Please Let it Be the Apnea

[Woke]

I don't know much about it but can certainly tell you what I do know and what my experience has been, if you're interested.

Absolutely!  Thank you for saying something, this altruistic volunteerism is the only reason I have heard the term.  I have been reading a bit online where I find it, but it sounds like much relating to it is still rather unknown.

[SarcasticDave94]

Woke, Keep working at the Apnea therapy and whatever else there is that may hinder. Best to your near future successes. Those of us on AB really like it when others get success as well. Besides, I think it's in the rules somewhere that you have to succeed.

[Plmnb]

Plmnb –
I am sorry to have caused you sadness, it was not the intent.  I appreciate the sympathy and concern: I have forwarded some questions to the surgeon’s office that were suggested in this thread.  I see in your profile snapshot that you say your are a “uvulectomy victim,” and I wanted to ask what your experience has been with that.  It is possible that a uvulectomy would be involved as it appears as part of one of the surgery names in the list.  This is among my questions to the surgeon.
Can I also assume, based on your name, that you have Periodic Limb Movements?  bonjour pointed out that he sees a significant number listed in my sleep study, but I do not have a perspective on this regarding what is normal/abnormal and how my sleep study stacks up, nor have I been personally conscious of this problem.  If I can ask: what in your experience does this affect?  Did you know it was an issue?
 

Good evening Woke.

I do realize you didn't intend to cause me sadness, it's just I FEEL your pain, both physical and emotional, and being an empath it really hit home.
I had my Uvulectomy at over 8 years ago, it may be closer to over 10 years, I can't really remember, perhaps because I'd like to forget it.  I did not do well with this procedure, I think at the same time I had some other work done.  Or, around the same time I had other procedures done, polyps, turbinates, and septum  It really is hazy, the chronology of all of it.

NOTE: I AM NOT TRYING TO CONVINCE YOU NOT TO HAVE THE SURGERY, RATHER TO TELL YOU MY EXPERIENCE AND LET YOU DISCUSS SOME OF THESE POINTS WITH YOUR DOCTOR SO YOU CAN DECIDE WHAT IS BEST FOR YOU:

I don't remember how I ended up at the ENT's office discussing it with him.  I recall my sleep apnea doctor, also a pulmonologist, telling me it wasn't a good idea, that it was too experimental and the results were not promising.  I guess I was so desperate that I went ahead with it anyway.

I had very little pain immediately following the surgery, but hours later, once I was home I felt like I was in hell.  Imagine the WORST sore throat ever visited upon a living being.  On top of the sore throat, I spent a huge amount of time throwing up in the bathtub. I ended up in the emergency room.  Apparently the blood from my surgery(ies) had been draining into my stomach.

There wasn't much that could be done about it and I was released.  Eventually I did stop throwing up, but the sore throat pain persisted for a while.  I could not consume much nourishment or swallow pain medication.

Once the ENT released me from his care I was seen by my sleep doc.  He had me do another sleep lab study to see if the procedures helped.  I recall being told there was minimal improvement with my apnea and I had to stay on CPAP.  Considering everything I went through and having the results I ended up with...well, it just wasn't worth it, to me.

Perhaps over the years advancements have been made and things would be different for you.  If you read either of my two main threads you will note I have had pretty poor success with PAP therapy as well, but I chalk this up to not having the medical community show as much interest and in depth knowledge in my care as compared to the advice that is found on this board.

Regarding my name, Plmnb,   :  I did not even notice that my screen name could mean periodic limb movement until you mentioned it!  I just chose to use all the first letters of my names, rofl.  I do have some interesting things I do in my sleep, and Sleeprider has suggested these activities may be forms of parasominias.  I just asked my current sleep doctor about them, and showed him video of the one where I sit up and sleep with my legs crossed Indian style, and my head flopped over. (I did actually ask the doctor and the sleep lab to keep a particular eye out for the "yoga", as ApneaQuestions calls it, prior to my new sleep study in November.  I had no clue I was doing this action until my new husband told me about it.  The sleep lab says they didn't see me do it and I have had two studies done a month apart.)  I didn't tell him about the sleep smoking because I just discovered it last night.  but he did say to bring up the parasominia question at my psych appointment at the end of the month.  The sleep dr. said he doesn't think it is because of my apnea.  However, I am sure these activities contribute greatly to my fragmented sleep.


I hope at least something I have said will help you in finding good, healthy sleep.

