Want to cry OR Dr Jekyl and Miss Hyde

geez, two hours a night, you poor thing.. thats awful..

I have failed at most ffm but Im going to try some on today with a new dme, a lot of them..

I know you cant stand the nose pillows, but neither could I when I started.. talk about a weird feeling??

However, its the ONLY thing they gave me so I had to force myself to get used to them, and so glad I did..

I started with the opus 36 headgear, and fisher and pakal pillows in medium and put some strap softies on them.. wow.. great...
then I tried the swift fx.. and use small pillows, fabulous.. BUT I had to turn up my pressure for some reason, or I felt i wasnt getting enough pressure and air, maybe because the pillow set up has a smaller profile..

It took me a few weeks or so maybe a month to get it all wired, then one night I put the pillows in, and I didnt feel anything?

It was like they werent there at all.. At all! Your body can get used to the strangest things..

I would think it would be harder to get used to a ffm because of all the contact area and straps..

The swift fx they say is like the closest thing to sleeping naked, and I agree 100%. You dont even know its there..

If you get a swift fx and take it home for thirty days, I think you will change your mind. They arent terribly expensive on cpap.com either..

Also, my doc said most people go thru at least a dozen masks before they find one that works.. so you are only at the starting gate..

It might not be a bad idea to invest in two masks, one ffm and one nose pillow mask..

If you have allergies, I took an allegre D 12 the last two nights before bed, and wow, I can sort of breath in the morning..

I know you feel like crap, but this therapy, when you get to sleep thru the night will make a lot of osa health related issues take a hike..

rested gal wrote:

snuginarug wrote:My mask leaks unless I over-tighten it AND hold it in place while I sleep.
---
I'm using a FF mask

This might, or might not help...

Buy two things:

1. A pair of Queen size pantyhose tights. Have to be "tights" because of thicker material -- not just regular pantyhose material.
2. A couple of adhesive backed Velcro strips or Velcro dots.

Cut off one leg of the tights.

Put on your Full Face mask. Adjust the mask straps comfortably snug, but not particularly tight.

Place the cutoff tights leg against the front of your Full Face mask, go around both sides of your head and tie that homemade strap up high on the back of your head. High enough up that it is doesn't try to slide down the back of your head. Tie it with a double start knot. That kind of knot lays flat, stays secure, and is easy to "undo" in the morning:

DoubleStart Knot How to tie a flat knot behind head when using a homemade strap.
http://www.fieggen.com/shoelace/doublestartknot.htm

Now that you have the homemade "tights" strap in place, figure out where on the plastic front of the mask you want to stick the velcro (underneath the homemade strap) so the velcro can snag the tights material and keep the homemade strap from sliding up or down off the slick plastic front of the mask.

Using a homemade "tights leg" strap that way sometimes stops leaks in the same way that pressing lightly with your fingers against the front of a mask works.

snuginarug wrote:I am also wondering if I should spring $50 or $60 for a special CPAP bed pillow.

There used to be an inexpensive ($15 or less) pillow that Target stores carried called "Shapeable Pillow." It's a very smushable pillow. You can squash a hollow into it for the mask when sleeping on your side, or bunch the pillow to make a firm but comfy ledge for the front of your face and the mask to hang out over.

For years I've used a "double edge" PAPillow most nights. I like it very much.
https://www.cpap.com/productpage/papill ... illow.html

Occasionally I switch to the Shapeable Pillow.

I tried a pillow called "SleePAP CPAP Pillow", but didn't like it anywhere near as well as the PAPillow or the "Shapeable" pillow from Target.

As is true of masks, different pillows can suit one person but not another.

Think I have learned something today.... my wife is going to wonder where her panyhose have gone until tonight. THAT IS A GREAT BUT SIMPLE IDEA... as are the best ideas. And I think I have just discovered how to change my leak rates to ZERO's. A light finger on the front of my mask ALWAYS cuts the leakage off completely.

snuginarug wrote: This is my second mask. I don't want to ask for a third.

