Mask Issues - Please Help

[SleepySandy]

I'm a new CPAP user and I could use some help with what to do about my mask.

For what it's worth - I didn't do any research before I got my equipment from my DME. I didn't even think about it except to know I absolutely needed a humidifier, which I did get along with the REMstar Pro CPAP. I also had the obviously naive notion that everything would work perfectly night 1 and I would feel great the next day. Nothing is working perfectly and I don't feel better at all. I've been using my CPAP for 2 weeks. I do understand I need to be patient, but I'm losing patience with my mask.

My first mask was the Swift Nasal Pillows. That didn't work at all. I have very narrow nostrils and it hurt terribly - even with the gel. This mask was chosen as a last resort after spending 2 hours with the RT trying to find a mask to fit my apparently unusually shaped nose (very narrow and sensitive bridge, narrow nostrils) and sensitive forehead (all of the masks with the forehead brace gave me a headache).

When the Swift didn't work, the RT thought the ComfortLite 2 might. This is what I use now and I've been trying hard to make it work. I alternate between the nasal pillows and the simple mask. Neither is ideal - the nasal pillows hurt my nostrils; the simple mask often leaks. Neither allows me to move much without losing the seal.

On top of the mask issue is the fact that I started breathing through my mouth 2 days ago. Last night and the night before I woke up with my mouth completely dried out. My reading on this forum makes me think I should try a chinstrap, but then I see that a chinstrap doesn't always work. I can easily see myself being able to breathe through my mouth by opening my lips.

I'm enormously frustrated at this point and I'm very, very tired all of the time.

I'm trying to decide if I should try a different mask and maybe even a different DME. My DME is within my sleep clinic. I thought the RT was very helpful when trying to find a mask to fit me (he also reviewed my study results with me - I don't know if that's normal). The thing he did not do was have me lay down while trying the masks - I just read about that being a good idea. There's a DME within a different sleep clinic near me. Should I go back to the first RT at my own sleep clinic? Should I see if the other DME can find a better fit for me? Should I keep trying with the ComfortLite 2? Should I try a full face mask since I've started breathing through my mouth?

I just want to feel better.

Thanks for reading.

Sandy

[bdp522]

The mask is the hardest part! What one person likes about a mask someone else will hate. There isn't an easy answer to this. You just have to keep trying masks. If a different DME has a different selection it might be worth it for you to see if they will let you try some on. Not all DMEs will allow that.
Do a search for CL2 fixes and see what comes up. There are tricks to just about every mask. There are some tips in these posts;

viewtopic/t16245/Comfort-Lite-advice.html


Brenda

[TheOboeNose]

in the frustration and aggravation? Oh how that is often the case, Ive learned. Wished Id found this place sooner. LOL. Lucky for you, you have and you have all of us to sympathize with!
Believe it or not, the nostril soreness will go away. I didnt think it would, but it did. Which lubricants have you tried, and what setting is you humidifier on? Do you live in a place where you are running heat? (I live in South Texas, where most of the time even at January, we run A/C because its so hot and MUGGY, which means I can use a lower humidity setting) Ive seen suggestions for lanolin, and I use KY liquid. It always provokes a laugh from people who see me use it, but it works and I know its safe to use on the the pillows. The other thing is if you are running high enough pressure, ( I run 13) it tends to blow up your nostrils like little balloons. That more than anything gave (and occassionally still does, Im only on my second week with it) me the irritation, caused by the stretching my poor nostrils were getting every nite.
I too did not research my mask. They told me at the sleep center that I was a mouth breather, and therefore required to use a FF. But I have claustrophobia in a rather extreme method and I could not deal with either the feeling of confinement nor the fardling leaks I had all over the place. I too have no bridge to speak of and as a child had a hemangioma on the right side of my nose that covered a good portion of my right eye until I was 5. But it left that side of my face out of proportion with my left and sensitive to pressure. My poor RT was getting tired of me. I promised myself I would try a week a mask. A week to the day, Id call. We tried everything till I finally admitted I would have to wear a nasal pillow system. And it worked. Yes, I got sore nostrils, as they are tiny nostrils, and even the smalls seem a little large. AND THEN..... my mouth breathing, which had not been an issue with the FF, the nasal mask, nor the petite mask, had shown back up. I guess I finally got relaxed enough to do this again. LOL. But waking up with a mouth that feels like the sahara desert stinks, and the family complaining that there is a vaccum running in the next room, meant I had to try something. Right now Im doing the home grown chinstrap with mixed success, because its aggravating my TMJ which hasnt been an issue in years, because Id taught myself to ... breathe through my mouth to prevent bruxing. LOL. Some folks on the site recommend training yourself to keep your tongue tucked against the roof of your mouth against the teeth to keep from popping open. Thats my next attempt, since besides the TMJ acting up, I find I often can manage to propeller my way past the restraint too.
The best advice...? Keep the patience. If you are opening your mouth now, it to me, suggests you are relaxing enough finally at night to really sleep. So in a weird demented sorta way, this is a good thing
Thats my mantra to myself these days.... hehehe

[cflame1]

Oboe... have you tried a hybrid??

[Snoredog]

you should try Ayr gel, put it inside your nares before bed. It is a saline gel.

[Guest]

Sandy,

I went through 4 interfaces (masks) in the first 5 or 6 months before finding one that works for me. That may be typical (except for those few toughies who find anything comfortable).

