Don't Want to Die (follow up)

[Elfman99]

I should start by saying that I am grateful that a group of complete strangers would take the time to offer so much help and support. I do appreciate everyone who took the time to offer up some wisdom, even the "harsh" comments. After reading my original post, it really was pretty dramatic and a little over the top. I had just experienced a pretty life changing event and my mortality came flying at me and my emotions got the best of me. I had what I thought was a heart attack and ended up in the hospital for 3 days while they ran tests. While I was there the nurses commented on just how many times I completely stop breathing while I am sleeping. I was eventually diagnosed with Nutcracker Esophagus (yes ---I know horrible name) which on its own is fairly benign, but the nurses reported back to my doctor about the not breathing thing and that in turn began the renewed interest on his part with regards to the Apnea. I had to admit that I was not using the therapy and he looked at my wife and asked how much life insurance I had. That brings me to my post on Thursday.
I have read all of your posts several times over the weekend and have put the mask back on over the last three nights. Still haven’t slept, but I am using a lot your suggestions to try and figure out just what drives me nuts about this therapy. I believe my room is ideal for sleeping; cool, dark quiet. I have experienced no difference by introducing white noise or music. I have determined that the pressure is fine. It is the one thing that I enjoy. I love the cool air. It all comes down to the mask. The second and third night I consciously keep track of my every movement while in bed. I am constantly adjusting the straps, pulling them away from my face, shifting the mask from one slight spot to another, lifting the mask up, poking my lower lip from under the mask, adjusting the nasal pillows, sticking my fingers under the straps and mask, scratching itches under the mask. Obviously, even though I have tried 4 masks now, this one is not for me. I thought it was the best of the bunch, but I think I need the least intrusive mask there is. I have called my doctor for an appointment to try a new mask. The least amount of straps and the least amount of plastic touching my face. I have always avoided the nasal only devices because I breathe a lot through my mouth, but I think that has got to be my best bet. Looking at pictures the Fisher & Paykel Opus 360 Nasal Pillows appears really basic. One strap, no mask. Just the nasal pillows. Anyone have in experience with this device? Anyone have any better ideas? I am open to any and all suggestions, at this point.
Once again, I want to express my sincere thanks for all of your help to date. Thanks for caring and letting me vent. And thanks in advance for any help in the future.

[Julie]

Hi, I hate to burst that bubble, but unless you're planning on taping long-term, you're just going to throw good money after bad. You can't just ignore the mouth breathing thing, and would be better off trying whatever it takes to live with the FF mask. Maybe you could list on paper the ideas you've been given re that, and then really sort out what you've tried and given up on, and see if maybe something deserves a last try, maybe with a new twist or something you've learned since dropping it.

[BeanMeScot]

You don't mention trying to use it before you want to go to sleep. Spend a week or so spending every waking moment you are sitting down in your home, wearing the mask with the machine on. The entire evening while you watch TV, after dinner, whenever you are sitting for more than a couple of minutes, put it on and use it. I think this will do the most to get past the "I have a foreign thing on my face" issues.

[bonjour]

I haven't used them, but what about a hybrid mask? Comments anyone?

https://www.cpap.com/productpage/RespCa ... -Mask.html

[drubin007]

nasal pillows and a chin strap? Thats what i do.

I, too am a mouth breather, and have tried taping one night but could not stop yawning long enough to go to sleep. Lucky for me, using the nose mask (initially) and having air forced into me helped me keep my mouth closed enough to get the job done... I am using a respironics chin strap now as well to "remind" me to keep my trap shut... I also try to keep my tongue in the elevated position to block any air from using my mouth. Based on my leak rates, it works...

stick with it, it can be done.

