Getting very discouraged

I have had my CPAP machine for almost 4 weeks. My setting is 11. Since I have had the machine I have not been able to keep the mask on for more than 2 to 2 1/2 hours. Many nights much less. My average night sleep is about five and a half hours. I usually go to bed around 8:30 PM and I get up to get ready for work around 2:30 AM or so.

Sunday night I thought I had reached a break through when I slept almost four and a half hours with the machine. I remember waking up around 1:30 and removing the mask, but I have no idea why I removed it. Last night, I ended up wearing the mask for no more than 30 minutes or so, then I took it off because I felt like I was suffocating (I am claustrophobic).

Originally, the RT who set me up with my machine gave me a small Mirage Quattro FFM. After about two weeks, I contacted the DME and told them that the mask was too small and I was getting too many leaks. I met with a different RT and he agreed that I was definitely a medium, not a small. I figured the leaks was keeping me from sleeping with the mask and had high hopes that if the mask fit better I would be able to sleep better. Unfortunately that wasn't the case.

As my subject line indicates, I am getting very discouraged. I know that the machine is necessary for my health, but I'm beginning to think that I am not going to be able to get used to it. It seems to me not being able to get sufficient sleep is even more detrimental to my health.

WHERE are the leaks coming from?
Having a mask adjusted too tight can cause leaking, too.
Many of the (original) Quattro masks leaked out of the elbow in the front of the mask. Pulling that out and making a few wraps with Teflon plumber's tape will seal it.
Bed pillows can make a huge difference. "Standard" bed pillows can push a mask out of alignment when the person's head sinks down into it. There are pillows designed for or that work better with this therapy. The one I use is in my profile.


Den

Hi Ron, since you are claustrophobic why don't you try the Swift FX or the F&P Opus 360. I use both of these and have no problems with leaks. And because they are so small I don't have that claustrophobic feeling. Don't give up it does take time to get used to something on your face....

In addition to what Den said, if you have oily skin, that too can cause leaks. Some use astringent to clean off excess oils others use special wipes they keep by bedside for use as needed during the night.

Another pillows mask is the Breeze. It has lots of adjustments and only touches the back of the skull and the nares and should not be claustrophbic.
As a sometimes mouth breather I use a small vertical piece of tape to discourage my mouth from opening. It works! I've been 'happy' with this mask for nine years. Hope you find a solution soon. Keep working at it: it's worth it.

I am really new at this too (1st week) and found I was extremely claustrophobic. They gave me the Swift LT nasal pillow mask and it helped me a whole bunch. Still a little problematic, but no where near as much as the masks! I was ripping those off within 5 minutes because I felt like I was suffocating. I also found that turning down the humidifier to 2 helped with the issue of feeling like I was suffocating. I'm still only getting about 4-5 hours sleep each night, but it is getting better, slowly I guess it just takes some time to get used to. Less sleep now for awhile means lots more eventually. At least that's my 2 cents worth.

One thing my sleep tech did for me was to give me a full face mask to wear for an hour or two in the evenings to try to get used to it.

Thanks to everyone who has replied. Now that I am wearing a medium mask, I am not getting air leaks like I was with the small mask. What I had intended to convey was that I had hopes that if the leaks were eliminated by going to a larger mask, I would be able to adjust better to the machine. Unfortunately, even with no leaks, I'm not tolerating things any better.

I really think if I could wear a nose pillow, or some other form of nasal mask, this would help with the claustrophobia issues. Unfortunately, I have a deviated septum (I know, I'm a mess) thus, I am a mouth breather by necessity which in turn necissitates wearing a full face mask.

I do appreciate the words of encouragement. I'm not a quitter, so I will keep "fighting" this thing until I win or until I just don't have any fight left in me.

RBernier wrote:Thanks to everyone who has replied. Now that I am wearing a medium mask, I am not getting air leaks like I was with the small mask. What I had intended to convey was that I had hopes that if the leaks were eliminated by going to a larger mask, I would be able to adjust better to the machine. Unfortunately, even with no leaks, I'm not tolerating things any better.

I really think if I could wear a nose pillow, or some other form of nasal mask, this would help with the claustrophobia issues. Unfortunately, I have a deviated septum (I know, I'm a mess) thus, I am a mouth breather by necessity which in turn necissitates wearing a full face mask.

I do appreciate the words of encouragement. I'm not a quitter, so I will keep "fighting" this thing until I win or until I just don't have any fight left in me.

