I cannot go to sleep with a CPAP mask.

Guest · Post by **Guest** » Sun Jul 08, 2012 1:28 am

To all and sundry:

I have tried to sleep with a CPAP mask, but I have given up. I lie awake hour after hour, my nose itches, air blows in my eyes, the pressure of the headbands gives me pain in my head or my temples, and--most of all--I feel claustrophobic,helpless, ashamed, and frightened. Right now, I am less concerned with the consequences of untreated moderate sleep apnea than with the inability to sleep with the mask on. I have always had great difficulty getting to sleep, anyway, and I have been taking a large dose of Ambien every night for so long that it no longer helps. I am a mouth-breather, so I am restricted in the type of CPAP mask I can use. I am also--when I can sleep at all--a side sleeper. Both of these characteristics exacerbate the problem. I have tried three types of masks, but each one creates its own set of discomforts. I would welcome suggestions. Thanks.

TS

mikewithe · Post by **mikewithe** » Sun Jul 08, 2012 1:48 am

I would suggest a chin strap to deal with the mouth breathing issue and nasal pillows to deal with the claustrophobia. I had many of the same problems you describe but this combination has worked wonderfully for me.
You can check out one of the many varieties of nasal pillow masks by clicking the link at the bottom of this post.

Good luck and don't give up; your life depends on it.

zoocrewphoto · Post by **zoocrewphoto** » Sun Jul 08, 2012 1:54 am

Welcome to the group. Can you tell us more about your situation? If you go to the user control panel (located below the search bar), you can choose your machine, current mask, etc.

Please tell us which masks you have tried and what problems you had with each. You can also do some searches with keywords for those masks to see what tips you can find while you are waiting for replies to this topic.

I use the Quattro FX full face mask. At first, I had trouble with leaks into my eye. I'm not completely sure what all I did to fix it. Part of it, I think, was simply practice. I also learned that I can fit it well while sitting up, but I can't fit it worth a darn if I am in bed, either lying down or sitting up. I have to get up, sit on the edge of the bed, and then I can get it right. I am also a side sleeper, and I really haven't had any problems with doing that with the full face mask. At first, I was using my hand to keep the mask from hitting the pillow, but now I just shove me face (and mask) into the pillow, and it also seems to help cover up any minor leaks.

I also have a Mirage Liberty hybrid. I haven't completely mastered it yet. I can use it for 2-4 hours, but not all night yet. But it does pretty well and feels comfortable.

I would also highly recommend reading the topics at the top of the first page, especially the one about change. Starting with cpap is like losing something (your normal way of sleeping), so we have the same grieving process to go through as we learn to adjust to this.

I am 10 weeks into this. I spent years ignoring it, and basically denying that it was important. I finally told my doctor about it because I learned that sleep apnea can cause high blood pressure and lead to heart attacks and stroke. I had spent 8 months with 3 medications trying to improve my blood pressure, as my doctor was worried that I was at high risk for a stroke. So, I had to make this work. Now, 10 weeks into this, my blood pressure is mostly normal (except when I have a bad night), so it has clearly improved my health. But I was at a point where I knew I had to push myself to make it work. In some ways, I had an advantage, because I was ready for cpap mentally. It is a difficult thing to get used to.

49er · Post by **49er** » Sun Jul 08, 2012 2:27 am

Guest wrote:To all and sundry:

I have tried to sleep with a CPAP mask, but I have given up. I lie awake hour after hour, my nose itches, air blows in my eyes, the pressure of the headbands gives me pain in my head or my temples, and--most of all--I feel claustrophobic,helpless, ashamed, and frightened. Right now, I am less concerned with the consequences of untreated moderate sleep apnea than with the inability to sleep with the mask on. I have always had great difficulty getting to sleep, anyway, and I have been taking a large dose of Ambien every night for so long that it no longer helps. I am a mouth-breather, so I am restricted in the type of CPAP mask I can use. I am also--when I can sleep at all--a side sleeper. Both of these characteristics exacerbate the problem. I have tried three types of masks, but each one creates its own set of discomforts. I would welcome suggestions. Thanks.

TS

Welcome TS.

Regarding full face masks, I am waiting for the Amara full face mask to come out as it is supposed to be lighter. According to the company, online vendors should have it by mid July.

https://www.cpap.com/productpage/respir ... -mask.html

Might be worth a try.