You mentioned nostril pain with nasal interfaces. I think that is usually caused by the interface slipping around in the night, irritating your nose and also breaking the seal, meaning loss of CPAP pressure.

I eventually found interface bliss with the Aura (Everest) nasal interface. It looks a lot like the Breeze, but it stays in place and is so comfortable. In a year of use, it has woken me up once or two, as opposed to 4-5 times/night with previous interfaces.

Last I knew the Aura did not fit small heads well (although heard there was some fix for that from the company that helps). I glued/stapled a couple inches of hooky Velcro to the back strap on mine so that it would catch in my hair and further stabilize it. Also there is a rubber-band fix for Aura that helps it stay in place better and some other, e.g. RestedGal's, modifications for Aura that help some (check the archives of this forum if interested).

The other problem you mentioned with nasal interfaces was mouth-breathing. Many people have posted here that they simply tape their mouths shut with adhesive tape. For the first few months, I applied a narrow strip of tape vertically across my lips to keep them shut (would leave it slightly loose so that I could breath through mouth if really necessary). Chin straps are another option.

However you might find, as I did, that you can eventually learn to sleep with your mouth shut. A poster here over a year ago recommended concentrating on a comfortable sealed-mouth position while going to sleep. I do that, making my jaw very relaxed and placing my tongue so the tip of it is against my upper front teeth and hard palate, relaxing the tongue so that it sort of seals my mouth so that air cannot escape. That is a very comfortable position and works better than focusing on keeping lips together (for me at least).

Hope this helps!

Grace

[SleepySandy]

First - thanks to everyone for your suggestions. They're all very helpful. To give you a little more information - my CPAP pressure is 10 and CFLEX is 1. If my SmartCard tracks anything significant, I don't know because I have no way to get the data off. I'm going to ask about that - I want to know what's happening.


Brenda - thanks for the link to the tricks for the CL2. I actually discovered this after a terribly frustrating night and added the extra strap around my head to hold it in place. It did help, but I'm still having all of the other issues. I'm going to call the other DME on Monday and find out what type of selection they have and if they would let me try on the different masks. It can't hurt to ask, right?


Oboe - Yes, I do want to scream. It's insanely frustrating at this point. I'm more tired than I've ever been. I live outside of Seattle, and it's cold here. We are running the heat and my nose is really sensitive to dry air (hence the reason I knew I needed the humidifier). I don't know if this matters, but my nostrils aren't sore from being dry - they're sore from being stretched. And, they're sore all day. I've tried the lubricant the RT gave me, which is called RoEzIt. I've never seen it mentioned on this board, so I don't know if anyone has heard of it. I don't really care for it.

How did you make your home grown chinstrap? Maybe I can try something tonight. I did have the same thought about relaxing possibly being the reason I'm opening my mouth. I'll try to keep that positive thought.


Snoredog - Where do you get Ayr gel? If my nostrils are sore from being stretched, might the Ayr gel help? Have you heard of RoEzIt? That's the lubricant the RT gave me - it looks like a lotion, not a gel. I don't think it really helps. If I can get Ayr gel at a regular store, I'll get some tomorrow.


Grace - I'm really nervous about taping my mouth - I don't think I could relax. I also don't think I stand much of a chance of training myself to control my mouth while I'm sleeping because I clench my jaw (this is an old issue for me). After figuring out I was clenching, I tried and tried to stop, but I couldn't. I finally had to get a mouthguard. Since I couldn't stop clenching, I don't think I have a hope in the world of training my mouth to stay closed. Other than being claustrophobic, which I am not, why would someone prefer taping their mouth closed over a full face mask?


More suggestions are welcome and appreciated.

Sandy

[bairdbeth]

I bought Ayr gel at my local Walgreens. Good luck! I went through 4 masls in the 1st 4 weeks. I am currently using the CL2. Make sure that you don't have the angle of the hard tube too far away. I found that stretched my nares and made them sore.

[blarg]

...why would someone prefer taping their mouth closed over a full face mask?

Because many people have a very hard time getting full face masks to seal and be comfortable. There's a lot more area that has to be molded to your face perfectly, and for people that sleep on their side and/or stomach, it's even harder to get them to work. So, people that do well with nasal masks but mouth breathe often tape. Some manage to do very well with full face masks as well.

[KeziasPurr]

I use the Respironics Comfort Gel Mask. It's my first mask and I'm pretty happy with it. Though I haven't tried anything else. I love the gel seal, and if necessary I can heat it and mold it to customize it to my nose. They sell it in a petite size, which is what I have.

Only problem with it is the red triangle around my nose that takes about 3 hours to fully go away. Luckily my coworkers understand my situation and don't tease me about it.

[blarg]

I had the same problem with the Comfort Gel. It didn't seal very well at all either (shown my my smart card after 2 nights). I much prefer my Activa and/or Soyala. And I did mold it to my face first.

[sleepyWI]

It took about a week or so with the CL2 before my nares "toughened up". I also found a nice beeswax balm at walmart that helped alot when applied to the edges of my nostrils. (plus nice peppermint smell!). With the garbage tie fix (fishing line in my case) the leak problems are almost non-existent. I also have an Aura Twilight NP, which is very similar to the CL@ but more comfortable. The drawback is that it is noisier.

Bottom line is it took me three months and six masks before I got to where I was comfortable with something. Don't give up!