bjhunt01 therapy help thread

[bjhunt01]

Thank you Pugsy for all the information you share and advice. I'll focus on "There is no urgent drastic need to increase the maximum at this time....if it were me I think I would work on resolving the mouth and chipmunk cheek and leak issues first." That one is a toughy but so am I. I'm determined to get that and ideally not have to wear all that yukky tape eventually. That would be heaven. It's so amazing all the information and subleties of it that we need to know and no one gives us that - no doctor or DME. So grateful for your help! Hope you have a great evening!

[Tweety]

I had a lot of problems with chipmunk cheeks, too. I had to vertically tape my mouth even with a full-face mask, because my jaw drop would make it leak otherwise, and then I was dealing with chipmunk cheeks AND ffm leaking . The soft stretchy scunci headband with a nasal mask fixed that for me, because it mostly stops my cheeks from inflating. Since your allodynia is an issue--just spitballing here--maybe something like childrens' earmuffs on your cheeks, that you wear upside down under your chin? I can't even imagine the visual . Or maybe vertical strips of tape over your cheeks would provide enough resistance to keep them from puffing out? Hmmm, I might try the cheek-tape idea myself, tonight. The headband does get a little warm on hot nights, so it would be nice to have an alternative (and my husband hasn't had enough surprises lately ).

[bjhunt01]

Hi Tweety: Gosh I think we should post pictures don't you??? So this past week since I discovered the Micropore paper tape, I'm a beauty. Here's my routine: Two long strips horizontally across my mouth. I press my lips together to do this. Then I have three verticals: one on either side of my face running from about my cheekbone to down below my jaw to lessen jaw drop and one from just below my nose to under my chin. THEN the last one runs from one jawbone under my chin over to the other jawbone. If I do a pretty good job of this I can usually make it til about 8:00 am or so and then I start dropping and either motorboating or pig rooting. Oh my is it a joy to pull all that off. It started to damage my skin on one side below my mouth so last night I only did the vertical from nose to under chin and the morning on Sleepyhead looks like I was in a war zone. Going to post that next. Did you know that Pugsy says she can talk with her CPAP on and not have air go into her mouth!!! I'm practicing to try to find the golden spot in my throat to pull that off. It's kind of feels like trying to create a furball in the back of your throat - for me anyway - but I can't maintain it for more than a few words.

OK so I have some Scunci's now. Did you cut a hole for your ears too? My noises are coming from inside my throat so I don't know how much this will help, but I am on the train of trying everything just to see. I start out with my tongue up on the roof, but once I'm really relaxed, like a lot of people it falls back into my throat. I no longer have a life. I spend all my time trying to figure this out!

[bjhunt01]

Hi Pugsy and all other amazing helpers!

Here is my Sleepyhead for last night. I changed many things so this one may not "count."

First, I couldn't tape myself up like I usually do because I was getting sores on the lower side of my mouth. So last night I only had one piece of tape running from just under my nose to under my chin.

Second, I also wanted a break from the Bleep so went back to a nasal pillow mask I like. With the Bleep I don't feel like enough air is going up through my nose. Last night I used the Tap Pap except I removed the mouthpiece as it hurts and added their straps. It's the only nasal pillow mask out of 3 where the pillows really fit my nose AND the pillows can be rotated to make them fit whereas the others are stuck in place. I feel a good sense of air going in my nostrils with this mask. It's not as stable without the mouthpiece though and since I hadn't worn it in awhile, there was a bit of adjusting through the night to refind the sweet spot.

Third, I decided to bump up minimum from 6.4 to 6.6 and maximum to 10 and vowed to keep it at 10 all night no matter what. No ramp. EPR at 1. I actually went to bed after 1:30. And I was awake from maybe 4:30 on for a few hours. Lots of Centrals but the others don't look bad!

The thing that strikes me is that even though I was at 10 and kept it there, it was still bumping up against that 10! That surprised me. The weird stuff in the middle is when I was awake and reading to try to go back to sleep.

If you see anything that you can suggest, please do! Thank you!

[zonker]

OK so I have some Scunci's now. Did you cut a hole for your ears too?

i've been using them for a number of years and haven't felt the need to cut ear holes. i do a bit of modding on mine. like an additional thin band to keep my bottom lip in place. i also use a wee bit of cloth against my lips as i have a tendency to drool every now and then.

do you also use a firm foam cervical collar?

oh and btw, in case no else has mentioned, you can chuck the scuncis in the wash to shrink them up after wearing. they won't last forever, but by washing them, they seem to last me a few months.

[bjhunt01]

Zonker: So you wear it like a reverse head band. And the back doesn't slide down onto your neck at night?

