so frustrated

[ghoundgirl]

How do you get past the idea that you have to sleep with a plastic mask strapped to your face for the rest of your life?

I still can't get through a whole night with the mask on. I'm averaging probably 3 hours a night. My belly fills up with air every night--it's so uncomfortable! The r/t says raise the head of my bed. Try sleeping with your chin tucked in. Tried both of those things. Doesn't help.

I feel like I'm not getting enough air. I can't get comfortable! The mask (I've tried three different kinds now) doesn't stay on right when I sleep on my side. I can't sleep on my back! I wake up as many times in a night to adjust the stupid mask as I did from apneas and hypopneas before cpap. How is this any better?

Why has someone not designed a better mask? It's not like sleep apnea is a new disease. Or a better way to keep the airway open?

Ugh. I'm so tired and depressed and WHINY.

Thx for "listening." At least I know I'm in a place where people understand.

[pdean44]

Without a doubt going through the first few weeks can be tough. I dont worry about the mask for the rest of my life. I just think of what i need to do today. Not so daunting an enterprise then. i found that the starting pressure seems a bit low on my machine and i changed the ramp speed from 20 mins to 5 mins or none at all to compensate for that.A lot of folks adjust their machines to up the low end pressure. I dont feel comfortable doing that yet. It takes a while to get used to sleeping with the hose and mask where you are not jarring it loose etc. Getting the right pillow will help. There are many out there you can buy that makes it less likely to break the seal on your mask when sleeping maybe one of those will help. Your body will go through a period of adjusting to the pressures and there are some phobias we may need to deal with along the way. Feeling refreshed in the morning when you get past the trial and error stage will be the pot of gold at the end of the rainbow. the folks here are very helpful and you will get a lot of great helpful feed back to help you along your way. I know I have .
Perhaps sleeping with a chin strap will help position your chin and tongue be in the proper position when you sleep to help prevent the air getting to your tummy. i have heard some folks suggest that i think.

I am pretty new as well and struggling a bit here and there. I am determined to make it work and get that pot of gold. I hope you find yours soon.

[LinkC]

You don't "have to".

You couold NOT wear the plastic every night for the rest of your life.

But that "rest of your life" will likely be shorter. The choice is yours...and you DO have a choice!

(Personally, I'm grateful I found some way to prolong the rest of my life--even if I don't like it much.)

[JohnBFisher]

I'll tackle this out of order:

... Ugh. I'm so tired and depressed and WHINY. ...

Oh, boy! Do we ever understand. You are absolutely right when you note:

... Thx for "listening." At least I know I'm in a place where people understand. ...

As long as you let us know you are venting, we can take it seriously ... as that. And then move on to help.

... How do you get past the idea that you have to sleep with a plastic mask strapped to your face for the rest of your life? ...

We've all been in that situation. It feels frustrating. Sleeping with a mask is NOT normal. It feels depressing. It's a horrible feeling to know you may need to use a bloody machine every night for the rest of your life. But as you start to get good sleep that feeling does pass ... mostly.

But then, I would rather do without my glasses. But the rest of world would not be as lovely without them. So, I put up with them.

Ditto with the CPAP. Until someone comes up with something better, I will live with it.

... I still can't get through a whole night with the mask on. I'm averaging probably 3 hours a night. My belly fills up with air every night--it's so uncomfortable! The r/t says raise the head of my bed. Try sleeping with your chin tucked in. Tried both of those things. Doesn't help. ...

Okay, you gave it a good college try. You've been at it a couple weeks (at least, if I remember). Well, at least a week, from your profile.

It sometimes takes a few more weeks to adjust to the pressure. But if it causes that much problem, you might need to go back to your sleep doctor and see if an auto-titrating unit would help. Why that? Well, it would allow you to sleep with the least amount of pressure needed until an apnea occurs. It won't completely avoid the air in the stomach. But it helps.

Also, have you looked at any of the other suggestions in the forum for "aerophagia"? You might find something in the experience of others that will help you.

... I feel like I'm not getting enough air. I can't get comfortable! The mask (I've tried three different kinds now) doesn't stay on right when I sleep on my side. I can't sleep on my back! ...

Some people use a pillow to help with CPAP. You can find them listed in CPAP.com:

https://www.cpap.com/simple-find-cpap-p ... llows.html

They sometimes help. You can research here in the forum to see what people think about the various pillows.

... I wake up as many times in a night to adjust the stupid mask as I did from apneas and hypopneas before cpap. How is this any better? ...

Believe it or not, you WILL get accustomed to it. Once you do, you will fall asleep peacefully. If my mask starts to leak, I don't even fully awaken. I just adjust it. But it takes time for your body to develop new habits. Think back when you learned to drive. Or ride a bicycle. Neither came automatically. But suddenly they felt natural and normal. That's what you are learning now with the CPAP. It takes time to adjust.