[BleepingBeauty]

I should start by saying that I am grateful that a group of complete strangers would take the time to offer so much help and support. I do appreciate everyone who took the time to offer up some wisdom, even the "harsh" comments. After reading my original post, it really was pretty dramatic and a little over the top. I had just experienced a pretty life changing event and my mortality came flying at me and my emotions got the best of me. I had what I thought was a heart attack and ended up in the hospital for 3 days while they ran tests. While I was there the nurses commented on just how many times I completely stop breathing while I am sleeping. I was eventually diagnosed with Nutcracker Esophagus (yes ---I know horrible name) which on its own is fairly benign, but the nurses reported back to my doctor about the not breathing thing and that in turn began the renewed interest on his part with regards to the Apnea. I had to admit that I was not using the therapy and he looked at my wife and asked how much life insurance I had. That brings me to my post on Thursday.

I'm sorry you had to go through all of that, but if that's what it took to make you realize that using the machine regularly will allow you to live a longer and healthier life, then so be it. Sounds to me like the nurses and the doctor are at the top of their respective games, and you were "scared straight" when it comes to your therapy. Good!

I think the other suggestions offered so far are good ones. DO wear the mask with the machine on when you're just relaxing at home, long before bedtime. That'll help you get used to it so it's not a foreign concept when you lay down to sleep. As to the itching, others have posted that they vigorously scrub their face wherever the mask touches it before they go to bed. That helps to desensitize the area so you won't be needing to scratch so much.

I think I need the least intrusive mask there is. I have called my doctor for an appointment to try a new mask. The least amount of straps and the least amount of plastic touching my face.

You might want to have a look at the CPAP-Pro mask (or the NOMASK). It has absolutely NO headgear at all. It's a nasal pillows system that stays in place via a boil-n-bite mouthpiece that fits your upper teeth. Fair warning, though: It's fairly expensive to maintain re: replacement parts. But it IS comfortable and, as I said, there's no headgear. It may not stop you from mouth-breathing, but it might, since the mouthpiece might make mouth-breathing harder to achieve.

If you insist on a nasal mask and you do mouth-breathe, you only have a couple of options. Taping your mouth closed (or using denture adhesive strips on your lips to achieve the same result) or wearing a chinstrap. Otherwise, consider a full-face mask or a hybrid (mouth mask and nasal pillows), which does the same thing as a FFM but with less mask material.

There are lots of mask options out there. Your job is to find the one that works best for you, and we all wish you good luck in that regard.

[dsm]

I should start by saying that I am grateful that a group of complete strangers would take the time to offer so much help and support. I do appreciate everyone who took the time to offer up some wisdom, even the "harsh" comments. After reading my original post, it really was pretty dramatic and a little over the top. I had just experienced a pretty life changing event and my mortality came flying at me and my emotions got the best of me. I had what I thought was a heart attack and ended up in the hospital for 3 days while they ran tests. While I was there the nurses commented on just how many times I completely stop breathing while I am sleeping. I was eventually diagnosed with Nutcracker Esophagus (yes ---I know horrible name) which on its own is fairly benign, but the nurses reported back to my doctor about the not breathing thing and that in turn began the renewed interest on his part with regards to the Apnea. I had to admit that I was not using the therapy and he looked at my wife and asked how much life insurance I had. That brings me to my post on Thursday.
I have read all of your posts several times over the weekend and have put the mask back on over the last three nights. Still haven’t slept, but I am using a lot your suggestions to try and figure out just what drives me nuts about this therapy. I believe my room is ideal for sleeping; cool, dark quiet. I have experienced no difference by introducing white noise or music. I have determined that the pressure is fine. It is the one thing that I enjoy. I love the cool air. It all comes down to the mask. The second and third night I consciously keep track of my every movement while in bed. I am constantly adjusting the straps, pulling them away from my face, shifting the mask from one slight spot to another, lifting the mask up, poking my lower lip from under the mask, adjusting the nasal pillows, sticking my fingers under the straps and mask, scratching itches under the mask. Obviously, even though I have tried 4 masks now, this one is not for me. I thought it was the best of the bunch, but I think I need the least intrusive mask there is. I have called my doctor for an appointment to try a new mask. The least amount of straps and the least amount of plastic touching my face. I have always avoided the nasal only devices because I breathe a lot through my mouth, but I think that has got to be my best bet. Looking at pictures the Fisher & Paykel Opus 360 Nasal Pillows appears really basic. One strap, no mask. Just the nasal pillows. Anyone have in experience with this device? Anyone have any better ideas? I am open to any and all suggestions, at this point.
Once again, I want to express my sincere thanks for all of your help to date. Thanks for caring and letting me vent. And thanks in advance for any help in the future.

