starting this thing soon and very upset

[animallover]

I don't know how to send this and am not sure how to read your messages but here I go. Am to start using something like cpap very soon. Yes, I am sitting here crying but I guess all of you have done that. At the sleep lab it was found that the cpap threw me into central apnea. This's where the brain does not give me the messages to breath. So I am going to have some kind of a machine, don't know the name as yet but will have to put up with a mask as you are all using.
Could you all give me kind words about the mask? If I can't answer you it's because I'm not sure how to get there.

[carbonman]

Could you all give me kind words about the mask?

Zen of the Mask- Recovery/Rebirth

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.

recovery
a regaining of something lost or stolen

rebirth
regeneration of something destroyed: the regeneration of something that has died or has been destroyed

Hard exercise does not build strength and endurance.
Hard exercise tears the muscle down.
Proper nutrition and rest build strength and endurance.

Silently, alone in the dark of the night, from deep in the abyss of my brain,it seeps out.
Quietly it flows throughout my body and I am recovered and
reborn.
HGH-human growth hormone. Secreted from the pituitary gland during REM sleep.

From the 5th morning, after 5 of the most horrific nights of my life,
I felt the first stirrings of the recovery/rebirth. I had just lived through the first
5 nights of cpap therapy.....and survived.
It wasn't much. Just a slight easing of the pain in my legs as I walked up the stairs at my work.
It was enough to convince me to keep trying.

Last Saturday, ~2 miles from the summit of Vail pass, my rebirth was complete.
My mind, firmly in control. My body, begging to stop this madness.
Mind dictating to body, you're fine.
Today is our day.
Today we are reborn.
Today, through cpap, we are recovered.
In retrospect, the strongest ride of my life.

So, 1yr after starting cpap,
at the tender age of 58,
I am reborn.
What was stolen from me for years, has been found.
What was dying, has been rebuilt.

With every night of cpap, the horizon continues to stretch farther away.
The boundaries of my limits continue to expand.


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.

[Disneymama]

I'm sorry that you're having a rough time with your diagnosis. I don't have central apnea so I can't speak about that, but here are my kind words about my mask...

I LOVE IT. It makes me feel "normal" during the day. I'm rested for perhaps the first time in my adult life and it's the first time in this decade that I've actually had pain free days. I've been so lucky to have my first mask fit and work for me. My mask that I was fitted for was smaller than the mask I tested with and a lot more comfortable. The first couple nights I was really aware of it on my face and felt a little self conscious about it but after that I don't hardly even realize that it's there.

I hope that you can make peace with your diagnosis and your mask.

[Gerryk]

Hello and welcome aboard. I do not have central sleep apnea so I can't truly relate with you on that. But I will say congrats on finding that you had a problem and doing something about it.

What kind of mask did they have you try? Was it something that went over your nose and mouth or just your nose or something that had what we call pillows that went into the nares on your nose?

Don't hate the mask or the machine. Just be glad that you found out there was a problem and that you can be treated. There are a couple people on here who have sleep apnea with centrals and they are very knowledgeable about everything to do with centrals, so I will let them talk about that.

When I was first told I should go have a sleep study because I stopped breathing or was ghasping for breath when I was sleeping it scared the hell out of me. I know about it but didn't know much about it other than you had to wear a mask. Boy was in for an education. I found out a little about it but I found out so much more here. Anyway, once I had the study done and was told that all the symptoms I had been putting up with were because of cpap and should improve over time, I got excited. I was excited that I knew what was going on, and that I was going to be treated for it and would feel better.

You came here which is a big step, beacuse you have accepted you have a problem and want to learn about it and be part of your treatment.

So once again welcome aboard, dry those tears and smile because once you begin treatment you will begin feeling better. Besides your with a bunch of new friends.

Gerry

[cotech50]

Do not fear the mask. I too was not quite sure about the mask issue but after the second night I was hooked. I actually look forward to putting my mask on and turning on my cpap because I know it will give me the sleep I have needed for years. Some have to experiment to find the right combination. Seek out a good DME that will work with you. Mine told me anytime I want to try a new mask let her know they send masks out for trial all the time. They even have one of those contoured cpap pillows they will let you try b4 you put the money down for one. Using a cpap is by fay from what I have researched the less invasive and less expensive treatment for OSA. I am sure your centrals can be controlled it may take time and fine tuning but it will come.

By all means come to this forum. There are many people here who have been in your shoes and for many more years than you or I. This is a resource of individuals who are committed to treating their own OSA and freely sharing their experiences of which there are many.

Bottom line you have a condition that is readily treatable with the help of your DOC, DME/ RESPIRATORY THERAPIST and this forum. Keep us all posted and do not be afraid to ask for help. There may be someone in your area who knows the right providers who will be there for you.


GOOD LUCK
cotech50

[Lady Marian]

Welcome. I hope you can heed the advice of those who have posted before me. Dry your tears and prepare to find out what it's like to actually sleep all night the way that you're supposed to. I just had my very first night on CPAP last night. It took me hours to fall asleep, but I kept the mask on all night and awoke with a feeling I can't remember experiencing in the past 10 to 20 years. I was rested.

