how do you know when you are cpap intolerant?

I moved out of the bedroom because my husband thought I needed a quiet place to sleep with NO distractions. I think YOU are an expert, I MISS them, and their distractions..
I miss the snoring, and the dog licking, and the tv drama sound tracks.. I do miss it.. Hubby wasn’t keen on the air blowing in his face, but now he says he will just put a pillow between us.
Yes, I want to click my heels three times and go home to my own bed!

My poor husband was going out to the couch to sleep in our cold living room (first he had to wake up and throw the dog off the couch) almost every night because my snoring was so bad. So one of my big goals for CPAP was that he could sleep in the bed without waking because of my snoring. I made him sleep on the couch one more night while I grappled with the first night on CPAP, but since then, he's been sleeping soundly beside me--doesn't even complain of the air conditioning if I turn his way. A major victory for me and a major motivator to keep going with CPAP. I was afraid that once he moved out of our bed permanently that emotional connection we have would be affected too.

elena88 wrote:
I cannot be hypnotized, I know how to hypnotize people, it will not work on me.

Hi Elena

If it is true that nothing comes from nothing, then being a light sleeper has a cause, or causes.

BlackSpinner mentioned hypnosis as a possible solution. I agree.

However you say it will not work for you. That may well be true. But there is a saying in hypnotism circles, or there used to be, that only stupid people cannot be hypnotised. If there is truth in that statement, then certainly you qualify as being able to be hypnotised. There may be other reasons for your statement, however; I pass this on just in case it may help.

You have a great attitude, and that is all important. The following has helped me -

viewtopic.php?f=1&t=44824&p=400479#p400479

cheers

Mars

elena88 wrote:Are we supposed to change our sleep cycle or just go with it, Ive always been a "night owl" maybe if I quit going to bed at eleven, I wouldn’t be laying there for hours!

If your life works with the later sleep cycle I wouldn't even try to change it. Unfortunately my 5am to 1pm sleep time creates some problems for me so I am working on slowly shifting it forward a couple of hours. From what I have learned while seeing a sleep psychologist, it is a good thing I don't need to shift my sleep cycle to a 'normal' one, just enough that I can be at work by 11am or noon.

Eleena,
Hitting the ramp again and again in one sure way of keeping yourself from falling asleep.
Each time you hit ramp you are actually making sure you'll be at suboptimal pressure -- thus ensuring you'll have breathing events waking you up. Its a vicious cycle.

I was very wound up when I started CPAP therapy. I had trouble exhaling, and was frightened of the incoming air, so I though ramp would help. But I was very wrong about that. The ramp's pressure change bothered me, and furthermore, since I did not trust my ability to exhale against the pressure, I would lie there very vigilant, waiting for the pressure to get the maximum, so I could see if I could tolerate it and fall asleep. Ridiculous, I know. Eventually I realized I would have to bite the bullet and try to sleep at the highest pressure I could tolerate - I stopped using ramp.

I too join the suggestion for you to try fixed pressure.

I also want to suggest you start a systematic process of training yourself to sleep at pressure.
Sleep apnea therapy started out with tracheotomies -- a hole cut in your throat bypassing all those obstructions. One day you're cut, the next you're breathing properly. This "one night should do it" paradigm has unfortunately been carried on to CPAP. Some of us need to train our body/brain in the use of CPAP. Start out at the highest pressure you can breathe out against comfortably, try it for a few nights - then raise it gently - enough to make it a slight challenge, without getting yourself into a panic. Raise it again after about a week - or when you feel you can take another small challenge. If it takes a month to build up to the pressure you need - that would still be better than giving up therapy entirely.

Years of being choked as we sleep have made some of us very wary of any breathing disturbance/obstruction, and our brain at first interprets the incoming air as another indication of imminent choking -- of course it won't let us sleep through that. When your highly protective brain starts protesting against the pressure, try telling it firmly and in a very loving way that the pressure is there to h help you breathe; that brain of yours has literally been saving your life for years, by snapping you out of sleep when your oxygenation drops. It's not going to drop its vigilance now, just because you're thinking of raindrops. Don't ignore the clamoring - thank your brain and mind for wanting to keep you awake, tell it you are now aware of the danger and are taking care of it, and that it can now rest, because you are finally getting help for that problem. That most primitive part of you brain really has to trust you before it will let go and let you sleep -- and it won't trust you as long as it senses you're trying to ignore it or shut it up.

" One foot in front of the other, slogging through the day. It will get better."

