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It do take some time to get through 487 posts.

An interesting aside, I fiddled with a 38 reader that had been working perfectly in an XP machine that would just not be recognized in a new machine. However, a new reader (same Rev) was instantly recognized. I wish there was a way to reflash the reader to troubleshoot that aspect. Where's Hacker?

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secret agent girl wrote:SAG doesn’t mean “secret agent girl” here, does it? Cuz I’m not NM.

"SAG" refers to "Still Another Guest," a poster who has patiently helped to untangle some difficult questions for many of us over the years. What little I now think I know about this stuff has come from reading posts made by people with many years of experience with it, like him, who have helped others reason on what it is logical and reasonable to do and to expect when trying to improve sleep, not just breathing.

secret agent girl wrote:Here’s what I came up with:
· I used the machine for almost two months
· Negligible mask leaks and no discomfort
· Smart card showed more than acceptable AHI
· And I felt consistently and significantly worse

Is it possible you were titrated to the wrong pressure? Is your upcoming study a diagnostic study or a titration? Do you have UARS or OSA?

What about going to the world's leaders--Stanford? If you don't live nearby, it wouldn't be a good option for long-term follow-up, but they could do the sleep study and the titration.

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secret agent girl wrote:Could a "bad" pressure result in no leaks, no discomfort, great AHI, etc. and still leave the person feeling worse than pre-treatment?

I'm no expert, but I think a sub-therapeutic pressure could result in eliminating your apneas/hypopneas, but turning them into unaddressed RERAs. Does your machine report RERAs or show you FL graphs?

I don't know... But I'd like to proceed in a way that is respectful of and efficient with my health, time, insurance/funds.

The cost of getting to Stanford would be a factor, but they are on most insurance plans, so your sleep study may very well be covered there. Your insurance might limit how many sleep studies you can have in 365 days, though. Anyway, just something to think about.

I'm not clear on whether she would have the new study just do a straight titration... whether it would be helpful and she'd consider comparing to a bi-level titration, or what. I still feel so ignorant! If they do a straight titration and say "yep, it's 10" and don't look for or discover anything else, I will consider that a waste of time and lots of money. And I know it's silly, but I still feel kinda embarrassed about going in for another appoint to ask about it. The staff in her office is a little hard to take.

Then how about calling and leaving a message for her to call you back? Ask her these questions, and also ask if her lab scores RERAs and would she titrate you to eliminate them? Is this where you had your first sleep study?

Well, whatever. It's my birthday this week and I'm gonna be a [square number] old, which I'm taking as an auspicious sign. It can really help to be able to pick and choose one's "signs"!

I wish I were good at math so I'd know how old you are (36?), but happy birthday anyway!

secret agent girl wrote: . . . Could a "bad" pressure result in no leaks, no discomfort, great AHI, etc. and still leave the person feeling worse than pre-treatment? . . .

It would appear that the answer to that can be "yes" for some people with sleep-arousal troubles. For them, CPAP may make the problem worse. But sometimes if a person like that tries a higher pressure than the pressure that gets rid of home-machine detected events, that can make the person feel better, if the higher pressure gets rid of the snoring and minor breathing events not always counted by home machines. In other words, titrating by how one feels can be useful beyond titrating by the reported numbers alone.

secret agent girl wrote: . . . If they do a straight titration and say "yep, it's 10" and don't look for or discover anything else, I will consider that a waste of time and lots of money . . .

I guess titration could sometimes be a waste of money, I don't know, but for my money, a well-done titration is one of the most valuable services offered by the entire sleep-medicine machine. If a tech documents how you react to various pressures throughout the night and is able to make sure no other sleep issues are happening beyond breathing-related events, that is a very valuable thing to have a copy of in your personal files. I consider the titration to be more valuable than a diagnostic sleep study, because, to me, response to treatment is the key.

You have to be very vocal to the doc. She can't know how much trouble you are having, how much worse you are feeling, if you don't tell her straight out. That is not complaining; that is being a good communicator. She can't make the argument to insurance that you need to try bilevel if you don't give her the information she needs to make her case for you, for example. Be kind, sure. Be respectful, sure. But she works for you.

