I want my life back....

[MoneyGal]

I am very lucky in that I took to CPAP therapy very readily. However, I did a TON of obsessive reading here in the period after my sleep study diagnosis and before I got my first machine.

Something that I read here made a huge difference for me: someone said they related to their CPAP machine as their safety blanket...that it was the thing that made them feel comfortable and secure at night, all night.

I decided that was how I was going to relate to my CPAP machine, as well. It wasn't that it was "true" for me - I was intimidated by the machine and terrified by my diagnosis. But I actually chose in the moment to develop a loving relationship with my machine.

I know that may sound goofy. But it really worked for me! I think how we frame things is very powerful. I am sending you lots of "keep at it" vibes. You CAN do this and when you get it working for you, you WILL have a different, better, healthier place to come from in life.

[kebsa]

i just wanted to encourage you to stick with it, as for envy of those of use who manage to adapt readily to the whole set up, don't forget that most of us have had one if not 2 sleep studies. one to dx and the other to titrate our settings and work out the mask type. you say that the mask seems like a good one but that the DME only spent a short time with you and was not much help- this says to me that they did not make sure that this good mask is a good choice for you and that by itself can cause a whole raft of problems! full face masks are the ones that they say are the choice for mouth breathers but they do not fit all face shapes well and are prone to getting leaks when you move. i am a mouth breather (or was) and a nasal mask and chin strap was a better option for me by a long shot.

i would also like to say that i agree that the machine you have is a great machine but without the starting point of a titration study you are behind the 8ball somewhat. I had a titration study of sorts but not with the type of machine i needed (i have a lot of central apneas due to a neurological condition) and the 1st machine i was trialed with gave me lousy results. so the next move the DME trialled as we could not contact my physician, was the machine you are using with a wide pressure setting like you and while i had had no problems using the first machine (just got crook results!) using this one with the wide settings was awful! i just seemed to fight the machine the whole time~once i was switched to a more appropriatte machine type but even more important at the correct settings- with the new machine at correct settings i have not looked back. i understand that this is of little comfort if you cannot have a study but it should say that this is not a lost cause, it will just take longer simply because you do not have a firm starting point!

try and be patient, it is going to be more trial and error to get to the right position and the best thing you can do is self educate as much as possible so that you can drive this with the support of you doctor (hopefully)

you will get through this, just make it one step at a time. first deal with the mask and mask leaks then move to the rest- at least that is what i would do
regards
karen

[cpnmikes]

My machine has the humidifier built into it, with a plastic tub that slides in and out to fill. There is a dial on top with 1 thru 5 they told me for humidity levels.. i keep it at 3.... i also bought that heated hose and since i keep my house cold at night, that made a huge difference for the air temp. Is there any way to know via the machine how much you used it for therapy the night before? that would help me to motivate. also yes whoever mentioned moving on their side and knocking the mask off.. thats what happens to me and im going to see if they can give me a smaller model from what im reading here it is usually a smaller size that fits better...

i tried the reading a book thing last night and did drift off to sleep, then i awoke at some point and the mask was laying beside me with the windstorm blowing out of it, so i put it back on but it was fairly close to daybreak, as i never fully got back to sleep, I believe... the water was empty and so i know it was blowing free for a while....

i never thought that bedtime and sleeping would ever become such a major part of my life.. i always said that you just never know whats around the corner!

[SharkBait]

My machine has the humidifier built into it, with a plastic tub that slides in and out to fill. There is a dial on top with 1 thru 5 they told me for humidity levels.. i keep it at 3.... i also bought that heated hose and since i keep my house cold at night, that made a huge difference for the air temp. Is there any way to know via the machine how much you used it for therapy the night before? that would help me to motivate. also yes whoever mentioned moving on their side and knocking the mask off.. thats what happens to me and im going to see if they can give me a smaller model from what im reading here it is usually a smaller size that fits better...

i tried the reading a book thing last night and did drift off to sleep, then i awoke at some point and the mask was laying beside me with the windstorm blowing out of it, so i put it back on but it was fairly close to daybreak, as i never fully got back to sleep, I believe... the water was empty and so i know it was blowing free for a while....

i never thought that bedtime and sleeping would ever become such a major part of my life.. i always said that you just never know whats around the corner!

Okay, you have a heated humidifier. Your equipment lists the passover, but yours is the same as mine... Not being picky, just making sure of what you had.

If you can take a picture of your mask and post it on something like photobucket and link to the image, someone can probably tell you what kind of mask you have.

Or go to Resmed.com and look at your different choices and you'll probably find it...

[cpnmikes]

good news

I went to the hospital today to take my machine back, fully expecting them to pull an old rusty piece of s**t off a pile of rejects in a back closet and sending me on my way with a set pressure and a machine more like a shopvac running in reverse. To my surprise they agreed with me that I dont have enough good data to actually get a pressure set, they gave me a liberty mask to try, and told me to take the same machine ive been using home and call them when i get some success so they can have a better idea where i am.. she said she doesnt care if its a month or two... and all this and ive never given them one cent toward the machine or treatment... and no insurance either

so I am taking back all the bad things i said about them,, I think i must have been there the first time on a bad day,, we all have them, as today there was a lot of back and forth, questions, she fitted the new mask to me and adjusted things.. was very positive experience.. so I am starting over now with all your advise taken to heart and im going to have much more luck now i am sure...

