Over a year and still no luck.

[JJ1jys]

Hi Everyone!

I've been trying to use the CPAP therapy for just over a year now and I've only got one 5 hour night with the mask on. I think the main problem is anxiety. I could be dozing off on the couch but when I go to bed and put the mask on I'm suddenly awake again. I'm sure it's all psychological. My doctor prescribed clonezpam to try and relax my muscles and mind but as soon as I have the mask on I can't fall asleep!! I take the mask off and I'm asleep in 5 minutes. The few times I think I did fall asleep with it on, it sure wasn't on when I woke up in the morning. I've tried pretty much every mask on the market (my DME provider said we had run out of options). I have the standard Mirage comfort mask and I just bought the Swift FX for her nasal pillows but no matter what I try I just can't seem to fall asleep with them on. I've scoured the forums and got some good tips like wearing the mask around the house, I hooked up a TV in the bedroom and tried listening to music or white noise on my ipod but still no luck. I find that I can, sometimes, start to doze off but as soon as I do I am either startled awake or I catch myself actually holding my breath and then I feel like I'm suffocating and need to take it off in order to get some air. The pressure was set to 6 at first but since then we've tried 8 and even 10 but nothing helps. I've got the C-flex set on 3 as well as the humidifier, and I've tried with the ramp on and off and tried changing the ramp times.

I usually just end up laying there breathing in the mask and start thinking stupid things like how it's hard to breath and I compare it to trying to breath when holding your head out of the car window going 80 km/hr. With the face mask on I also think about how it seems like trying to sleep with the blankets over my face. I've tried counting sheep, counting back from 100 and doing the alphabet backwards.

My AHI index is over 90, which I guess is pretty severe so I know how badly I need the therapy but I just can't seem to get it to work for me. During the second sleep study for the mask set-up I did actually sleep for about 2 1/2 hours with it on but I started coughing and when she put it back on I started to have a panic attack and ended up leaving early. I felt I needed some fresh air so badly.

I'm using the Remstar Plus with C-flex System one machine and I downloaded the Resscan software but can't seem to get it to read the card. I was hoping to find out how long I actually keep the mask on when I do fall asleep with it. I have a card reader but from what I've read on the forums I think I need a special reader but I'm not sure?

So, I finally decided to post my problems (I certainly don't want to discourage any new people with my unsuccessful story though) and see if anyone else has any good advice on some falling asleep "tricks" and if anyone ever experiences the suffocating problem and how to try and overcome it.

Thanks!

[Bluecat]

If the equipment you've listed is correct, your machine will only give compliance data (hours used, but not AHI or other details).
If you have the Pro version then you can get more data.
You need to have a SD card reader (standard reader), and Encore software (either Encore Viewer or Encore Pro). Resscan software is for Resmed machines (S9).

[Pugsy]

I'm using the Remstar Plus with C-flex System one machine and I downloaded the Resscan software but can't seem to get it to read the card.

First of all ResScan software is for use with ResMed machines not the Respironics Remstar machines.

Second the PR System One Remstar Plus hold no data beyond hours of use. The next step up machine in the Respironics brand that would give you meaningful data would be the PR System One Remstar Pro CPAP with C Flex. The software that is needed for Respironics machines would be either EncoreViewer 2.0 or Encore Pro 2.xxx or you could perhaps use the Onkor online analyzer.

Right now with the machine you have shown in your profile if you had the proper software it would show hours of use only which you already know is very limited and surely not optimal.

Perhaps if you had a fully data capable machine that could validate therapy via software it would enable your mind to overcome whatever is going on preventing you from sleeping using the mask and machine.

