2nd night and it was a nightmare

Gosh, fellow hoseheads, I'm discouraged. I've looked forward to getting my BiPAP eagerly. The first night was bad, but the few hours sleep I got seemed somewhat restful in spite of waking up every 30 minutes. Or less.
Last night was even worse. Every 10-20 minutes I was awake. The mask leaked terrible. Felt huge, hard to lay on my side. I would make adjustments to the straps, to that other thingy at the top which changes the angle, and reposition it on my face, but nothing helped. The leaks are beside the chin/cheek area, and they are huge. I carefully washed the mask yesterday, and went to bed with a scrubbed face, so it wasn't that.

This is the deal. I had read on this forum about the Ultra Mirage FF mask making a whistle, and what you guys had to say about it.
The woman who fitted me came in with a medium. It seemed to fit just fine, but when she turned the air on, it whistled. I told her some folks on this forum had said it was a somewhat common problem, and told her that washing the plastic sometimes seemed to help. She left and washed it, and did some things with the hose connection and said it wasn't coming from the hose, she thought it was at the edges of the mask where it met my face. I don't think so. It didn't sound to me that's where the noise originated. She made a call to someone before giving that statement.
I told her she needed to order a new one in a medium, because maybe it wouldn't whistle. She totally ignored me. Instead, she borrowed another medium from the lab and it whistled, too.
So she brought in a large, and put that on me. It did not whistle, although to me it felt too big. She adjusted it, and for the minute the air was on it seemed OK, didn't whistle, so I came home with it. Of course the tilt of my head while lying in her recliner was NOT the tilt of my head in my own bed.
Now, fellow PAPers, this is what I need to know. Just where is the bottom of a full face mask supposed to fit? Mine fits on my chin projection. I would have thought it should fit between the bottom lip and chin, in that depression. The forehead rest is lying right on the edge of my hairline. So I have mask from hair to the middle of my actual chin. With it fitting so high on my forehead, I can't really move the mask up any further for the bottom to set in the depression above my chin. The air is coming out big-time right beside that chin depression/cheek area.
Everyone says the ResMed Ultra Mirage FF is the best. I like the way the connectors come apart easily.
Is it too big?
Now I'm starting to think NOSE MASK!! Or even pillows. I'm thinking about what MartiniLover told me about ordering a really good chin strap. Then, I remember some posts about taping the mouth shut with some special kind of tape. I don't remember what it was, don't know where to buy it.
My 2nd sleep study (this one was my 3rd) is the only other titration I had, and it was with a nose mask. Of course it didn't work because I was a mouth breather, but that aside, I had no trouble falling asleep with it on and the only reason I woke up is because the tech WOKE me up griping about my mouth being open.
I have either 30 or 60 days to exchange masks with no extra charge, and I'm wondering if I should go the nose mask or pillow route.
ALL SUGGESTIONS welcome, and educate me to the best of the nose masks, and the best of the pillows. I think I read on here there is a new pillow that doesn't go as far into the nose and doesn't hurt as much, right??
I can order the chin strap MartiniLover told me about...tell me what tape and where I might find that particular kind. Or should I forget it? I don't feel I'll get any satisfaction with taking this mask back for another just like it in a medium. I don't think the DME lady will cooperate.
I'm desperate.

If the mask is resting on your chin proper instead of that indentation between your chin and your upper lip then yes, it's too big. Go back to the medium.

I've got the Ultra Mirage FF and the first night I had it, it whistled through the exhalation port just above my nose. It took a couple of washings and massaging that plastic piece before it stopped. Is that where the whistling is coming from? I had to work with the straps to get my mask to where it was comfortable. For me, it helped to have the bottom straps tighter than the top. The forehead supports should rest lightly on your forehead.

Getting the right mask or other interface seems to be the greatest challenge for us hoseheads! Good luck!

Jeanne

That's what I thought about where it should fit. Dangit. I really don't like the DME gal. She has this expression like "Oh my GAWD, I've got another idiot who's trying to tell ME (expert that I am) how to do my job! She's just young enough to have not learned that it takes cooperation and give and take between two people for things to work right.

