My Lonely CPAP Hell Experience

[Grimace]

Hey Bob. One issue you mentioned that no one else has addressed was your statement that you weren't able to get the pressure lowered when you woke up. There's a button called ramp on your Remstar Auto. If you press it the pressure will drop back to the starting level and automatically adjust again when you get back to sleep. It took me a while to figure that one out too. You might give the automatic feature another try. It's not unual at all for the titration arrived at by the voodoo doctors performing sleep studies to be way off.

[BlueHairBob]

Thanks for all the advice gang. I will try the auto again. The sleep study sugested between 6 and 9 - I will start with that and see what the data says. I do have a smartcard and encore pro.

Instead of a separate thread, I will just ask here to start with: My encore pro data isn't giving me a report that shows AHI. The help says that this comes from a Daily Summary Report, but I can't find it. Is there an option that has to be set either on the machine or in the software to enable this?

[cflame1]

Bob,
When it comes up and asks you for what range you'd like the report run... you need to select the full/detail instead of the summary.

[BlueHairBob]

I don't see an option or radio buttons or anything else that would let me select details.

[cflame1]

When you click on the date in the list of downloads, what do you see? Is there a grey box that pops up? It's in the left side of the grey box on mine.

[rested gal]

I don't see an option or radio buttons or anything else that would let me select details.

Bob, this might help -- step by step instructions on how to view your Encore Pro detailed data reports instead of a "Summary" report:
viewtopic.php?t=14000


Also, here's a good link to very comprehensive info about OSA and cpap treatment in general:

http://www.smart-sleep-apnea.blogspot.com
Mile High Sleeper's great information resource for cpap users.

Hang in there, you're getting there. There's a lot of info to digest, I know. You're doing a very good job working on your treatment.

[BlueHairBob]

I found the details report from Encore pro - it was very cleverly placed under Interaction Events->Download. As a software engineer who tries to write software for normal people, I had expected it to have something to do with REPORTS. But, no - this software is not written for normal people, it is written for the same professionals who do the many amazing things that I have read about on the forum. They truly do think differently, don't they?

And, here are the results from last night:

Original Sleep Study AHI = 24.
Last Night's Survey says - 29! Great Score, enter your initials!

I knew I wasn't getting the sleep nirvana experience I had been looking for! No wonder I still feel the way I do.

Here's my plan:

• - wash the mask every night (to eliminate leaks which are running about 30 l/m).
  - wash my face real good every night (already doing that, but I can try harder)
  - Hang te hose above my bed instead of hanging down on the floor
  - order an Activa mask and try that
  - reset my machine for auto in the 6 - 9 range (instead of the straight 6 set by the professionals in room 736).

Any other sugestions? You guys have been so much help and I don't know what I would have done with you (really). Thanks so much.

[BlueHairBob]

Team,

I started this thread 3 and a half years ago - it started out bad and just didn't get that much better for 3 and a half years. I kept trying and tinkering and going to doctors and failing. And then, about 5 weeks ago, it started to work for me. As Mr. Monk would say, "Here's what happened..."

I got a Zeo so that I could see how I was sleeping in addition to how I was breathing. This caused me to be especially motivated to keep my mask on at all costs. The data would be worthless if I couldn't collect it. So, the first night, whenever I woke up, I gritted my teeth and left the octopus on and went back to sleep. A few nights later, I tightened down my mask more; I was adjusting to the feel of it. I adjusted the humidifier up and found that rainout was not a problem with the full-face mask i was using. Run-away pressures were still a problem, so I started lowering my upper limit by degrees until they stopped. I started practicing sleeping on my side in a way that does not cause mask leaks. And i tightened the octopus even more.

Higher humidifier setting, tighter mask, lower top end pressure - and 100% compliance for the first time in over 3 years. I am getting about 6.5 - 7 hours CPAP every night with an AHI of 5 - 9. That AHI isn't the greatest, but it is way better than the 29 I was seeing ON CPAP until now.

And here is the next crazy bit - I had been told that I needed a pressure between 6 and 9 cm: that things got worse at 9. But I found my original sleep study 2 weeks ago and studied the details (which my doctors apparently had not done). Here's the story: The titration study recorded 0.0 AHI at ALL pressures tested. They were trying to measure REM periods at various pressures, NOT AHI at that point. I had less incidence of REM at 9cm! It had nothing to do with breathing! i don't know how they could see an AHI of 28-30 with no CPAP and then 0.0 at all pressures starting at 4.5, but that is what the study said. I certainly don't see that, but I don't care right now.

I have been seeing a fair AHI for 6 weeks. And, 2 days out of 7 I don't take a nap - this is big for me. i feel much worse about 3 out of 7 days, but I have read that this can be normal and it can take several months to start really recovering.

In the past 2 weeks, I have been working my way off Ambien and it is going well.

When you guys told me to hang in there, I didn't expect it to take anywhere near this long, but it has finally paid off. I have a lot of hope.

Bob

[pdean44]

Congrats on a story that was almost tragic turned to a huge success from your perseverance. Kudos to you for getting the job done.

[Wulfman]

Hi Bob.

WOW! That's been some ordeal. Thanks for sharing "the rest of the story". (to borrow Paul Harvey's line)

Glad to hear you persevered and got it to work.

Take care.


Den