It sounds like you have tendencies to make a sacrifice of your comfort to make others happy. This is definitely a noble trait, but in the case of the DME, they are a business who will be happy to take the savings of not having to swap out another mask if you give it to them. But remember it is their job to get you in a proper fitting mask so your therapy will be successful!

How many masks have the let you try? Do they keep a decent variety of masks for fitting, or do they just hand you another mask and say "try this one"?

You really need to be less gracious on this count.

The reason for the return policy is because a mask that doesn't fit makes all of the studies and equipment which you (and your insurance) has paid for worthless! That is too much time, effort, and money to toss.

You don't need to be mean or demanding, just take a simple and practical attitude - If it isn't working, it isn't working and let them know.

I asked for help, and you guys heard me. Thank you so much, each one of you.

Rogue Uvula wrote: It sounds like you have tendencies to make a sacrifice of your comfort to make others happy.

Rogue, you are so right. I will be practicing more of my assertiveness skills here. A tough one for me. But I have to make this work, as my ankles testify. The swollen ankles are a symptom of a deeper problem with my cardiovascular system, something I just CANNOT ignore.

elena88 wrote: the closest thing to sleeping naked

Tehe, I am very modest and always sleep with jammies. But seriously...

elena88 wrote:
Also, my doc said most people go thru at least a dozen masks before they find one that works.. so you are only at the starting gate..

It might not be a bad idea to invest in two masks, one ffm and one nose pillow mask..

If you have allergies, I took an allegre D 12 the last two nights before bed, and wow, I can sort of breath in the morning..

I know you feel like crap, but this therapy, when you get to sleep thru the night will make a lot of osa health related issues take a hike..

The idea of going through so many masks is a bit daunting. The mask I have now is the Mirage Quattro small. It's too small. I tried the medium, it is too large. Grr. So I think I'll have to switch to either a nasal to see if the sizes work differently for them, or try a different brand with a different sizing standard. This is sort of like trying to find a pair of jeans, lol. Men are so lucky, their clothing sizes are at least standard. I'd love to have two interface choices at my bedside, but I can't afford that. Luckily, I don't have allergies, and find that with the mask my sinuses are extra clear. I know you feel like crap, but this therapy, when you get to sleep thru the night will make a lot of osa health related issues take a hike.. I'm keeping my eye on the prize.

BlackSpinner wrote:The more you tighten it the more it leaks. You probably have the wrong size. Go to your dme with the whole setup. Try on the masks under full pressure laying down. Sort of like buying running shoes - you need to run in them.

As for the pillow - buy a cheap foam pillow and go at it with a bread knife until it works for you.

Ah, I feel pretty inadequate here. I laid down on their bed, full pressure on, tried it on my side, on my back, with two pillows, with one pillow. I thought i had put it through it's paces. *sigh* Tomorrow (I have an appointment for tomorrow) I will be brave and just walk right in with my favorite pillows under my arm. Last time , I brought them with me, but they stayed in the car because I was too embarrassed to bring them in. I am very modest and feel like displaying my pillows is akin to running around in my pjs in public.

sleepnationtv wrote:Support and learning will help you a lot. I have put together this video blog to help. take a look and see if there is anything that will help.
http://www.sleepnation.tv

Thank you for putting together these videos. I started watching one, but see that it will need my undivided attention for an extended period of time, so I will watch them later, tonight.

rested gal wrote:Patzee had a good suggestion about making soft cotton liners to use between the silicone cushion of a mask and your face. Besides providing increased comfort, she said that adding the liner made leaks become a rarity for her.
viewtopic.php?p=477202#p477202

Patzee wrote:
One big help that has my nights with more sleep time & less awake time is this: in cutting my own mask liners out of my husband's T-shirts, I cut them wider on the top half than needed by about 3/4" on each side, AND use a double thickness - two of the cut-outs instead of one; this allows the mask liner to double as an eye mask 'cause it completely lays over the eyes and blocks any bit of offending light. And this does away with having to use the uncomfortable eye masks and removes one more strap from ones head.

