how do you know when you are cpap intolerant?

(Diagnosed march 2012 w severe OSA. AHI 43.3 Sleep center sent me home w/ phillips respironics Remstar auto A flex system one w/ humidifier & nasal pillows, have likely had undiagnosed osa for at least 25 years)
I have been on an apap for six weeks. I have the case out to pack it up and take it back to the hospital. I really dont think I can take it any more.
Im a VERY light sleeper, I barely sleep at all with it on. I wake up upset, angry, agitated, so tired I cant function. Before I got this, I was high functioning,
and very happy, very busy.. I of course felt like a truck ran over me in the morning, sometimes my heart would race, and my stomach would pulsate if
I slept on my back, but after an hour, and a good breakfast (no caffeine) I was ready for the day.. I was the energizer bunny, and did not, could not take
a nap.. Now my life has turned to sh**. I have never used a sleep aid in my life, although I was a light sleeper and a terrible insomniac.. adding this
machine to THAT mix has been a nightmare. I cant go on like this, I think Im going to die from lack of sleep if I keep wearing this thing, or Im going
to lose my mind. My pulmanary doctor tried two herbal sleep aids, and two meds, none worked, she said there were no more pharmacological choices
for me. I have practiced good sleep hygiene, and all that entails for the last four months, I just dont think I can get into a deep sleep with this blowing
air into me. I do have some health related issues due to the OSA, that I did not know about until I saw a cardiologist.... which the apap if it worked
for me would probably solve.. but its not working for me. Im feeling doomed.
Below is my sleep study. I want my life back the way it was, even if its going to be shorter, I cant take living like this.. its just been getting worse
not better. Im more tired every day I wear it, more upset, more agitated, irratable, angry, memory loss.. Im feeling completely disabled and my mind has turned to a mushball.. My lack of sleep is causing serious problems in my home. I know it can be form of torture, and now i know why.
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Patient: 53 year old female
Patients estimate of sleep latency 120 minutes, patients estimate of sleep duration 2 hours.. Patient reported quality and quantity of sleep same as usual.
Epworth score: 0
Sleep data:
time in bed 6.1 hrs
total sleep time: 66.5 minutes
stage one sleep 2.0 minutes 3.0%
stage two sleep 60.5 minutes 91%
stage three sleep 4.0 minutes 6%
Rem 0.0 minutes 0.0%
WASO (wake time after sleep onset) 174.5 minutes or 2.9 hours
sleep latency 125.5 minutes or 2.09 hours to get to sleep
Sleep effienciency 18.1 %

Respirtory events:
Central 4, obstructive 28, mixed 0, hypopnea 16
total number of events 48
maximum seconds 29.5

oximetry data: desaturation events index 33.4 lowest SA02 81%
arousal data: total number of arousals 86
leg movement arousals 0.0
snoring arousals 0.0
arousal index 77.6/hr
spontaneous arousals 41
respiratory arousals 45, respiratory arousal index 40. 6 /hr

Comments: Respiratory events were obstructive with AHI of 43.3. Baseline oxygen saturation normal, oxygen desaturation index was 33.4/hr severely increased. Desaturation events were intermittant. Sleep structure and quality was fragmented due to respiratory events.. Conclusion: severe sleep apnea based on limited sleep time.
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Elena,

It sounds like you're having a pretty rough go of it. If it's any consolation, every one on this board has struggled with treatment in some fashion. If you'd like the help of the members of this forum, give us some information about how your treatment is not working and the things you've tried to make it work.

It takes time to figure out the right combo.

I'm always surprised when someone is given a diagnosis based on an hour of sleep at a lab, but, what do I know...

Did you have a titration? Have you tried Ambien? What about it is making it difficult to sleep? There's a host of reasons why people have trouble sleeping with it, and some of them they are aware of (e.g., mask hurts, mask leaks, pressure changes wake them, noise of the machine, etc.) and some they may not be aware of. There may be solutions to some of your issues.