I have to tell all of you, I had the apap case out on the counter, I had it in my schedule to return the machine today, but I just decided to post my frustration on the board just in case.. and now, tonight,
because of all of you.. I'm back in my bedroom with my husband and the dog and something to watch on tv.. I'm also not going to try to force myself to go to bed at a time I have never used in my life..
some of the sleep hygiene stuff was not meant for me, that is for sure! You all have helped me so much, its hard to explain how much I appreciate all the time and effort you have put into
helping me not give up... and I now know when someone might be cpap intolerant, its when they don’t have special people like you to come in and save them! THANK YOU!
********************************************************************************

" I just added my machine to my room and kept everything else the same. "

This is exactly what I SHOULD have done, thank you.. and thanks for all the tips on the pillows and gear.
I was happy with my sleep schedule before, a bit weird, but it worked for me.
*************************************************************************

" I made him sleep on the couch one more night while I grappled with the first night on CPAP "

This was the thinking behind our decision too.. that I would LEARN how to deal with this before I was going to sleep with my husband. I totally relate to what you went thru, your hubby
tossing the dog off the sofa, so he could sleep. The only one who has not been been disrupted by this is our cat, go figure..
My husband snores when he is on his back, so I would constantly turn him over, he didn’t want me to be disturbed doing that, but I think I can just make him sleep on his side if I get out
our big u shaped pillow..
*******************************************************************

" Hi Elena

If it is true that nothing comes from nothing, then being a light sleeper has a cause, or causes.
BlackSpinner mentioned hypnosis as a possible solution. I agree.
However you say it will not work for you. That may well be true. But there is a saying in hypnotism circles, or there used to be, that only stupid people cannot be hypnotized. If there is truth in that statement, then certainly you qualify as being able to be hypnotized. There may be other reasons for your statement, however; I pass this on just in case it may help. "

Good point! I think being a light sleeper in my case might in part be genetic, it runs in my family on my mother's side. I have had reasons to be that way too, keeping a watchful eye on husband sleeping as he
had a heart attack a year ago.. but he has snored for all the years I have been with him too..
Hypnosis is probably a good idea, and when I said it would not work on me, I know it would not because I used to hypnotize my friends in high school after I saw a hypnotist in action in our gym at
an assembly.. it was so easy, it was scary, and I even gave them post hypnotic suggestions.. I would never let anyone do that to me as it’s a trust issue, having done it to someone else, its also
a control issue.. I hate to admit this, but I was young, and it seemed funny, but I hypnotized my girlfriend to forget her name the first day of school! OMG, so you can see why I would have "issues" with
hypnotism.. I did a lot more than that.. and kharma is I'm sure waiting to bite me in the behind for that prank among others..

************************************
"From what I have learned while seeing a sleep psychologist, it is a good thing I don't need to shift my sleep cycle to a 'normal' one, just enough that I can be at work by 11am or noon "

That is excellent advice, and I'm not going to switch my sleep time upside down because its supposedly good "sleep hygiene.. It was a disaster for me.. Glad you are figuring out yours!
*****************************************************************************************************************************************

" Eleena,
Hitting the ramp again and again in one sure way of keeping yourself from falling asleep.
Each time you hit ramp you are actually making sure you'll be at suboptimal pressure -- thus ensuring you'll have breathing events waking you up. Its a vicious cycle"

WELL, I certainly had this going on ass backwards.. thanks everyone for straightening me out about the pressure situation.. NO wonder I have been having so much trouble!

"Years of being choked as we sleep have made some of us very wary of any breathing disturbance/obstruction, and our brain at first interprets the incoming air as another indication of imminent choking -- of course it won't let us sleep through that. When your highly protective brain starts protesting against the pressure, try telling it firmly and in a very loving way that the pressure is there to h help you breathe; that brain of yours has literally been saving your life for years, by snapping you out of sleep when your oxygenation drops. It's not going to drop its vigilance now, just because you're thinking of raindrops. Don't ignore the clamoring - thank your brain and mind for wanting to keep you awake, tell it you are now aware of the danger and are taking care of it, and that it can now rest, because you are finally getting help for that problem. That most primitive part of you brain really has to trust you before it will let go and let you sleep -- and it won't trust you as long as it senses you're trying to ignore it or shut it up. "

This explains why those of us with OSA do NOT want to go to sleep.. the nightmare which lies in wait, but I had NEVER thought of brain interpreting the air as another form of choking, but that’s exactly
what it is.. when I was trying to breath against the pressure, I FELT like I was being suffocated.. no wonder my brain was freaking out about it! This is such an excellent point, thank you!
I'm going to have to make RE MAKE friends with my brain and the rest of my body, and have all of "us" sort this out together..

**********************************************************
I WILL LET YOU KNOW HOW tomorrow goes! I clicked my heels I'm home tonight! Thanks to all of you!
elena

Well i have been going through a period of adjusting to the machine. Trying to get the right mask. I also find that I am sleeping longer and i feel more tired when i get up. But i do have more energy during the day then i used to. The bottom line is that it may take some time to adjust to the gear. Then once you get that hammered out and have the right mask it may take a lot of time to pay off your sleep debt you accumulated from suffocating in your sleep for years. I believe i am still paying that. Working swing shifts doesn't help that situation for me. But thats another story. I dont like to think about a treatment for the rest of my life. I like to make it more manageable by figuring out what i need to do to make this work for today. I am uncomfortable sleeping on my side though i try. My AHI rate can be high at times. The thing is though I am determined to get my good sleep health back. I believe in the equipment and the advice I get here. If they can make it work so can I. I don't have it right yet. But I am further ahead than behind compared to where I was before i started therapy. I don't wake up to that suffocating feeling of my wife holding a pillow to my face to stop the snoring. Joking

I hope you keep trying and you get the gear working for you because i think it will really help if you just try and figure out what you need in settings and gear. I wish you luck and hope you find the rest and peace of mind you seek soon.

