Needing Help....day 3

[LaurieP]

Hi Everyone, I have been reading here since Tuesday when I got my machine. I'm tired and frustrated. I have not made it more than 3 hrs (avg) each night without removing the mask. I'm not sure of the name but it's a nasal mask with the T to the forehead. Everytime I lie down and have to hold my mouth closed I feel clausphobic and that I'm not get enough oxygen. I think I'm needing a full mask without anything touching my forehead so that I can put my glasses on to see the clock which would be a bonus also. My AHI has been 2.2, pressure 13.3 and no leaks. I know this will take time but ugh is how I'm feeling right now.

[snuginarug]

Welcome, Laurie. I'm sorry you're having such a tough time. Claustrophobia was pretty bad for me for the first week or so. Adjusting to having something on your face is hard. We all know about that, and can really understand. 3 hrs is actually not too bad, as long as you get back in the saddle again. I would sleep how ever many hours, (for me it was 1 to 2 hours at a time, yikes!)and when I awoke I would take off the mask and go sit quietly in my living room until I had settled down and felt tired again. Then back on with the mask. I discovered somewhere down the line that waking up after 3 hours (what I was sleeping after getting over the creeping horrors) was caused by a comfort issue. I tackled that issue the best i could, until my doctor suggested a solution that worked. Take one thing at a time. Try to determine if your nose does actually change as you sleep, causing you to wake up and feel like you can't breathe. Does your nose get stopped up with mucous or inflammation while you sleep? Is there another comfort issue waking you up? Clock watching isn't the best habit in the world, but if you feel the need, you can get one with huge luminous numbers so you don't need your glasses. I put one like that at the foot of my bed, positioned so that if I woke, I could just lift my head a tiny bit and see the time. But it's really not a great habit to get into long term. After things settled down, I broke myself of the habit. But you have to do what you have to do to get through the adjustment phase. For me the most important thing was telling myself sleep = mask. No mask, no sleep. I made a really firm commitment. I screwed up a lot by taking it off in the middle of the night and dozing off before I could put it back on. But I am now over that, pretty much.

It takes a while, but you can adjust. Address each issue as it comes up, and eventually you'll get it.

[archangle]

I wear glasses all the time with my ComfortGel mask on. Have you tried your mask with glasses on? Where does it hit the glasses?

If you feel like you're getting no air, open your mouth and let some air flow through to reassure yourself that air is coming in. Check the pressure on the display at the time you feel like you're not getting enough air. Open your mouth and try to breathe in through your mouth if need more air, but you probably won't actually be able to breathe in through your mouth because the air comes in too fast from the machine.

You aren't using ramp are you?

If you've been living without CPAP until now, there's probably no medical harm in only getting a few hours a night on CPAP to start. You may need to get 4 hours a night for insurance reasons, but if it takes you a week or two to get there, I don't think you'll have problems. You may also find it helps to hook yourself up and do CPAP while reading or watching TV just to get yourself used to it. (It will add to your "insurance compliance hours," too. )

Unplugging the hose from the mask and wearing that may also help you get used to having the mask on. It's not as good as having the machine connected and blowing, but at least you can walk around.

[lpacheco]

I appreciated the comments and helpful hints. My coworker has been using CPAP for 5 yrs so he also has been trying to help me out. He uses the Mirage Swift II nasal pillows. He bought in his extra, might give that a go around also. I know it's hit or miss till you found what works for you but everyones suggestions are helpful and great to hear.

Thanks again....Laurie

[rested gal]

Laurie, if your autopap is set for "Auto" mode, what are the pressure range settings --- the Minimum pressure and Maximum pressure settings?

[Otter]

And are you using A-flex or C-flex, Laurie?

[TalonNYC]

Hang in there! First off, the others will have great suggestions when you get them answers to their questions. In the meantime:

Remember that you have not spent your life sleeping with something on your face. This makes your body react with alarm when you try to do so. Your body will - very quickly - begin to see the mask as "normal" and essentially ignore it, but that's not something that happens overnight (no pun intended - well maybe a little pun). As proof, you can look at your sheets and pillow. Your body doesn't react at all to them touching you all night, because it has listed those items as "safe" and put them on the ignore list.

Try lying in bed with your mask on for a few minutes at a time when you are not ready for sleep. Leave the hose unattached so that you get lots of fresh air. As your body recognizes that you're OK and that you're getting air, it will begin the process of marking the mask as "safe" and letting you sleep with it on.

Good luck, and keep us posted!

[LaurieP]

On Friday I went and got a different mask...using the Swift LT for her and I really like it. Very light weight and it seems to stay in place. I also don't rush to get to bed, I have been putting it on like a half hour before hand and just relax and read for a few with it on. I seem to be fine the first 4 hours than I wake up for some reason than I can't get relaxed again. I know this isn't going to happen overnight and I'm going to keep going with it. I feel fours hours right now is better than none and at some point I will get over this hump also.