What are your numbers now? What are your settings? Pressure? APAP or CPAP? What kind of mask are you using?
Maybe you are using a setting or a mask that just isn't right for you.
You are probably going through perimenopause now too, right? (sorry if that's a bit personal), but perimenopause can really mess up your sleep.
I'm thinking your mask/settings just aren't the right ones.
Also, maybe you have central apneas, or something like alpha wave intrusions?
Perhaps you are a mouth breather and you've been losing all your air out your mouth........which means you haven't been receiving treatment.
Treatment is so much easier to tolerate if its helping!
I fear your treatment hasn't been well managed......but maybe I'm wrong.
Please give us more info.
I woke up all night long on APAP, but slept through the night on CPAP.

Diagnosed march 2012

YOU ARE FROM THE FUTURE!!!

All joking aside, is it entirely the feeling of the mask on your face? or is it the air pressure thats bothering you? or is it other things?

Sharing what exactly is making it hard for you at night is what we need to hear.

There are things you can do to make it better depending on the problem. Different masks, different settings, etc, that can greatly improve your experience.

Have you been able to view any of your machines reports yet? That would also provide clues. Maybe your pressure is wrong? Who knows, but without hard data, most solutions would just be shot in the dark guesses.

Have you tried the Aflex/Cflex+ settings on your machine? I find they really help me be more comfortable.

I so feel your pain, everything you are saying is the same with me. I feel I cannot do this either.
It's the worst thing I've ever had to do and when it is time to go to bed, I dread it, I get so depressed
and so fearful because I know I should be using this stupid thing and it just bothers me so badly.
What are we going to do? Maybe between the two of us or anyone else that can shed light on this
subject we can somehow get thru it. When I went to the sleep study, I slept for 58 minutes and the
rest of the time, I laid there wishing the night was over.
I also heard of some other options to the mask. There is surgery which sounds absolutely HORRIBLE
and it doesn't fix the problem. There is also a mouth piece which brings your jaw forward so your throat
doesn't close. You can also try sleeping on your side. Looking forward to hearing from you. We can get
through this.

The literal reply to your question:
After you've tried a number different machines and many different masks.

You most active thread is the one oh which you reported that your machine, the Respironics PR blew air puffs at you waking you.

Try another auto. They function differently, and the therapy they give can feel very very different to some people. You may find the S9 easier to sleep with; or the Sandman Auto.

O.

first of all, thanks so much for your replys.. thank you!

Okay, lets see.. I was sent home with a auto pap for a titration for a week.. I THINK my pressure was 10.5 or 11. Nobody told me, I
heard that mentioned. Now I have the system one, its very nice.. I sleep with the nasal pillows which I have gotten used to, and tape over my mouth.
I think its on a flex.. I could not breath against the titration machine they gave me for a week, so they gave me one I could breath against.. the one
I have now.. the respironics system on a flex.
I have tried valarian root, melatonin,
trazadone, and restoril, all failed.. My pulmanary specialist will not prescribe ambien to newly diagnosed severe osa patients unless
they have had it before.. and I never have.. Anyway.. I would take me hours to get to sleep, then when I did fall asleep,
the machine would wake me up.. its the air blowing in me, I think. Also of course the pressure pulses (puffs of air) go off when Im awake too because I forget
to inhale a lot. My machine is very quiet, I listen to sounds of rain to go to sleep.
Already when thru meno pause with flying colors, Im one of the lucky ones.. never had a hot flash, dont even know what what would feel like,
and nothing really changed.. that happened years ago..
My pulmanary specialist said I had to wear this the rest of my life, there were no alternatives such as mouth pieces, etc, as the problem was
my extremely tiny throat opening.. also had a jaw set back, large tongue, large adnoids, large tonsils, long uvula, and I love sing.. so surgery.. eeek.
I feel like Im awake most of the time Im wearing this thing, and I know THAT is not getting therapy..
I just turned the dial on my apap, and here is what the readings say under info:
I am still in rental phase and do not own this machine:
AHI seven day average 2.7
thirty day average: 3.5
system leaks 0.0 (which is weird because ONE night I tried to sleep with a full face mask and it leaked into my eyes so badly I had vision problems
the next morning.. also on one night I tried a sleep aid, I woke up with the nasal pillows MISSING!
90 percent pressure seven day average 9.3
thirty day average 9.8
periodic breathing 0.0
I dont know what these numbers mean, but that was on the info screen when I pressed it.. I
I have two weeks before my next appt with my pulmanary specialist.. and that is when we have to decide whether to buy this machine on
rental.. we have a huge deductable eight thousand, and I have had to pay for the sleep study and all the equipment out of pocket.. If I quit, I wont
have to buy the machine, and no more bills for doctor visits associated with it. Aside from that, Im just not sleeping that well while Im wearing it.
However, I wanted this so badly to work, I thought it would help with health issues that seem to be associated with it..
thanks all of you for trying to help me, I do so appreciate it.

