Don't want to Die

[Elfman99]

We are pretty sure my mother died from Apnea related complications although at the time they said she just died peacefully in her sleep. I have 4 older sisters, 2 of whom have been diagnosed with sleep apnea and I have as well. I have not posted on the site for many months because I had just given up on the treatment. As a NEWBIE you all gave me some great advice, but I guess I am just a freak...none worked. I have had the equipment on my night stand for two years and during the first 10 months only fell asleep once wearing the mask. I have tried 4 or 5 mask styles and CPAP and BIPAP. I cannot sleep with this stuff on my face. I just quit trying. I could not work from the sleep deprivation and my life was hell for months. I am scared. I now have high blood pressure and I fear that I am heading towards that "peacefully in my sleep" obituary. My doctor has prescribed 4 different brands of sleep medication. Each one works fine without the mask on, but when I gear up it's as if I took nothing at all. I have been to a Psychologist wondering if the intolerance to the equipment was all in my head and found no answers there. Just the same old "Sleep Hygiene" stuff. So I am turning once again to all of you. The real experts. I don't want to die. I HAVE TRIED. I was so determined at one point to not give up that I literally went 9 days without out sleeping. (the living hell part). My doctor says that there is surgery as an alternative. Does anyone have any info? I am not too keen on the idea of surgery, but would prefer it to death. Sorry to be rambling. I'm just desperate for any help. It's horrible to lay down each night and wonder if you’re going to wake up..

[roster]

....... Just the same old "Sleep Hygiene" stuff. ......

And what do you do about sleep hygiene?

[Elfman99]

Those things have never really been an issue with me. I don't drink caffeinated beverages, don't drink Alcohol, I have a dark bedroom that I keep cool. I exercise in the morning rather than at night. i try and do something relaxing before going to bed like reading etc. As I said..all the typical Sleep Hygiene stuff.

[Yoda]

I am so sorry. I can tell you are scared. I am still a newbie, but I had similar problems when I started. I did not sleep for days. But, after a while, I started sleeping some. I now sleep about 3 or 4 hours - wake up and go back to sleep for another 2 or so. A couple of times, I slept through the night. It is a beginning. Keep at it. We will make it.

I don't know anything about the surgery. Perhaps someone else can tell you about their experiences. I would much rather try the drug free, cut free solution.

[Muse-Inc]

So Elfman, what precisely is it about the mask that is a problem? Feeling of suffocation or claustrophobia? Too uncomfortable? Have you had another titration study to see if the pressure is set properly for you? Maybe you need a a chin strap.

[dsm]

Yes you are going to die & your obituary might include "knew about OSA as the cause but procrastinated for so long it was too late"

DSM

PS - (but, it could also read "died peacefully after a long life extended by effective cpap therapy")

PPS - I too am quite sure my mother died from the negative side effects of undiagnosed OSA - she was a shocking snorer for the last 30 years of her life.

PPPS - knowing you need to do something & failing to do it isn't a good excuse when it comes to why to die

[bearcatx16]

Elfman99,

Have you tried wearing the mask while reading or watching TV to get used to it, set the machine to a pressure that is comfortable. The first time if you make it a minute, great, keep doing a minute and then try to increase it another minute until you become comfortable with it. Then try taking a nap with the mask again times are not important, just try to improve until you reach the point of being comfortable taking the mask to bed. Sit on the bed, put on the mask, start the machine, relax, breath, then recline.

Good luck,

Fred

[6PtStar]

Elfman99,

Have you tried wearing the mask while reading or watching TV to get used to it, set the machine to a pressure that is comfortable. The first time if you make it a minute, great, keep doing a minute and then try to increase it another minute until you become comfortable with it. Then try taking a nap with the mask again times are not important, just try to improve until you reach the point of being comfortable taking the mask to bed. Sit on the bed, put on the mask, start the machine, relax, breath, then recline.

Good luck,

Fred

Very good advise!! You might give it a try. A lot better than giving up!!

Jerry

P.S. We would like to keep you around also!!

[plr66]

I'd first say to you that you need to ditch the excuse of being a "freak." You are not so unique or special that you are somehow beyond dealing with what it takes to adjust to cpap therapy. I'd say it's time to work on changing your attitude and thinking-pattern toward the mask and the therapy. Sounds like you have gotten yourself to a point of pretty high anxiety about this thing. Yes you should be very concerned. But the anxiety about dying is probably working against you.

