xPAP still a disaster

Kiralynx wrote:I don't know that I can address any of your other issues. But I might be able to help with the jaw dropping open business.

I'm terribly claustrophobic and couldn't use a chin strap. But my mouth kept dropping open. So I had to invent my own device. I called it a "brandy keg," ala the cartoons of St. Bernard dogs with brandy kegs under their chins.

I bought a 4" diameter piece of medical foam, and cut a 4" piece off it. I drilled a hole down the center of the cylinder. Wrapped the foam in fleece, and put a strap through it. I snug it under my chin.

I sleep on my side, and the strap keeps me from loosing the cylinder, while the cylinder keens my chin from dropping.

I've been using it for 9 years.

https://imgur.com/pJ0PHAD

That is very cool - very resourceful and practical. Much less intrusive than a chin strap.

Although, in my case, it would choke me when I stomach sleep

I have been trying to side sleep, but it has not been very successful. It seems my sides are the least preferred of the 3 options.

Quote:

You've got it reversed - he said pull the upper over the lower.


For me to do that I have to move my lower jaw back , which is the opposite of what I normally do.
I use a boil and bite mouth piece (snore stopper), set with my lower jaw forward.
I also use a 4 in. cervical collar to keep the jaw closed.
This helps to prevent my air way for closing.

MaxINTJ wrote:

TedVPAP wrote:Well if you are having trouble understanding how the lower lip can be covered by the upper lip ... then you are having trouble.

I still don't see how a person with relatively normal lips can pull the top one of the bottom one without going through all sorts of jaw distortions.

Can most/some of you others do this in a normal position?

You will need to try.
No jaw motion is necessary.
Normally where your lips meet there is a seam. If you apply tape along the seam then the tape is adhering to the lips themselves. The seal is made by the tape.
Instead, tuck a lip under the other. Then the tape does not stick to the lips AND the tape does not form the seal. Instead the tape simply keeps the lips overlapped which makes the seal. When tucking, leaks will only occur at the corners (where the lips can't overlap).
Try this, tuck the lip and hold closed using a finger tip. Exhale hard and you will see that only the corners will leak.

Even a child can do it

xxyzx wrote:omitted items do not make it wrong

good point about the newbies
i will try to be more complete
but dont want to copy the whole manual for an answer either

Doesn't make it right either to omit stuff especially if it is important stuff.
If you don't want to do the work to give accurate and complete responses....then simply don't respond.
Incomplete can be just as harmful as inaccurate.
If you want to help someone...don't do a half assed job of it because you don't want to do the work.

xxyzx wrote:if they are unclear they really should ask for more

To newbies everything is unclear.
It's your job to do the teaching if that is what you want to do.
Most newbies don't have a clue about anything well enough to know that maybe there is more detailed information available and they should ask for clarification.
It's not a newbies job to help you do your job better...they have no job other than to try to learn to make sense of all this cpap therapy stuff.

They can't read your mind and know what you meant. You have to spell things out loud and clear for newbies.

xxyzx wrote:otoh tell them too much and they get more confused

some cant figure out which way is up no matter what we tell them

True and that's why I just keep repeating or rewording something until it sticks.
It's also why I don't go clouding things by talking about stuff that is maybe this or that and why I don't throw out too much stuff at one time but what I do throw out I try to explain fully. I try to answer the question and not go muddying the waters with a bunch of stuff that might not be relevant. Save that discussion for later once the person has a better understanding of the basics.

You have to get down to the intellectual level of the person you are talking to.

xxyzx wrote:some cant figure out which way is up no matter what we tell them

Sometimes they are the very people that need the most help.

Pugsy wrote:

xxyzx wrote:otoh tell them too much and they get more confused

some cant figure out which way is up no matter what we tell them

True and that's why I just keep repeating or rewording something until it sticks.
It's also why I don't go clouding things by talking about stuff that is maybe this or that and why I don't throw out too much stuff at one time but what I do throw out I try to explain fully. I try to answer the question and not go muddying the waters with a bunch of stuff that might not be relevant. Save that discussion for later once the person has a better understanding of the basics.

You have to get down to the intellectual level of the person you are talking to.

A Spoon full of sugar to help the medicine go down! Jim

MaxINTJ wrote: https://imgur.com/pJ0PHAD

That is very cool - very resourceful and practical. Much less intrusive than a chin strap.

Although, in my case, it would choke me when I stomach sleep

I have been trying to side sleep, but it has not been very successful. It seems my sides are the least preferred of the 3 options.

I always used to sleep on my stomach with my head twisted to one side. And my mouth fell open. I figured out how to adjust the keg so it didn't strangle me and it still worked.

Ended up learned to sleep on my side when my knee did something wonky and I had to keep it bent at night. That not being your problem, you can almost certainly figure it out.

The brandy keg also works for back-sleeping.

I know you're frustrated as heck right now -- I cried coming out of the doctor's office because I knew I couldn't handle that horrible mask on my face.

But if you take it one step at a time, you CAN do this. Seriously.

My machine was mis-adjusted at first; I figured out what was going on and got the script changed.

One thing I did to adjust to the machine was crawl in bed, put on the mask, start the machine, and read (I have always been an avid reader) for half an hour before turning out the light. If you're not keen on reading, maybe try audio books or quiet music to listen to.

I kept waking up and feeling like I couldn't go back to sleep. So I counted breaths (instead of sheep), and told myself I would count to 1000. If I lost track of where I was (because I'd dozed off briefly), I started over at the last number I remembered. Eventually, I just went to sleep and stayed that way. IOW, I had to teach myself how to sleep all over.

It's now almost 9 years since I first got my Beastie. I'm incredibly glad I have it.

It was not an easy adjustment. But I am stubborn. I was not going to let a MACHINE be too difficult to use. Nor was I willing to give up. I was sick and tired of being sick and tired and my fancy machine was likely the answer to that. So I determined to figure out the best way to make it work FOR, not AGAINST me. I decided that every time something wasn't working, and someone offered a suggestion (to which my automatic reaction was typically "That won't work because...."), I would say, "That won't work because... but I bet if I do this, I can MAKE it work."

I wish you all the best. You CAN do it, you know! I'm sure of it!

I finally got to talk to the actual doctor and he is going to do another sleep study now that I am used to the mask.

My biggest problem (other than, or in addition to, the leaks) is arousals, and with all the sensors hooked up, I'm hoping they can either pinpoint the arousals if they're not breathing related or get the correct settings for xPAP.

It will be a titration study with both CPAP and ASV and he said he will personally go over it with me instead of just summarizing and giving the info to the techs.

So MAYBE, in a few weeks I will have more answers...

In the meantime I will try the Amara View this weekend and if that doesn't work I will try a different type of tape the (micropore stuff). Just keeping my mouth closed doesn't stop the pressure coming out between my lips (when the pressure goes high).

The doctor seems to think I can get by with much lower pressure. If he's right, the leak problem is solved. Since I'm betting he's wrong, I need to deal with the leaks myself.