Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

[SaltLakeJan]

hi jnk,SWS, & Mar
Well I followed your advice, SWS's, and Mar's regarding sleep position. I got myself so "garbed up" DH said "You'll never get to sleep with that on." I couldn't find tennis balls, instead I firmly tied a round firm pillow around my waist. The pillow only covered my back from side to side. I made the ties from ripping up an old sheet. I had so much around my middle, I liked like a Geisha girl.

Next, I attached a small, soft rolled towel under my chin, SWS mentioned my head position, I realized that I wasn't as erect as I thought I was.

The result: I didn't sleep VERY much, but I did not sleep on my back, and my neck position was upright. This is the beginning of my training. I'll give these aids a few nights to see how they work out before I change to the child's bike helmet.

I have a long mirror in our bedroom, As I got out of bed this morning, all my "positional aids: were still attached. I happened to look up and saw my reflection in the mirror. Mask on head, a bundle under my neck, a big wad of sheets tied around my middle. I took it off, because I couldn't walk - but If I had a camera available, I would have had a photo of the POSITIONAL MONSTER FROM ANOTHER WORLD.

It is hard to judge how successful my LCD night's stats are. Once my neck pillow was secured under my chin, it projected into the hose junction of my mask. If I stirred, the hose popped off, it took a bit of time to find it, and get it back on.

so my leak was high Leak, 0.32L AHI 9.7 AI .08 Hi 9.6 Used Hours" 7 hrs 18

I didn't tape my mouth, the pillow was firm beneath my chin. Actually last night's stats are considerable better than the previous two nights. I'm going to refine/modify/change the towel beneath my chin. Any suggestions Friends.

I consider last night's experiment the beginning of POSITIONAL SUCCESS. I am going to steal dsm's sign off.
Cheers everyone
Jan

[robertmarilyn]

I have a long mirror in our bedroom, As I got out of bed this morning, all my "positional aids: were still attached. I happened to look up and saw my reflection in the mirror. Mask on head, a bundle under my neck, a big wad of sheets tied around my middle. I took it off, because I couldn't walk - but If I had a camera available, I would have had a photo of the POSITIONAL MONSTER FROM ANOTHER WORLD.
Jan

More later because right now I am working on uploading my last few days results into my thread...but do you ever get the feeling that maybe someone is filming us and at some point someone is going to walk into our room and shout "Surprise, you are on Candid Camera" (I'd have to find the camera and stomp on it if someone did that though)
mar

[-SWS]

Jan, this oldie post on TAS describes a somewhat unique positional experiment. I can't comment on how well or poorly it might work, since I have never tried that experiment. But the objective of that slight neck-propping experiment was to attempt to achieve a bit more airway clearance, by having the head tilted just slightly back:
http://www.talkaboutsleep.com/message-b ... sc&start=0

All kinds of interesting suggestions in this thread. And we're just getting started...

[jnk]

Leak, 0.32L AHI 9.7 AI .08 Hi 9.6 Used Hours" 7 hrs 18

In my opinion, those numbers (other than the leak) wouldn't be bad if you had been asleep all that time.

jeff

[-SWS]

Leak, 0.32L AHI 9.7 AI .08 Hi 9.6 Used Hours" 7 hrs 18

In my opinion, those numbers (other than the leak) wouldn't be bad if you had been asleep all that time.

jeff

Agreed...

On that same note I think part of this discussion will eventually need to explore how much of Jan's poor sleep and outstanding symptoms may be related to suboptimal CPAP therapy, and how much just may be related to an entire combination of yet other contributing energy/sleep factors.

I think there may be a lot of potential factors here collectively or simultaneously comprising Jan's good/poor quality of sleep on any given night. Similarly, there are probably multiple factors here that can collectively contribute to poor daytime energy on any given day. Sleep and CPAP are obviously one very prominent variable in this complicated equation. But there is a lot going on here IMO.

And that's not to say we shouldn't also discuss machine types, airway suction-type effects (starling resistor) potentially caused by Jan's nasal-resistance, possible esophageal closure and/or acid reflux issues, cheek puffing, etc.

[jnk]

. . . outstanding symptoms may be related to suboptimal CPAP therapy, and how much just may be related to an entire combination of yet other contributing energy/sleep factors. . . . machine types, airway suction-type effects (starling resistor) potentially caused by Jan's nasal-resistance, possible esophageal closure and/or acid reflux issues, cheek puffing, etc.

NOW we're cooking!

