Finding the right help

[cboyce]

I'm a 28 year old male, about 205 lbs. I have a large build, but could stand to lose about 20 lbs right now. About a year ago, I started having chronic daily headaches. Several weeks passed, and I noticed I was feeling extremely fatigued throughout the day. My neurologist had me try a number of things to adjust my sleeping habits, but none of them helped me feel refreshed. Eventually he scheduled me for a sleep study. It was initially to be a split study, but the technician didn't find enough events to warrant using the CPAP/titration. After a few more weeks of feeling tired all the time, my doctor sent me to another sleep study. I did an all-night titration (can't remember the exact name, basically hooked up to the CPAP and various electrodes all night) and were able to get my 50ish events-per-hour down to zero with a pressure of 14 cmH2O.

I got a prescription for a CPAP machine, and picked it up a REMstar Auto A-Flex from my health equipment provider a short while later. Looking at the config on it, it was set to the A-Flex setting, which to my understanding automatically adjusts the pressure. I used it for a couple months, though it was (and still is) very difficult for me to get to sleep with my Mirage Quatro mask. I take Zolpidem pretty regularly to get to sleep. I was still experiencing chronic fatigue and headaches, so my neurologist sent me back for another sleep study. This time they found an ideal pressure at 8 cmH2O. The doctor who reviewed my sleep study noted that "There was also evidence of complex sleep apnea (treatment emergent central sleep apnea) at pressures above 8cm".

I've been playing around with the various CPAP/A-Flex/C-Flex settings on my CPAP, since I've come to understand finding the right setup is largely about trail and error. I also just got a copy of the EncoreViewer software in the mail, so hopefully I'll get a more objective view of its effectiveness. My neurologist seems to be largely unconcerned with my progress so far. My machine has a cell transmitter plug-in instead of the usual SD card, but he's never had the results from my machine when I go in to see him, which is largely what's prompted me to try to review my results myself.

I realize that there's a lot of trail and error involved in finding the right setup, but I don't know what's "reasonable" to expect from a doctor. I've been using the machine about 7 months now with little result. Should I be trying to see a different neurologist, or a specialist? Or is it a matter of getting a more thorough list of changes to try? (I've only tried a couple different masks).

Best regards,
-Chris

[rested gal]

Welcome to the forum, Chris.

Wow, that's a pretty drastic difference between one sleep study recommending pressure of 14 and another sleep study recommending pressure of 8.

If you could get the full NPSG (nocturnal polysomnogram -- the sleep study) report for each night that you spent in a sleep lab, that might help people help you.

The full report is not the raw data of the sleep study. You won't be asking them for the "epochs" containing all the squiggly lines that were recorded by the electrodes wired to your head.

Nor is it just the doctor's one page summary report, which is usually the most that is given (if anything) to you or to your doctor.

The full NPSG report will be anything from two to a dozen pages for each night, and will include histograms (graphs) showing things like sleep architecture, events (apneas, hypopneas), sleep stages, sleep positions, number of arousals, SpO2 (oxygen levels), pressures used on the titration night and more.

There should be three full reports. One for each night you spent having a sleep study done. Be sure they include the diagnostic night..that first night when they didn't use CPAP on you.

Once you get the sleep study reports, if you'll scan and post them here, you'll get plenty of suggestions.

[archangle]

Welcome to our community, Chris.

Please fill in your equipment in your profile. Use the TEXT option, instead of pictures.

"AFLEX" refers to EPR (Exhaust Pressure Relief) where the machine drops the pressure when you exhale to make it easier to breathe. "Auto" or autopressure refers to automatically adjusting the pressure to reduce your apneas.

AFLEX/CFLEX/AFLEX+ is for exhaust pressure relief. It happens on every breath.
APAP/AUTO/CPAP is for the base pressure. Auto adjustment varies slowly throughout the night.

There's a whole bunch more to learn.

Unfortunately, you'll probably have to learn to monitor your therapy yourself. The standard of treatment for CPAP followup is abysmal in the US right now. Luckily, you have a good data capable machine instead of the junk many DMEs and doctors give patients.

Fortunately, there's a great new program in the development stage called "Sleepyhead". It's free and open source. It's not officially "ready for prime time," but sadly, it actually works better than some of the commercial software.

You can put the SD card into your machine despite the modem. Heck, if your doctor's not checking it, get rid of the modem. You're probably getting charged a monthly fee for it, by the way.

[cboyce]

Thanks for the friendly welcome, there's certainly a daunting amount of information out there. It's already a relief to know there's an active, supportive community. It looks like I've got the EncroveViewer working after jumping through some hoops. I'll contact the sleep center, request copies of the reports and get back with the results. I really appreciate the help!

[dsm]

Thanks for the friendly welcome, there's certainly a daunting amount of information out there. It's already a relief to know there's an active, supportive community. It looks like I've got the EncroveViewer working after jumping through some hoops. I'll contact the sleep center, request copies of the reports and get back with the results. I really appreciate the help!

cboyce
Yes you came to the right place well and truly. Already you have the attention of some of the insightful helpers here. My few words of support are don't be daunted by the terminology & variety of information. It can be quite overwhelming but as long as you always say when something mentioned is outside your understanding just say so and you will be sure to get the help you need.

Welcome

DSM

[Pugsy]

Welcome to the forum.

Do you have the clinician manual for your machine? Not the user manual that the DME supplies? If not you might want to get it because it explains in better detail all the features of your machine.
You can get it here. Just scroll down and follow the directions to request it by email.
http://www.apneaboard.com/CPAP%20Adjustment.htm

If you could post one of your reports (daily detailed report not the summary) someone may spot something that could be worked on to perhaps improve on how you feel.

Don't know how to post a report? This is what I do.

Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 has the snipping tool.
Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.

[cboyce]

Ok, here's some more information. It looks like the fax scrambled a couple pages, so I can manually fill that in from the reports I have if it's necessary.

Here's my daily details for last night:


Here's all of my CPAP data from EncoreViewer.

And here are my 3 sleep studies.

Thanks again for all the help!

*edit*

I also bought a pulse oximeter from Amazon a week or so ago, which has the ability to record data. I can also post those results, though it's harder to sync up those to an actual time frame, and so far it hasn't seemed very revealing.

[cboyce]

Looking at the daily chart, it looks like the AHI is very low. This is what I want, right? Despite this, I still wake up groggy and feel the need to nap after being up about 4 hours.

[Pugsy]

There is much more to feeling well rested than "good" numbers.

Hours of sleep. Using the machine every night. I saw a lot of red on your summary reports. Red meaning less than 4 hours of use. Heck, even 4 hours isn't enough to feel well rested.
Fragmented sleep for any reason.
Pain.
Meds.
General health issues.
Mattress comfort. ETC
All these impact the restorative powers of sleep.

You have to use the machine each and every night all night long to have any chance of improvement and also take a look at other possible factors affecting quality of sleep. 4 to 6 hours of random use won't do it.

[archangle]

The big question is, "Why so few hours of CPAP per night?"

Are you sleeping that little? Are you sleeping or napping some of the time without CPAP? Is sleeping with the CPAP on uncomfortable and making you take it off or not use it?

[cboyce]

I take it off at some point during the night, but I virtually never remember doing it. I've tried making it harder to turn off by putting the machine further away, but I still manage to remove it. Is there some trick to getting my half-awake self to leave it alone?

[OutaSync]

I take it off at some point during the night, but I virtually never remember doing it. I've tried making it harder to turn off by putting the machine further away, but I still manage to remove it. Is there some trick to getting my half-awake self to leave it alone?

Tape the mask to your face and put a mousetrap by your off button