Elfman,

Great to hear you taking this head on - reading your informative post brought a smile to my face as it just reminded me of my early days of therapy, you described it all so well.

Just keep discussing the issues & there will always be people here to offer helpful advice.

I am pretty sure that part of your initial challenge is the 'seriousness' as well as the newness. It creates its own anxiety compounded by our desire for it all to work really well. Do keep telling yourself that the mask & machine are 'friends' that really want to help you but in the case of masks, some just aren't able to, but still maintain the notion that even those masks were really trying to help. You may need to do a bit of experimenting but it does eventually sort itself out and your mind & body adapt to the situation & one day you will realize it has become second nature to use.

Good luck.

DSM

[plr66]

I'd like to underscore the mouth leaking/breathing issue as critical to prevent, if you are considering a mask such as the Mirage Swift II or Swift LT or OptiLife or Headrest--all of which are highly rated by folks on this forum.

And I have to respectfully disagree with a couple of our great members here. A chin strap will not prevent mouth flutters/leaking/breathing. Nor will training your tongue to rest on the roof of your mouth. Just will not prevent the loss of your cpap air through your mouth. As I and others have suggested before, clench your teeth as if you had a leather chin strap cinched up to hold your jaws together. Then blow out some air. Easy? Yup. Next, place your tongue firmly on the roof of your mouth directly behind your front teeth or anywhere, for that matter. Then blow out some air. Easy? Yup.

Sorry for being pedantic, everybody, but our bodies relax when we are asleep, by definition and function. And we further have pressured air involved, rather than just plain old breathing. So if you think you do not leak air through your mouth with a nasal mask, it is my opinion that this is fooling yourself. I know. I fooled myself for about a week when I frist started this trip, firmly believing that I did not ever open my mouth to allow air to escape while sleeping.

So I believe that taping in one form or another is a requirement if you need and want effective therapy and use one of the nasal masks. I personally was amazed at how easily I adjusted to the taping thing. But I was incredibly motivated to live and regain even some of the quality of my life.

Many here will strongly recommend that you use a FFM (full face mask) rather than go through the taping routine.

Elfman99, whatever you try, keep focused on the positive outcome you're doing all this to accomplish for yourself. And all the best.

[Sleepless in Indiana]

I am able to seal off the mouth leaks with just my tounge. And the software I use shows that I stay sealed all though the night. I can even hold the seal with my lips slightly apart. So I guess that everyone is a little different. And I do much better with a nasal mask, over a full-face mask. Might be worth your trying a couple of different masks.

[ozij]

Glad to see you back, and ready to work, elfman!!!

I couldn't stand anything touching my face in the begining - though it's different for me now.
I shudderered at the mere thought of having a nasal pillows mask -- and yet those turned out to give me the best therapy.
The one caveat: I'm a mouth breather, and I have to tape.

My favorite mask is the Headrest (made by Aeiomed). I get a great seal with a deconstructed Headrest held on to my face by two pantyhose straps -- I got used to the touch eventually. I used it for almost 2 years without deconstructing it - with only the "rubber band fix". viewtopic.php?p=291728#p291728

My alternative mask is the Opus 360. I'm a side sleeper -- the OPUS side strap are originally cushioned, but a. not enough for me and b. I didn't like the way their material felt on my cheeks - I bought padacheek's cheep pads to cushion those side straps -- and padacheeks added the additional cushioning I need and feel very pleasant against my cheek. What is more, they and were delivered (across an ocean and a sea) within a few days of the order -- wonderful pads and wonderful service. http://www.padacheeks.com .

The seal I get with the Opus isn't as good as I get with Headrest - I leave the mask hose floating, not connected to the headgear (I would if the hose were a bit longer...), and every now and then when I turn over the pillows work out a bit and leak -- but the pillows are very soft and nice, and all in all, it's a good mask - very light and unintrusive. Try it.