I sincerely hope that you are able to experience the same feeling very soon. Good luck and please keep us informed. If you could figure out how to make that first post, you won't have any problem participating in the forum!

[KatieW]

Finding out you have a serious health issue is very upsetting. You have come to the right place, to learn and receive support from others who have gone through this.

Learn as much as you can about sleep apnea, centrals, cpap machines, and masks, as this will help with the fear and dread of the unknown. Click on the CPAP Wicki (yellow lightbulb above), and read, read, read. Do a search on Central Apneas, and read about them. Or, just browse among the different threads and read whatever interests you.

When I was diagnosed, I was relieved to know it is treatable. I know several people who have more serious conditions, like multiple sclerosis, heart disease, cancer, etc. who can't live a normal life anymore. After 2 months on cpap therapy, I feel better than I have for years. I have my life back.

Yes, it will be clumsy and cumbersome with the machine and mask at 1st. But, be patient, keep moving forward, solving the little challenges that come up, and you will succeed. I wish you the best.

[yasulh]

Animallover,

I am coming up to four months on CPAP, and I would not go back to where I was for anything. While I have had my moments of sadness and feeling like my body is betraying me (due to the OSA and other health issues), my only regret is that I did not start therapy sooner. While it may take you some time to adjust, stick with it. You will be glad you did!

yasulh

P.S. This forum has been a true blessing for me, and I hope you will stick with us as well.

[Beulah]

You'll be okay. {{hug}} I agree with all posts above. I too look forward to "hooking up" every night and am amazed by how much better I feel all day every day than I have in many, many years. I did keep experimenting with masks until I found my perfect one and for me it's just exactly right.

[KatieW]

Here is a another very good source of information:

http://smart-sleep-apnea.blogspot.com/

If you have access to a printer, print it out, so you have a copy to read slowly.

[gasp]

The kindest thing I can say about my mask is that I ABSOLUTELY LOVE IT! It will have to be pried from my cold dead fingers when I die! This mask was suggested to me by my durable medical equipment provider (DME) and I actually physically withdrew and said "no way" or something to that effect.

A year into therapy I was having trouble with my nasal mask and decided since so many liked the mask I would try it. When I first began XPAP (the X is generic and takes the place of BPAP, CPAP, etc), I couldn't breath through my nose well so I used a nasal mask and a full face mask. A year into therapy my allergies got better, I learned how to not breath out of my mouth during the night, and could then use nasal pillows.

Picture of my favorite nasal pillow mask - main mask that I love so much https://www.cpap.com/productpage/Comfor ... large.html

Picture of full face mask that I use as an alternate to my nasal pillows when my allergies kick up and I can't breath out of my nose.
https://www.cpap.com/productpage/resmed ... dgear.html

After two years of therapy, I feel so much better and have learned to love the feeling I have when I put my mask on and drift off to sleep.

This forum is a wonderful resource. If it wasn't for it, I wouldn't have the highly successful therapy I have today. Welcome and let us know what machine and mask you will be getting. People here can give you really great tips on how to get the machine and mask you want versus taking anything the DME decides to give you. Since CPAP gave you centrals, I'm not knowledgeable to know what to recommend, but there should be others here.

If you do a new post and title it 'Need Help Machine for Centrals' and tell your story, you should get some good knowledgeable replies.

Best wishes!

[kteague]

Welcome. Don't worry about having so much to learn, just absorb what you can on an as needed basis. There are some who take to this treatment right away, well, I was one who took a while. The mask will likely feel foreign for a while. Like with anything else, you'll get used to it. Have you ever had dental work done? I had a crown put on and for a while I kept running my tongue over this odd feeling thing in my mouth. At some point (within a week or two) the hyperawareness stopped and now it just feels like a part of my mouth.

I find security in my mask, as I know without it I am in danger. I spent years avoiding sleep even though I desperately needed it. Once I went thru an adjustment period and the treatment was working well for me, the mask became a signal to my brain that it was ok for me to yield to sleep. After years of unrestful sleep, I cannot describe how GOOD it feels to REALLY sleep. I'm still dealing with other health issues, but me and my mask, we make a great team.

Keep in mind if you have had obstructive sleep apnea for a while, your resources are likely depleted, nerves frayed, and emotions on edge. Once you get caught up on your sleep you'll probably find your feelings about this (and everything else) very different. Hang out here. We understand.

[Mtnviewer]

I don't think that there is any perfect solution for any of us when we start down this path. Finding the right mask and then fiddling with it for what seems like forever just to still have some bad nights, somehow doesn't seem worth it. Nor does the constant learning on how we think to get all things set up properly and then to still have some bad nights. But some hours of sleep are better than before and slowly you become more comfortable with the fiddling and the data and the small changes to this and that and in time you end up loving your machine, your mask and more good hours of sleep (you'll still have some mystery bad hours or even nights).