Hi, you said you sleep on your back... just wondering if you realize it's the worst position for provoking apneas? Most of us try all kinds of tricks to keep from doing it. Also, you said your stomach pulsated when you did it - have you had an internist look at you recently and check for an aortic aneurysm - they're really quite rare, but can be very serious and your having pulsations makes me wonder what's going on.

I see Im not alone in having this trouble.. so sorry some of you are going thru it too..
I try to sleep on my side as much as possible, they had me start on my back in the sleep test.. and that is where I guess they got me sleeping.
I sleep on my stomach when I dont use the machine.
I dont mind the nose pillows.. I thought I had the very best machine already.. and its an autopap, and so easy to breath against.. but
I should try other machines?
I was so upset I was going to pack it up before my next visit with the doctor.. but thats because one doesnt make the most rational decisions
when they are sleep deprived..
thanks for all your help everyone
ps. ended up going to a cardiologist before I got diagnosed with osa because of irregular heart beat and pulsating in abdomen when
waking up in the morning.. the pulsating, yes was my aorta working overtime because I was being deprived of oxygen.. I am now under the
care of a cardiologist, had all the tests you could possibly have, and my aorta seems to be okay.. They have never seen my heart beat irregularly
as I have never been asleep long enough for them to see what crazy stuff happens if I go into Rem..

elena88 wrote: I have two weeks before my next appt with my pulmanary specialist.. and that is when we have to decide whether to buy this machine on
rental.. we have a huge deductable eight thousand, and I have had to pay for the sleep study and all the equipment out of pocket.. If I quit, I wont
have to buy the machine, and no more bills for doctor visits associated with it. Aside from that, Im just not sleeping that well while Im wearing it.
However, I wanted this so badly to work, I thought it would help with health issues that seem to be associated with it..
thanks all of you for trying to help me, I do so appreciate it.

Well look at it this way - you can spend the time effort and money up front or you and your family can deal with you after the stroke or heart attack. I can assure you, after having watched my mother struggle after a stroke, that this treatment is a piece of cake and really cheap compared with that. Are you prepared to have your husband or kids change your diapers? Is your life insurance upto date so you won't leave your family destitute?

I paid for my equipment out of pocket too. I prefer to be alive and intelligent, that is worth more then $2000 Cdn investment to me.

The next step to try is to see a hypnotherapist to help you with the mental sleep issues. And you can get an prescription for ambien from any PCP or just point out to him that no cpap is worse then taking Ambien.

"Well look at it this way - you can spend the time effort and money up front or you and your family can deal with you after the stroke or heart attack. I can assure you, after having watched my mother struggle after a stroke, that this treatment is a piece of cake and really cheap compared with that. Are you prepared to have your husband or kids change your diapers? Is your life insurance upto date so you won't leave your family destitute?

I paid for my equipment out of pocket too. I prefer to be alive and intelligent, that is worth more then $2000 Cdn investment to me.

The next step to try is to see a hypnotherapist to help you with the mental sleep issues. And you can get an prescription for ambien from any PCP or just point out to him that no cpap is worse then taking Ambien. "
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Yes, my life insurance is up to date, I dont want to have to have anyone take care of me.. I dont want to have a stroke, is it so certain that will
happen without cpap? I actually feel my health deteriorating on apap... like my life force is ebbing away..
I cannot be hypnotized, I know how to hypnotize people, it will not work on me.
okay, I guess, I have a problem, and I just have to deal with it, and quit whining about it. Its just that you can get pretty freaky without sleeping,
I mean, its gotten really bad around here. I have been married twenty two years, and things are BAD.. Ive gone from being a happy perky fun person,
to beging someone who could choke a muppet when I wake up in the morning..

Maybe you can't do it all at once, but you have to think of one thing at a time that's bugging you and keeping you from sleeping and tackle one at a time.

