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1 month after CPAP. How I'm doing now (hint: not good)
#21
RE: 1 month after CPAP. How I'm doing now (hint: not good)
(01-20-2019, 08:52 PM)SarcasticDave94 Wrote: Hi Broomstick,

I'm not going to state, or even infer, that your breathing and support needs are identical to mine, but I can't help but hear some similarities of my past experiences.

Note that I've got stage two COPD, which may skew things a bit, just not sure how exactly.

Thumbnail sketch:

CPAP set to 18, difficulty in using, slept for less than two hours at a time, very difficult to breathe out.

Those complaints got me a BPAP, but it was worse as it caused greater fatigue. Later, it was revealed I have Complex Apnea, of which the BPAP made worse (by the pressure changes I believe).

Next, a visit to the pulmonary doctors office to discuss the issue and mentioning the ASV. The nurse and Doctor on call agreed ASV was a need for me. Follow-up titration for ASV, and my demand for the ResMed ASV afterwards.

Conclusion is that I'm doing much better now. Less fatigued and can sleep with my machine for 6 or more hours and feeling rested.

Coffee

PS

Sorry this iPad version won't let me edit...I just realized I posted similarly here beforehand. Nevertheless, I'll just let the information stand as is. Hope it helps.

lots-o-coffee
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice. Even a 1,000 mile trip requires a good first step. My recommended first steps include getting good walking shoes, 1 great cup of coffee, and a good GPS.

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#22
RE: 1 month after CPAP. How I'm doing now (hint: not good)
You have my sympathies. You doctor sounds terrible and I would get a different one if at all possible. You really should complain to your insurance company and his clinic/hospital board  I think about the treatment you got from this guy.

I am experiencing similar frustrations but my apnea isn’t as bad as yours. I trade one form of sleeplessness for another.  I hope you can get some answers here. :-(
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#23
RE: 1 month after CPAP. How I'm doing now (hint: not good)
(01-19-2019, 12:25 PM)herbm Wrote: What are your current settings and your EPR?...
My settings are in my profile on the right. Subject to change at any time. Nasal mask just won't work for me at this time.

(01-19-2019, 09:17 PM)vsheline Wrote: Hi Broomstick,

You wrote “I set EPR all the way to 3 yesterday and was able to stay asleep for a solid 4 hours this time

The two things which tend to worsen Central Apneas are (1) higher pressure and (2) higher EPR. (In a bilevel or ASV machine, EPR is renamed Pressure Support, which is simply the difference between the lower exhalation pressure, called EPAP, versus the higher inhalation pressure, called IPAP.)

Now that you have increased EPR (and seen improvement), I suggest keeping the settings the same for a week or longer, to gather data on how many CAs versus OAs you are getting.  Even without changing the settings, our AHI and sleep quality tends to vary from one night to the next.

It may be that you would benefit greatly from much higher Pressure Support than 3, but because you may be more susceptible to CAs than most people, perhaps that might cause your CAs to skyrocket unacceptably, unless you were using an ASV class machine, which is able to treat (and thereby totally prevent) CAs.

I think a sleeping aid could be essential for the success of your ASV titration. Good luck. 

Take care,
—Vaughn
I don't believe I have CA at all. I'm consistently banging out AHIs of 1.5. (That apnea is always a central though). 1.5 AHI yet I wake up after 4 hours and have a hard time breathing with the machine at that point. I simply can't get a big enough volume of air WITH the CPAP after I wake up. I have to take it off to breath properly. I've always felt like my problem was one continuous hypopnea rather than multiple complete obstructions.

(01-20-2019, 08:52 PM)SarcasticDave94 Wrote: Hi Broomstick,

I'm not going to state, or even infer, that your breathing and support needs are identical to mine, but I can't help but hear some similarities of my past experiences.

Note that I've got stage two COPD, which may skew things a bit, just not sure how exactly.

Thumbnail sketch:

CPAP set to 18, difficulty in using, slept for less than two hours at a time, very difficult to breathe out.

Those complaints got me a BPAP, but it was worse as it caused greater fatigue. Later, it was revealed I have Complex Apnea, of which the BPAP made worse (by the pressure changes I believe).

Next, a visit to the pulmonary doctors office to discuss the issue and mentioning the ASV. The nurse and Doctor on call agreed ASV was a need for me. Follow-up titration for ASV, and my demand for the ResMed ASV afterwards.

Conclusion is that I'm doing much better now. Less fatigued and can sleep with my machine for 6 or more hours and feeling rested.

Coffee
I have a feeling that I need a much bigger split between IPAP and EPAP that CPAP can afford to give. Looks like BIPAP or ASV might be the answer. Keep in mind that I never got a proper titration. That will happen Feb 4.

(01-20-2019, 11:56 PM)terriergal Wrote: You have my sympathies. You doctor sounds terrible and I would get a different one if at all possible...

Already have.
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#24
RE: 1 month after CPAP. How I'm doing now (hint: not good)
Update:

I never got to do the sleep study because night time is simply not my natural sleeping time. No matter what I do, I slip back into becoming tired at 6:00am and waking up past 3:00pm.

They said that the complex studies (I assume that means ASV) are only done at night. Since I don't appear to have true CA, I want to try to get my thing changed to a simple BIPAP titration so I can do it in the morning.

I think the simple EPAP relief will help me rest better. I just read the post here regarding insomnia patients doing better on BIPAP. I've never been good at falling asleep.

http://www.apneaboard.com/forums/Thread-...iew?page=2


My sleep appears to be broken up into thirds no matter how I rest (CPAP on or off). I wake up twice either way.

The machine is probably helping way more than I think. I just have trouble going back to sleep with it.