It takes time to try masks, fiddle with them, to figure out how to make then work with your pilllow, your routine, your humidity, the head gear and so on. But you will figure it out and I think that I can say that we've all been through it and have felt exasperated that things won't improve.

Like others, I don't have the central apnea problem that you've been diagnosed with, but be patient with yourself and make small changes to improve your comfort and results. Be imaginative in looking for ways to get the mask to work for you and to fit your face. Try lots of things and there are many good suggestions in this forum but which will take a long time to read to perhaps hit on what will work for you. Sadly if you end up like me, it may take several months to nearly a year to finally figure out how to get a more restful and safer sleep. But it is all worth it and the other option, do nothing or to quit, is not good.

Hopefully you are more fortunate and hit on some quick changes that fix some of your discomfort and that your treatment takes off. Then you can start helping others with what you've learned and had success with.

[Muse-Inc]

...but will have to put up with a mask as you are all using. Could you all give me kind words about the mask?...

The following are the main types of masks:
Nasal - it covers the nose
Pillows (weird name) - has these sorta fat prongs that sit at the end of the nose...most minimal and are very comfortable (as bizarre as that sounds). My first mask was the OptiLife; I wore it for 23 months and loved it.
Full Face - covers a fair amount of the face (some love 'em, some hate 'em)
Hybrid-style - covers the mouth and has the pillows, comfortable mask, it does not cover the nose or touch the forehead like a tradtional full face mask. There are 2 masks: RespCare's Hybrid and ResMed's Liberty (I now wear the former and really like it)

There are others if one of these types doesn't work out. Finding a mask that's comfortable is essential to making this therapy work. Keep at it, one of the these will fit your particular face well...keep changing masks until you find one that works. I have both hybrid-style masks, the one fits me well, the other doesn't so you may need to try more than one within each type. We can provide suggestions for adjustments that might make the mask more comfortable.

This is potentially a fatal condition; while not fun to consider, remember, CPAP therapy is an effective treatment that will keep you alive while you sleep -- this tends to put a whole different slant on what it means to be a hosehead. I am grateful every morming for my equipment because it helps me survive sleeping. After you start getting some restful sleep and enough of it, you will be amazed to discover pleasures you've forgotten existed, dreams will return, if you're getting up to pee at night it'll likely stop really soon (I was 8-10 times/night, stopped on night 1 never to return...yeah!), mood improves, stress reduces, someone posted she was a bat-shit crazy lunatic...she's a nice rational person again, energy to be productive will return along with mental excitment over challenges, and exhaustion will become plain ole tired and then one day you'll wake up before the alarm and feel good. Oh, and if you've got hypertension, in time it might go away.

Welcome aboard!

[JohnBFisher]

... I don't know how to send this and am not sure how to read your messages but here I go. ...

First of all, welcome! You've come to the right place to find out a lot more about using CPAP / BiPAP and all sort of xPAP (any Positive Airway Pressure) therapy.

... Am to start using something like cpap very soon. Yes, I am sitting here crying but I guess all of you have done that. ...

Well, yeah. But that does not make your pain any less real. By the way, since you are feeling overwhelmed, might I suggest you read the following book:

http://www.amazon.com/Delicate-Balance- ... 0738203238

It is titled "A Delicate Balance: Living Successfully with Chronic Illness". You can order it from Amazon. And at 10 cents the used price is more than the shipping for the book!

... At the sleep lab it was found that the cpap threw me into central apnea. This's where the brain does not give me the messages to breath. ...

Boy do I understand that. I have problems with my brain stem, so even when I am awake I don't breathe as well or fequently as I should. I often need to remind myselt to breathe:

Note to Self: Breathe a little more frequently today!

But trust me, I really, really understand how overwhelming this can feel.

... So I am going to have some kind of a machine, don't know the name as yet but will have to put up with a mask as you are all using. ...

It might be a BiPAP or if you have enough central apneas, your sleep doctor might recommend a BiPAP S/T unit. Essentially it is a BiLevel machine. That is it has a different pressure when you inhale than when you exhale. By reducing the pressure enough to stop the obstructive apnea, but not so much that it triggers a central apnea, the exhalation pressure of the BiPAP can be a godsend.

If you still have problems with central apneas (or if they were frequent enough), then your doctor may prescribe a BiPAP that also tracks your breathing rate. If you fail to breathe (after a certain amount of time) it switches from exhalation to inhalation pressure. It's utually enough to remind your body to "breathe, baby, breathe!". That type of BiPAP is called a BiPAP S/T (for spontaneous/timed ... that is it changes pressure based on your spontaneous breathing and on a timed backup rate ... if you don't breathe soon enough).

... Could you all give me kind words about the mask? If I can't answer you it's because I'm not sure how to get there. ...

I won't lie. Either way. It can be a real pain in the butt !! However, the ability to sleep peacefully, wake up feeling refreshed, being able to think clearly, staying focused for hours on end, not falling asleep at the drop of a hat ... well, those postives definitely outweight the downsides.

Anway, welcome. And I hope your journey is less eventful than you fear.