Good advice, bad experience, poor sleep

I was prescribed the CPAP unit and mask and went for two weeks using it only sporadically.

I was ready to quit this whole thing when I wrote a note in this forum last time.

My last post in the forum resulted in enough positive feedback from forum regulars and experienced CPAP users that I gave it an entirely new trial!

I am back here to report that I am ready to give up again...

Do other CPAP users usually have this much trouble?

I usually end up waking at 3:00 or 4:00 AM trying to catch my breath. I take the mask off and turn off the machine so I can get some sleep.
Even on the nights that I keep the blasted thing on until morning, I do not wake up rested... I feel like I have been struggling all night. (I won't go into the dog barking experience of the first night and the cats still avoid me.)

I was getting more sleep without the whole machine and mask business.

I am truly jealous of those who say "I just got mine last week and I feel wonderful."

Well, I've had mine for three or four weeks and I hate it!


Sorry, but I just had to rant...

I am truly jealous of those who say "I just got mine last week and I feel wonderful."

I think the above statement is a "myth", very few seem to sustain that feeling for very long.

No doubt cpap is a tough ole road to haul, but if you go off it you'll feel even worse after only a few days once the sleep deprivation adds up. It can take a month or more just to get used to wearing the mask.

The next question is what is your current pressure?
What machine do you have?

Waking up at 3 or 4AM gasphing for breath as you describe it would indicate your pressure still isn't high enough either that or you have large leaks that are circumventing your therapy.

Simple answer is "yes" this can be difficult.
What pressure are you on?
What machine and mask did they give you.

Having something attached like an alien on your face is ... well ... alien! For most of us it just isn't normal.

I think you'll get resounding agreement on this one fact...
The mask is the key to your success.

The machine can be important to be sure, but getting a mask you can tolerate is the biggest obstacle I've seen for anyone new. I quit cpap myself because I just couldn't STAND the awful mask the DME gave me. It wasn't just uncomfortable or unnatural. The damn thing HURT! And they said, "You'll get used to it". I said, "How about I put a hot stick in your eye and see if you get used to that...given enough time?". They are no longer my DME. I don't have a DME. I found this place and cpap.com and I am now 100% compliant.

You may THINK you're sleeping better without it because you don't KNOW how you're breathing. I was so bad my WIFE wasn't sleeping well. Why? Because she had learned to sleep with her hand on my chest so she could SHAKE ME WHEN I STOPPED BREATHING! And I never knew I had stoped. I developed mysterious heart palpitations. PVCs. Test after test said I should be fine. Lack of regenerative sleep WILL catch up to you.

Plain and simple. Pulling no punches. Hoping like hell you don't get mad at me and that you're still listening... here are your choices:

Get equipment that works for you

or

resign yourself to a slow death.

Wanna know what's really sad? Wanna know why I am back on cpap? I couldn't STAND what it was doing to my wife. When I finally got with the program and decided that I would put forth the EFFORT to do whatever it took... I found this place and cpap.com, got better equipment, and can't believe I didn't do this years ago (that's right... years ... I was diagnosed in 2000).

Don't throw your life away because you're annoyed. Put your attention and your focus and your energy into finding out what part of this isn't working. Start with a good hard look at the mask.

I've been on these boards long enough to know that everyone on here is genuinely interested in helping you.

Please don't get dead.

Besides having an uncomfortable mask, another question is '
are you mouth breathing?'. Mouth breathing negates the usefulness of the cpap (in your nose, out your mouth, doesn't splint open your throat).
Please don't give up. Listen to Yardbird.

all the frustration is normal===a few weeks ago i posted about my aggravation and I was really lookng for a way out of using the cpap--I got a ton of encouragement and the best peice of advise was to "make the mask my friend" I did and except for last nite, the last 10 days have been wonderful---last nite i was very very anxious about my daughters oral surgery today and just couldnt sleep but keep plugging away because the difference really is amazing. And Im still struggling and looking for the right "fit".

