On the verge of Quitting

I've been on CPAP now for about 4 weeks with Airsense10.

First, let me say that I'm not getting any help from Doctor or supplier (LinCare). I could sooner get to talk to the POTUS than my doctor anytime soon. Also upset that I've been given this machine and told almost notion about it or my condition. Yes, I did get a copy of my report but its technical terms meant little to me. I recall that my apnea rating was something like 51 (borderline, they said).

After complaining to Lincare, they said they'd get with doctor and try to resolve my problems. That was 2 weeks ago and I've heard nothing.

Now, to my problems. I can't sleep with this contraption blowing a hurricane on my face. I wake up numerous times with wind shrieking out the mask, tongue stuck to the roof of my mouth OR I wake up with mask ripped off and on the floor. I haven't got more than 4 hrs of interrupted sleep in more than a month. Suffering sleep deprivation. 4 - 6 wakeups/night.

With pressures of 8- 11 that is more than I can bear. I find it incredible that anyone could sleep this way.

I came here looking for answers but frankly I don't get the lingo and can't get past the extensive use of acronyms.

It appears to me that I need weeks of intensive study, and I just do not have the time to become an expert on this "therapy."

I am concluding that the cure is worse than the disease, after giving it plenty of time and effort to adjust.

BTW, I"ve not experienced any benefit to date.

My basic problem: excessive sleepiness during the day ( may be caused by medications and not apnea but CPAP hasn't helped in finding out).

I'm eight weeks in and my experience is very similar to yours. Is the cure worse than the disease? I was wondering the same. The first couple weeks I was so wrapped around the axle. Then I found this web site and just started reading. It's all here. Every question you may have, every fear, every doubt. Just keep reading. It settled me out, gave me confidence that it will work. Yeah, I still rip that thing off my nose every now and again, but it's going to work. Keep reading...P.S. I can only offer words of encouragement. The more experienced folks can answer the technical details.

Hi and welcome... how lousy that no one's explained anything to you or helped you with equipment and info! It's certainly not supposed to be that hard or uncomfortable and with help - there are terrific and knowledgable people here - you can definitely do a lot better!

The first thing to do so we can help is to get from your MD's office a copy of your study results (yours by law), because "51" is not borderline anything (unless you meant to type 5.1(?), but definitely up there in terms of severity. Second thing though is that the ''severity' of your diagnosis does not necessarily relate to how high or low your pressure settings would be because they apply to how much air is needed to keep your individual airway open, not how bad your apnea is, though settings of 8 and 11 are fairly typical.

I think half your problems are about the mask - also very typical, and if you've been given one arbitrarily without proper sizing or fitting, then things won't go well. There are so many masks out there and it's standard to have to try different ones til you get the 'right' one, but that also doesn't have to be a mountain to get over. And did no one explain the ramp feature? The one where you set the machine to gradually increase pressure til your prescribed one's reached and you ideally are already asleep by then? Most of us actually don't bother with it unless scripted pressure is quite a bit higher than yours, but if you're using the wrong mask (so far) the 'blast' of air could be hard to deal with.

The dryness is usually from mouth breathing or leaks, again a mask issue and one than can be fixed. What mask are you using?

Don't sweat the tech terms - there aren't a lot that you need to know right now, but what's important is to get you set up properly and having your info will help us to do that for you. Please don't give up yet as you do need the treatment and you can do a lot better than you've been doing. Please come back to this thread rather than start a new one, so we can follow your history as things go along. Any questions you have will get answered.

Hard to tell what's going on without knowing either what equipment you're using, or being able to look at your sleep data. But if your pressures are 8-11, and you feel a "hurricane", you're getting a lot of major leaks from your mask, and your cpap is working overtime to maintain the pressure. That's my guess from what you've written here. I could suggest that your mask isn't fitting right, so its leaking a lot. Maybe the wrong size, or the wrong shape for your face. There are lots of full face masks out there, and each one will fit you differently. One thing that you can do is try a mask liner (like from padacheek.com) to try to handle leaks, but again, it's hard to tell what's going on without more information. If you could focus on reading the postings that talk about how to post your sleep data, then you could get some help looking at your leak data, etc. Also, if you go to youtube and look for videos for fitting your mask by the mask model, that's also helpful.

My pressure is 11-15, and I don't have the hurricane effect. Of course, I'm using a nasal pillow mask, so the air is blown directly up my nose *smile*, rather than on my face. When I get leaks, I can get the effect of lots of air being blown on my face, loud noise, and of course, as a result I get awakened. Generally for me, I can just jiggle the nasal pillow around to reseat it, and it stops leaking. If my mask is fitted and adjusted right, this hardly ever happens.

I'd suggest going into the "User Control Panel" (click on "User Control Panel" just below the search widget in the upper lefthand corner of the posting page that you're looking at right now) and setting up your cpap machine and mask in the profile "Equipment" tab. Then your cpap machine model and mask model will show up in your postings. Once the model is known, we can tell if you have a cpap where sleep data is collected and can be looked at.

