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1 month after CPAP. How I'm doing now (hint: not good)
#31
RE: 1 month after CPAP. How I'm doing now (hint: not good)
Backing up SleepRider here are the "official" definitions

Event Definition Apnea, Hypopnea, Flow Limitation

  • Apnea: 80% to 100% reduction in airflow for >= 10 seconds

  • Hypopnea: 50% to 80% reduction in airflow for >= 10 seconds

  • Flow Limitation: <50% reduction in airflow for >= 10 seconds
These events may be either Obstructive or Central in nature They represent different degrees of similar events. All of these may be disruptive. While Central Hypopneas are important in diagnosing Central.Mixed.Complex apnea they are not monitored in most Sleep Studies.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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#32
RE: 1 month after CPAP. How I'm doing now (hint: not good)
I'm not a smart person so I didn't really understand.

I assume central apnea was when someone simply doesn't take a breath at all and the line stays flat.

Are you gentlemen saying that central apnea can put your diaphragm into some sort of fribulation mode where you take several half breaths?

Edit: This still doesn't explain why I wake up experiencing hypopnea until I sit up, only to have it resume the minute I lay back down.

Does my diaphragm get zapped with electricity at inappropriate times where it becomes fatigued upon waking up and struggles to handle the extra load of pushing against my stomach while laying down?
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#33
RE: 1 month after CPAP. How I'm doing now (hint: not good)
ASV sleep study scheduled for April 8.


I'm concerned that even that won't help. And I'm disturbed that not a single other person seems to have experienced what is happening to me. 

This is the best example I can show. I wake up after 1.5 hours drowning. Like my lungs can't compete against the pressure (which didn't bother me going to bed) anymore. My breathing gets real shallow and starts sputtering, then I wake up. 

What good is an AHI of 4 if I can only last 1.5 hours. After that I HAVE to take it off. I simply can't breath with the machine anymore. Its not something I can put my mind to. Something physically wrong is waking me.

Alright. I'm gonna stop bothering everyone. This will probably be my last post until April 8. Theres simply nothing else I can do.


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#34
RE: 1 month after CPAP. How I'm doing now (hint: not good)
That ASV study is right around the corner, and i think that is the best thing at this point.
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#35
RE: 1 month after CPAP. How I'm doing now (hint: not good)
Hi Broomstick,

I think an ASV machine will provide you relief.

You appear to need greater Pressure Support (PS), which an ASV machine can supply without causing a Central Apneas.

Pressure Support tends to produce more restful sleep, because PS does for us part (and on an ASV machine PS can do for us all) of the work of breathing.

Before the ASV titration, I suggest you ask for a prescription sleeping aid to be available for the titration, or maybe you’ll have to get a prescription and fill it before the titration, to ensure that you will be able to fall asleep and stay asleep.

And if possible totally avoid sleeping in, or napping, before the titration.

Good luck!
Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.  The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea.
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#36
RE: 1 month after CPAP. How I'm doing now (hint: not good)
Have you tried removing you tonsils and opening up your nasal canal? I've used my CPAP for over 3 years now I went to an ENT doctor and he recommended removing my tonsils because they we huge I'm talking the size of a pair of kidneys and he opened my nasal passages.  It's been two weeks now I'm still using my CPAP it's great I don't slobber or snore anymore because I don't have to breathe from my mouth.
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#37
RE: 1 month after CPAP. How I'm doing now (hint: not good)
I've had about enough. Its always a problem. After staying up over 24 hours, I couldn't sleep for the titration. I had enough energy to run a marathon. In my opinion, the sleep lab should be equipped to deal with this. You're experts in SLEEP, right? If theres a pill to take, why don't YOU have one on standby? 


Having a nasty miserable technician didn't help.

As for the machine:

Its a Phillips which I heard bad things about it matching your breath (compared to resmed)

The bilevel was definitely better than CPAP. But it was inconsistent and often kept blowing annoying puffs of air in my face. That was with my NATURAL breathing. I would hardly breathe at all and the thing would regularly blow at me every 5 seconds. If I manually breathed (which is HARD WORK because you have to consciously think about breathing and make an exaggerated effort), the machine would NOT blow the annoying puff. But its impossible to try to sleep like that. The machine should be matching ME, not me trying to follow the machine.