I am not a doctor but I suspect your problems in adjusting to cpap might be partially due to taking ambien that no longer works. Have you considered tapering off of it?

If you do, please go slowly as going too fast can have devastating results, particularly if you have been on it for awhile.

Can you tell us more about your insomnia history?

You might find Roby Sues blog on insomnia helpful. She posts here constantly and I am sure will respond when she sees your post.

http://adventures-in-hosehead-land.blog ... er_19.html

Hang in there.

49er

Sloop · Post by **Sloop** » Sun Jul 08, 2012 3:43 am

Guest wrote:
and I have been taking a large dose of Ambien every night for so long that it no longer helps.

TS

Get rid of the Ambien. It is BAD stuff. I won't bore you with details of how it almost killed my wife one year ago (do a search here on Ambien), but you should try something that will put you to sleep QUICKLY. Melatonin, but a specific kind. It is called Sublingual Melatonin (dissolves fast under your tongue to quickly get into your bloodstream).

pats · Post by **pats** » Sun Jul 08, 2012 4:47 am

Guest wrote:To all and sundry:

I have tried to sleep with a CPAP mask, but I have given up. I lie awake hour after hour, my nose itches, air blows in my eyes, the pressure of the headbands gives me pain in my head or my temples, and--most of all--I feel claustrophobic,helpless, ashamed, and frightened. Right now, I am less concerned with the consequences of untreated moderate sleep apnea than with the inability to sleep with the mask on. I have always had great difficulty getting to sleep, anyway, and I have been taking a large dose of Ambien every night for so long that it no longer helps. I am a mouth-breather, so I am restricted in the type of CPAP mask I can use. I am also--when I can sleep at all--a side sleeper. Both of these characteristics exacerbate the problem. I have tried three types of masks, but each one creates its own set of discomforts. I would welcome suggestions. Thanks.

TS

I had less trouble with leaks after switching to pillows and a chin strap than with a full face mask. However, if you decide to stay with FFM, or while you are getting a replacement, consider re-adjusting your mask. My understanding is that leaks can be caused by over-tightening.

You need to think through the being ashamed and frightened. Dealing with sleep apnea, despite the inconvenience, is something to be proud of, not ashamed of.

zoocrewphoto · Post by **zoocrewphoto** » Sun Jul 08, 2012 5:05 am

I forgot to mention. Some of the advice that helped me is this. If it is blowing in your eyes, it may need to be a little lower on your face. And start with it a little loose so that the air can fill out the bubble seal. Then tighten it a bit. Don't start with it too tight.

If you have a medium or large, you may need a smaller size. I have a small, and I need a smaller size, but it doesn't come in an extra small. So, I do the best I can. I did have to order a small headgear as the standard medium is a bit large on me. I'm waiting for that to arrive, so I haven't actually gotten it yet.

But even with it being a tad big on me, it does pretty well most nights, since I got it figured out better.

Pad A Cheek · Post by **Pad A Cheek** » Sun Jul 08, 2012 5:13 am

There are a few things you can do to help adjust to wearing the mask while trying to go to sleep. If you put the mask on during the day and watch TV or read a book or do things around the house with it on, you will get more acclimated to wearing it. If you give your machine and mask a name (well some names are nicer than others) and adjust your thinking about the whole sleep apnea treatment to be a positive thing. You can also put your mask on at night and lay in bed just letting your mind wander, not TRYING to go to sleep. I used to lie on my back and do this and it helped. When I was really sleepy, I would roll to my side and get adjusted and fall asleep. Sometimes our trying to fall asleep can cause more problems than allowing sleep to come. It can be a mental game for sure.

Do not give up. There are many people on here that will help support your struggles as you adapt to this. It is a challenge, but it is very much worth the struggle. I have a clear head again, I am not sleepy during the day, I enjoy life. I am so glad that I found treatment and it works so wonderfully for me. It can work for you too. It takes time, patience and perseverance especially when you feel you don't have any left to give. It will change your life when you get it right, and you will wonder how you ever functioned before. Don't give up.

