I can't keep the mask on no matter what

[doubleg137]

I have tried and tried and tried, about four and a half years, and I have only been able to keep the mask on one night in all that time. Thats 1 night in about 1650 people... I was sent something called a Flexifit mask. I saw how it was secured and had some glimmer of hope. After the first night, I found out that it was false hope. I ripped the thing completely apart and tore the new hose while in my sleep, and ended up brusing my arm and scratching the crap out of my face getting it off. So much for that try. I feel like giving up on ever having a night where I will wake up feeling rested. is there anything that can be done? I'm close to taking my sledge hammer to the CPAP machine. Is my body telling me "You will NOT rest .... EVER!!!!!"? Anybody have anything similar happen? Im near the end of my rope with this. help!

[JeffH]

Ever thought of trying other mask until you find one that works for you?

[doubleg137]

I have tried six different masks.. and not one of them ever stay one, except for the first mask for the one night.
Maybe I watched "Alien" one too many times?

[bdp522]

Try wearing your mask during the day, while awake. Of course you need to be hooked up to the machine and have it turned on. Watch TV or read while you have it on...anything that will help take your mind off the mask. Do this for a few minutes the first day and for longer periods of time every day after. It will help you become more comfortable with the mask.
It takes alot of work on our part to get this treatment working for us. If you have been having the same problem for 4 1/2 yrs, what took you so long to get help?
You have to decide that you WILL do this no matter what. If you wake with the mask off...put it back on!
Possibly a mask like the hybrid, that doesn't interfere with the vision would work better for you.

Brenda

[silver123]

Have you tired wearing the mask ( attached to your CPAP machine and turned on) during your waking hours to get used to it? During watching tv, reading in the evening, stuff like that.....? and I don't mean for 5 - 10 mins, maybe starting there but moving up to significant lengths of time to acclimate to the mask. It might give you some idea of what is causing you problems and give you some time to adjust.

[LoQ]

have you talked to your dr. about this problem? The first day my dr. told me that it was a possibility i had osa, i started psychological warfare on myself. i cannot bear to be touched by things, and i was afraid i'd do the same thing you are doing. so i never ever allowed myself to have a negative thought about cpap (after the first hour or so of pity). ever. when i felt a negative thought coming on, i replaced it immediately with a positive thought. "cpap is the thing that will make me feel rested, so i look forward to that day when i start therapy" is an example thought.

i think it is too late for you to do what i did, though, because by now you have a really, really bad habit, and it's going to be tough to break. what started as a small psychological problem is now a really big psychological problem. i wonder if you could get some anti-anxiety meds to get you through the night until you are able to tolerate the mask. if i were you, i'd also put a total ban on the thoughts of failure and other negative thoughts about cpap. it isn't helping you.

[OutaSync]

Try to figure out what is bothering you the most and we can deal with one problem at a time. You sound totally overwhelmed with the whole thing, but try to narrow it down and attack it piece by piece. Does the mask hurt? If so, where? Does the noise bother you? Do you feel as though you can't breathe?

[jgolomb]

Whew, 4 1/2 years - Keep trying, it really is worth the effort.

First, you don't say which flexfit mask - the nasal mask or full face mask. Of the six you had, what styles and brands if you can remember. Sometimes less is more - did you try a nasal pillow?

Second, do you know why you rip it off. Is the mask bothering you, do you feel like you are suffocating, is it leaking, is it too confining... If you were sleeping and really don't know then do as the other readers said wear it while awake and try to get used to having it but while you're at it pay attention to why it is bothering you so much.

Do you have a humidifier?

Has it been 4 1/2 years since your study. Might be a good idea to get another done, it is probable that things have changed and your settings are no longer the best for you. Get the machine checked to see that it is working properly and the settings are what the Doc ordered.

Don't give up! Sooner or later you will probably have to make it work for both your sanity and health, so just "git 'r done."

[Babette]

1) Try another mask - Have you tired the Nasal Aire II? You can read al about it in my signature line.
2) Try http://www.pur-sleep.com - it really helps take the edge off the experience of masking up
3) Ask your doc about some anti-anxiety drugs to help you get over the hurdle and get compliant

Good luck!
Babettes

[doubleg137]

yup.. tried that mask too. it lasted about 30 minutes before I tore that one apart. I think I just have to accept it. I will never ever sleep and wake up feeling rested, ever. I have to live with that. I have to wonder what I must look like thrashing about with a mask on my face.. I should video that one time and look to see what the problem really is. A sleep study takes place in an unfamiliar environment. I don't really like that. The last time I remember waking up and feeling rested.. feeling like I should feel. Portland, OR.. Sept 28, 1997. What a glorious morning that was. It was a very odd feeling indeed.. Actually feeling rested. I was euphoric... Actually felt happy for a change, and I never felt the same since. Maybe getting a new bed might help.

[kteague]

Wow, that's a long time to have not adjusted to ANY of the 6 masks you've tried. Makes me wonder if there's not something wrong with your settings - have you taken your machine in for them to go over it with a fine tooth comb? Do you have a data capable machine that you can check on what's going on? If you rip it off at about the same time each night, that could be a clue. I almost never made it thru a ramp that started at 4, so that was my clue that my ramp was too low. Some have found their machine was mistakenly set for a split night study and only work 4 hours of the night - any number of things that timing could be helpful.