... Why has someone not designed a better mask? It's not like sleep apnea is a new disease. Or a better way to keep the airway open? ...

Oh, you would not believe how much better the masks are. I used to walk up hill both ways ... Ooops! Wrong story. You get the idea. They are better.

And I fear there actually are better methods to keep the airway open:



Ugh! No, thank you!





[/quote]

[harry33]

be patient and think positive
you may have the habit of swallowing air, sit up in bed and burp often
without your CPAP, you will die sooner

[Country4ever]

It can be very hard at first to accept it.
But try to make friends with it. Before going to bed, have a talk with it. Thank it for trying to help you have a better life. Try to see it as helping you and is not your enemy.
It gets easier when you start realizing that you feel better because you're using it.
Hang in there and try not to fight it. Do what you can........a few hours a night. You'll eventually get used to it and accept it and be glad it was invented.

[carbonman]

How do you get past the idea that you have to sleep with a plastic mask strapped to your face for the rest of your life?

Zen of the Mask-the rhythm

Zen-direct experiential realizations toward obtaining an awakening.
The practice to discover, through daily, or in this case, nightly,
experiences that will lead one to ultimate enlightment.

All things are brought to each of us, for a reason.
Why OSA???

In OSA therapy, the mask, is everything.

rhythm-a regularly recurrent quantitative change in a variable biological process
<a circadian rhythm>

the rhythm of expectations-
My confidence in cpap is confirmed, I no longer question, "is it working?"
I know that each night and the next morning, I will be better.
I feel the change on my bike. Pushing bigger gears up familiar hills.
Pushing my mileage, pushing my endurance, pushing my enjoyment,
confident that each nights rest will bring the blessed recovery.
I hear it in my music. My guitars are fun again. I remember the old songs,
I learn new songs and remember each of them, and improve on them, daily.
....ah, to remember, I can remember, slight details, again.
I don't question if it is going to happen, I expect it to happen.

the rhythm of breathing-I go to sleep, listening to and feeling,
the rhythm of Grace, my machine.
It is the rhythm of life. I welcome the sound, the sound of my breathing,
in sync, w/a machine, in sync w/my new life, flowing through a hose.

the rhythm of routine-I live in the rhythm of the routine of cpap.
The care and feeding of Grace each evening.
Slipping into my Papcap and mask, plug in my hose, hit the blue light,
feel the rush of 12.5cm......
The morning routine of mask cleaning, data recover and analysis.

the rhythm of life-In response to my first Zen of the Mask chautauqua,
someone suggested that I "become the mask."
Good suggestion. I have become one w/the mask.
Sometimes I wake and don't feel or realize I'm wearing the mask or
breathing through it. I don't think I could sleep now without the mask.
I had a dream, where the actions in the dream were coming through the
hose and out of my mask. Sometimes when the stresses of the day
clog my brain and I can't seem to let go of all that "noise", I let myself
go into my mask to see all the things, the mask,
is going to bring me the next day....the next day of my new life.
Zen of the Mask

Yin/Yang of life-
MY choice to embrace or reject, the mask, and in so doing,
chose quality of life.

I have chosen quality of life.

[pdean44]

wow Carbon thats awesome.

[DoriC]

What helped me adjust to the role as caregiver for my husband's therapy is I kept reminding myself to be grateful that there is treatment for this disease which will prolong his life if I don't give up. It takes patience and lots of tweaking but the end result is worth the struggle. Now the sound of his machine and quiet breathing comforts me. You'll get lots of help here so stay with us and ask questions.

[Jersey Girl]

Dear Ghoundgirl,

When I was wearing a nasal mask, I used a memory foam cpap pillow from http://www.contourliving.com. It has nice, generous cutouts on both bottom corners of the pillow to allow room for your mask and is ideal for side sleeping. I had a lot less leaks with it. Now I sleep with a Regensis buckwheat hull pillow from http://www.pur-sleep.com. It works along a similar concept as a bean bag chair. You can run your hand all down the side edge of the pillow, so that there is less fill where you put your mask and more fill where you put your neck when you sleep. The mask is not disturbed and you have less leaks.

As to sleeping for the rest of your life with a mask, well, right now, you are at the beginning of your cpap journey. You may not have found your perfect mask or perhaps perfect pillow for sleeping with your mask yet. I went through 4 masks before I found my personal favorite. The fourth one was a charm! I also ordered a fleece hose cover from http://www.padacheek.com. It feels really cozy and helps to prevent rain out. Makes my cpap hose feel more like a cozy stuffed animal and it comes in many cheerful colors.