[W_HAMILTON]

Have you tried the mask I am wearing? I had A LOT of problems with the nasal-only alternatives, and even some of the full face options, but this one has worked out quite nicely. I have a unit similar to yours, with C-Flex also set at max and even a higher pressure setting (15cm), but after lying down for a few minutes and allowing the machine to adjust, I can barely tell if it is even working! I don't feel like air is being forced into me at all. At times, I'll wake up at night and either pull the mask off a bit or feel the exhaust vents to make sure it is actually working. When I tried the mask on at the DME office I had a lot of anxious feelings, and even today, when sitting up, I still have those same feelings as if it is just too much air being forced into me; however, once I lie down and relax for a few minutes, it becomes quite easy to breathe and I have no problems with it whatsoever.

[JJ1jys]

Thanks Bluecat and Pugsy, I will get the proper software and try it. Unfortunately, I'm stuck with the Remstar Plus for now because I have no insurance as I just got laid off.

[Janknitz]

Wow, a whole year?!!!!! Sounds like the definition of insanity--"insanity is doing the same thing over and over and expecting different results". I'm not implying you're insane, only that it's time to change your approach and stop doing something that doesn't work. I think that posting here means that you are finally seeing that you have to try something different. That's a good thing.

As already pointed out, you have a data-less brick if the one you've listed in your signature (Philips Respironics Plus machine) is correct. Don't waste any money on software for the machine you have, all it has is compliance info and you already know you DON'T use the machine. And at one year out, it's WAY too late to have the DME and insurance company do anything about it. So if you want the data to help you, you're going to have to buy a different machine at your own expense. If you want help on finding resources to buy one online for less, let us know.

Data is very helpful, but don't let the lack of a data capable machine be yet another barrier to using your CPAP. You've gone far too long without treatment for your sleep apnea--no more excuses! You need to start working on getting used to the machine, regardless of WHICH machine you have.

Now, about the anxiety, how about a different approach? I know you said you tried wearing the mask around the house, but how about a concerted effort. This is NOT about trying to sleep in the mask, this is about being comfortable in the mask when you are awake and fully in control. Pick a time during the day when you can do a quiet activity while fully awake--watching TV, listening to music, reading, even using the computer (maybe that couch time when you complain of falling asleep). Now, put your machine and mask on and work to get as comfortable as you can,don't try to sleep. This is for the purposes of getting used to the mask only. Also, take note of anything making it more difficult to stay comfotably in the mask, like pressure on your nose or cheeks, leaks, feeling like you are getting too much or too little air, etc. We can help you solve those problems while you continue to wear the mask for gradually longer periods while awake. When you can do this for an hour or so, only then is it time to tackle it in bed, but not before that. Maybe 2 hours if your schedule allows (with unemployment that may be possible).

[archangle]

When you get the feeling that you're not getting air, open your mouth a little and let a little air blow out through your mouth. Hold your hand in the airstream and feel the air stream. Maybe that will help you reassure yourself.

If possible, hook up and do CPAP when awake whenever possible. If you're reading, watching TV, etc. If you're up to the challenge, maybe even increase the pressure you "practice" with while awake, lowering the pressure at night. It might even be worth the effort to look on craigslist and buy a cheap, old, dumb, single pressure CPAP machine and put it in where you watch TV or sit and read for "CPAP practice"
.

[lcosborn]

Also consider listening to self-hypnosis tapes or relaxation tapes as you fall asleep. They really can help. Do a search on hypnosis, self-hypnosis, hypnotherapy or relaxation and CPAP to find tapes or therapists. Good luck.

[HoseCrusher]

Wow, a year... This is going to be a difficult habit to break.

Let's move over to the other side of the road and see what we can come up with.

You are going to have to put some effort into this, so get ready to conquer this problem.

You first need to grab a roll of toilet paper.

On the toilet paper you need to write down every reason why xPAP is not working. Also, you need to write down everything that is causing anxiety.

You should be able to come up with at least 50 - 100 things for the xPAP side, and at least 20 things that cause you anxiety. Limit your writing so you only have 5 - 10 things on each square of toilet paper.

I will pause for a moment while you get all if this written down...

Next you need some 3 by 5 cards.

You are now going to "organize" your problems and anxieties into groups. Your groups should have something in common. As you finish with one of the original squares, walk over to the toilet and flush it down the drain. At the same time, visualize those problems no longer bothering you.

