Tired of CPAP!!

[mermer40]

B I can sympathize with your feelings of "hate" for this nightly procedure...I've been doing CPAP for just a little over five months and have been reading this forum for six months. The people here have helped me so much more than my docs and the information here is so valuable and "free"!!! I have to get up five to eight times a night to pee and my sleep doc seems to think that is a major problem so he sends me to a urologist who does a sonogram of my bladder and also thinks I have a major problem...he gives me meds that make me pee more and one that crashed my BP (usually as high as the moon) to the bottom of the pit...so after a month he has stopped all the new meds and is sending me to a nephrologist! Seems like every time I go to a doc I get a new doc! I rarely sleep for two hours straight at a time and rarely get over six hours a night total fragmented sleep, but I hate the mask so much that I have to wait until midnight or later when I'm veeeerrrry tired to crawl in bed and hose up. I have "severe" sleep apnea so the docs all tell me that without it I probably wouldn't wake up pretty soon. I'm old enough to die but not ready for that yet, so I'm going to keep trying to make the adjustment to this treatment and hope for a long and fruitful life enjoying my grandkids and other things I'm not willing to give up yet. I have lived long enough to learn that the only thing in this life that really pays off is PERSISTANCE! So, I say look for the good things the treatment can give you and keep trying to get a positive attitude...It's gotta get better, if it can't get any worse!!

[Captain_Midnight]

Anyone else just tired of sleeping with their mask?

[Chuckle]

It is just the opposite with me. I quickly reached a stage at which I'm not comfortable without my trusty UltraMirage. Talk about Pavlovian responses, I need only pick up the darned thing at night, and I begin yawning.

Like almost everyone, I hated it at first. When I opened my mouth, Hurricane Rita roared into my nasal passages, and out my mouth. Who can sleep with that?

I did not care for the odd feelings of the straps, getting up at night and re-clipping it on, looking like Darth Vader... these irritants will add up.

I should say at this point that I really only wanted the xPAP for a short duration, until I landed upon a surgical procedure that would fix everything.

Then however, a few weeks into the journey, I realized that the contraption wasn't really that bad. I had also figured out that perseverance, giving the heave-ho to any notion of self-pity, and a sense of humor are key elements to xPAP success.

A few weeks more, and I found myself liking it. (Mind you, I had no intention of liking this awkward mask and goofy machine) And, I would feel unready for sleep if Mr Mask wasn't there.

Now, 4.5 years later, I would not dream of changing a thing. I'm healthier and happier than I've ever been, and I've added who knows how many years to my presence on the planet.

The xPAP and mask are but a teensy price to pay for such a good life.

Good luck in adjusting to your equipment, my friend. Perhaps you will eventually agree with me that you are most lucky to have it.


.

[illinigal]

bworthey, I am sorry for your frustration and discouragement, many of us have been there and still hit some pretty big bumps after months of therapy. And yes, I am tired of masking up. I agree with you and some of the comments by other posters..I want to just go to bed, I want to just go through a line at the airport without taking everything out and having to repack it. I was one of those who put my ID in one pocket, a small change purse with a little cash and credit card in the other and got on the plane. I never, until I went on cpap had any thing bigger than a paperback book to keep track of. I am always a little nervous now when I fly, afraid I will walk off and leave my cpap sitting somewhere. I am fortunate to have a great family doctor , a great DME and sleep doc who work together, but it doesn't take away the frustration of a certain pressure or mask only working for 3-4 months. My medical team always seems to find a fix for the problem, but the frusrations are still there and the aggravation of one more day off of work to make my trip to the doc, and the 2-3 day adjustment to the new pressure is still a bother and annoyance. When a change is made I actually dread going to bed, of course after I adjust to the new routine I enjoy my new rested feelings, until I come to the next hitch. I want to be able to bask in the sun in my hammock without being afraid of falling a sleep, and I could go on for a long time with my frustrations, but the bottom line is I have never given up and I don't want you or anyone else to either.

In defense of you, I do not recall or see you saying you wanted to quit cpap, just that you were tired of the routine and frustration and wanted to know if anyone else felt that way. You may have asked advice in previous post, but for now you were venting..that is my take anyway. I have a big poster in my office of Ziggy the cartoon character looking at a list entitled..THINGS TO DO TODAY..1. PICK YOURSELF UP 2. BRUSH YOURSELF OFF 3. START ALL OVER AGAIN..
In the case of us hoseheads it is //1. LAY YOURSELF DOWN 2. HOSE YOURSELF UP 3. START ALL OVER AGAIN !!!
(I wonder if anyone can mask Ziggy? I love that little guy !!! ) So there is no great advice in this post..just offering you a little understanding ..and read the responses, there may that one piece of advice lurking in one of them that is just the thing you need ! It is not the not wanting to mask up that hurts, it is the NOT masking up at all that hurts !!!!!

