Can't do this anymore! Need some help

[Beyond tired]

I have been having extreme difficulties with my CPAP therapy. The intial few weeks were good, felt the results (more awake, more energy, didn't struggle as much to wake up) but that was very short lived. Not long after I wasn't feeling as refreshed or awake but this wasn't a big deal, I continued using my CPAP. Fast forward a few months later and I haven't touched the thing in a long time. There is good reason for this however, I didn't just quit because I didn't like it. Obviously I didn't enjoy it but I was persistant and patient with the treatment. Things got in my way though, so much so that I felt I was better off without the CPAP.
 
This brings me to today, I am now ready to try again, I want to treat my OSA badly. I am tired, and I am sick and tired of being well... tired. It's really starting to bring me down in a big way, I'm sick of feeling exhausted and sick of having no energy. I still live my life to the fullest though, I force myself to exercise and eat well and get to work and do my job well. This is all fine and dandy, but I still want to be using that CPAP machine I'm paying $100 a month for, for the next 2 years of my student life.
 
The problems I have with my CPAP is what you're probably wondering now. Man, they are bizarre, and beyond frustrating. I don't know what to do, I'm so frustrated it's not even funny. To make this short (because I clearly ramble) the biggest problem I suppose is that anytime I use the CPAP , the mask NEVER stays on. I am not exaggerating. It NEVER stays on all night. I cannot control that I take this off in my sleep and the only time I know I've done this is when my alarm goes off in the morning. Frustrating. I do my part in using the thing but it just won't stay on. This isn't just a "it only happens for the first while" this has happened for months.
 
The second problem and the most disturbing and scary, whatever you want to call it is that when I use my CPAP I do the most strange things in my sleep. Last night for instance I woke up (I say "woke" up but I was still half sleeping, literally) and I had my mask off, in my hands, blowing in my face and I was trying to take it apart or do something, I never know. This is not a one time thing. If I don't remove it myself during sleep, this is what I wake up doing. I have woken up sleep walking in my room doing the most strange things when using my mask, looking under my matress, under my pillow, whatever it may be.  This makes me extremely hard to want to use the machine, which is why I stopped using it for so long. Then I decide to use it again last night and I still wake up doing odd things in my sleep. Why would I want to continue using this when I know that when I don't use it, I sleep through the night well enough (not perfect, but 100x better)
 
The last thing I wanted to quickly mention, which probably deservers it's on thread is that when I fall asleep I notice I vibrate. I am not sure what this is, some people have believed it to be anxiety related, or OSA related, etc, etc. Can anyone shed light on this?
 
Sorry for the rant, but this is months and months of frustration. I can't take it anymore. I need restful sleep, just for ONE night, a restful sleep. I feel like I'm too young for all this to be going on.
 
THANK YOU for reading this far.

[Beyond tired]

I should mention I am not really looking for answers here, moreso some sort of opinion. What would you do? My sleep therapist might be able to help, but with what? The problem must be that I am not sleeping sound enough which makes me "sleep walk" or wake up during sleep and take my mask off, or wake up playing with it, which seems more like I'm trying to break it. It's the most bizarre thing.
 
Would a sleeping pill or sleep enhancer help in making sure I stay asleep, this would keep the mask on I'd hope, or maybe stop me from my sleep walking bouts.
 
The last thing is the body vibrating, which is somewhat new. I can't tell what this is from, but I have read people say it could be from OSA. The weird thing is is that I had body vibrations last night when I had my mask on. They seemed worse than when the mask is off, but that could just be coincidence. It makes it really hard to fall asleep, but once I do fall asleep the vibrating doesn't seem to come back, it just happens moreso while I'm drifting off, going in and out. This is all speculation however.

[XSnorer]

Well, you certainly have at least 2 positives to note in your post....

First, unlike a others who give up and can't get re-motivated, you seem fired up to start anew.

Secondly, you don't seem to have any issues with the machine itself. Or at least you did not note any. Your issues seem to be focused on the mask & hose - getting in the way, coming off, etc.

The mask is the man to machine connection point - a/the key component of therapy. Have you tried different masks? There are an abundance of choices out there and most DME suppliers will allow for a 30 day trial period.

You said that for the first several weeks the results were great. Do you know of any reason why you would not return to the success you've already experienced during your first several weeks?