I feel like I can't get enough air with even just the mask on after I wake up. I was wondering if a bigger hose might help. I feel like I need a bigger volume of air, not more pressure. I breathe so much better with that thing off my face.

The mask, I think, also pushes your jaw back. I think the mouth piece, or perhaps an operation to push it forward, will help me tremendously in my case. My front teeth definitely are more forward than my bottom (overbite all these years?)

15cm and higher seems to keep the AHI down. My numbers often look something like this:

AHI : 1.8
Total AI: 1.8
Central AI: 1.8

All 3 often the same number but not always.

14cm gave me the same low numbers too but once I felt 2 sudden suffocations in my dream.

The 10+ central AI I used to have went away ever since I bumped up the pressure from 10 to 15.

I put it all the way to 20 and the centrals did not increase significantly. Although today the machine reads:

AHI: 3.9
Total AI: 3.5
Central AI: 3.1

It's as if the maximum pressure actually caused slightly MORE obstructions than lower pressure. But these results aren't scientific or consistent.

I just hope I'm not screwing myself up long term with the high pressure. I figure maybe if I get myself used to 20cm, my body will consider exhaling at 15cm to be a piece of cake and let me rest better with it.

That's all for today. Good day.
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#25
RE: 1 month after CPAP. How I'm doing now (hint: not good)
Update: 

Feb 2nd sleep study canceled. I am simply not a night sleeper. Much easier to sleep in the daytime. This new sleep lab gave me grief about scheduling a day study. They just lost a customer. Back to the original sleep lab that treated me with dignity and respect. Insurance paperwork processing.

I took a turn for the worse recently. I woke up suffocating even with 15-20cm. It was horrible. Very very bad. The last minute of so of sleep, I could feel my breathing getting cut off. It feels way WORSE to suffocate on the CPAP than it does without it. Oh, and the machine automatically boosted the pressure to 18.

Since then, things have continued as usual. Go to bed with CPAP. Wake up after 2 hours. Not able to breathe with CPAP anymore after waking up. Resume sleeping with no CPAP.

But then I wake up feeling like my chest was being crushed. Its a brutal feeling (not nearly as bad as feeling yourself suffocating in real-time while asleep). Oh, and I continued to struggle to breathe (hypopnea) while laying down after waking up.

Now this would happen on and off every now and then. But this was EVERY night. And even WITH the CPAP, my AHI was high. 

Again, I feel like I took a turn for the worst.

But last night something magical happened. After the usual sleeping without the CPAP, I DIDN'T wake up with my chest feeling crushed. I checked the CPAP and the results said I slept for 2 hours with zero AHI (before resuming sleep without the CPAP).

Yeah. I don't know what to say.

I woke up on my back kind of. Unlike everyone else, I seem to breathe BETTER sleeping on my back. Or at least partially on back.

Notice how THICK my flow rate was. Everyone else has a nice THICK bushy flow rate. My line is often thin. No one has ever commented on that but I don't think that is good at all. I feel like that must be hypopnea or something because no one else has a flow rate like that.


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#26
RE: 1 month after CPAP. How I'm doing now (hint: not good)
Provide a couple of 2-minute expansion views of your centrals so we can see what is happening.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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#27
RE: 1 month after CPAP. How I'm doing now (hint: not good)
I posted the wrong screenshot for "worst night". I fixed it now. That was a wild night. A real anomaly. But I did take a turn for the worse ever since that day (Feb 26). I included a bonus close up of the end of that night where I felt myself suffocating. Even bumping the pressure to 19cm didn't save me.


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#28
RE: 1 month after CPAP. How I'm doing now (hint: not good)
You are going to feel as if your lungs don't fully empty. That is because they don't. The air sacks don't fully close on Xpap. By the tidal volume and minute vent column, you are getting enough air and if the mask isn't defective, you wouldn't be suffocating. It just feels like it because it feels different. I would even go as far as turning off the ramp to get use to your treatment pressure. I think you have a tight flow rate because of the high 15cm, the breathing irregularities before and after are a hiccup, that can be sleep wake junk.

In all probability you may have too high of a min pressure, your med, 95% and max are all 15. With an auto I like to have the min at least a couple of CM under the 95%. If you really need MIN 15. You may feel better on a BPAP with greater PS, (like EPR) It will still feel like your lungs don't empty though.
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
For auto-cpap from machine data, or software. Set the min pressure at 'med' median pressure or 90% OR 2cm below 95% pressure. max pressure at 20cm for now. Forum will help you fine tune settings
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#29
RE: 1 month after CPAP. How I'm doing now (hint: not good)
Finally received the call to schedule the ASV sleep study. Will get back to them tomorrow to schedule.

In the mean time. I've been trying a lower pressure. Still no good.

I don't believe these are centrals. Tell me I'm not wrong. Isn't this all hypopnea?

Edit: Nevermind the AHI. I still have a big problem. I can't last on this thing much longer than this. Haven't suffocated with this machine in a while now but I've been very careful about my position. (I think my position is what caused the extreme suffocating with the machine. I keep picturing a bent paper towel roll. NO amount of air will get by a blockage like that).

Right after this, I went back to sleep and woke up with big problems. So please don't look at the AHI and think this is petty. I can't see myself lasting 8 hours on this like everyone else.


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#30
RE: 1 month after CPAP. How I'm doing now (hint: not good)
The difference between a central and a hypopnea is the reduction is flow. A CA can occur, even if you are breathing at a low volume. I believe the criteria are 30% reduction in airflow for hypopnea and 80% for apnea for at least 10 seconds. An apnea can be scored without a complete cessation of breathing, and in cases where the airway remains open as shown on your graphs, the apnea will be scored as central or clear-airway (CA).
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