[Paul56]

Well, after about of year of sleeping with it on all night, I have a new issue. I'm simply tired of sleeping with my mask every night! Has anyone else done this? I know I'm sort of in a catch-22. Can't sleep with it, can't sleep without it! I'm just tired of thinking everynight when I get in the bed, I have to have this thing on.

I don't mean this to sound negative or bad, but "I'm simply tired of sleeping with my mask" sounds like an attitude issue more than anything else.

I'm not sure how much any of us can help you with the attitude; however, it does seem that you realize you need the therapy but would love to go back to the "good old" days when you simply jumped into bed and that was it.

I'm sure all of us would like to do that but each of us has come to terms and accept this new way of sleeping in our own way. What makes it easier for me to accept is how much better I feel and the knowledge that I am avoiding serious medical issues further down the road.

Try to accept the equipment and mask rather than develop a hate relationship with it. If you have mask issues, perhaps uncomfortable or a high leak rate, work to get those resolved. There is no greater motivation to stop using the equipment than an uncomfortable mask.

Wishing you good luck in your journey!

[bworthey]

I realize that I haven't been back here to read/reply like I'd like. No, no one scared me off. Things been really busy here.

I don't know what to say really. Maybe it is just a "attitude" thing, as someone put it. Was I looking for help? I don't know, maybe just some understanding that other people have experienced the same, or similar, frustrations, and how you got through it. I know none of you know me personally, but the attitude of "just do it, just because" is something that, well, I don't do well with. Maybe that's where my frustrations lie, is that this is something that I HAVE to do and I hate that situation. Like I said in my original post, not that long ago, I was right where some of you are...I had gotten used to my mask and couldn't sleep without it, and things were fine. I did feel like things were going good. Then, I don't know what happened...if it was a technical issue or if it was just an attitude issue that I've realized now I HAVE to wear this thing to just sleep. I can't take a nap in the recliner because my snoring/apneas will wake me up, no, I have to get in the bed and put my mask on.

Like I said, it may very well be an equipment issue, and I do plan to go back to a sleep doctor when my insurance kicks in. But now that I've moved, I just gotta find a new one now! Lately I've been finding myself waking up with my mask off, or at least pushed half way up my face! I have a nice mark right above my eye where I've ended up sleeping face down and laying on the mask the wrong way. It's nice! Oh, well....I've spilled enough here!

Thanks again.

[ricochetv1]

I realize that I haven't been back here to read/reply like I'd like. No, no one scared me off. Things been really busy here.

I don't know what to say really. Maybe it is just a "attitude" thing, as someone put it. Was I looking for help? I don't know, maybe just some understanding that other people have experienced the same, or similar, frustrations, and how you got through it. I know none of you know me personally, but the attitude of "just do it, just because" is something that, well, I don't do well with. Maybe that's where my frustrations lie, is that this is something that I HAVE to do and I hate that situation. Like I said in my original post, not that long ago, I was right where some of you are...I had gotten used to my mask and couldn't sleep without it, and things were fine. I did feel like things were going good. Then, I don't know what happened...if it was a technical issue or if it was just an attitude issue that I've realized now I HAVE to wear this thing to just sleep. I can't take a nap in the recliner because my snoring/apneas will wake me up, no, I have to get in the bed and put my mask on.

Like I said, it may very well be an equipment issue, and I do plan to go back to a sleep doctor when my insurance kicks in. But now that I've moved, I just gotta find a new one now! Lately I've been finding myself waking up with my mask off, or at least pushed half way up my face! I have a nice mark right above my eye where I've ended up sleeping face down and laying on the mask the wrong way. It's nice! Oh, well....I've spilled enough here!

Thanks again.

Face it, man... you spoiled yourself with good sleep. And the fact that you have to use external peripherals to achieve it is a major annoyance. Not to mention the extra expense of maintaining the equipment, etc...
It sucks. It's not fair. Having to argue with doctors, fight corrupt DMEs, and subject your SO to the mumblings of the hose is unjust.
Personally, though, it all comes down to what you want more. Decent health, or the freedom of not needing the CPAP. Personally, I've chosen to take the improved health. Currently, I'm fighting my weight, high blood pressure and cholesterol, daytime sleepiness, low energy, etc. I don't want to fight those. I want them to go away. If I have to use a machine to do it, then I will. I decided that I can no longer live like this, and when I found out via my sleep study that my O2 saturation was going down to 71%, where much lower and I'd have a freakin' stroke, that was a major wake-up call for me. I have a 2 month old son. He deserves to have his father around. My wife deserves to have me around, and functional. I do not want to be a burden on them, too tired or sick to do anything, or being dead.
You have to choose for yourself which you desire more, and resolve to do what it takes to keep it.

