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rose

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I thought maybe to start a thread with this topic could be helpful, for PALs and CALs alike.

One of the biggest thorns in my side right now is adjusting to is having to use the PAP machine at night. I found that the respiratory therapist that set me up, really didn't do me any favors in choosing the type of mask I was given. After continued and growing frustration with it, I researched on the internet, and found the one I'm using is not even recommended for my facial dimensions! I've ordered a different one.

While I was researching the headgear, I discovered there are "snugglies" to put over the hose for insulation. Not only does it help machines with heated humidifiers perform more efficiently, but it makes for a cozier less medical look in the bedroom, and feels better when the hose comes in contact with skin.

The ones offered were made of fleece, but none of the colors offered really did anything for me, so I made my own. I used a lightweight silk that I had on hand and lined it with an insulating fabric. I think if you're going to make your own, the key is to use fabric that is soft to the touch, lightweight, and either has insulating qualities, or is thin enough to line with another fabric (which is what I did).

Here is a photo:
https://www.alsforums.com/forum/album.php?albumid=69&pictureid=451

If you're interested in purchasing a ready made one, just google snuggle hose for cpap or bipap and several sites should pop up.

Next, the plastic rubbery smell the machine has.... no way to use anything but distilled water in the humidifier, but, again, I found there are comfort accessories offered to help. A passive diffuser is set near the air-intake and the aroma is taken in that way. It is not overpowering at all and makes the falling asleep process much more pleasant. The company I found says its products are fully compatible with all types of positive airway pressure equipment. I didn't want to put a company name here, as we don't advertise on this forum, but thought it was good to at least let you all know that something like this actually exists.

Both of these niceties have made using my machine more pleasant to use for me, so it might be something the PAL in your life would like too.
 

sharonca

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Thanks Rose. I had to take my mask off last night - so much water was dripping on me. Guess I don't have the humidifier set right. Just as I was getting comfortable I started getting wet!

Sharonca
 

crystalkk

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Rose,

You are very creative and the cover looks great with your bedding.
Thanks for the info.
 

rose

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Sharon, They call that "rain out". The suggestions I read on the PAP machine websites suggest either raising the temperature in the room a few degrees, (because its the contrast between the temperature in the hose and the temperature in the room) insulating the hose, or turning down the setting on the machine. I know I certainly need all the moisture I can get, and insulating the hose helped keep it moister without, like you said, getting water in the hose.
 

rose

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Thanks Crystal, it was between that fabric which I'd had for years and never used for anything, and a piece of pink fleecy faux fur.... was afraid the fur would tickle my nose ~ dealing with Don's chest hair at night is enough LOL.
 

Maureen

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Thank you

This is great info. The very issues I have been dealing with.
I plan on giving them a try.
Thanx again!:):)
 

awieleba

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Rose,

you never cease to amaze me! I love the matching bedding to it as well! I love my bedroom and I love having everything just right, with candles and sheet spray. I light candles all through house and had Tom put dimmer switches on all our lights so the lighting is always just right. This bothers him, and my son (Jack) runs through the house blowing out all my candles! It drives me crazy but as I write it I am smiling at his mischievous behavior!

There is nothing better than candles glimmering, the lighting low, fire in the fireplace (granted it is gas) and a wonderful glass of wine and watching my kids play! IT is heaven for me!

Take care!
 

rose

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Maureen, glad this was of help, and welcome to the forum. :)

I am really anticipating the arrival of my new headgear to try. The one I have now has the nasal pillows, and not only is the shape not compatible with my "nares" (never knew they were called nares before) but the straps just don't seem to be able to be adjusted to fit right either. Its been a constant struggle every night.

I just re-read my original post and saw that I left out the word "aromatherapy" when talking about the diffuser- I was being careful to not make it sound like an advertisement,.... the site I used called it "luxurious cpap aromatherapy" and the scents really are not too strong or perfume like.