Drasher,

Remember what I told you in that first post of yours?

Wulfman wrote:Whatever you do.....DON'T give up on your therapy!
(and do lots of reading here)

I still mean it.

From your description, it sounds like you may either be dealing with not enough or too much pressure to have to "catch your breath".

Nobody said that this was "easy". Any amount of time you spend sleeping with the mask on is better than without it.
You need to give us some information so we can TRY to help you.
OK?

Best wishes,

Den

Nobody said that this was "easy".

Actually, Den, some did say it was easy , which what makes it so hard for those of us who don't find it easy at all.

Yardbird said it so eloquently -

And as others said - we want to help you.

One of the reasons many of us stick around wanting to help is that we know how very very difficult it was in the beginning, and how much we were helped by others.

The mask has to be right, the pressure has to right, and for some of us it takes time to find both. And then we have to get used to sleeping like that.

O.

ozij wrote:

Nobody said that this was "easy".

The mask has to be right, the pressure has to right, and for some of us it takes time to find both. And then we have to get used to sleeping like that.

O.

One other thing, you mind has to be right, you have to accept that you will do anything to make it work, failure is not a option. Jim

Drasher, I've sent you a PM.

Sorry if this is a bit off the thread, but what are the chances of dying without treatment. I was diagnosed with approx 72 episodes per hour, 22 of them more than a minute that I quit breathing. I was wondering how much worse you could get before you died

Drasher, Yardbird said it all, I think........and anything he might have missed got said by others. I've not been 'on the hose' a long time, but I have learned to live with it.And.......can you die without treatment? Absolutely......and it takes it's time taking it's toll. Every time an apneic person sleeps without PAP, they come closer to that event.

guest123456, More than likely, you will suffer a stroke, or have a heart attack. Chances are that neither will kill you, but you might prefer that. Why even take a chance? You have very severe sleep apnea - and need to start therapy ASAP.

Yardbird, when that mask-pusher-of-a-DME told you.."you'll get use to it", your reply of "How about I poke a hot stick in your eye for you to get use to!" just cracked me up!!! I'm still chuckling this morning! I gonna save that response for the next time someone tells me to get used to something that I know is not right for me!
GETTING THE RIGHT MASK WILL MAKE OR BREAK CPAP USE !!! Granted, you have to give it a little time and often you have to make "adjustments" to accomodate your personal needs, but a person just knows when he or she is on the right mask path! Keep at it , Drasher! You will find what works for you! With all of the support here, you have lots of options!
Good Luck!

As always, thanks to those who have read my message and taken the time to reply.

Snoredog wrote:The next question is what is your current pressure?
What machine do you have?

I have a REMStar C-Flex Auto CPAP machine which is set to "auto". They did not show me anything about the pressure because the titration phase of the sleep study was a fiasco.

I have never noticed any leaks from the full face mask either before I go to sleep or when I awake.

yardbird wrote:Hoping like hell you don't get mad at me and that you're still listening...

No reason for me to be angry with you, your post is constructive. And, yes, I'm still listening... that's why I came into this forum.

yardbird wrote:I couldn't STAND what it was doing to my wife.

Well, that's about the same for me. My wife is very concerned about my sleep apnea. She also sees the anguish I am going through with the machine. I am waking in the middle of the night frustrated and upset. We can no longer engage in the "lights-out-'oh,-I-forgot'" conversations. No more kiss goodnight. (That's a bummer after 24 years tomorrow of kisses goodnight.)

Guest wrote:are you mouth breathing?

No, I don't think so.

Wulfman wrote: "catch your breath".

You need to give us some information so we can TRY to help you.
OK?

REMstar Pro 2 CPAP w/CFLEX Setting=10 CFlex=2

Maybe the term "catch my breath" was off the mark; but I do wake up with a "I gotta get this thing off my face" feeling.