As "Rick B" said, you might try turning your humidifier setting DOWN (or Off). Too much humidity can exacerbate claustrophobia. I don't use any heat and keep my distilled water in the fridge.

Do nasal cleansing before bedtime to get your nasal passages open. If you go to a nasal mask, you're going to be more inclined to mouth-breathe......and that's what you DON'T want......then you'd have to tape your mouth shut......and you'd be back to the claustrophobic sensations again.

Keep reading and experimenting.


Den

You might find some helpful info here:
http://www.sleepandcpap.blogspot.com
If you have a particular question, I'd be happy to blog on a new topic.

There is definately a learning curve with using xPAP. Keep on asking questions, experimenting and reading as Wulfman already suggested. Before you know it, you will be sleeping easy.

Couple things as you move forward. Are you using the ramp feature? If so, for what period of time and at what starting pressure? I noticed you mentioned waking up in 30 minutes and wondered if that timing is significant. Also, are you watching your data? Wouldn't want claustrophobia to get the blame when it could be an issue of needing a different pressure.

sleepmba wrote:You might find some helpful info here:
http://www.sleepandcpap.blogspot.com
If you have a particular question, I'd be happy to blog on a new topic.

There is definately a learning curve with using xPAP. Keep on asking questions, experimenting and reading as Wulfman already suggested. Before you know it, you will be sleeping easy.

Thank you for your blog. There is some very helpful information there. I'm considering trying a chin strap to see if I can get used to breathing through my nose at night time. I can do so conciously, but once I fall asleep, the mouth drops open. If I tolerate the nose breathing (I do have a deviated septum, but it is not "severe"), I will probably look into a nose pillow/mask.

Thanks for the suggestions of lowering the humidity or even turning it off. I tried a couple of lower settings, including off (I've been running on a 3 or 4) Unfortunately, that didn't work. I woke up with my throat extremely dry - in fact, it was so dry it felt like someone was sticking knives in my throat. Oh well - back to the drawing board.

kteague wrote:Couple things as you move forward. Are you using the ramp feature? If so, for what period of time and at what starting pressure? I noticed you mentioned waking up in 30 minutes and wondered if that timing is significant. Also, are you watching your data? Wouldn't want claustrophobia to get the blame when it could be an issue of needing a different pressure.

Hi kteague.

I have been using the ramp feature. It starts at a pressure of 4 and ramps up to my "full" pressure of 11 over a 20 minute period. Last week when I saw the RT for a mask replacement, he suggested that I try to let the machine come on at full pressure and not use the ramp feature. When I had my first and only "success" Sunday night, I had gone to full pressure right away and had not used the ramp feature. The nights that I manage to get 2 - 2 1/2 hours of use, I don't beleive that it is claustrophobia or a sense of claustrophobia that is waking me up. In the roughly four weeks that I have been attempting to use the machine, there has probably been "only" 6 or 7 nights that I couldn't get past more than a half hour or so of use.

I believe I am running into two issues (that I am aware of) that are creating problems for me: 1) I wake up with a very dry throat and end up taking the mask off. 2) The mask starts leaking (or I imangine that it is leaking) which wakes me up and I end up taking the mask off.

I'm fairly new with CPAP....my second month. I was having the same issues....laying around wide awake due to leaks and not wanting to move because of the fear of triggering leaks. For the first month, I averaged around 2 hours of sleep...worst month of my life. I was ready to give up until I read a post by DSM about the anti-leak strap for the Quattro by Padacheek. That strap has mad a big difference in combating leaks (Thank you DSM and Padacheek). I am still not getting enough sleep but getting better...I've gone over 5.5 hours for a few nights now.

I'm still struggling but I think these things have helped:

1. I don't use the ramp feature since I don't want to worry about leaks being triggered at full pressure 30 minutes later.
2. I use the anti-leak strap
3. I use the Mack's silicone ear plug to plug additional leaks (another tip I learned from here).
4. I use the Remzzz's face liner.
5. I try to play around with the mask during the early evening hours before I go to sleep because I know I don't want to be battling leaks during the middle of the night when I'm trying to sleep.
6. Stay positive and keep reading the posts on this site.

I hope this helps.

RBernier wrote:I really think if I could wear a nose pillow, or some other form of nasal mask, this would help with the claustrophobia issues. Unfortunately, I have a deviated septum (I know, I'm a mess) thus, I am a mouth breather by necessity which in turn necissitates wearing a full face mask.

Consider trying a Hybrid or Liberty mask. Both have nasal pillows combined with a mouth mask. There is no forehead brace and nothing on the nose above the nares.

Joanne