I've got the cervical collar now too. Will add that tonight. I forgot about that.

My gosh! Don't some of us look really weird at night!!!! When I first started out, because my head hurt so much from the straps, I was wearing a winter knitted cap, then put my CPAP on over that, tape on mouth. Maybe that's why I don't have a "boyfriend" anymore if you can call a 78 year old man a boyfriend. Haha! Well he told me I talked in my sleep, which led to getting the SnoreLab app, which helped me realize I snored, which led to telling my cardiologist, which led to a home sleep study...and the rest is history. And now I have energy again.

I really think we should have a gallery of pictures of what some of us look like when we go off to sleep with all our gizmos on

[Dog Slobber]

I really think we should have a gallery of pictures of what some of us look like when we go off to sleep with all our gizmos on

This is a great idea.

[Tweety]

Hi Tweety: Gosh I think we should post pictures don't you??? So this past week since I discovered the Micropore paper tape, I'm a beauty. Here's my routine: Two long strips horizontally across my mouth. I press my lips together to do this. Then I have three verticals: one on either side of my face running from about my cheekbone to down below my jaw to lessen jaw drop and one from just below my nose to under my chin. THEN the last one runs from one jawbone under my chin over to the other jawbone. If I do a pretty good job of this I can usually make it til about 8:00 am or so and then I start dropping and either motorboating or pig rooting. Oh my is it a joy to pull all that off. It started to damage my skin on one side below my mouth so last night I only did the vertical from nose to under chin and the morning on Sleepyhead looks like I was in a war zone. Going to post that next. Did you know that Pugsy says she can talk with her CPAP on and not have air go into her mouth!!! I'm practicing to try to find the golden spot in my throat to pull that off. It's kind of feels like trying to create a furball in the back of your throat - for me anyway - but I can't maintain it for more than a few words.

OK so I have some Scunci's now. Did you cut a hole for your ears too? My noises are coming from inside my throat so I don't know how much this will help, but I am on the train of trying everything just to see. I start out with my tongue up on the roof, but once I'm really relaxed, like a lot of people it falls back into my throat. I no longer have a life. I spend all my time trying to figure this out!

I haven't cut holes for my ears, but sometimes my ears can get folded up under the hairband when I turn over to the other side, which hurts, so I'm considering it.

I started out with a similar taping pattern to yours, but with the Nexcare Sensitive Skin tape (blue color; it doesn't mess up my skin as much, and it will re-stick itself back down if I need to peel it back to cough). I turn one end of the tape under the tiniest bit so I have something to grip if I need to remove it. Once I started using Zonker's scunci trick (I credit Zonker because he's the most enthusiastic proponent ), I found it helped the tape to stay stuck, and I didn't need to use as much of it. And the best part is, now that I'm used to the scunci, I find I don't need to completely seal my lips with the tape--I'm down to two vertical pieces just off the center of my mouth with my lips rolled under, which holds my lips together and keeps my mouth from dropping open. Even if a little air pushes out, the hairband stops the motorboating, and also adds enough pressure over my cheeks to stop the chipmunk cheeks. I will say that it was a gradual transition--as I started sleeping better and got more comfortable with breathing through my nose, I wasn't trying as hard to open my mouth in my sleep, started using less tape, tried it without the cervical collar, etc. I've got a closet full of equipment I tried out while transitioning . I really hope the headbands help!

[bjhunt01]

Hi Tweety: Gosh I think we should post pictures don't you??? So this past week since I discovered the Micropore paper tape, I'm a beauty. Here's my routine: Two long strips horizontally across my mouth. I press my lips together to do this. Then I have three verticals: one on either side of my face running from about my cheekbone to down below my jaw to lessen jaw drop and one from just below my nose to under my chin. THEN the last one runs from one jawbone under my chin over to the other jawbone. If I do a pretty good job of this I can usually make it til about 8:00 am or so and then I start dropping and either motorboating or pig rooting. Oh my is it a joy to pull all that off. It started to damage my skin on one side below my mouth so last night I only did the vertical from nose to under chin and the morning on Sleepyhead looks like I was in a war zone. Going to post that next. Did you know that Pugsy says she can talk with her CPAP on and not have air go into her mouth!!! I'm practicing to try to find the golden spot in my throat to pull that off. It's kind of feels like trying to create a furball in the back of your throat - for me anyway - but I can't maintain it for more than a few words.

OK so I have some Scunci's now. Did you cut a hole for your ears too? My noises are coming from inside my throat so I don't know how much this will help, but I am on the train of trying everything just to see. I start out with my tongue up on the roof, but once I'm really relaxed, like a lot of people it falls back into my throat. I no longer have a life. I spend all my time trying to figure this out!