Once you find your favorite mask and pillow, this won't seem all that terrible. In fact, like many of us, you may find yourself looking forward to the air. I find that the warmth of the humidified air is helping my sinuses tremendously! Most importantly, one day you will wake up and feel truly rested. Your fatigue will have dissipated and you will feel more like you again. This is an adjustment period; it DOES get better. Additionally, you have friends here - all of us have gone through our individual issues getting used to xpap treatment. You are NOT alone.

PM me any time you want to vent, or even if you want to talk through tweaking of your mask or trying other comfort items. I care about you and I really want this to work for you because you need it for your health - body, mind and spirit!

Warmly,

Jersey Girl

[Jersey Girl]

Carbonman -

Thank you for your post. I felt as though my whole body was relaxing and getting ready for sleep, just reading what you wrote. I thank you!

Warmly,

Jersey Girl

[ghoundgirl]

Thank you all so much for the replies--each one had something that helped.

It helps just knowing you all are here. I WILL get past these early days, and I'm looking so forward to the benefits of cpap.

[unadog]

Like othes here, I have times when I can't tell if the machine is turned on or not. Once you find the right settings for you, the air stream seems to just disappear into your normal breathing.

I also have times when I forget wheher my mask is on my face or not. Sort of like wearing a hat, or reading glasses, when you go to look for them, only to find them on your head ..... People are incredibly mallible.

You might also go look at "CBT" - cognitive behavorial therapy - for coping tools.

Finally, I don't know if the following article will help or not? It was just posted since you started your post.

I would combine the comments in the article (below) with two beliefs or feelings: The first is a feeling of gratitude - for all living beings that have gone before us, our ancestors. The second is a feeling of compassion, for all of the beings yet to come - our children.

Today we influence the future, evolution, beyond just the physical evolution and limited geography that defined a small community 100,000 years ago. Now, even if we don't have biological children, we become part of the learnng and sharing of cultural evolution, a larger "teleos", of our world.

Whether you define that scientifically, or in religous terms, as long as we care and have compassion, life is important. Try to think of the future and past in terms of "deep time" - what the next 100 million years might bring.

http://www.huffingtonpost.com/andrew-z- ... 08931.html

In my talks in Denmark, I stressed to the audience how I and they were--without any doubt--the luckiest people who had ever been born in the history of human civilization. Never have there been human beings so wealthy, so educated, and so absolutely free to do as we please as we are.

http://www.dalailama.com/messages/compassion

I believe that the purpose of life is to be happy.  From the moment of birth, every human being wants happiness and does not want suffering.  Neither social conditioning nor education nor ideology affect this.  From the very core of our being, we simply desire contentment.  I don't know whether the universe, with its countless galaxies, stars and planets, has a deeper meaning or not, but at the very least, it is clear that we humans who live on this earth face the task of making a happy life for ourselves.  Therefore, it is important to discover what will bring about the greatest degree of happiness.

sorry, my undergrad degree is in philosophy!

[ozij]

How do you get past the idea that you have to sleep with a plastic mask strapped to your face for the rest of your life?

I got over it when the therapy started working and I realized that I'm sleeping better and feeling better.

I feel like I'm not getting enough air.

• What is the pressure recommended by you sleep study?
• What is the machine set on?
• Are you using the ramp to fall asleep?
• Are you sure you problem is lack of air on inhale, and not difficulty exhaling?

I can't get comfortable! The mask (I've tried three different kinds now) doesn't stay on right when I sleep on my side. I can't sleep on my back! I wake up as many times in a night to adjust the stupid mask as I did from apneas and hypopneas before cpap. How is this any better?

It's not.
I'm a side sleeper, and two things helped me tremendously:
Letting the hose dangle from above,
Finding the right type of pillows.

They both make a tremendous difference, and are probably not tought in "RT school" (whatever that is....).

Rested Gal's LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

[dave21]

How do you get past the idea that you have to sleep with a plastic mask strapped to your face for the rest of your life?

For most of us we adapt very quickly to wearing a mask. I'm quite open about my Sleep Apnea with friends and work colleagues, a number ask me "How on earth can you sleep with a mask on at night?". For me it's about feeling better, having my organs regenerate whilst I'm sleeping like a normal person. Quite simply put it, Sleep Apnea kills, so it's a matter of LIFE or DEATH.

Some people can't get used to wearing a mask or the pressure, to me it's almost like waking up on an ice cold winters morning and wanting to get into a nice hot shower to warm up. Once you get used to it, it's just like drinking a cup of tea or coffee, you do it because it becomes part of your routine.

I've been on CPAP for 4+ years now and adapted very well. I'm trying to adapt to the Nasal Pillows (which I am still struggling with). Last night was a perfect night, AHI = 0.0 again But for me the Nasal Pillows I find difficult to work with, others adapt to it without any problem. Each to their own I guess. Some find it easy to adapt, others find it difficult to adapt.