Regards,
Phoebe
(Plmnb)

[Woke]

I do not know that anyone is particularly following this, but just in case: apologies for the lack of data.  My nights have been particularly bad due to largely unrelated circumstances, so I do not feel I can judge the change made.
While I am commenting anyway: with rare exception the bloating from air swallowing continues to be a painful problem, sometimes rather severe.  I do not think it is my mouth and have tried a chinstrap, but perhaps I could try “taping,” etc.  Lowering pressure sounds like a possibility for improvement, moving toward the next phase of adjustment.  Most OTCs I have seen mentioned are for after-the-fact alleviation of bloating, not quite as helpful.  I am open to suggestions in this matter.
I am on a nightly reflux medication and have been using a long wedge pillow for some time for another problem, both things that I understand are supposed to improve the situation.
Online research in related topics has been leading to the discovery of things I have incorrectly assumed are “normal,” on account of not knowing anything else.  I am now more confident that surgery is a promising option based on these things.  Perhaps it would still be rather fruitless, but hope is a powerful thing.
I also believe the frustrating discussion of “compliance” in my case is a misunderstanding, perhaps also with many of you.  Now, I am armed with this information for the next time it comes up: "noncompliance" assumes I use the CPAP for a few hours, take it off, then continue trying to sleep; the reality being that I am done trying to sleep altogether.

There are so many things in life that we effectively miscommunicate owing to ignorance, it is at times amazing we get anything done.
 
Plmnb –
That is an amusing name coincidence, definitely better than adding that problem to the mix!  Yours is an impressive amount of sleep activity, I hope they can figure it out and suddenly your success with CPAP skyrockets.  Having witnessed [much less involved] sleep walking/talking, as well as talking with someone who has periodic sleep paralysis, I am reminded to count my blessings.

[Sleeprider]

Woke, we still have not seen any results from your Vauto settings. Those results will tell us if the events we saw on the VPAP S were central or obstructive. I strongly guess they are central based on a couple zoomed shots we saw before, but guesses are not worth anyone's time. You now raise the issue of aerophagia, and if we actually had something to work from, like data, we might be able to suggest much lower and more comfortable settings. Anyway, the last time we looked, you were using a high fixed pressure of 23/16, and getting pretty poor results. We continue to see in your posts that you are uncomfortable and not sleeping. It is very frustrating being unable to help you because you seem to assume we can't. The question is, when are you going to do something about it? At the very least, we can set you up for comfort. It can't be much worse than this.

[Woke]

I did not mean to give the impression that I do not believe this board could significantly increase the effectiveness of therapy, it sounds as though you have had great success and probably saved lives doing so.

My recent nights are most affected due to a particularly bad pain flare up and my efforts to handle it, so it seems like the data would have too much going on with regards to uncontrolled variables.  Perhaps it does not matter, so I have posted those missing days.  My perception is primarily driven by the AHIs listed (0.76, 3.77, and 0.97 the last three nights, respectively), which seem unlikely.  Perhaps I should not have made a post at all until I had something better to show, I really am trying to get good material.  

Back on the 23rd I had posted the OSCAR screenshots from the first night of the VAuto use (the previous night, of the 22nd).  I thought it was a lousy example then, but it may be better than these.  Are there additional pertinent sections I should be including?

[jaswilliams]

I think you min epap is too high to this is the primary reason your having the issues with air swallowing I suggest reducing the min epap whilst in APAP mode and see what your machine wants to do with the pressure, Why did you raise your PS to 7 ?


Did you have the recommended titration study mentioned in your posted sleep study

[Sleeprider]

Let's drastically cut back pressure first, then pressure support. You have no events to work from, and I want to work for comfort and eliminate the aerophagia and leaks. Ready?
EPAP min 9.0
Max Pressure 20
PS 5.0

I'm expecting to create some events, but they will teach us what you need. Let's see if you finally sleep.

[Woke]

I think perhaps I am mixing two things together: is pressure support specifically the difference between nominal-minimum EPAP and nominal-maximum IPAP, or rather the floating mandatory distance that must be maintained between the actual EPAP vs. actual IPAP?  I remember the respiratory therapist reading what was sent saying that IPAP was 23 and the difference was supposed to be 7, hence she arrived at 16 as the minimum.

I ended up changing it because I had gone back into the clinician settings for something else (OSCAR shows that my climate control is set to manual even though it is actually auto, it must just not be pulling that information).  While I was in there I looked over other things, saw pressure support was at 4, and the number I had heard was 7.  The machine settings aren’t the only thing on “auto,” eh?  At 7 this probably means VAuto cannot really function any different that S-mode.

I only have in my possession what I posted as far as the sleep studies, so just the initial split-night, but I did have a second night for the purposes of checking performance with a bi-level.

I have made the adjustments to the numbers you posted.  With some luck tonight is less disastrous in general and these settings get a fair shake!

[Gideon]

PS is the actual difference between EPAP and IPAP at any point in time. IPAP will follow EPAP by the value of the PS.