My machine is on auto so it's 5 - 20 pressure but it seems to be right at 13 when I read the numbers in the AM. AHI are around 2.3 and there has been no large leaks that I can tell.

Thanks for all the advice/help!!! Great appreciated.

Laurie

[TalonNYC]

2.3 is really good! "Normal" is 5, so anything under that is great. Keep working on sleeping through the night, it'll happen.

[gasp]

I use a projection clock that shows the time on the ceiling. We got one as a gift years ago and have them all over the house now.

http://www.amazon.com/Oregon-Scientific ... 373&sr=8-6

Archangle asked if you were using the ramp feature on your machine and this reminded me that when I first started and my machine was on ramp I didn't feel like the air was being delivered fast enough. The solution for me was to lift the mask and break a few breaths through my mouth, relaxing into breathing slower, then settle the mask back down and continue to breath.

I think it was hard to get enough air through my nasal mask at night because I was used to a lot of air all the time breathing through my mouth during the day. Eventually I learned to breath through my nose during the day which made using XPAP at night much easier, including it was then natural for my mouth to remain closed when wearing the nasal mask.

Best wishes!

[snuginarug]

I know this isn't going to happen overnight and I'm going to keep going with it. I feel fours hours right now is better than none and at some point I will get over this hump also.

This is awesome! What a wonderful attitude! Have you noticed feeling any better during the day?

[LaurieP]

Not feeling better at all because I have a good day than a horrible day or two...it's only been a week so I'm hoping what I'm experiencing is normal. I don't want the DME (?) to read my report next Tuesday and tell I'm sucking at this.

Laurie

[TalonNYC]

Yes, for most of us, it takes a couple of months of regular use to start feeling noticeably better. The issue is that it might have taken years to get into the state you're in, so it takes a little time to start getting better. The good news is that it does NOT take years to bounce back =)

[robysue]

Laurie,

On Napstress's thread you wrote:

Napstress, Sorry about your Uncle but your post was what I really needed to see today. I'm in this a week and I'm tired and frustrated. Knowing that you are in this 75 days and just now have gotten two good days leads me to keep going. I'm lucky to make it 4 hrs than the mask comes off...ugh!! I'm going to try the sitting up but leave the mask on to calm myself down when waking. Out of 7 days I didn't use it three which isn't helping. I guess I thought it would just be easier than it really is.

Take care and hope you have another great night....I need that clear feeling.

Laurie

I thought about posting this on that thread, but decided you'd be more likely to see it here.

First, I want to provide you with some hope too. It does get better---even if you feel like you continue to whine and moan and bitch and complain and shout about how unfair it all is---for several months in my case. I started CPAP back in September. Almost 8 months ago now. It's been a very up and down ride---mostly down it seems at times. But I have had some good days. No where near as many as I'd like, but some. And a few really remarkable days.

And there's a lot of two steps forward, one step back involved in the process for many of us.

But I think you've really identified one really significant issue for yourself to face when you wrote: Out of 7 days I didn't use it three which isn't helping. Choosing to not use the mask tonight, or even worse, not even trying to use the mask tonight, does indeed make it much, much harder to force yourself to use the mask the next night. And the night after that. And the night after that ....

When I was a brand-new newbie CPAPer and severe insomnia had already started to raise its ugly head by Night 3, I kept telling myself: Take it ONE NIGHT at a time. All I have to do is put the mask on TONIGHT and try to sleep with it. Don't worry about the future until it's here. Focus on TONIGHT and mask up just for TONIGHT. That really helped me with establishing the habit of being compliant. It didn't fix my adjustment issues, which mainly revolve around insomnia, but establishing the habit of being compliant has helped and continues to help me keep plugging away at making xPAP work for me. And one day, I am confident, xPAP will truly work for me: In the immediate sense of my being able to use it without it continuing to feed my insomnia and in the broader and grander sense of my feeling better than I did pre-CPAP every day instead of the rare day.

[Janknitz]

Laurie,

Your very wide pressure range (5 to 20) may be part of the reason you are waking up at the four hour mark. When a machine is set that wide open, it has to chase your apneas. That increases the pressures dramatically during REM sleep especially, and those dramatic changes can disturb your sleep.

Maybe we've addressed this already on another thread, but why the wide range? Are they trying to titrate you at home, or is it just what your doctor thinks will work because many clinicians (perhaps mistakenly) believe that a wide open pressure range will "catch" all the events?

Have you looked at your data to see if there's any correlations to the times you are waking up?