By now you should have flushed your original list down the drain, and have a new, organized list, and hopefully you will still have some toilet paper left over.

The goal is to reduce your anxiety to a point where you can put on your mask and use your machine to improve your health. Don't loose sight of this goal.

The next step involves reprogramming your sub conscious mind to help you solve your problems. You already know all the "tricks" to try, but your mind just doesn't accept that this is the right thing to do. When you reprogram your mind, it will turn things around and keep you from taking your mask off or shutting off your machine because it now understands that it is in the best interest of your health.

Take 1 square of toilet paper problems and review them. Take a 3 by 5 card and write down a question that covers all the problems on that square of toilet paper.

A typical question would be something like "What can I do to make my mask more comfortable?"

Once you have transferred your problems from the toilet paper to the 3 by 5 cards, take the toilet paper and flush it down the drain.

Now you have to work on your questions. You need to end up with 2 sets of questions. One set is read each morning as soon as you wake up, and the other is read just before you go to sleep.

In the morning you ask What can I do about...

In the evening you ask What did I do today about...

Since you are working with a lot of issues, pick the most important ones and work with them first. As they get solved you can work on to the others, and before too long you will have made it through your whole list.

Asking the question in the morning focuses your efforts to deal with it during the day. Asking the question of how well you did just before going to sleep, programs your sub conscious to create ways to solve you problems.

There is a whole lot more to this, but those are the basics and that should get you going.

Good luck and I am "anxiously" waiting to hear of how you started here and progressed to using your machine all night.

[digitaleagle]

I had this type of anxiety when I first started my CPAP therapy. I thought I was going nuts. I was so tired when I went to bed I could hardly keep my eyes open. As soon as I put that mask on it was like I had a caffeine high. I could not fall asleep. I struggled with this for about 6 weeks. I got some generic Ambien from the sleep doctor. That helped but I did not want to become dependent upon the sleep medications.

I use the Swift FX and really think it is the best mask for me as there is less mask on my face.

Here are some of the things that helped me.

First I got some of the aromatic scents and use them on a regular basis. The smell helps distract your brain from being so aware of the mask, breathing, etc. I still use this them every night. I like the cherry scent. Get something that smells good to you.

The second thing I bought was the Ecotones sound machine. http://www.ecotones.com It has many realistic sounds like thunderstorms, surf, crickets, trains, wood burning, etc. (Yes white noise too) I'm not sure what happened but all of a sudden one night I fell asleep. The next night I slept again - then it became a habit. I'm still not 100% comfortable with the mask, (and wish I didn't have to wear it), but I do for my health and my brain seemed to come to terms with it. I swear the sound machine and the scents made a huge difference for me. Now, all I have to do is turn the thunderstorm on each night in my room and I'm out like a light in about 10 minutes.

Is it psychological? Yes, definitely. I believe your subconscious brain is freaked out about wearing that mask. (Whether you are conscious of it or not) Sounds crazy - but I think you have to conquer this. Let's face it, wearing a CPAP mask is not a natural thing.

My advice would be to try and distract your brain with something else while you are wearing the mask. The combination of the smells and sounds worked for me. Don't believe everything you hear or read. It's what works for you. For example everyone says don't watch TV while you are in bed. I watch TV EVERY single night and it helps me fall asleep. Everyone is different.

I believe you will find something that works for you. Just be patient and don't freak out about it.

Good luck.

[welki]

JJ, I'm so new to this new way of sleeping that I'm probably not "qualified" to offer much technical advice, but what I'm seeing in your post is fright, pure terror. You panic because you're afraid that you might suffocate. I hear that loud and clear. I think I"m perceiving that your rational mind knows you'll be fine, but once you let yourself relax, that pesky irrational self takes control and keeps you from your therapy.