About the mask liners - I'd recommend everyone using them - easy to make, zero cost if using something on hand, and with the liner, wearing the mask is instantly SOOOOOO much more pleasant & comfortable - no more "something foreign and siliconey is creating a suctiony perspirary augh" sensation. And leaks become a rariety. Just a soft, cushiony, comfy feeling. And cut up a week's supply...put the ones you've worn in a small lingerie laundry bad (the little white, mesh, zippered bags, and wash & dry them all together).

Really, if you haven't tried the liners, cut up something (all cotton) right now, and at least try it to see if it doesn't make a huge difference. Doesn't matter if you use a nasal or a full-face mask, it will work.

Dori, I'm still chuckling at how our differing pillow experiences make us sound like characters out of Goldilocks and the Three Bears!

At the moment I feel more like the princess and the pea. I will definitely try this idea, as it sounds comfy and inexpensive. But not with this particular mask as it is both uncomfortable AND leaks.

nanwilson wrote:Hi There
Do not despair, there IS help. Your quattro should not be tight on your face. There are several places to get help......here is your homework..
look up "quattro fixes"
look up "remzzzz"
look up padacheeks
The quattro fixes we've all worked on until it "fits".
Remzzz is a product that helps with leaks, BUT you can make your own using old well washed cotton t-shirt or ladies panties. There is a pattern, actually 2 different patterns...or you can just cut a pattern yourself from your quattro, make it about 3/4 of an inch larger all around.
padacheeks are head gear straps made by one of the gals on the forum. But if you are handy and crafty you can make your own out of fleece or quilted material.
Get yourself a cup of coffee, relax, put your feet up and start reading the above suggestions. That's how I did it and believe me, some suggestions work, some don't, I've tried them all. I call the bottom drawer in my night table, my "tweak" drawer..it has all the stuff I tried (made myself) that didn't work .
Go for it, do it and most of all tell yourself PATIENCE AND PERSISTANCE ARE THE KEYS TO GOOD THERAPY!!!!!
Good luck and keep smiling.
Cheers
Norma

I have looked up remzzz, and if i do try the home made version and it doesn't work because of my lack of handiness, I will go straight to the source. I spoke to "padacheek" herself this morning, as well as looking at the padacheek site. It looks like this is the place to go!

I don't have time to respond to each of you, but appreciate ALL the input I have gotten. I'll update after I have had a chance to try out the new mask I will receive tomorrow.

Snug, honey, you should be so proud of yourself for sticking to your therapy in spite of mask fit setbacks. You go, girl! Take your own pillows, try masks under your pressure, make your best choice. Remember that out facial contours change when we sleep (relaxation of muscles and such) so that could impact your leak situation.

When you're thinking about pillows--which can have a big impact on therapy--you might want to look into a buckwheat hull pillow. I bought a small one from cpap.com and I love it; it's been a big help. I took out about a third of the hulls, but now it's perfect. Just a thought.

Oh, Snuggie, I am sorry you are having problems. :hug:

Don't despair... I also tried about 5 different FFMs before I found one that I was somewhat happy with. So stick to your guns and work with your dme to find one that works! That is their JOB. And if you really can't get the FFM to work (but there are many out there, so the chances are high), you can also experiment with a nasal mask and mouth tape. Whatever it takes to get a good night's sleep. For what it's worth, the quattro and the Umff leaked like sieves for me, but the ComfortGel Full has been a keeper.

I felt like crying this morning, Then I went back to bed. (With the mask.) I woke up feeling like a normal person. But when I left the house, I felt like I was leaving something behind. I checked... wallet, watch, purse, keys, check. But what I was missing was the sensation of having something around my ankles, that horrible swelling. As I drove along, I realized my watch was loose, as well as my shoes. And that I felt, overall, less puffy and bloated. WOW. This is from a fragmented 6 hours of sleep! I felt like crying this morning, but this evening I was laughing and celebrating with my friends. It doesn't matter how horrible my nights are, with these results. And hopefully my trip to the DME tomorrow will garner me a nice comfy mask. I watched sleepnationtv's videos and feel educated about my options.

brazospearl wrote:Snug, honey, you should be so proud of yourself for sticking to your therapy in spite of mask fit setbacks. You go, girl! Take your own pillows, try masks under your pressure, make your best choice. Remember that out facial contours change when we sleep (relaxation of muscles and such) so that could impact your leak situation.