Elena, and anyone else, if you want some info on how to shift your circadian rhythm back to a "socially acceptable schedule" PM me with your email address and I will send you the full article: "A practical approach to circadian rhythm sleep disorders"
Bjorn Bjorvatn, Stale Pallesen, A practical approach to circadian rhythm sleep disorders, Sleep Medicine Reviews, Volume 13, Issue 1, February 2009, Pages 47-60

Bjørn Bjorvatn & Ståle Pallesen wrote:Summary

Circadian rhythm sleep disorders are common in clinical practice. The disorders covered in this review are delayed sleep phase disorder, advanced sleep phase disorder, free-running, irregular sleep–wake rhythm, jet lag disorder and shift work disorder. Bright light treatment and exogenous melatonin administration are considered to be the treatments of choice for these circadian rhythm sleep disorders. Circadian phase needs to be estimated in order to time the treatments appropriately. Inappropriately timed bright light and melatonin will likely worsen the condition. Measurements of core body temperature or endogenous melatonin rhythms will objectively assess circadian phase; however, such measurements are seldom or never used in a busy clinical practice. This review will focus on how to estimate circadian phase based on a careful patient history. Based on such estimations of circadian phase, we will recommend appropriate timing of bright light and/or melatonin in the different circadian rhythm sleep disorders. We hope this practical approach and simple recommendations will stimulate clinicians to treat patients with circadian rhythm sleep disorders.

This is of course assuming you WANT to shift your schedule back. If the 'weird' sleep/wake times actually WORK for you, no reason to go messing with it If I could I would, but I need to be on a socially acceptable schedule for work.

Elena, sounds like your husband may also benefit from CPAP therapy. Once you're settled into yours, maybe you can help him too...?

elena88 wrote:This explains why those of us with OSA do NOT want to go to sleep.. the nightmare which lies in wait, but I had NEVER thought of brain interpreting the air as another form of choking, but that’s exactlywhat it is..

Oh yeahhhhhhh I know that feeling!

You go girl, I hope you had some better sleep last night

" don't like to think about a treatment for the rest of my life. I like to make it more manageable by figuring out what i need to do to make this work for today. "

THAT is something I DID not consider, but excellent point! How can I make it work TODAY.. it’s a bit much to chew off to consider "the rest of your life" when you are a newbie. When I heard the doctor say that, I really didn’t hear anything else come out of her mouth.. the world just stopped..




"Circadian phase needs to be estimated in order to time the treatments appropriately. Inappropriately timed bright light and melatonin will likely worsen the condition "


WELL, this is fascinating! I did try melatonin, 3mg sublingually and it took it at 10:30pm a few weeks ago, as I was planning to go to bed at eleven.. now I know how stupid that is, because I don’t go to sleep till one or two am! Anyway, about thirty or forty minutes later, I'm lying in bed, and I get what feels an ice pick stabbing me thru the eye into my brain. I shot out of bed, and almost pulled the machine off the table.. IN MY EYE? well it was behind my eye, but geez! I never get headaches, ever, so this what so weird, then it went to my left eye, for a few seconds , then it was gone.. it lasted less than a minute.. just some acute weird reaction.. wonder if I took the melatonin at the wrong time??? Im extremely sensitive to chemicals, medications, and even vitamins and such, so maybe that was it.
Anyway, I went to bed at one am last night, put my machine back with husband and dog, watched "chronicles of riddick" ( I love sci fi) and I fell asleep. Only woke up one time, in the middle of the night.. It was sooooooo nice to be "home" again! The dog was glomming, and licking, hubby was snoring lightly (on his side, darn!) and it was heaven!
I practiced this morning letting the machine get up to pressure while I was awake, and told myself all sorts of positive things about that, trying to reset my flight or fight predicament. I am so hopeful now, I really think with all your help, I like many others here are going to succeed! THANK YOU, EACH AND EVERY ONE OF YOU!


"Elena, sounds like your husband may also benefit from CPAP therapy. Once you're settled into yours, maybe you can help him too...?"

Well, funny thing about that, I dragged HIM to the doctor last year about his episodes of not breathing, and he told his doctor I was a chronic insomniac,
then he told my doctor.. he was tested on the oximeter, then so was I, and we got a call they both came back "normal"..
Turns out they weren't, because I WASN’T sleeping during mine! So, when they figured that out, I got sent to the pulmonologist, then into the sleep study.
My husband finally got a call to see my pulmonologist when they looked at his oximeter again, and he does have a sheet to have a sleep study, the doctor
said it wasn’t urgent though.. After seeing what has happened with me, he is not too keen on getting his sleep study, but its going to happen this year, I know that.

Anyway, thanks for all your help, you all are life savers, literally!