Of course I don't know your personal situation, but is it possible for you to have a friend or relative come over and sit with you for a night or two or three .. all night, right there with you? Maybe even for a few afternoon naps? You could let yourself fall asleep and know FOR SURE that someone would be there for you should you, in the unlikely event, start struggling? It might ease your mind to know that you're safe, get a few hours of sleep and *fingers crossed* be able to keep the mask on while sleeping solo because you'd KNOW nothing bad was going to happen.

I'm not even two months into this therapy and have wondered why I struggle so hard to comply when I don't feel much different than I ever have. To make things more complicated, I was diagnosed with diabetes two weeks after I'd started and that threw a decent sized cog into the wheel. But I know this is a journey and I have to stay on the path to see results. How you've done this for a year speaks to what a determined soul you are.

welki

[ozij]

Have you, at any point, considered cancelling the C-Flex? It bothers some people.

Can you try to tell yourself, slowly, consciously, kindly and firmly that you will not suffocate with the mask on?
At and AHI of 90, your brain is primed to avoid any reminder of suffocation - when I started therapy, 6 and something years ago, just looking at a human being wearing a nasal pillows mask made me queasy.
Think of what happens to your body and brain during the night:
Your brain is changing mode; it's slipping into sleep - letting changes happen in your body at the same time.
As a result of those bodily changes, your upper airway relaxes, close up and makes your blood stream lose oxygen.
Of all body parts, the one most sensitive to loss of oxygen is your brain, so it is pre programmed, in its most basic level, to switch you back to wakefulness, open that airway and make you breathe. That's the most basic, primitive, automatic, life preserving part of your intact brain doing that - it has been doing that at the rate of 90 time an hour recently.

We come to this therapy traumatized by having experienced choking hundreds of times a night, every night. It happens when we're asleep, and the more primitive part of our brain, the one that is tuned to the brain's need for oxygen, the one that controls our breathing has been saving us from real danger by alerting our body to the real danger it is in. Night by night. Our brain knows that we are in grave danger -- because we have a breathing problem when we sleep. And night by night it does what it has to do to alert us: it pours anxiety causing hormones into our blood to wake us up. Given that experience, it is a wonder you are not more claustrophobic. And given that experience, it is no wonder that your brain is - to put it mildly - wary of having something on your face that may obstruct your breathing.

Now however, when you know consciously what sleep apnea is, it is your job to convince that life saving part of your brain that you are finally listening to it - that your more evolved part had finally realized the danger, and you are doing something about it, trying to save your life. Tell that phobic part that you finally know and appreciate what an important job it had in alerting you to danger, thank it. Don't try to ignore it - it will scream louder. Tell it "I hear you, you're afraid we'll choke. You kept us from choking. But you see this mask here? This is to help us breathe. This is here to help you in your job of keeping me properly oxygenated. I know, it reminds you of danger, but it is not dangerous . Thank you for waking me so many times, I really was not aware of the danger - but now I know what the real danger is." Do this many times, in many ways while trying to get used to wearing the mask.

[torontoCPAPguy]

First, it sounds to me like your pressure settings may be too low if you are having trouble getting air. But at the same time you are saying it is like trying to breath with your head stuck out of the car window at 60 MPH. I am confused.

Try a very simple experiment. First, get yourself a FULL FACE MASK to use. If you open your mouth with a nose mask you are going to have a bit of trouble breathing. With a full face mask, the pressure being presented will only have effect on air flow if that airflow is blocked by OSA. Otherwise your breathing should be not a whole lot different than without a blower on your face. Check to ensure that you have exhalation pressure relief running full tilt; this will reduce the pressure when you exhale and make things real easy.

Psychologically, try a Mirage Quattro Pro full face mask - turn your blower on first and then put the mask on your face. You will note that there is air blasting out of the mask before putting it on and yet, miraculously, when you stick it on your face properly, it is almost as if there is no air flow excepting normal breathing. Worried about lack of air should the machine stop in a power failure? Tug on the mask - it will fly off as the lower straps release due to the stress on them. OR tug on the air hose going in the front. IT WILL also pop right off leaving an opening large enough to play the flute. No worries there either.