I will try to provide the forum with any information I can...

The DME (which is part of the hospital staff) did not show me that changing the settings was possible except for the humidifier level. (I am also a little put out because the instructions that came with the machine are pretty crummy. I spent a few days at the beginning not using the equipment because I couldn't figure out what to do.)

ozij wrote:Actually, Den, some did say it was easy, which what makes it so hard for those of us who don't find it easy at all.

Yep, when I read that post "First two nights..", I got mighty discouraged... with "Why am I having so much trouble??"

GoofProof wrote:One other thing, you mind has to be right, you have to accept that you will do anything to make it work, failure is not a option.

Which is why I am going to give it another go... I was ready to return the equipment, but whis level of encouragement and support from the group is amazing...

Linda3032 wrote:Drasher, I've sent you a PM.

Sorry, I don't know what that is and I have not received a message. I have turned on my email address in my profile, please feel free to email me.

inacpapfog wrote:Yardbird, when that mask-pusher-of-a-DME told you.."you'll get use to it", your reply of "How about I poke a hot stick in your eye for you to get use to!" just cracked me up!!! I'm still chuckling this morning! I gonna save that response for the next time someone tells me to get used to something that I know is not right for me!

On a side note, I did ask the DME if she had ever tried a "night out with CPAP??" When she said "no" I told her that it might be benificial to try the "mask and blower" on her face for a night or two to see exactly what she was telling other people to put up with.

Thanks again for all the replies. Sorry this is so long-winded...

Not long-winded at all.

As far as that I-have-to-get-this-thing-off-my-face feeling...I'd have to say that's about par for the course. It's a foreign thing on your face that you aren't used to and in the middle of the night, if it's bothering you, then your instinct is simply, "This has to go away".

So... You have a REMStar auto with c-flex and heated humidifier. So do I! hehehe... I love this machine. Very often they'll send you home with this machine set at teh factory default pressure range of 4cm to 20cm and let the machine decide how much pressure to use. If it drops to 4cm that could very well be what's making you rip it off with a feeling like you can't get enough air. My titrated pressure is only 8cm and I found if I let my machine go below 6cm I feel like I'm trying to PULL the air out of it when I inhale. Like the machine isn't giving me enough volume of air.

So that leads us to trying to find out what your machine is set at. Easy way to do this might be to just call your DME and ask them. And if that bottom pressure number is at 4cm you may simply want to ask them if they could bump that up a couple notches. I'm fine at 6cm but can't tolerate 4cm and that difference would be barely noticeable to someone trying to just feel the pressure on their hand or something. But when we're talking about BREATHING... it's apparently noticeable as others have had similar comments.

As far as your pressures...you have a RIGHT TO KNOW as a patient, exactly how you're being treated. This doesn't mean you need to change things on your own or anything if you're not comfortable doing that. It simply means that there is absolutely no good, moral or ethical reason why they would withold that information.

Congrats on the approaching 24th anniversary. I just passed the 26 year mark myself. As far as the "kiss goodnight" or the "oh I forgot" conversations, there's nothing that says you need to put that mask on as soon as you get into bed. I usually go up and maybe watch the news. If I start to doze (usually suring a commercial) my wife will give me a little jab and let me know (usually because I snore loud enough to drown out the TV anyways). If I'm falling asleep then it's time to put my mask on. Well it goes on as easy as a baseball cap so it's no big deal.

Also... not sure if this has entered your mind or not, but I DID finally have a conversation with my wife about my concern that we'd miss out on some of those spontaneous romantic events. Like...wake up at night and she finds out I'm awake too and you snuggle and.... you know. As soon as I voiced my concern she answered with, "Well that mask can come off and you can push a button and turn that machine off pretty easily right?". So... that became a non-issue. Great to have her...just another rason why we've lasted 26 years and counting.

But let's get your pressure figured out. That's a big unknown right now and we're pretty much all guessing until we have that piece of the puzzle.