Where's Muffy?

[-SWS]

SAG/Muffy is probably cooking in his five-star SDB kitchen as we type...

Hope he gets a chance to stop in with suggestions or thoughts for Jan.

[robertmarilyn]

SAG/Muffy is probably cooking in his five-star SDB kitchen as we type...
Hope he gets a chance to stop in with suggestions or thoughts for Jan.

Oh no, yesterday I noticed I was getting close to 100 posts...I know SAG morphed to Muffy so that he wouldn't go over 1000 posts...am I supposed to morph before I hit the 100 post milepost (ha ha pun).

Oops too late...guess I'll wait to face the situation again when 1000 posts get close.
mar

[SaltLakeJan]

Mar,

Your reference to being on Candid Camera, was interesting. When I began Cpap, I had difficulty getting my mask on. I realized if I put it on, while looking in a mirror, than I could get everything straight. I don't mind wearing a mask, but I am careful about my appeareance, just a touch of vanity. So,when I looked in the mirror wearing the mask i was stunned - I didn't want that vision in my memory bank. Just then DH walked by and made the comment, "You look like you have just been surprised by Candid Camera"

Thanks for the post, I'll link with you later.
Jan

[SaltLakeJan]

SWS
I took a quick glance at the link - it is involved, I'll study it later. Tomorrow is my Doctor's appointment, and I am in "The getting ready mode" . I have learned from being linked to Marilyn's post. I am following her example and gathering information from my recent doctor visits, making notes. etc. Being linked to you gives me hope an answer will be found. I don't say much about it, but my fatigue feels never ending. I would prefer a free-wheeling life style, a motorcycle momma, maybe. (only kidding)

More later.

Thanks much. Jan

[robertmarilyn]

http://www.entoday.com/pt/re/entoday/pd ... -00003.pdf
I'm not sure how good that article is, but it seems generally relevant to the topic.

Thanks jnk,

I'm going to have to run that thing through the "Rested gal normal people talk" translator. It made my eyes cross...but I downloaded it to study and learn more big words. I did get an idea that more folks have success with XPAP after UPPP than previously thought!
mar

[SaltLakeJan]

Hi jeff
Thanks for the article, I didn't have time today to study it, but your post helped me and encourage me.[quote="-jnk wrote:

Leak, 0.32L AHI 9.7 AI .08 Hi 9.6 Used Hours" 7 hrs 18

In my opinion, those numbers (other than the leak) wouldn't be bad if you had been asleep all that time.

jeff[/quote]

Last night was an adventure, no way of knowing how long I slept - but I think I it was several hours at a stretch.
I'm getting all my "Stuff" together for my appointment tomorrow. I think I am counting on this sleep doc being a superman - I don't want to be diasappointed, I'm scaling myself back today, hoping to meet a good dr who will take an interest in me.

more later.
Jan

[jnk]

http://www.entoday.com/pt/re/entoday/pd ... -00003.pdf
I'm not sure how good that article is, but it seems generally relevant to the topic.

Thanks jnk,

I'm going to have to run that thing through the "Rested gal normal people talk" translator. It made my eyes cross...but I downloaded it to study and learn more big words. I did get an idea that more folks have success with XPAP after UPPP than previously thought!
mar

Don't bother running it through the translator. You already got the point of why I posted it: There can be some challenges with PAP therapy after UPPP, but many have been very successful with PAP afterward.

With focus and attention to details in dealing with the challenges, I am sure you will find ways to make it work.

jeff

[robertmarilyn]

I'm getting all my "Stuff" together for my appointment tomorrow. I think I am counting on this sleep doc being a superman - I don't want to be diasappointed, I'm scaling myself back today, hoping to meet a good dr who will take an interest in me.
more later.
Jan

Jan,

I suspect I had an exceptionally abnormally successful new doctor's appointment and I don't want your new doctor to suffer in comparison just because he has to follow my stellar trip to the doctor. So I think it is very smart to scale down your expectations...you'll be prepared, you have a lot more knowledge than you did even a week ago, you will be able to tell if the doctor is willing to work with an informed patient. And then you can go from there.

I know there are doctors out there who do enjoy working with informed patients and go to the appointment assuming this new doctor will be one of those. And we'll be here so you are never alone. I'll be thinking of you tomorrow.
mar

[SaltLakeJan]

Hello Mar,
Thanks for your message, wishing me success tomorrow. I appreciate your thoughtfulness.
Jan