[Uncle_Bob]

As far as the mask removal goes its common to remove it at first but that should subside after a while. It would help if you told us what mask you are using, there are a bunch of people here with lots of fitting tips. Have you tried to get used to the mask by wearing it during the day while watching TV or listening to music? Did your mask come with a fitting guide or DVD? If so read or watch it and repeat that several times.

Some peole physically tape the mask straps to their skin so that they definately get woken up when they remove it. Also what kind of machine do you have? It may have a mask alert feature which may help wake you up completely when you remove the mask.

i do recommend signing up here and filling out your equipement profile etc so people are better able to help you. You may have some comfort features available on your machine that you are not using etc.

As far as the body vibrations go, please see your doctor.

Finally i think $100 a month for 2 years is way too much for a machine. If you have an Rx then you could purchase one on line at less than half the cost.

Cheers
UB

[Julie]

Hi, just a bit curious about your not wanting answers, just opinions. Can't quite figure that out .

[Beyond tired]

Thanks for such quick responses.
 
I am definitely interested in getting proper therapy, but I just can't seem to go a night without any mishaps. If I could just sleep all night, without interruption or without taking the mask off I'd be a very happy man!
 
I'll create an account when I get home, I am currently at work on my iPhone.
 
But to quickly answer some questions:
 
I have tried a FFM with no luck, too many leaks. Sleep therapist said my face wasn't really FFM friendly, so I stuck with what has worked. It's a Respironics Easylife Nasal Mask (I'll get the specifics once I'm home) I honestly don't have many complaints with the mask, but maybe I do while I sleep. It is somewhat hard to side sleep but I can adjust. Other than that, the mask fits well, is adjusted well, seals, etc, etc. I don't think it's the issue. However, I would love to try a nasal pillow mask, seeing as I'm already using nasal and have a chin strap. It might be less invasive, something to consider anyways. But as I said, I am very comforatable with my current mask, it is adjusted and seated well.
 
Honestly I am not sure why my success went downhill, all of the above mentioned problems started occurring. The first two weeks I just slept with it on (the odd time it came off) but recently for months it always comes off.
 
As for taping the mask on my face, I suppose that's an option. Just seems like so much work to go through before bed? I use a Respironics System One M series (I'll get all the specifics at home) There is no mask alert feature that I am aware of.
 
And when I said I'm not looking for answers I moreso meant I'm not here hoping someone to instantly know why these things are happening to me, but to offer some insight. Bad choice of words.
 
I think I got 4 hours of CPAP last night which is better than none... but that entire time was far from sound sleep. Half asleep waking up "playing" with the mask, the body vibrations before I initially dozed off, etc, etc. I'll stick with it for now but if I don't get to see someone soon I'll just end up giving up like I did before, which I don't want to happen. I suppose bottom line for NOW is suck it up and use it because it's better than the alternative

[Julie]

If you only tried out one FF mask, in one size, that does not mean others won't be better for you. Get them to try you on different ones, in diff. sizes, preferably lying down someplace, and having adjustments made to the headgear and whatever else might be adjustable while you're trying them. There's no sense in writing off all FF masks because one didn't work for you off the bat.

I obviously can't know what the 'vibrations' are about, but I definitely suggest an appt. with a neurologist who's familiar with sleep problems - there are a lot related to, but different from OSA, and something could be coincidental with it, or fighting it for whatever reasons, and a neuro. would be more 'up' on such things than a pulmonologist or GP.

[Ichabod]

I wish I could offer some help... but you frighten me... I would truly ask your Dr about the odd behavior.

[Willtry]

I obviously can't know what the 'vibrations' are about

Is it possible that the vibrations are from a badly fitting mask and what you think are vibrations is air escaping around the silicon seal..

Just like blowing a raspberry with your lips it is a vibration

Where does the vibration feel it is coming from eg around the mouth, nose, or cheeks

Also if the pressure is too high it can stimulate the brain to cause more events and other strange things to happen.

“The information about High pressure was supplied to me by My Sleep Doctor and confirmed by the Clinical sleep Technician."

DO NOT GIVE UP you have friends here to help and support you.

[Beyond tired]

How do I frighten you? Because of odd behavior in my sleep?

It's no more "odd" than someone who sleep walks. The only reason this "odd" behavior happens is because of my CPAP. Perhaps it does have something to do with the oxygen being pushed down my airways. I know from looking at my machine that my prescribed pressure is 12 but when using the auto feature I usually hit 10-11. I'm sure I've gotten to 12 in the past.