I wonder if things could have been adjusted. Perhaps starting with a lower gentle consistent bilevel and turning on the ASV once I fall asleep. But there was no use asking that miserable waste of life to help change something. This was someone who wanted to be in control and do everything their way. This individual wouldn't let me tighten my own mask. And when I asked for more humidity, I was basically told no. The dry air later started to bother me.

What really irritated me is when this individual said something like "You really did a lot of research".

Me: I sure did.

Person: Well don't think you know everything.

Well I certainly know more than YOU you scumbag. Theres not a single thing any doctor, including this person, has told me that I didn't already know. Tell me something I haven't heard before and maybe I'll change my mind.

I Can't believe I waited all this time for THIS. 

I wasted my time. Months of jumping through hoops and patiently waiting. I can figure out the machine myself thanks to the internet. Doctors don't hold all the knowledge anymore. The internet has helped me WAY more than every doctor I've ever seen.

If I don't get a prescription for at least a BIPAP, I'm just gonna get my own from the black market and not play anymore stupid games. Something I should have probably done from the gecko (sic).
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#38
RE: 1 month after CPAP. How I'm doing now (hint: not good)
Well after a horrible sleep study experience, I went to my primary doctor and came away with a prescription for a BiPAP.

The Bilevel version of my AirSense 10 would be the Resmed AirCurve 10 VAuto, I assume.

After a while of not using not using the regular CPAP, I gave it another whirl. 

Today I managed to wake up after a whopping 4.9 hours.

4.9 Hours
AHI 2.6 (All central, as always)
2 Litter Leak
14-20 auto remained at 14cm when I woke up
Woke up NOT struggling to breathe
Woke up on BACK


I seem to do better when I wake up on my back (rarely). And I think my position is important to me NOT feeling myself suffocating in a dream. I've been good for a long while since carefully watching my sleep position.

Still, my biggest problem is that I can't take this machine anymore once I wake up. Thankfully today I got almost 5 hours out of it before waking up (then going back to sleep for almost 5 more hours with NO machine). But once I wake up, I can't take it anymore. I can breathe so much better with that mask off my face. 


I'm hoping a BIPAP will make a difference.
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#39
RE: 1 month after CPAP. How I'm doing now (hint: not good)
Still trying to figure this out.

I think one reason I can't handle the mask once waking up is that I need to get used to it more. I often wake up feeling a relief taking it off. Like my lungs are tired from having to remain open from constant pressure. It feels good to relieve that pressure. It has come to my attention that perhaps not everyone else feels this way. I've spent a lot of time with the machine while awake, trying to "stretch" my lungs somehow.

I think its helped because I've been waking up without finding out that I've pulled the hose off now.

But the other reason might be shortness of breath. I've read that central apnea will cause people to wake up short of breath. I wish I could find more information about this. Perhaps thats the other reason I can't take the pressure anymore once I wake up. I probably really do wake up breathing different and the cpap is screwing with me.

While awake, before sleeping, I know that I can breath so much better without the mask, but I don't NEED to. No one NEEDS to breathe at their maximum while resting. Well, waking up with shorter breath possibly pushes me over the edge to a point where being limited by the machine becomes no longer acceptable.

I've been practicing at 12cm while watching television for hours awake. NO WAY am I gonna subject myself to anything more than that for hours while awake without bipap.

So I went to bed with a constant 12cm and I did manage to keep the mask on and fall back to sleep once waking up a few times. But I paid the price of struggling to breathe every time I woke up. It wasn't pretty. Also, I know that I was using the incorrect pressure, (15 seems is my magic number) but I wanted to keep things consistent with what I've been practicing.

This time I will ramp from 12 to 15 and try again. When I wake up, I will reset the ramp from 12 again and try to resume sleeping.
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