Tell us what you decide to try, how it works, what bothers you -- we'll try to help.

O.

[ivory]

You might also check out the nasal aire II. It has nasal prongs rather than pillows but you can wear it in lots of different ways (including no headgear, like me). I can't tolerate most masks due to facial nerve damage (having anything resting on a large portion of my face is excruciating) but the nasal aire II is tolerable and less restrictive, so it works.
https://www.cpap.com/productpage.php?PNum=2672&PAID=517

If it helps - I absolutely hated my sleep studies. I felt 1000 times worse after wearing the mask in the lab than on any normal day. I wore a normal mask like the tech suggested (rather than nasal pillows, etc.) and had to sleep on my back all night. In the morning I felt groggy, hung over and my back was killing me. I was so tired that I had to leave work early the next day!

My doc ordered the CPAP anyway and challenged me to try it for 30 days. I decided that the only way I'd be able to convince him to figure out a different solution for me would be to do what he said - wear it religiously for 30 days and tell him how much worse I felt. So I got the CPAP equipment the next day and started wearing it that night. I didn't even bother with trying to work up to wearing it all night - I figured the best way for me would be to tough it out so that I could show him that the CPAP therapy wouldn't work for me even though I had done everything thing he asked.

After 2 weeks, I realized that I didn't hate it and actually felt much better. Sure showed him!

[ww]

To get serious, go buy a ResMed UMFF or Quattro that fits!!!!! Then go buy the software for your machine so you can see what works and what does not. It is always nice to have several masks and the software so you can easily tell when you are getting your therapy and when you are not. I spent a couple of months trying everything and now can go shave, scrub face, crawl into bed and never think about it again that night.

I was like most others in that my life was falling apart and I had no idea why. The results from the sleep test were completely wrong, and after spending a couple of months getting everything straightened out, things started getting better and have stayed that way for over a year now!!!

[Treehorn]

Next, place your tongue firmly on the roof of your mouth directly behind your front teeth or anywhere, for that matter. Then blow out some air. Easy? Yup.

Plr66, I tried your test and you are right I can breath out with my teeth clenched but I was amazed that I cannot breath out a lick of air with my tounge forward and prssed directly behind my front teeth. I was not expecting that!

I guess different results for different people. I am told that the tounge can be "taught" to stay in place by some people.

I am currently taping but though I would post my results from your little "test".

[LSAT]

plr66 said.........."And I have to respectfully disagree with a couple of our great members here. A chin strap will not prevent mouth flutters/leaking/breathing. Nor will training your tongue to rest on the roof of your mouth. Just will not prevent the loss of your cpap air through your mouth. As I and others have suggested before, clench your teeth as if you had a leather chin strap cinched up to hold your jaws together. Then blow out some air. Easy? Yup. Next, place your tongue firmly on the roof of your mouth directly behind your front teeth or anywhere, for that matter. Then blow out some air. Easy? Yup."


I'm another advocate for the chinstrap...actually the papCAP. I would prefer a FF mask, but I couldn't hack it. I have not tried any chinstrap except for the papCAP and it works...I don't even need it uncomfortably tight . It holds my mouth and lips closed enough to stop the air leaks. I don't have a data capable machine, but my wife is a very light sleeper and prior to the papCAP, she was constantly awakened by the hisss of air leaking from my mouth...now everthing is coool.

[ozij]

Next, place your tongue firmly on the roof of your mouth directly behind your front teeth or anywhere, for that matter. Then blow out some air. Easy? Yup.

Plr66, I tried your test and you are right I can breath out with my teeth clenched but I was amazed that I cannot breath out a lick of air with my tounge forward and prssed directly behind my front teeth. I was not expecting that!

I guess different results for different people. I am told that the tounge can be "taught" to stay in place by some people.

I am currently taping but though I would post my results from your little "test".

All it takes to breath out with my tongue against my front teeth is to relax the tongue a bit - happens to me often when I sleep. My tongue remains firmly against my front teeth, and the air flows merrily down its sides which have flopped.

O.