Most importantly, you need to ensure that your blower and mask are set up right and giving you the correct pressures at the correct times. It should NOT NOT NOT be a chore to breath with the system working; quite the contrary, as your breathing gets shallow during sleep the blower should adjust itself to meet your needs for air and especially during a hypopnea event, etc.

Your story is not new but it is one that can be resolved with just a little effort and perhaps a few nights of clonazepam to reduce your anxiety. First make sure the gear is set up and working right.

[robysue]

JJ1jys,

You've already received much useful advice on how to start dealing with the anxiety putting the mask on your face, and I won't add anything to them since anxiety from the mask was not a big issue for me. Other than to say, take the advice seriously and follow-up on it.

Now you also do say somethings that I am painfully too familiar with:

I could be dozing off on the couch but when I go to bed and put the mask on I'm suddenly awake again. I'm sure it's all psychological. My doctor prescribed clonezpam to try and relax my muscles and mind but as soon as I have the mask on I can't fall asleep!! I take the mask off and I'm asleep in 5 minutes. The few times I think I did fall asleep with it on, it sure wasn't on when I woke up in the morning.

...

I hooked up a TV in the bedroom and tried listening to music or white noise on my ipod but still no luck. I find that I can, sometimes, start to doze off but as soon as I do I am either startled awake or I catch myself actually holding my breath and then I feel like I'm suffocating and need to take it off in order to get some air.

...

I usually just end up laying there breathing in the mask and start thinking stupid things like how it's hard to breath and I compare it to trying to breath when holding your head out of the car window going 80 km/hr. With the face mask on I also think about how it seems like trying to sleep with the blankets over my face. I've tried counting sheep, counting back from 100 and doing the alphabet backwards.

...

So, I finally decided to post my problems (I certainly don't want to discourage any new people with my unsuccessful story though) and see if anyone else has any good advice on some falling asleep "tricks" and if anyone ever experiences the suffocating problem and how to try and overcome it.

While I do think anxiety induced by the mask is a real problem that you must solve, I also think some of your problems falling asleep with the mask on are being fed by and reinforced by behavior patterns surrounding your bedtime and approach to trying to get to sleep with the mask. In other words, in addition to the anxiety, the mask seems to be triggering insomnia that you are "curing" by taking the mask off. Unfortunately, you need to cure the mask-induced insomnia in ways that allow and encourage you to learn to sleep WITH the mask on your nose.

Several questions and some comments/suggestions:

• You said you were prescribed clonezpam to help you relax and sleep. Are you still taking it regardless of whether you try to put the mask on at night or not? If you are taking the clonezpam all the time anyway, it could be that your body is now associating taking clonezpam with getting to sleep without the mask. So while you are working on reducing the anxiety of putting the mask on your face during the DAYTIME, you should also be weaning yourself OFF the clonezpam at night.
• You say putting the mask on your face wakes you up. (Boy do I recall that feeling all too well.) Things that you can do to try to get over this include:
  • Establish a bedtime routine that includes some NON-cpap things in it.
  • Get as MUCH of the CPAP-stuff out of the way EARLY in the evening so it does not need to be done at bedtime. Put the machine together at supper time. Fill the humidifier up at supper time. Wash your face well in advance of bedtime. Pre-fit the mask (if possible) right after supper. The goal is to have the ONLY CPAP-thing you have to do at bedtime be "put the mask on and turn the light out."
  • You say you often "start to doze off" while on the couch or watching TV (in the bedroom). Do NOT allow your self to start DOZING OFF to sleep without the mask on. Establish a bedtime and when you start to get sleepy (but before you are actually DOZING OFF to sleep), go back to the bedroom and mask up and lie down---in the dark and NOT with the TV on.
  • When the mask wakes you up (as it will at least at the start), give yourself about 15--30 minutes to try to get to sleep with the mask on. If you are NOT asleep, then get out of bed, go into a different room, settle yourself down and allow yourself to get sleepy (but not to the point of dozing off to sleep) and then go back to the bed, mask up and try again to get to sleep. Repeat as often as necessary. You will eventually fall asleep. And the more consistent you are with this, the quicker you will start being able to get to sleep with the mask on.
• You say when try to fall asleep with the mask on, "I usually just end up laying there (for hours?) breathing in the mask and start thinking stupid things ..." or you just give up and take the mask off and fall asleep in five minutes (with the help of the clonezpam?). Both behaviors are counterproductive since they are both allowing your conscious brain to continue to believe that it does not need to learn (or cannot learn) to sleep with the mask on your nose every night, all night long. The concentrating on your breathing is clearly feeding the anxiety of "not getting enough air" as does "thinking stupid things like how it's hard to breath and I compare it to trying to breath when holding your head out of the car window going 80 km/hr. With the face mask on I also think about how it seems like trying to sleep with the blankets over my face." You need something to distract you from this kind of thinking. But watching TV in bed will likely make it worse. Reading a boring book in bed might be ok. But a white noise machine might help distract you. If you want to use music, it's important that the music be very soothing and very quiet and very relaxing. It helps if it all sounds a bit alike (so you can't distinguish how much time is passing). And have the iPod running at very low volume all night long looping through the playlist so that you don't wake back up when it turns itself off.
• You also say: "I've tried counting sheep, counting back from 100 and doing the alphabet backwards." While these techniques sometimes work to help get you to sleep, they can also trigger increased anxiety---in your case, both your anxiety about the mask itself and your anxiety about not being able to get to sleep. As a general tip, you might want to look at some self-help measures for insomnia and apply them when you are trying to get to sleep with the mask on.

[torontoCPAPguy]

Re: Clonazepam

I am a regular user of Clonazepam, on MY terms. I forget the dosage of the little orange tablets but it is low. Many nights I will take 3 or even 4 of them to zonk me out to sleep. By the time morning has rolled around they are gone from my system and I am pretty bright.

Some nights I have no need for 'the crutch' and some nights I take just one to ensure my sleep. It is almost like insulin on a sliding scale based on blood glucose but instead a sliding scale based on anxiety. My Rx says "take as directed or take as required".

You really need to watch the Clonazepam intake and vary it. Some nights heavy, some nights none.... based on your anxiety level. Why? Withdrawal symptoms; you will feel like your body is buzzing and jittery if you are becoming 'addicted' and it is unmistakable.

Vary your intake and you will avoid same.

Do NOT feel that you are using a 'crutch' in taking clonazepam. Not by a long stretch. I know folks that are taking sleeping pills that would knock out a horse every single night and still have trouble with sleep and they do not deal with OSA gear.

In any event you will get plenty of good advice on here and you need to start absorbing and taking proactive action to resolve issues; it is the only way to beat this thing.

If you are anxious about wearing a facemask I might even suggest that you pull the air tube off the front of a full face mask and wear it all day long when not working or partying. It will make things easier for you. When you wear a nosebag you need to breathe ONLY through your nose. Open your mouth to say hello and all the air pressure is going to be coming out your mouth and you will have nothing flowing into your lungs..... and increase your anxiety level needless to say. I have found the full face mask to be the least stressful mask to wear because I know that if my nose gets stuffy I can mouth breathe and I know that if I vomit or whatever I can have the mask off in a fraction of a second or at worst have a huge outlet in the front of the mask in addition to the air exhaust holes. I find it a whole lot more comfy than taping my mouth closed with tape or using strapping to keep it closed. I had a jeweller friend that was robbed a few years ago and they taped their mouths closed. Everyone survived except my friend who got so upset he threw up and could not get his mouth open because it was taped and his hands tied. He died where he was sitting. I could NEVER tape my mouth closed for all the tea in China as they say. But I have no problems with the Mirage Quattro Pro full face mask. It took a while to get used to but I don't even know it is there any longer.


Hang in there. You will get the hang of it eventually. And wishing you AHI=0.00 (mine is every morning) and REM sleep.