I can only offer my humble experience of having approached this with absolute conviction that the cpap was offering me a LIFE. I can't over-emphasize this. I was so far gone with symptoms of confusion, memory loss, inability to reason--all like early Alzheimers--that I just told myself that this therapy was the solution and the only way that I could regain any of myself for the rest of what I would hope to be my lifespan.

You do have to talk to yourself and work up an enthusiasm for your cpap. You need to relax. Do all the desenitization suggestions that are recommended here. I couldn't wait to put on my mask from the first night. It was like I was breathing life back into myself. Not trying to be dramatic. It's just what worked for me.

[RiverDave]

Elfman,

I hate to sound harsh, but you say you have "tried" - you haven't "tried" hard enough. Either you want to make it work or you don't. Either you will wear the mask or you won't. You have to find it within yourself, no one can find it for you.

Good luck to you.

[timbalionguy]

You can also do as I did-- treat it as an engineering problem. Deal with each issue objectively. That is what the astronauts and engineers of Apollo 13 did, and they got home.

[JeffH]

Elfman,

I hate to sound harsh, but you say you have "tried" - you haven't "tried" hard enough. Either you want to make it work or you don't. Either you will wear the mask or you won't. You have to find it within yourself, no one can find it for you.

Good luck to you.

This really is the truth. I had to make a decision that this was going to work for me and it does. Has for over 10 years now. If you want to live, you will need to make a decision.

The mask was my problem. My machine came with a mask that covered my nose and I couldn't handle that. Got the latest and greatest and brand new nasal pillow system at the time (an Adams) and it was more comfortable to me. Wore that mask until last summer with the Swift LT came out.

Good luck

JeffH

[kteague]

Elfman99,

Inability to fall asleep in spite of our efforts is a very frustrating thing. Sleep is not something we can generally will to happen. We can just consistently provide ourselves an appropriate environment and ample opportunity for sleep to occur.

One thing you mentioned concerns me - it's not a good idea to take those sleep meds then sleep unprotected - they likely cause your apnea to worsen. Could removing the pressure to sleep from the equation possibly help? If you can wear your gear with machine running while sitting in a comfy recliner and watching TV (with no pressure to sleep), maybe it could surprise you and happen. If it doesn't happen, the time is not wasted as at least you will have had some time invested in getting used to it.

I did not take to this treatment quickly. In retrospect I realize that my adjustment time was prolonged by my "part time" efforts, but at the time I didn't know how to do it any differently - things just weren't working and it was complicated by other sleep disorders. If you can identify anything specific that's bothering you, address the concerns one by one.

I don't know how you are going to get past this, just that you know you need to keep trying. Makes me wonder if hypnotism would be of any benefit in your situation. Hope you get past this as soon as possible. Best wishes.

Kathy

[DoriC]

Are you using the ramp feature so you might be able to fall asleep at a lower pressure? And how about EPR to make it easier to exhale? Keep reading the posts here and don't give up.

[ozij]

Grow up, Elfman -- stop kidding yourself. CPAP in not going to keep you from dieing. Nothing is going to keep you from dieing. Surgery won't either.

Surgery helps in some cases of sleep apnea - not in the majority. The type of surgery that is most successful is called maxilo-mandibular advancement -- and it does not help everyone. Here's an interview with one of the foremost MMA surgeons, Dr. Kasey Li. http://www.wellsphere.com/insomnia-slee ... ure/651183

As long as you approach CPAP as something that will keep you from dieing -- you won't get used to it, because deep inside, you know that sooner or later you will die. As your mother did. And dieing peacefully in you sleep is not such a bad idea - when you think of the alternative ways of dieing -- in pain, deblitated, incontinent, unable to speak, unable to turn yourself in your bed -- etc.

Once you admit that you will die no matter how hard you fight it, and that dieing in peacefully in sleep in your own bed is one of the better ways of dieing, you can start thinking about the quality of your life, and how you want to spend the days /months /years left to you until you die.

Each one of us who uses CPAP realized that CPAP would have a great possitive on the quality of the time left to us until we die.

Your post implies nothing in life is worse than CPAP. Maybe you're right. It's your life, and you should know better than anyone in the world what your life is about.
Take a good look at your life at it is.
Remember you're going to die no matter what you do.

And start thinking about all the things you can do to make your life better until then. If you're a good canditate for successful surgery - go for it. I wouldn't go for the type of surgery called UPPP - because it is rarely successful.

If anyone were to tell me "use this machine / mask, it will keep you from dieing", I wouldn't believe them either.

O.