you see the http address for just the photo rather than for the website--

Well, since we're telling stories here, I'll toss my story out as well. First, if I hadn't found this forum, learned about data from my machine (I started with an S8 Elite, fully data capable, but didn't know how to retrieve it—my RT told me that ONLY DME's and clinics could purchase the software!!). After more than a year (July 2006 – October 2007), even though I'd used my machine every night, I still felt tired, still felt that I wasn't getting recuperative sleep. My doc never scheduled a follow-up appointment . . . Then, I found cpaptalk.com. First thing I did was purchase the card reader and software. The machine showed my AHI for the previous 6 months, averaging 9. My pressure was prescribed at 6, and I had no idea how to change it (RT held that information as TOP SECRET). I decided that I wanted an auto machine that would enable me self-titrate, got the M Series Auto A-FLEX in October. Well, turns out that my required pressure "sweet spot" is 12. After experimenting with masks, humidifiers, getting my leaks under control, my AHI now averages 0.4 Most importantly, I just feel GREAT!! Consistently sleeping well, 8 hours of restful sleep. I feel rejuvenated, energized. So, I humbly submit that ALL CPAP users should take control of their therapy, should change their own settings. Had I not done this, I'd be continuing the useless therapy I began with. Well, that's my story! Three cheers for cpaptalk.com and all of you wise old-timers who saved my life (or a least lengthened it!).

RipVW,

My story sounds just like yours, well the first part that is. I haven't learned about readers, etc. yet but I need to follow your path because this isn't working.

I have the S8 Elite set at 10 and while I feel better than before CPAP, I know it isn't as it should be. I just posted about my search for a solution to the dreaded PAPgas and I'd love to get a good nights sleep in there too.
OldLincoln

After reading a few stories here, I figured I'd give the "short" version of my own!

Regrettably I have to say that it wasn't this forum that helped my at the start - it wasn't yet created at the time. I was diagnosed in Late 1998 and received my first CPAP machine in January 1999. And believe it or not I haven't spent one night without a machine since then! Though there have been some rocky times; In the early days there was really no place like this forum to learn just what to do to get better. I had to learn most of it the hard way.

After my first CPAP machine and mask were covered by my health insurance, that was it - they only covered what they called "one circuit" (machine, tubing, and mask) for your "lifetime". I guess they were figuring that it would be a very short lifetime when my equipment was no longer usable! So I was forced to look for alternatives, as the local DME wanted more body parts from me than I was ready to give them! My first self-purchased machine was a Respironics REMstar Auto, purchased at cpap-pro.net, which we now all know as cpap.com.

I use the original Encore Pro software (with the card reader that connects via that lousy, rotten serial connector - Aarrgghhh! the USB option wasn't offered at the time.) That software and my trial and error tinkering with my pressure probably has saved my life! I currently use the machine set with a min-max of 8 to 13 cm H2O, with a 90% pressure of 9 to 9.5. I also have a Puritan Bennett Goodknight 420e, though the SilverLining software has never fully won me over - I guess I probably became to accustomed to the Encore Pro's report styles.

I still use the Respironics REMstar Auto most of the time - the GK 420e is reserved mostly for when I am sleeping away from home - and I still greatly appreciate the C-Flex feature, especially when I start off a night with the 420e!

I am thinking of buying a new M Series Auto with A-Flex to finally replace my trusty old Auto, though I have read that the 1.0 version of Encore Pro won't work with the M Series. I have not been successful in finding an update to Version 1.8i so I'm not certain how I will remedy that problem. I am also curious as to how I will like the A-Flex after so many years using the C-Flex technology. Is it true that the M-Series supports both types? That I could switch the A-Flex to C-Flex if necessary? (I read that in another couple of threads here but don't know if it is true).

One thing I will say to new xPAP users: If you stick with it, things WILL get better. I will also say that you have to be prepared to accept the possibility that you will see a certain amount of improvement and then stay right at that level. In other words, xPAP therapy is not necessarily a complete, 100% cure. I still have hypersomnia (AKA "Excessive Daytime Sleepiness") every day and must take medication to keep from falling asleep at a most dangerous time. I still feel MUCH better than I did just prior to starting CPAP therapy, but it does seem that I may never reach a point where I have "perfect" sleep every night. (Then again, I have a feeling that not many in the general population DO get perfect sleep!)

Jim

Sam,

Great post! Thanks for sharing your success story. I'm sure it will be an encouragement to new or struggling users.