When you're thinking about pillows--which can have a big impact on therapy--you might want to look into a buckwheat hull pillow. I bought a small one from cpap.com and I love it; it's been a big help. I took out about a third of the hulls, but now it's perfect. Just a thought.

Thank you for the encouragement, brazospearl. I will, this time, make a conscious effort to relax my face, neck and shoulders while trying masks. It's great they have little beds all set up with a machine ready to be turned on right there. They really do want me to be comfortable.

Jaylee wrote:Oh, Snuggie, I am sorry you are having problems. :hug:

Aww, thank you Jaylee. Hugs to you too.

echo wrote:Don't despair... I also tried about 5 different FFMs before I found one that I was somewhat happy with. So stick to your guns and work with your dme to find one that works! That is their JOB. And if you really can't get the FFM to work (but there are many out there, so the chances are high), you can also experiment with a nasal mask and mouth tape. Whatever it takes to get a good night's sleep. For what it's worth, the quattro and the Umff leaked like sieves for me, but the ComfortGel Full has been a keeper.

I am thinking that I will try nasal masks tomorrow. They fitted me with the FF mask because when we tried nasal pillows, I couldn't keep my mouth closed. ( I don't understand who CAN keep their moth closed with little things shoved up their noses.) My theory is, less area touching the skin, less area for leak problems. Also, I have high cheekbones, and the curve of the FF mask I tried was too flat. With the cheekbones out of the equation, I might do better.

Wish me luck!

you are going to do fine! congrats on reducing that ankle swelling!

isnt it amazing, even with some really crummy sleep, what these darn cpaps fix on us?

It really does work, even when we dont think its working..

Today I took home a comfort gel mask.. they tried the medium on me, and it leaked like crazy, so I said. give me a large..
the guy was shocked that it fit me! So tonite I will try it..

Bye the way, I heard resmed is bring out something akin to the swift fx, and they are testing it on patients now..

Honey, try the opus and the swift fx.. I really think you an get used to those pillows, and the fx are sooo soft...

but, you might have to up the pressure if you feel you cant get enough air..

try on as many as it takes! one tip, if one feels MORE comfy but leaks, and one feels NOT quite so comfy but doesnt leak, get the less
comfy one, youll learn to get used to how it feels.. its the leaks that will get you no sleep every time! darn, leaks.. would like to beat them
with a stick!


Better get ready to go shopping for some strappy ankle sandals soon!

flats!





or heels! ( I have a pair of these, and they are SO comfy!)

elena88 wrote:you are going to do fine! congrats on reducing that ankle swelling!

isnt it amazing, even with some really crummy sleep, what these darn cpaps fix on us?

It really does work, even when we dont think its working..

It really is amazing. That's why I put up with sleeping in one and two hour pieces last night... Kept my mask on, kept going back to bed with it. It's a small mirage softgel nasal mask, brand spanking new, on ti's maiden voyage last night. I named him Harry, and we aren't getting along that well. I don't know if it is that the mask is the wrong size, or if I just need to get used to it. Anyway, side sleeping is easy with this one. The hose does get in the way, more so with this than the FF mask. I am accustomed to holding a pillow to my chest during the night, so I tried holding the hose in a reasonable position. It worked ok, but the hose still seemed to be pulling on th mask. Which, for some reason, was not a problem wit the FF mask. I dunno. I will keep trying this one, for a few days, a week, before giving up and going to get a new one. I finally took a benadryl to help me sleep. Instead of waking up feeling nice and clear as with the FF mask, I felt stuffy on one side of my nose. So far, things are not going well with this one either, but we'll see. At least I didn't have much leaking, just tiny leaks that went away when I moved a little or slightly adjusted the mask.

Thank you for the pics!

I can clearly see my entire ankle bone this morning. Now I DO need some pretty shoes to show it off.

Do a search for "hose management" People have devised all sorts of things - including bungy cords from the ceiling to handle this issue!