Is there one thing that's the worst? Perhaps those puffs of air? I think those can be turned off by turning off the ramp feature--others know better than I.

AHI (Apnea Hypopnea Index) is the average number of times you stopped breathing (apnea) or breathed very shallowly (hyponea) per hour. I think anything under 5 is good, so you are doing well with that. Your pressures are fairly low, which is also good. You are doing great from the apnea standpoint!

I have the same machine, and it just doesn't indicate leaks in the patient menu. I think a "large leak" needs to be a total blowout of your mask for an hour or something for it to register You just have to deal with the leaks as they come.

You might do better with a different machine, but it could be a whole new thing to get used to. If you can't stop the air puffs that are driving you nuts, then you might think about a different machine.

BTW, do you have the humidifier? I found that really "softens" the airflow and it was much more comfortable with the humidifier than without, even when I only have the humidifier on the lowest setting. It's about 100 times quieter as well.

You seem to be getting very stressed about not sleeping. Sometimes the best way to deal with that is to not even try.

Put your CPAP on and watch a movie or listen to a book on tape in bed. Nothing too stimulating, but something you can really get interested in to take the pressure off yourself to sleep. Just relax and focus on the movie or book. Take your focus OFF the machine and trying to sleep. If you fall asleep, fine, if you don't--fine. It may take a night or two before your body is ready to go into a more relaxed state when you are hooked up to your CPAP. Right now your body seems to want to respond by "fight or flight" and it's going to need reprogramming.

Meanwhile, one by one, keep eliminating the annoyances as much as possible.

The fact that you have aorta pressure and heart problems as a result of your apnea makes it worthwhile to pursue this, as hard as it is. Your life, and the quality of your life, depend on it. The CPAP is an annoyance--a major stroke or dissected aneurysm WILL be thousands of times worse. And you WOULD meet your deductible then.

hi Elena, first of all I would like to say you have a GREAT attitude! Despite being nearly ready to give up, you have come HERE seeking HELP and ANSWERS. That willingness alone can be the key factor in SUCCEEDING in this cpap business!

In addition to what others have already said, I'd like to make one suggestion. Just for a few of nights, try the machine in a fixed CPAP mode. That will it will not change pressures , and will probably disable that puff of air too. It may not stop all your events, but at least that way you will have one less thing distracting you (the changing pressure). I would suggest somewhere between the 9.3 and the 9.8 averages you report, for example 9.5 cm. And before you go jumping into that right away, try putting on the CPAP during the day, while you're wide away, to get used to it.

Make sure that your mask really does have a good fit. If you move around, does it stay in place? Are (even small) leaks waking you up at night?

Are you using a humidifier, and is perhaps the rain-out (drops of water hitting your face from the mask) waking you up?

Could you also possibly have circadian rhythm problems? Have you had insomnia for a long time? Can you normally keep a normal sleep schedule (bed by 10pm-midnight, awake 6-8am), or do you tend to go to bed very late/wake up late on weekends/holidays?

Elena.

One of the main reasons people fail at this is because of their attitude. Going into therapy telling yourself that this will help you live a better life and that with practice it will seem second nature to you. Getting used to the air pressure can be done by wearing the mask with the machine on while you are doing something like watching TV or reading a book. Do this an hour a day will help your body to acclimate to the air pressure and the feeling of the mask on your face. From here you need to tell yourself that your Cpap is like wearing glasses and that there is no shame in using it. Do this every day until you get accustomed to the therapy and sleep more soundly. If you have been a light sleeper for a long time it is probably because you were not reaching REM sleep and thus were not getting sleep that would replenish you.

As far as giving up, I would highly recommend that you exhaust all options before doing that. I had a sister who died of a stroke at 49 years of age and her doctor said if she had used her Cpap regularly it probably wouldn’t have happened. When you deprive your blood of oxygen you will be at a higher risk for many things like strokes and heart attacks. This isn’t a small risk proved by life insurance companies not wanting to do business with people who have Sleep Apnea.

This forum has a lot of great people who can help support you with your therapy and in no time you will be passing on your knowledge to newbies who will be every bit as discouraged as you are now. Good luck and keep pushing for your improved health.