1 month after CPAP. How I'm doing now (hint: not good)

[Broomstick]

Where I'm at now. 1-15-2019

I went to the doctor in late November. Second and final time visiting him. He was a scumbag. No compassion. He just yelled at me, said I didn't use the machine and said "What do you want me to do ?????!!!!" This doctor can rot in the deepest bowels of hell. Garbage human. Oh well.

I immediately scheduled with a better doctor for Dec 26. I probably should have been more aggressive with them and demanded a sooner date. Oh well.

The date eventually came and...no doctor available. (Glad I called!). So they tried to schedule me for late January. This is when I got fresh with them. I used my sharp tongue to give them a lashing *whip sound* and Jan 2nd magically became available.

The doctor was 426% better than that other scuzzball and took the time to listen. But he was still clueless about SleepyHead™ and refused to look at it. None of these doctors have an answer when I tell them how I sometimes continue to struggle to breathe laying down after I wake up. "No gabbish" (capisce) they all say. Well I think I have the answer (I'll explain below). He also had trouble getting data off the CPAP machine.

Hello!!!! I got all the data right here! Look at the FFFF-ing SleepyHead™.

He scheduled another appointment in 3 months (I'll be dead by then) and said he would call me when he got ahold of the sleep study results.

The next day he told me exactly what I didn't want to hear. Blah blah. There were a lot of centrals on the sleep study (in addition to obstructive) and that he scheduled me for an ASV sleep study.

I didn't, and still don't, believe that I have a central apnea problem. I often wake up suffocating real bad and sometimes continue to struggle when laying down.

My theory: There is something impeding my breathing. Perhaps a continuous hypopnea that lasts until my diaphragm gets tired of struggling to breathe then wakes me up. The diaphram has to work harder while laying down so perhaps thats why I struggle to breathe laying down after I wake up and that sitting up makes me breathe easier.

Perhaps if someone (doctor) bothered to look at the FFFF-ing SleepyHead™, someone could help make sense of this.

Oh, and by "wake up" I don't mean "wake up ready to go". I mean I wake up every 2-3 hours. The doctor ascribed that to poor sleeping habits that I'm trying to improve but it still happens.

Anyway, I threw a hail mary and decided to try things MY way. I cranked the machine up to a constant 15cm (from 10cm) and...

The AHI was 2-3.

This was a good sign. But I thought it might be a fluke. I kept at it and so far I've been consistently cranking out AHIs under 5.

Still, this machine hasn't been the answer to all my problems. I still keep waking up after about 2 hours. I may be able to get back to sleep and get 2 more hours with the machine. BUT, eventually I am tired enough that I can sleep with no machine, but the machine keeps me up. So I'll lay down and get 2 more hours with no CPAP...for a total of about 6 hours of sleep a day.

Sometimes I'll wake up with a "too much air" feeling which could be me getting used to the new (higher) pressure, OR...I could be having my "waking up suffocating" episodes but they are being masked (no pun intended) by the pressure of the machine so that I'm not sure what the hell I'm feeling anymore.

Oh, and ,for me, the APAP mode is GARBAGE. FFFFF the automatic pressure. I initially had it set to 15 auto when I first got it and it didn't help me. I had to force the machine to stay at a constant 15cm. It frustrates me to see other people posting about their very first night with CPAP and how it helped them immediately while every day continues to be a living hell for me.

I need to get ahold of this doctor but I have a problem making phone calls as it is. It is especially hard to pick up the phone when I'm too tired to think.

So yeah, this is where I'm at 2.5 months after receiving the CPAP machine.

Oh, and I'm also keeping a detailed log of my sleeping habbits (times, ahi, and how I felt when I woke up)

[Sleeprider]

ASV titration may work out well, and be comfortable enough to sleep.  If you can have a sleep aid prescribed to enable you to sleep during the test, I like your odds better.

As I said December 1st, I'll repeat today...try it, you might like it.

[Broomstick]

I'm gonna get yelled at if I make a new post so I'm gonna ask this here and hope it doesn't go unnoticed.

Is it possible that someone's diaphragm gets fatigued by working harder to exhale all night against a high pressure that it eventually causes them to wake up struggling to breathe?

Today (yesterday?) I knocked out a 2.8 AHI and woke up struggling to breathe. I had to take the mask off. I couldn't take anymore and needed a break from the air. Is this a thing??? Could it be that I need a BIPAP machine?

[Sleeprider]

I'm gonna get yelled at if I make a new post so I'm gonna ask this here and hope it doesn't go unnoticed.