Karen

SleepDepraved2 · Post by **SleepDepraved2** » Sun Jul 08, 2012 6:08 am

I'm a week into my CPAP treatment and I still have trouble falling asleep, but it is getting easier. I find if I think about breathing it makes it harder, so I try to think about anything but that. I have a full face mask and found a CPAP pillow really helps me be able to sleep on my side which is my preferred position.

carbonman · Post by **carbonman** » Sun Jul 08, 2012 7:22 am

Guest wrote:-most of all--I feel claustrophobic,helpless, ashamed, and frightened. TS

....and so it is, now, you come to a major crossroads in your life.
OSA has given you an opportunity to discover who you can be.
If you look down, you will see a well trodden path,
passed over by so many that have felt
"claustrophobic,helpless, ashamed, and frightened".

It's not the end, it's the beginning.
A time for courage, creativity, innovation, perseverance and strength.
It is your time to join life....not be rejected by it.
It is your path to incredible insight into your soul.
Amazing abilities that you never knew you had will be realized.
It is life's gift to you.

Accept this challenge that has been presented to you.
There is a completely new life waiting for you....
beyond fatigue, drugs, discomfort....beyond being the victim.
It is your path but you do not go alone.

Embrace it.
Be strong.

I'll see you on the road.

nanwilson · Post by **nanwilson** » Sun Jul 08, 2012 8:42 am

Don't feel helpless and ashamed.....you have over 65000 patients that were in your shoes when we started this road.
You have been given a bunch of really good suggestions, go over them, digest what folks are saying and pick out the ones you want to try. I use a full face mask too, but it is small, a Respcare/Innomed Hybrid (nose pillows and a mouth piece only) I do have a quattro, but when I wear that one I sleep with my mask at the edge of the pillow, thus the mask is over the edge. I have always slept on my side and still do, you just have to find the "right" mask for you, even if you have to try out a dozen of them. Don't give up and please don't despair....we have all been there, done that and WE succeeded , YOU will too.
Cheers and good luck
Nan

BlackSpinner · Post by **BlackSpinner** » Sun Jul 08, 2012 9:58 am

air blows in my eyes, the pressure of the headbands gives me pain in my head or my temples, and--most of all--I feel claustrophobic,helpless, ashamed, and frightened.

the first 3 indicate a badly fitting mask. Try a hybrid to make sure your eyes are safe.

The second is attitude. You have been offered the "golden grail" of healing - breathe - and it makes you ashamed. A cpap machine is no different then a pair of glasses, orthodics in your shoes or a cane. All help you function efficiently.

Wear the mask/machine while watching tv or reading to allow your body to adapt and accept it without your mind running around like a squirrel, bitching and interfering. Find some relaxation cds to listen to, to shut up the squirrel when you are trying to sleep. Or visualize your self laying on a beach in the sun, drowsing, feel the sand, smell the ocean, listened to the waves. It works best if you pull up an actual memory.

robysue · Post by **robysue** » Sun Jul 08, 2012 10:20 am

carbonman wrote:
Guest wrote:-most of all--I feel claustrophobic,helpless, ashamed, and frightened. TS
....and so it is, now, you come to a major crossroads in your life.
OSA has given you an opportunity to discover who you can be.
If you look down, you will see a well trodden path,
passed over by so many that have felt
"claustrophobic,helpless, ashamed, and frightened".

It's not the end, it's the beginning.
A time for courage, creativity, innovation, perseverance and strength.
It is your time to join life....not be rejected by it.
It is your path to incredible insight into your soul.
Amazing abilities that you never knew you had will be realized.
It is life's gift to you.

Accept this challenge that has been presented to you.

There is a completely new life waiting for you....
beyond fatigue, drugs, discomfort....beyond being the victim.
It is your path but you do not go alone.

Embrace it.
Be strong.

I'll see you on the road.

Carbonman,

Thank you for posting this. I needed to see it and its timing was serendipitous for last night was yet again a rough one for me where all the anger, the sense of being betrayed by my own body, the loneliness, and the shame and embarrassment I felt on a nightly basis at the beginning of this crazy therapy. 'Tis good to be reminded that I am not alone on this path. Thank you.

cherylgrrl · Post by **cherylgrrl** » Sun Jul 08, 2012 10:48 am

Have you looked at the SleepWeaver mask? https://www.youtube.com/user/thesleepwe ... sults_main

Using this with a chinstrap might solve your problem. I just ordered one, the manufacturer offers a 100% guarantee or your money back within 30 days on most CPAP supply sites, e.g. https://www.cpap.com/productpage/sleepw ... Qgodb30ZcA

I just looked at my results for a Mirage Liberty mask (nasal pillows plus full mouth mask) and my API was 25 vs. 14 for the Mirage Quattro full mask, so it doesn't look like nasal pillow approach will work for me. I just ordered my SleepWeaver mask, so will let you know how it works when I get it!