When I got my Ultra Mirage FF mask, the whistling was coming from the exhilation port which is located near the bridge of the nose. My DME said it was from the membrane not being installed tight. He pushed it a little more and it sealed properly and has not whistled since.

By your description your mask is too big. Mine hits the indentation between my lip and chin. The chin rest hits my forehead about half way between my hairline and eyes.

Good luck on getting the right mask. It really is the key to the whole thing.

Howard

Photo Gal:
The bottom of the mask should fit into the natural indent between your lower lip and chin. Only exception is some full-face masks that are built to completely cover your chin. I'm not sure if the maker is Fisher-Paykel or Hans Rudolph, however, this mask completely covers the chin and works like a built-in chinstrap. It does not sit on the projection of your chin.

TAKE NO PRISONERS! Do what you have to do to get the right mask that fits well no matter what the DME person says.

Anyone notice that if you try to pronounce DME it sounds like "dummy?" Just a thought...

And, before I get bashed for making a DME crack, I know that there are lots of good DME staff. I'm just making a joke.

photogal, I agree with nenetx and howkoolguy that the Ultra Mirage FF you ended up with is too big for your face. No matter how impatient or exasperated anyone at the DME gets, that outfit is getting BIG bucks to fit you properly with a mask that will give you comfortable treatment.

Willsucceed is telling you right - do whatever it takes to keep after the DME until you get a mask that works for you.

Take advantage of trying as many masks as you can during the 30 days (if they let you exchange more than just for a "second one" during that time.) You're going to be stuck with whatever for quite awhile after that.

If you can breathe ok through your nose while lying down, and want to try a nasal pillows type mask, the Swift is probably the best bet "right out of the box". I prefer the Breeze, but Swift does suit a lot of people nicely. Swift is noisier than the Breeze to me. If you sleep on your back a lot, the Swift would definitely be more comfortable than the Breeze for that, imho. Swift comes with all three sizes of nasal pillows/cylinder (don't let the DME get away with giving you only one size cylinder with the Swift.)

Of course stopping the mouth air leaks is the key if you are going to try a nasal mask (like the Activa - my guess would be the size called "shallow" for you) or a pillows interface like the Swift, Breeze or Aura.

Some people use micropore tape or paper tape to seal off their lips. Those kinds of tape won't hold for me. I have to use Johnson & Johnson waterproof adhesive tape. Luckily the skin around my mouth isn't sensitive, so I can use strong tape every night.

Chin straps are pretty much useless if a person's tongue doesn't hold a airtight good seal within the mouth. For some, just keeping the lower jaw up is enough to take up space and keep the tongue where it needs to be to seal off air within.

Where is that magic inner seal? Usually it's with tongue flattened out across roof of mouth. Alternatively, the tongue can be dropped way back at the entrance to the throat and spread out back there. In either position, the tongue will seal the treatment air from escaping out the mouth.

That is, IF the tongue maintains either of those seals during the full relaxation of sleep.

Mine doesn't. Thus, the tape.

I am going to do some more tinkering with the "DIY" idea of frequenseeker's (a lady that posts on the TAS board). I bought several silcone mouthguards at WalMart when she first posted about her "do-it-yourself" mouth air leak stopper. I couldn't get it to work, but now that snork1 made one that sealed the mouth leaks for him, I'm determined to try again at making one.

This is all early in your "cpap career", photogal, so you'll probably have to go through masks, chinstraps, various kinds of tape, and all kinds of stuff. But maybe you could take a leap past a lot of the hit and miss things...maybe frequen's DIY thingy would work for you too.

Here's a clickable link to discussion about it and instructions/pictures of how it's made:
Topic started by frequenseeker Dec 01 2004 subject: mouth leak solution, cheap DIY oral appliance

Don't just assume you can't use a nasal mask. That was my first...of many...mistakes.