Is it possible that someone's diaphragm gets fatigued by working harder to exhale all night against a high pressure that it eventually causes them to wake up struggling to breathe?

Today (yesterday?) I knocked out a 2.8 AHI and woke up struggling to breathe. I had to take the mask off. I couldn't take anymore and needed a break from the air. Is this a thing??? Could it be that I need a BIPAP machine?

What actually happens is that exhalation is normally a passive respiratory task, meaning exhale occurs when the diaphram relaxes and the expanded chest naturally compresses and the air in the lungs is exhaled. Respiratory work occurs during inhale.  Bilevel machines provide pressure support that reduces the effort of inspiration.  It is the contrast between low exhale pressure (EPAP) and higher inhale pressure (IPAP) that makes breathing less laborious or tiring. In cases where a restrictive lung condition or obesity or neurological chest impairment causes hypoventilation, pressure support can do most of the work of respiration, and in the case of central apnea, bilevel pressure support can do all of the work of respiration performing a non-invasive ventilation function and causing a breath.  Bilevel can overcome flow limitations and reduce hypopnea and improve ventilation tidal volume (the amount of air in the lungs exhaled during each breath). 

The sense of "struggling to breathe" should not occur with treated obstructive apnea, and can be a symptom of inadequate pressure to keep the airway open, or of central apnea, where the respiratory drive fails.  Either one has a solution, but knowing what the problem is, allows selection of the correct solution.

[herbm]

What are your current settings and your EPR?

You seem to (may) have a decent AHI if you can just keep wearing the mask.

If your pressure is high, you may find you must wait for the machine to let you exhale, that's the purpose of EPR: to let you exhale at higher pressures.

What mask are you using?

Everyone who knows me knows that I am an extremely strong proponent of the P-10. For people who can wear it, it is almost always the best mask.
To wear it (or any nasal pillow) you much be able to get your nose clear enough to start and then keep your mouth shut even if you must use a strap.

After you get something that is close to working, you must just vow to wear the mask no matter what -- keep it on, stay awake until you fall asleep from exhaustion if necessary.

Keep doing it, then do it again.

At that point you get usable readings and make adjustments until it works or you prove that you have the wrong (type of) machine.

[Broomstick]

I'm gonna get yelled at if I make a new post so I'm gonna ask this here and hope it doesn't go unnoticed.

Is it possible that someone's diaphragm gets fatigued by working harder to exhale all night against a high pressure that it eventually causes them to wake up struggling to breathe?

Today (yesterday?) I knocked out a 2.8 AHI and woke up struggling to breathe. I had to take the mask off. I couldn't take anymore and needed a break from the air. Is this a thing??? Could it be that I need a BIPAP machine?

What actually happens is that exhalation is normally a passive respiratory task, meaning exhale occurs when the diaphram relaxes and the expanded chest naturally compresses and the air in the lungs is exhaled. Respiratory work occurs during inhale.  Bilevel machines provide pressure support that reduces the effort of inspiration.  It is the contrast between low exhale pressure (EPAP) and higher inhale pressure (IPAP) that makes breathing less laborious or tiring. In cases where a restrictive lung condition or obesity or neurological chest impairment causes hypoventilation, pressure support can do most of the work of respiration, and in the case of central apnea, bilevel pressure support can do all of the work of respiration performing a non-invasive ventilation function and causing a breath.  Bilevel can overcome flow limitations and reduce hypopnea and improve ventilation tidal volume (the amount of air in the lungs exhaled during each breath). 

The sense of "struggling to breathe" should not occur with treated obstructive apnea, and can be a symptom of inadequate pressure to keep the airway open, or of central apnea, where the respiratory drive fails.  Either one has a solution, but knowing what the problem is, allows selection of the correct solution.

That's exactly the answer I was looking for. You deserve a free case of motor oil for that response. Thanks. 

I feel like I'm on the verge of fixing this. Heart Dr. said heart looks good yesterday. Need to get ahold of sleep Dr. Monday. 

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

Maybe the diaphram doesn't have to work to exhale, but restricting it's ability relax properly must cause it to become fatigued after a while, I imagine.

I feel like BIPAP is what I probably need. That ASV is also sounding more appealing to me every day. Think I need something to support my breathing rather than just cramming air down my throat.

[Sleeprider]

Okay, I do my own oil changes, as well as tire mounting and balancing, struts, suspension repairs and brakes. I'll be waiting on the motor oil, but I have migrated to synthetic.

[Gideon]

You said "Think I need something to support my breathing rather than just cramming air down my throat."

Just an FYI they do make a device that does that, it is called an Iron Lung

[vsheline]

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

[SarcasticDave94]

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.