Also, you might give some thought to whether you could use a nasal or nasal pillow mask instead of a full face mask. Either of those two are generally easier to manage leaks with than a full face mask, but you have to keep your mouth closed when you sleep to be able to use those masks. If you need to use a full face mask, then I'd suggest trying a liner with your current mask if it fits well enough for that. And try other full face masks and see if you can't find one that fits you better. A good fitting mask should be able to be comfortable (not too tight, no squishing or pain allowed *smile*), and it shouldn't leak when it is properly fitted.

blownaway,

I totally agree with what Julie and Roger have written. This site has a very long history of helping posters like you optimize their therapy. It may seem discouraging right now but hang in there, it will get better.

49er

I myself was about to quit, found this site and learned a $hit ton, sorry to be blunt. I even learned I had complex/central apnea and well now I have a machine that works for the apnea I have and am starting to be doing well, feeling well slowly, it did not happen overnight, the fix isn't over night..... Hang in there everyone or someone will help u along.

Get a copy of your Sleep test (as Julie said) and put your equipment in the control panel section (User Control Panel - top left hand side of this page). You need to train yourself to get used to wearing the mask all night. But first, it needs to be a comfortable mask that doesn't leak. You might need to go thru a few different masks until you find one that you like. Trust us! This ain't our first rodeo! There have been people that have successfully come thru here like you, have enjoyed the treatment, being healthy, living longer and most of all.... feeling much better during the day. You cooperate with us and we'll get you thru this. Work every issue here. Ok?

Sheriff

It may seem overcoming, but everyone has had "growing pains" and each one is solvable. I agree the first one to address is the prescription from the doctor, you'll need that to start finding a mask - until you can control your leaks, nothing else will work. Go to one of the web sites that carries cpap supplies, like cpap.com, and look at all the types of masks, there are nasal pillows, which go into the nose itself, nasal masks, which fit around the nose and sit on the upper lip, and full face masks, which go around the whole nose and mouth. Pick one which looks interesting, and pay for the return insurance so you aren't stuck with it.

blownaway wrote:I just do not have the time to become an expert on this "therapy."

He not busy being born
Is busy dying.
-Bob Dylan

carbonman wrote:

blownaway wrote:I just do not have the time to become an expert on this "therapy."

He not busy being born
Is busy dying.
-Bob Dylan

A little bit harsh Carbonman, particularly when blownaway is already overwhelmed? Wouldn't a better way be to explain to him/her why they should become an expert on the therapy and how empowered they will feel from doing so?

49er

blownaway wrote: It appears to me that I need weeks of intensive study, and I just do not have the time to become an expert on this "therapy."

blownaway,

I realize that dealing with everything as a newbie is quite overwhelming, especially when your therapy is not optimized. But please take the time to study the thread on using Sleepyhead at the top of this page. Take it as slow as you need to but doing so will pay off big time. If you have questions, just ask, as that is what we are here for.

49er

49er wrote:

carbonman wrote:

blownaway wrote:I just do not have the time to become an expert on this "therapy."

He not busy being born
Is busy dying.
-Bob Dylan

A little bit harsh Carbonman,

49er

OSA is a harsh, cruel reality. The sooner you "get it"........
if you ever do, the better.

I was whining and crying "poor me, poor me"
until someone gave me a 2x4 upside the head....and I "got it."
I will never forget that person. I will always be grateful to them.

carbonman wrote: He not busy being born
Is busy dying.
-Bob Dylan

........oh, it doesn't just apply to OSA newbies....
it applies to life in general.

"harsh, cruel" ??

Oh get real!

Please don't quit. You are frustrated and that is VERY understandable. Everyone here, and I mean everyone, world wide, has had, is having or will have the very same frustrations you are going through.

I am in month three. The first month, I didn't know ANYTHING about ANYTHING. I took the first step, as you did, and got on the computer and found this website. You (and I) fell into the shit pile and came up smelling light roses.

As others have said, get a copy of your report. Let those here who are the experts review the numbers. They can (and will ) help you get your machine settings set up. You are the master of your treatment.

Post your machine and mask. I started with a full face mask (FFM) and had serious issues with leaks, itchy nose, dry mouth etc. I never had a full nights sleep with a FFM and the most I had was 4 hours once in 30 days. Despite serious misgivings I switched to a mask called a Nasal Pillow (or Pillow for short) mask that only applies pressure through the nose. I use a chin strap (very loose now) to keep my mouth shut. My pressures are 9 on the low to 13 max. Right now I average every night a pressure of 9.5 to 10.5 with a max peak pressure of 12.5. I sleep 8 - 9 hours every night. I am on the road to a full recovery and so can you. All in all I have used 5 different masks until I found the right one for me. EVERYONE IS DIFFERENT. There are people here that will sell you, give you, loan you EVERYTHING you need to get set up and sleeping healthy.

Please stick with it. The disease is much much worse than the cure. The cure (if you accept the fact that you NEED the cure) will allow you to rest well, wake up with energy and never EVER feel like shit again from a poor nights sleep. One day you will go to bed, and be anxious to put on your sleep gear, and be asleep in 5 minutes and wake up the next day and say WOW, I made it.

Work for it, and you will get it.

Good luck and please keep posting and reading. It will help out immensely.