I don't know if its just me, or if its common, but the moment I take off (read:rip off!) my headgear, I smell that smell of the bed clothes like the scent of cotton when its ironed... hard to describe, just smells GREAT! and then it fades. I don't know if while I have the air pressure going it opens up my sinuses to where they're more sensitive to smells or what. There is a noticeable contrast between how good it smells when I take first take off the mask, and how un-nice that plastic and rubber combo smells.

With the diffuser it doesn't seem like I keep smelling it once I'm asleep, its more like it lulls me to sleep. I guess any essential oil diffuser would work if it is set near the air intake of the machine.

Adding a pleasant scent is also supposed to help with feelings of claustrophobia in that it instills a feeling of well being.

April, I second everything you just said.... don't forget how we've got the added ambiance of the Christmas tree lights too during this time of year :) .... and the kids begging to open up just one present early! Last year, my grown children actually had the nerve to: #1 convince me we should open presents Christmas Eve, and then #2 Told me after the fact that they knew it was a sure thing, that I'm such a pushover LOL
 

sharonca

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THanks Rose - I'm sure that the room is so cold (just like I like it) and I'm causing rain on my head! I'll get a friend to make me a cozy for my hosey. I cannot sleep unless the room is really cold which is direct contrast from what it was like last year. I'll up the temp in the room tonight and see how I do. Hopefully I'll sleep well tonight. I was sleeping 8-10 hours when I was on lithium and since stopping I only sleep about 6. Not enough.

Sharonca
 

rose

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Hi Sharonca,

I like the room cold at night too, in fact in the winter, we have one window open a few inches for most of the time, unless it gets extremely bitter cold. :) I had the best night I've had yet using the machine, and I've had it since the middle of October!... I also have started using "flight spray" which is a nasal hydration spray, it works better and longer than the others that I've tried in the past. Whole Foods markets and various other places carry it.

Good luck and let us know how the cozy works out for you when you get it.
 

Markbreton

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WOW...good article. Tammy's mask makes more noise that you could imagine. Same as Rose, we dont not think that the respiratory tech made a good selection with the mask! It sounds like tammy is snoring or farting...the noise is terrible and keeps us both awake. I'm going to search on line as you suggest!
Thanks Rose!
Mark
 

sharonca

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Wow Mark - that is terrible. My machine and mask are extremely quiet. But about 6 this morning the mask started losing its seal. And today I have really red marks on my face almost like it is getting sores. Bummer

Sharonca
 

rose

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my mask arrived yesterday :)

Can I just say that having a PAP mask that actually fits makes a WORLD of difference!

The one that fits me is the HC406 Petite Nasal Mask by Fisher & Paykel.

Besides the fact that the mask the respiratory therapist set me up with was too big for my head and was hard to hold a seal to my nose because my nostrils ~ or "nares" were shaped differently than the pillow was (it was a nasal pillow style mask), that mask also hurt my nose, as in order to try to keep a seal had to be so tight that it pushed my nose up to where the tip was kind of bent upwards ~ and it still shifted around and would lose its seal when I tried to sleep!

Anyone that is having problems with noisy masks, or discomfort, air leaks, mask shifting around at night, you might want to search for a different one. The website I used even had a facial measurement calculator with easy to follow instructions, and told me if the mask I was considering would work for my facial dimensions. The first one I'd settled on, just by looking through the masks which were shown, would not have fit me well either it turns out.
 

hopingforthebest

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so pretty

Hi there!

Your hose cover is darling! George would definitely be opposed to the floral print but I will look for something "manly".

One thing I make sure is to tuck his hose under his down comforter and by doing so I avoid him getting any moisture/water in his hose line.

You posts are so darn cute!

Hope you and the family have a wonderful holiday! Oh.....hope that for all the CALS and PALS


Patty :wink:
 

rose

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Patty...

I am so happy to see you on here, I was wondering how George is as you've not posted much lately.

& yes, floral isn't a "guy" thing :cool: I asked Don if he liked it, and he told me it looked like a big snake hanging over the bed, and I agreed that yeah, it kind of did, but it was better than the hose, and he said, but the hose just looked like a hose. So we've decided its a "garden snake" because of the flowers LOL ~ it really does help with making the machine work better.
 
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