[SleepyT]

bworthey,
maybe you're not so much frustrated as angry. maybe it's dawning on you CPAP is forever. could be an early mid-life crisis.....seems I recall having one at about your age (planning to have another at 50! ) wearing the mask is certainly not sexy...i believe it was blackspinner who said something about grief...a lost youth.

i hope you figure out what's bothering you. i'm sure you've already prayed about it. but try to make a list of the things you're grateful for. it's really hard to see the glass half full sometimes. let us know how you manage to get through it.

t.

[roster]

....... I can't take a nap in the recliner because my snoring/apneas will wake me up, no, I have to get in the bed and put my mask on.

.......

Not on the beach,
Not in the car,
Not in the office,
Not on the train,
Not under the shade tree,
Not on the plane,
Not in church,
Not in the lounge,
Not by the pool,
Not in the grass,
Not under the desk,
Not on the desk,
Not on the beanbag,
Not on the john,
Not on a bench,
Not in Borders,
Not in your lover's arms,
Not in the hotel lobby,
Not on the subway,
Not in class,
Not on a steam grate,
Not on a calf,
Not in the park,
Not on the roof,
Not in the boiler room,
Not under the bridge,
Not at a friend's,
Not at a party,
Not on the beach,
Not on the beach,
Not on the beach.

[BlueHairBob]

My solution is not going to help many, but it works for me - I thrive on change. If I can't stand putting on my mask after a while, I get a new mask - or try aroma therapy - or get mask cleaning wipes that smell a little different - or get a whole new machine. I am not the most successful CPAP patient, but I drive myself forward by continuing to change things that aren't quite working yet. Tonight, I get to try out a new machine and entirely new tracking software - just think of the exciting manuals i get to read and highlight in different colors! Like I said, my solution probably sounds crazy to a lot of people, but it works for me.

[SleepyT]

rooster,
you're friggin' hilarious!
t.

[4boymom]

I am new so please don't shoot me down....but I am considering surgery and all this does is push me in that direction....if everyone is so tired of putting on their mask, cleaning it etc...I don't understand why more people don't try surgery. I talked to my surgeon about the success rates and he explained them to me. The only way they rate it a success is if they get your apneas under 5, that is why the percentages are so low but if you have say 19 like I do and he can get them down to 7 that is a success in his mind because I will feel so much better. In my case surgery seems to make sense but I am still weighing my options. I have gotten two opinions and they both put me in the 90% success range. Why wouldn't I try that rather than be stuck to a hose the rest of my life? I have only posted twice once asking about surgery and no one here wants to talk about other options.

[Wulfman]

I am new so please don't shoot me down....but I am considering surgery and all this does is push me in that direction....if everyone is so tired of putting on their mask, cleaning it etc...I don't understand why more people don't try surgery. I talked to my surgeon about the success rates and he explained them to me. The only way they rate it a success is if they get your apneas under 5, that is why the percentages are so low but if you have say 19 like I do and he can get them down to 7 that is a success in his mind because I will feel so much better. In my case surgery seems to make sense but I am still weighing my options. I have gotten two opinions and they both put me in the 90% success range. Why wouldn't I try that rather than be stuck to a hose the rest of my life? I have only posted twice once asking about surgery and no one here wants to talk about other options.

If you're talking about "UPPP" surgery........go up to the Search line and type that in and start reading.
It won't "cure" sleep apnea and after a few months, you'll still have to use this therapy......and probably at higher pressures than you had before.

Most of those who have had it done, thinking they could avoid CPAP therapy (or were talked into it by some money-grubbing ENT) subsequently wish they had NOT had the procedure done to begin with.


Den

[jdm2857]

Which procedure has been recommended to you? There are several different surgeries that have different success rates

[sleepless4boymom]

There are about 6 numbers on my sheet but I know it includes the uppp, tonsils and deviated septum. It doesn't name them

[DoriC]

4Boy, I don't think everyone here said they're tired of the routine, most welcome the restorative sleep they can look forward to and the good health and renewed energy they will feel the next day. In my husband's case, we were so happy to hear that there was a "fix" for his declining health and quality of life. So many Drs have to tell patients there is nothing that can be done for them. I guess it's a case of looking at life as a glass half empty of half full. It think most here choose the latter.