The vibration is actually a body thing, and it's not like a cell phone vibrate but like little shakes. It's not really scary or frightening, just more so concerning. I hope it's nothing serious, but I believe this only happens when I am going from awake to asleep, during the "dozing off" period. Once I go out I don't awaken with any shaking, so this leads me to believe it's something happening while I fall asleep. Perhaps it's my nerves and muscles relaxing while I fall asleep. Either way, I do have a doctor's appointment this Thursday and will ask then to discuss this "odd" behavior.

I don't believe my mask is the issue, as I haven't ever had a problem with it (aside from not being able to side sleep) which I am becoming more and more adjusted to. Other than that, I don't have problems with leaks, comfort, adjustments, etc. The reason we stopped using full face masks is because the nasal one had worked so well, and I got used to nose breathing no problem. There was no need to go back to the FFM because of this. It's not that I or we gave up on them!

Hopefully tonight brings a better sleep. It sucks not having much control over these issues, especially the waking up and trying to pry my mask apart! It sounds somewhat funny to type it out, but when it happens it's a little scary but it's happened so many times now that I just wake up and chuckle. It's all I can do aside from feel sad

[robysue]

How do I frighten you? Because of odd behavior in my sleep?

It's no more "odd" than someone who sleep walks. The only reason this "odd" behavior happens is because of my CPAP. Perhaps it does have something to do with the oxygen being pushed down my airways. I know from looking at my machine that my prescribed pressure is 12 but when using the auto feature I usually hit 10-11. I'm sure I've gotten to 12 in the past.

Recurrent sleepwalking is not normal behavior. Since yours only happens when you are using your CPAP, you really should talk to the doctor about the CPAP-related sleep walking at your appointment on Thursday as well as the vibration thing.

[Beyond tired]

I know it's not normal. Sorry, it kind of made me mad when someone says "you frighten me" It's not my fault, I can't control this.

I've got a lot to address on Thursday, but I think this will be an appointment for the sleep therapist. Even if I can take some melatonin to stay asleep or something, it would be nice to see if it helps. Otherwise I am not sure what my sleep therapist is going to suggest. Why can't I just get normal treatment? It took me so long to get up the courage to get a sleep study because I knew I had OSA, then build up the courage to adjust to this new way of sleeping and I still can't catch a break. I am very frustrated and beyond tired.

[robysue]

I know it's not normal. Sorry, it kind of made me mad when someone says "you frighten me" It's not my fault, I can't control this.

I can see your point and can understand why it made you made: It is true you can't control it---but that of course is why it's not normal and you need to talk about it at your appointment. Sleepwalking is considered a real sleep pathology and sleep doctors do study it. Hopefully your doctor or PA will have some real ideas on what you might try to help with it. Good luck in dealing with this problem.

It took me so long to get up the courage to get a sleep study because I knew I had OSA, then build up the courage to adjust to this new way of sleeping and I still can't catch a break. I am very frustrated and beyond tired.

Don't give up. You've got a lot of folks (both here and in your real life) who are pulling for you to get through this.

[kteague]

Some thoughts on bits and pieces of your situation. About the vibrations - I've read about them before, discussed within the realm of sleep disorders. Seems most lean toward it being a sensation felt during transitioning sleep stages when there is a glitch and the transition doesn't go smoothly. (Kinda like driving a stick shift car and if you don't get everything in sync as you shift gears there can be a shudder.) The descriptions of these vibrations are quite varied - and quite interesting. Just curious, do you ever experience other sleep glitches, like maybe sleep paralysis? Well, sleepwalking is a glitch I guess. I would be hesitant to take sleep aids that are known to cause sleep activity, especially if you are prone to this. That is, unless someone is there to assure your safety. About taping the mask - one strip of tape or a bandaid across a strap onto your skin might be enough to wake you so you can stop. Do you know yet when the mask comes off? If it is soon after going to sleep, it could be that you are using the ramp feature, and the pressure is too low. That happened with me. I quit CPAP after my first few months. Knowing I needed to make it work is how I found my way here. It took some time to stop removing my mask in my sleep, but at some point I did. A couple likely scenarios on removing the mask... Once the conscious mind is not available to remind you that thing on your face is ok, the brain tells you to get the thing off. Or maybe your treatment is not therapeutic, and during apnea events taking it off seems appropriate to your sleeping brain. About trying to sleep on your side - what is your normal sleeping position when not using cpap?