Any chance you have a problem with limb movements? When mine are not therapeutically treated my sleep is restless, even agitated. When I'm like that I can't stand for hardly anything to touch me and the mask is the target of my discontent. I recently broke down and started using TylenolPM to settle down my restless sleeping, and it has helped. It is not unusual for a person to not show significant limb movements on an initial study, but for limb movements to manifest more with therapeutic OSA treatment. It can happen that the propensity for limb movements is there but OSA events are so frequent that the movements don't get a chance to happen, and OSA treatment allows them to do what they always wanted to do. I'm elaborating on this because of your description of thrashing about.

I don't know what your answer is, but I can't help but believe there has to be one. I'm the poster child for stubborn sleep issues - spent years sleeping in snatches, with periodic glimpses of improvement. During some periods I was so desperate to sleep I wanted to ask my doc if occasional anesthesia might be an option. I still don't sleep thru a night, but I am usually fine with keeping my mask on, and do get what feels like good sleep in sessions of 2 -3 hours two or three times during a night. Please don't accept that you will never sleep again.

I think I'd look at other possible contributing factors rather than mask discontent alone. Another sleep study might help pinpoint the problem.

[Wulfman]

Why don't you fill out your profile with the equipment you do have......and make a list of the masks you've tried.
Have you gone back to your doctor and complained about the problems you're having?

The way I interpret your posts, you have essentially had NO therapy since you started.......is that about correct? (Minimum therapy requirements being more than 4 hrs. per night)

You need to do a little analysis of your situation to try to figure out why this doesn't seem to be working for you.


Den

[Arizona-Willie]

Have you considered going to a certified hypnotherapist?

They could very possibly help.

[OutaSync]

Just a little over a year ago,before CPAP, a hypnotherapist charged me $800 to teach me how to hypnotize myself to sleep. We had several sessions and she made various CD's for me to listen to as I fell asleep. After two months, she gave up and she refunded my money. I really, really wanted that to work, too.

Bev

[SleepGuy]

I have tried and tried and tried, about four and a half years, and I have only been able to keep the mask on one night in all that time. Thats 1 night in about 1650 people... I was sent something called a Flexifit mask. I saw how it was secured and had some glimmer of hope. After the first night, I found out that it was false hope. I ripped the thing completely apart and tore the new hose while in my sleep, and ended up brusing my arm and scratching the crap out of my face getting it off. So much for that try. I feel like giving up on ever having a night where I will wake up feeling rested. is there anything that can be done? I'm close to taking my sledge hammer to the CPAP machine. Is my body telling me "You will NOT rest .... EVER!!!!!"? Anybody have anything similar happen? Im near the end of my rope with this. help!

doubleg, your experience sounds very similar to my own, including the urge to destroy the machine with a sledge hammer.

I'm the person behind the PurSleep products and this is not a sales call. I would be happy to send you (and anyone else) product samples. Just read this thread and follow the directions: viewtopic.php?f=1&t=34658&p=297747

There was a similar thread a few weeks ago where the patient reported panic attacks but it's basically the same thing you're experiencing. At the risk of repeating myself, I decided to cut and paste my post on that thread because it's relevant to your situation.

The "fight or flight" response (and anxiety generally) is a function of the sympathetic nervous system and cannot be controlled consciously. Triggers for a panic attack vary from person to person, based on life experience etc. The sympathetic nervous system becomes at least slightly aroused whenever we experience something new or different, especially something that might pose a threat.

I'm not an RT but understand that about 10% of cpap titrations fail because the patient experiences a panic attack, anxiety, etc. so you're certainly not alone in having this kind of response to cpap treatment. Apparently, your sympathetic nervous system has subconsciously concluded that using cpap presents some life-threatening risks and it's reacting this way to save your life. Many people experience a similar reaction and subconsciously remove their mask but without experiencing a full-blown panic attack. Ironically, the same nervous system also goes crazy during blood oxygen desaturation events brought on by untreated sleep apnea, which is why many people with apnea wake up with their hearts racing, have high blood pressure, and so forth (the panic hormones are powerful).

I've been a cpap user for quite some time and had an opportunity a few years back to develop a line of aromatic products for cpap. The sense of smell is also part of the sympathetic nervous system (specifically the limbic area of the brain). The sense of smell (along with our other senses) goes on alert whenever we experience something new. That's why, for example, hotel/motel rooms always seem to smell bad. Well, remember how your own house smelled the last time you came home from a long vacation? That's how it always smells. You got used to it right away but for a few minutes your nose was on alert even at your own hose. Good smells have the effect of calming down the limbic system so the idea is that a pleasant smell introduced into the cpap system will help to calm down the sympathetic nervous system and if experienced consistently over some period of time will help the brain conclude that the equipment poses no threats, etc. Pediatric anesthesologists have been using aromatics in childrens' anesthesia masks for 20 or 30 years. How do you get a kid to take anesthesia? Just put a cherry or banana smell in it and they can't get enough. It's the same basic idea here.

In any event, I would strongly recommend researching "CPAP desensitization" on google or here on the forum. There are a number of techniques to help your sympathetic nervous system calm down and accept the equipment and treatment. I don't want this to sound like a sales call. I just wanted to share some information about this topic that you might find to be useful. You're certainly in a tough situation--your brain needs to be able to conclude that the cpap is not dangerous but a life-saver!