I haven't cut holes for my ears, but sometimes my ears can get folded up under the hairband when I turn over to the other side, which hurts, so I'm considering it.

I started out with a similar taping pattern to yours, but with the Nexcare Sensitive Skin tape (blue color; it doesn't mess up my skin as much, and it will re-stick itself back down if I need to peel it back to cough). I turn one end of the tape under the tiniest bit so I have something to grip if I need to remove it. Once I started using Zonker's scunci trick (I credit Zonker because he's the most enthusiastic proponent ), I found it helped the tape to stay stuck, and I didn't need to use as much of it. And the best part is, now that I'm used to the scunci, I find I don't need to completely seal my lips with the tape--I'm down to two vertical pieces just off the center of my mouth with my lips rolled under, which holds my lips together and keeps my mouth from dropping open. Even if a little air pushes out, the hairband stops the motorboating, and also adds enough pressure over my cheeks to stop the chipmunk cheeks. I will say that it was a gradual transition--as I started sleeping better and got more comfortable with breathing through my nose, I wasn't trying as hard to open my mouth in my sleep, started using less tape, tried it without the cervical collar, etc. I've got a closet full of equipment I tried out while transitioning . I really hope the headbands help!

Aha! Blue tape! So it's back to the drug store for a new tape search!!! Me too - closet full - and gee you hate to throw stuff away but it's not like you can give it to Goodwill either.

[zonker]

Zonker: So you wear it like a reverse head band. And the back doesn't slide down onto your neck at night?

WARNING****WARNING*****WARNING*****

not suitable for work!

what you are about to see may upset some viewers. discretion IS advised!!


i'm going to post an image of myself in my scunci rig.

this is your last warning!

IMG_0081.JPG

once you have recovered, let me know if you have any questions.

[bjhunt01]

Zonker: So you wear it like a reverse head band. And the back doesn't slide down onto your neck at night?

WARNING****WARNING*****WARNING*****

not suitable for work!

what you are about to see may upset some viewers. discretion IS advised!!


i'm going to post an image of myself in my scunci rig.

this is your last warning!





IMG_0081.JPG


once you have recovered, let me know if you have any questions.

Oh my God - you poor man! You look like you've been taken hostage by terrorists!!! But you're smiling under that I can tell so maybe not!
So you have 2 Scuncis then? Geez! You get 5 Gold Stars for starting the Gallery of Pictures or Gallery of CPAP Hostages!!!! Love it - thanks!
Seriously - this really helps. Do you tape your mouth under that?

[Pugsy]

Can you tell me when you were actually for sure asleep last night?
The awake time stuff that got flagged needs to be removed from the evaluation and I don't know when you were asleep for sure.

[zonker]

Seriously - this really helps. Do you tape your mouth under that?

nope, no tape. this is what drew me to the scuncis. i didn't want to shave and do the tape thing. though djams seems to tape with his beard and no problem. but, alas, not me.

this really does have enough holding power that i don't need the tape. but i really have to have that collar as well. i went on an overnight trip to the grand canyon last year and forgot the collar. yikes! found out for sure that scuncis alone won't do the trick. won't make that mistake again!

[bjhunt01]

Can you tell me when you were actually for sure asleep last night?
The awake time stuff that got flagged needs to be removed from the evaluation and I don't know when you were asleep for sure.

Pugsy: Here's a revised screen. I was able to delete the middle where I was awake because it was in a separate block that I could turn off. I would say I fell back asleep about 8:15, but from then on my SnoreLab is very noisy - mouth leaks and motorboats. Hope this is more helpful. If there is a way to delete the data up until 8:15 to 8:20, I don't know how yet.

[Dreaming1]

You can get a dental appliance that is molded to fit your teeth, upper an lower. They aren’t cheap if you get a good Mandibular Advancement Splint. It can help pull your lower jaw forward and stabilize your airway against big collapses, allowing the cpap to not work as hard or at as high a pressure. Your experience may very in pressure needed, but it will keep you jaw locked together at night and it won’t drop because it can’t drop. Expect to pay $500-$2,500 depending on the dentist that makes it. Insurance may help for Medicare. I’ve been told it will. If it’s covered, I’d get one if I were you and give it a go and make your insurance work as hard as it can. Your teeth may hurt a little to start, but don’t have the dentist titrate your jaw too forward with it. Use it more as a stabilizer. You will still have to tape your lips closed with cpap though, but way less. I have a friend that uses both a Mandibular Advancement Splint and Cpap as dual therapy. There are dentists specifically trained for it, but do your research too, if you consider it. Some dentist thick they know what they are doing and don’t.