Doc took me off of cpap shocked, confused (long)

[SleepingUgly]

ChicagoGramps

Is it Granny or Gramps?!

I too have read that there is a residual effect (I think 1 day) with CPAP. Consequently, when I had my last NPSG, I went off CPAP for a couple of days before going into the NPSG, so I could see what is really going on.

I wonder if that would impact the OP's results... Had you used CPAP the night before the last NPSG?

[SleepingUgly]

It's so hard to be so tired, finally get a diagnosis that might explain it, that has a treatment that is supposed to be efficacious...only to not find benefit from the therapy. I feel your pain.

[jnk]

Surely even people in Chicago understand that studies quote other studies?

The statement I quoted was about residual effect lasting for days. Yes, the statement I quoted was made in a study about residual effect the same night, but that study quoted another study that was about residual effect lasting days, not hours. I chose the statement in one study about another study because I thought maybe that study's reference to the other study was stated simply enough for ChicagoGrumps/Rooster to understand. Obviously, I was wrong. Again.

[SleepingUgly]

ChicagoGrumps/Rooster

Don't you mean ChicagoGrumps/Roster (with one 'O')?!

[jnk]

He's obviously missing more than an "o".

[Julie]

And I wonder about something else - if your mask was not well fitted so as to not produce more than very minor leakage (something that one's noted to be difficult with) and if you were to try another one that's really suited to you, would you sleep a lot better and feel rested? Going off Cpap seems a radical way to treat something you were originally diagnosed as having! Too many doctors are NOT knowledgable at all about the mechanics of therapy and maybe you need a different approach.

Out of curiosity though, have you been tested for thyroid problems?

[mollete]

The statement I quoted was about residual effect lasting for days.

Talk about a Small World!

Do you remember the "expert" on another board (who interestingly authored a book)(not a pamphlet) who was just so taken aback that (in this case, I) could suggest something so stupid?

And I thought everybody knew about The CPAP Hysteresis Phenomenon.

[mollete]

Tomorrow I'll be posting CPAP Basics - 4 and I really appreciated your story out of the old west in number 3. I was thinking of starting out with the Slicker and Sheriff Bob if that would be okay?

Oh boy! Looking forward to it!

I guess if it will take on an Old West Theme I'll have to put up the Dillon and roll out the Gatling:

[Pap365]

Thank you everyone who responded. Your advice and support is very comforting. I tried to respond to all the questions you asked. If I’ve forgotten anyone I apologize and blame it on lack of sleep!


@JointPain: interesting idea. My apap range is 7-11 Cm H2O. My titrated pressure was 8 CmH2O so I could set my machine 7 and see what happens.

@SleepWellCPAP: Pick a mask I’ve probably tried it! There are a few of us on the forum who use and love the fitlife. I’ve never understood its reputation as a mask of last resort.

@SU: I don’t have a full copy of my sleep study in March and I haven’t met with my sleep doc to review the MSLT yet. The only reference to apneas during REM sleep is the following “The patient did not exhibit significant sleep apnea on this study. Infrequent snoring was noted. This included some REM sleep time, though no supine sleep was recorded. Clinical correlation is recommended.” SAO2 was normal, lowest desat was 93. I am not taking any meds that would affect REM sleep. I was off of CPAP for three weeks before my MSLT.

@jencat824: Thank you for the suggestions. I think the fibro has something to do with my sleep problems too. I tried the paleo diet for a while in an effort to lose some weight and improve my health. I didn’t lose much weight but I did feel a bit better. My husband has a gluten allergy so we’re gluten/wheat free anyway. Thank you for the link, I’ll check it out.

@purple: My view on sleeping pills is similar to yours. I have never taken one. However I was/am so desperate to fall asleep with my mask that I was willing to try anything. My sleep hygiene is good.

@Julie: My mask fits well and my leak line looks good on SH so I don’t think that is a problem. TSH and T4 were normal.

[SleepingUgly]

I would get a copy of all your sleep studies, as the report should indicate what your REM AHI was. If your problems are worse in REM, it's possible that in the study where your AHI was 9, you had more REM and therefore enough events to drive your overall AHI up. But maybe you had less REM in the other studies. I think you want to be sure you don't have SDB before abandoning this line of thinking. So I'd get the reports, look at your REM AHI, discuss that as well as whether FLs that were possibly RERAs with your doctor, ask how it is you "had" OSA and now don't... In short, satisfy yourself and your doctor that there is no SDB that could be causing your symptoms.

If it looks like you really don't have SDB, since the CPAP never helped your EDS, I say good riddance to it! If you're going to feel equally cruddy with and without CPAP, and you really don't have SDB, there is no point to sleeping with CPAP. It's not going to improve your functioning in the absence of a disorder to treat. Then you move on.

I know you must have had hopes for this modality, but I think it's better to move on to something that might help than to keep looking at CPAP as a solution. But first make sure you really don't have SDB.

[Pap365]

Thanks SU,
I emailed my sleep doc and asked for copies of my sleep studies and I asked if the studies caputured enough REM sleep to rule out apnea during REM sleep.