[Guest]

I've had the exact same problem. I was diagnosed almost 3 years ago and have probably used my machine less than 10 times before giving up. I've been feeling extremely tired the past month, so I am going to hook it up again tonight and give it another shot now that I found this site. I think having other people to talk to and hear stories will help me to keep trying and not give up like I have in the past.

I'm 26 years old, married with a husband and daughter who is 2. I have hated this machine since the day I got it, even though I know it will help me. Hopefully with the right support I can get past the beginning phase and start feeling like a living human instead of a zombie in the mornings.

[OutaSync]

Guest,

Please come back and register. We can help you through this. Your daughter needs you to be a fully functioning mom. I wish I had known I had apnea when my kids were younger. I didn't get diagnosed until well into my grandma years. And there are no "do-overs" in life. You are lucky to have been diagnosed early.

Welcome to the forum!!!

Bev

[SharkBait]

I've had the exact same problem. I was diagnosed almost 3 years ago and have probably used my machine less than 10 times before giving up. I've been feeling extremely tired the past month, so I am going to hook it up again tonight and give it another shot now that I found this site. I think having other people to talk to and hear stories will help me to keep trying and not give up like I have in the past.

I'm 26 years old, married with a husband and daughter who is 2. I have hated this machine since the day I got it, even though I know it will help me. Hopefully with the right support I can get past the beginning phase and start feeling like a living human instead of a zombie in the mornings.

The past is the past.

You have a 2 year old that needs her mommy so let's get your OSA treated so you can see her grow up and see her kids have kids. The younger you are the easier it is to slip into denial. Don't let that happen. No matter how you choose to rationalize it to yourself, fighting for breath all night is dangerous and it CAN kill you.

So, keep reading. Register, fill out your equipment list. And know that there are a lot of folks ready to help. But number one, you have to want help and be willing to help yourself. 10 times and chuck it ain't going to cut it as I'm sure you're well aware. Make up your mind you WILL comply with your therapy and failure is NOT an option.

There's a learning curve and you gotta find the mask that's right for you. But once that happens you'll join the masses on this board who put on their mask, sleep all night, and wake up refreshed in the morning having achieved level 3, 4, and REM sleep. It can be done.

[track]

I am amazed at how much trouble I had the first six months with a mask and leakage. Now I never seem to have any trouble. I just think it goes with the territory.

I have an apap machine but find I get better treatment putting it on cpap...as do many others so I wouldn't worry about not having an apap machine. However if you have a pressure of 14 or more I would definitely want some sort of exhalation relief on the machine...a or c flec.

[cpnmikes]

Just a quick update,,, last night I tried the RESMED Liberty mask, and im sure i had it adjusted wrong because i felt like someone was trying to shove telephone poles up my nose until i ripped it off and went back to my full face mask and finally got to sleep. I had a decent night last night after all that, but from now on i am going to log all the numbers off the machine control panel every morning so i know every morning how much therapy i actually got during that previous night. I got a user manual and a CD with the Liberty and im going to read it and see if i can adjust it better,and try again, but i can still feel the thing trying to enter my brain through my nose and its late the next day... anyway more for later...

I am very hopeful now that i feel i have some support both here and at the equipment company, its an impossible task to accomplish alone as its such an unfamiliar and anti-intuitive thing to try to do...

[BleepingBeauty]

Just a quick update,,, last night I tried the RESMED Liberty mask, and im sure i had it adjusted wrong because i felt like someone was trying to shove telephone poles up my nose until i ripped it off and went back to my full face mask and finally got to sleep.

One quick suggestion for you: Try to adjust your mask while you're laying down. My DME fitted me with a Swift II nasal mask while I was sitting up in a chair. The mask felt fine to me at the time, but I thought I would die from the pressure being exerted upwards on my nose when I laid down to go to sleep at home. I found myself ripping the mask off in the middle of the night, and my nose was sore for hours the next day. Adjusting the mask while in a prone position makes it far more comfortable to wear when you're actually sleeping (or trying to). Perhaps scrunch a pillow under your neck when you lay down so that your head is "floating" in the air and the straps are available for adjustment. Hope that helps.

I think the single most important thing re: getting used to this therapy is attitude. If you tell yourself this is necessary and focus on how much better you feel after a decent night's sleep (not to mention the damage your untreated OSA won't be doing), it'll go a long way towards making the adjustment to therapy easier. I was one of the lucky ones who took to it almost immediately. It took some time to get everything adjusted properly, and I'm still having some issues, 15 months into my therapy. But the benefits of being able to get some restful sleep are outstanding. It's well worth the effort we all have to make, no matter how long it takes.

Good luck!

[birdshell]

You may want to try larger nasal pillows. It is common to need a larger size in order to get a better seal.

It also sounds as if you may have the top strap too tight. One good way to fit any mask is to put it on and lie down before adjusting the straps. I wonder if you are tightening the strap too much to compensate for the leaking of the nasal pillows?

I found that using the leg from a pair of pantyhose tied just under the outcropping of the nasal pillows really helped with the seal. I tied the leg in a flat knot behind my head, using a triple version (3 flips of the end around the other end) due to the thinner pantyhose leg. Of course, I put the mask on and adjusted the straps first.

I hope you get your mask to work. I really loved the Liberty. It is a great mask IF you can find a good fit! No mask is worth a darn if you cannot prevent the leaks and be comfortable.

Karen,
Who still misses her Liberty