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Happy birthday week! I hope that you find answers to why you feel worse with CPAP treatment. I wonder if oxygen desaturation is playing a role in why you are not feeling better. I agree with the other poster who suggested looking at air flow limitations. Good luck! I bet you and your sleep doctor will be able to figure it out and get you on the road to feeling better.

secret agent girl wrote:I'm afraid to answer those other questions in case there's a right answer and I get it wrong...

I think that's a helpful answer (however, if one of my kids said that, I'd hit 'em upside the head with a shovel).

secret agent girl wrote:I'd be glad to summarize, and post any charts or whatnot, if that's what it took.

OK, then...

• Post a list of medications that you took during the NPSGs
• Scan and post all the pages of the sleep reports that you have
• Get a hold of the raw data files from the NPSGs (they should be in the neighborhood of ~120 meg each) and upload them to a third party storage server (there's a bunch of free ones out there)
• Read and reflect upon these:
  
  Treat!
  Don't Treat!

Every medication must be carefully reviewed for its effect on sleep. There are tons of them that are notorious sleep-destroyers. Even vitamins can create issues. For example, in one of your posts you mention taking B-supplements. Tossing down B-complex before bedtime can create significant sleep problems.

Multiple times in you posts you say the titrating technician was a FM. Well, she (go back and check sex. Of the tech) might not be the FM. The FM could have been the scorer or the interpreting physician, and the titrating technician was simply placed in a difficult to impossible position.

BTW, jnk made a good point when he was talking about Dr. Park's presentation where sometimes you gotta step back and just ask yourself "WTF am I really doing here?"

jnk paraphrase Park wrote:He said that treatment of sleep apnea should be goal-based beyond reducing measured numbers, and he made his point by noting that someone with no symptoms beyond measured numbers may not need treatment, much in the same way that someone with symptoms but low numbers may still need further treatment. He was not discounting the usefulness of the numbers when he said that, but was stressing that the goal should be feeling better and being healthier so that results can be measure beyond simple reduction of RDI.

viewtopic.php?f=1&t=48918&st=0&sk=t&sd=a

OK, maybe not those exact words (or acronym).

secret agent girl wrote:I've read about the increased risk of the many potential adverse health repercussions of not treating OSA. I hear 'em--loud and clear. Please resist repeating them to me; that horse is dead.

Not only will I not repeat them to you, I will take a somewhat opposing view.

It is not clear what the long term benefits of treating OSA with AHI < 20 (or for that matter even < 30) really are. I mean, the big Yaggi study showed the incidence of catastrophic events didn't appear until AHI >36! And that was with treatment!

What can be shown, however, is that mortality increases with inadequate sleep (or for that matter, too much sleep). Kripke:



So "IMHO" (saying "IMHO" is a kind of cop-out in case one says "the wrong answer") if you've gone from 7 hours of sleep before treatment to 5 hours of sleep with treatment, now you have added "potential adverse health repercussions".

(BTW, while you mention your AHI is 70, take a closer look to see if that's correct, and that's not the total number of events.)

NotMuffy wrote:An interesting aside, I fiddled with a 38 reader that had been working perfectly in an XP machine that would just not be recognized in a new machine. However, a new reader (same Rev) was instantly recognized.

I give up.

Took the 38 reader that wouldn't load in the new machine. Got another old machine that wouldn't even load the Respironics driver package because Encore wasn't there (It lied. It is.)

OK, so this is gonna be a problem machine, right?

Plugs in the 38 reader and Device Manager sees it instantly. Even picked the right driver (which had been manually dropped in the driver bucket).

Firmware by Satan.

Oh well.

Since we're on our second generation of SysOne and SD cards already I guess this is going to be academic soon enough.

THAT"S NOT GOOD ENOUGH!! THERE HAS TO BE A REASON!!!!

OK, there's a computer on the left and a computer on the right. Both XP SP3.

I have an old 38 reader in my left hand and a new 38 reader in my right hand. Both Rev F.

I have at the ready a 22 oz ball peen hammer. I'm going to make my own "firmware".

There ain't anything much firmer than a ball peen hammer.

Put the hammer down. Take 10 sloooow, deep breaths... In through your nose 1, 2, 3, 4 (5 or 6 if you can), and out through your mouth 1, 2, 3, 4, 5, 6 (7, 8, 9 if you can)...