Mouth leaks are a battle for many people but are not necessarily a reason to go to a full face mask. There are many solutions for mouth leaks to try.

BUT, if you have the Ultra M FF already....and once you get the CORRECT size. (everyone is right on that point), there is an "old" trick to make it seal, that did sort of work for me before I tossed the FF idea.

Get a sweat band or elastic hair band or adjustable elastic band (not sure I want to go into infamy on ANOTHER forum as to what I used for THAT:-) and put it over the mask cirumferentially, ie. just above the inlet tube (don't block the exhaust) and directly behind your head. This extra force, and it can be a fairly light tension, seems to really help keep these hovercrafts in place.

The $3 DIY Frequenseeker Device for mouth leaks should get some sort of award for the most significant contribution to CPAP therapy since the heated hose, IMHO. Wish I had put in the effort to make one awhile ago!

Thanks for the info. I read about the homemade mouthpiece, and it sounds a little complicated. I'll investigate that further. I'm beginning to understand a little now why everyone said, "Why are you getting a FF mask?" They understood the difficulty.

I couldn't tell where the whistling was coming from, as the DME took it off immediately. It sure didn't sound like it came from the lower area. I didn't bring that one (the whistling one) home, so the too large one doesn't whistle and I can't investigate where it was coming from.
Next week I'll call her and see if I can't do something else. My surgery is waiting on this. I need to be able to wear it all night first. So far, 5 hours was the most. I'll try stuffing the tissue under the leaking area tonight and see if that helps.

http://www.scubacityusa.com/detail.aspx?ID=239
http://www.snorkelcity.com/trmase.html

Meister ! Learn to breathe thru the nose ! The more seal area you have the more chances for leaks.

I find WalMart generic wheel bearing grease works wonders and its cheap! Insurance won't pay for it unless your Doc orders it. Or you could try shaving before you go to bed. It makes a difference. A heated humidifier also helps mouth breeders also. The dry air restricts your nasal passages causing you to mouth breed.

Cheers,

Chris

Photogal,
Don't give up!
I am not as learned in the ways of the force ( of the air) as Rested, Mikesus and the others, but you do need to be comfortable. And with that contraption all over your face it could take weeks to get comfortable. I used a dreamseal nasal mask for 6 months and was never really comfortable enough to sleep the whole night. I finally went back to my RT at the evil DME place and I thought that nasal pillows looked so uncomfortable in the pictures, but I decided to give them a try. They felt even weirder than the mask at first, but for me, they were ok to sleep with in less than a week.

I also had all kinds of contact irritations from both the mask and the pillows. And continue to have them even with KY on the pillows. But 2 years later I'm feeling better and you will too.

Don't give up!

I swear to CPAP, Chris, you're getting worse than Unclebob!

You people are a riot! It makes me approach this whole thing with a sense of humor!
I ended up deciding to try the mask again without the tissue, with the idea if it began leaking I'd get up and do the tissue route.
I managed to get a seal, but it was like...DON'T move your head or a leak will spring up. Which happened, but I'd move my head again and get a seal. I slept for a few hours of seemingly good restful sleep. Somewhere in the 2 a.m. area, I went to my side and soon awoke with horrible leaks. At that point I was too sleepy to get up and try the tissue, so I flung off the mask and slept the rest of the night without it.
The upside of this is the beginning of the night while the seal was OK, I seemed to accept the mask better and wasn't waking up every 20 minutes. That could have been exhaustion manifesting itself though, as I'd had two nights fighting leaks and only getting a few hours sleep.
I am working hard at trying to close my mouth, and it is working somewhat.
Used to, I would go to sleep breathing through my mouth. Now I concentrate on keeping it shut, and go to sleep with it shut. Several times when I did wake, it was shut. Eventually, probably AFTER I threw the mask off, I woke up with the parched mouth. I may gain something here with working at it.
I got a copy of my full sleep study report. Doesn't make a lot of sense to me.

Do you know that you have a good looking girl stuck to your feet ?