- Cheryl

robysue · Post by **robysue** » Sun Jul 08, 2012 11:32 am

Guest wrote: I have tried to sleep with a CPAP mask, but I have given up. I lie awake hour after hour, my nose itches, air blows in my eyes, the pressure of the headbands gives me pain in my head or my temples, and--most of all--I feel claustrophobic,helpless, ashamed, and frightened. Right now, I am less concerned with the consequences of untreated moderate sleep apnea than with the inability to sleep with the mask on. I have always had great difficulty getting to sleep, anyway, and I have been taking a large dose of Ambien every night for so long that it no longer helps.

Sounds to me like you've got a pretty bad case of entrenched, chronic insomnia that predates the start of your CPAP therapy. And starting CPAP has added to your nightly battle with the ol' insomnia monster.

And until you deal with the insomnia and start getting it under control, chances are you'll continue to lie awake rumminating on just how uncomfortable every thing is, which feeds the feelings of claustrophobia, shame, helplessness, and fright. Which all feed that insomnia monster a rich and fattening diet.

Where to start?

I'd recommend starting with a three-fold approach. I'll be honest, it won't be easy, but there's really no "easy" way out for you. Even giving up completely is not going to make you sleep any better: Remember that you are the one who said, "I have been taking a large dose of Ambien every night for so long that it no longer helps." But if you are willing to make a long term commitment to yourself and to learning to manage both your OSA and your insomnia, then here's what I'd recommend based on my own battles with the Insomnia Monster.

Part One
Work on reining in the insomnia monster with all the standard "self-help tips for insomniacs". It starts with an honest assessment of your sleep hygiene and making the necessary life-style changes to clean up you sleep hygiene. Read my Taming the CPAP Induced Insomnia Monster for my standard advice to folks who find themselves in the situation you are now in. I also highly recommend picking up a copy of Sound Sleep, Sound Mind by Dr. Barry Krakow and working your way through the entire book.

Part Two
Work on dealing with the mask issues and your own emotional reactions to those issues. Wearing the mask in the daytime and in a different room may help you get over some of the claustrophobia. At the same time it will also give you practice time for learning how to deal with things like an itchy nose. Some folks find they can keep a q-tip or other similar object around on the night table and slip it under the mask to scratch. Some folks find scratching /rubbing the nose really hard just before masking up helps. During the daytime, really work on fitting the mask to your face. Practice adjusting the straps. Practice re-seating the mask on your face by gently pulling it away and then allowing it to resettle against your face. Learn how the air-filled cushion feels different when you tighten the mask too much. Also use this time to really familiarize yourself with your equipment. Make sure you know the exact brand and model of the machine you are using. Make sure you know how to adjust all the patient comfort settings. Learn how to get into the clinician's menu so that there's not this "secrete part" of you machine to fear. Likewise, make sure you know the exact brand, model and size of the mask you are using. Consider retrying some of the masks that did not work earlier in a different size.

And if the feelings of shame and fright and helplessness continue to grow or are already so intense that you feel they are in control of you life, the consider getting some professional counseling---preferably from a counselor who is NOT a psychiatrist (MD) since an MD is much more likely to want to try to "medicate" the problem away through the use of some pretty potent drugs when what you really need are coping strategies.

Part Three
Call the sleep doc's office and insist on taking to the doc or his nurse or his PA. Tell the doc/nurse/PA exactly what is going on. Tell them the insomnia has intensified since starting CPAP. Tell the the large dose of Ambien is no longer working and that you are deeply worried by that. Tell them you need their professional help on tackling the insomnia as well as dealing with the routine CPAP adjustment issues. And ask them to consider using a cognitive behavior approach to dealing with the insomnia either instead of or in conjunction with a switch in you sleeping pill prescription, or ask for a referral to a CBT therapist with expertise in helping folks with insomnia. And ask about CPAP patient support groups in the area. There probably isn't one, but there should be. If there is, having the chance to meet other CPAP users face-to-face and talk with them may go a long way in alleviating some of sense of isolation you are currently feeling.

And finally, let me say it again: You need to do all three of these things at the same time before you will start sleeping well every single night.

Best of luck,
RobySue

I cannot go to sleep with a CPAP mask.

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