rapid breathing/periodic breathing questions

[coconut]

I wonder if there are any users on here who know about rapid breathing at night, and periodic breathing.

I seem to have both, but my HMO doctors (a) haven't believed it, and (b) are dumb as a box o' rocks anyhow.

Now that I have a system one machine I can see the rapid breathing and some of what looks to be periodic breathing, but of course I don't know how to interpret it. Moreover, I just bought a cpap, and the therapy which really worked well on me was bipap. But my weird breathing combined with the bipap earlier in the year to give me mechanically-assisted hyperventilation in my sleep, which was unpleasant and which took me awhile to figure out, and my HMO doctors never did. It was actually serious enough to lock up my diaphragm from overbreathing... which is obvious in retrospect, but was confusing at the time. I could always buy a system one bipap if I found a cheap one at auction, but I'd be a bit scared to re-create the hyperventilation and 30 bpm breathing just to get the data.

So I wonder if others here breath shallowly and rapidly at night, or have periodic breathing. This list is often a great resource.

Thanks

- coconut

[cflame1]

are you using some kind of FLEX when you're hyperventilating?

I'm asking because I had to turn off CFLEX due to feeling that I was hyperventilating while on CPAP and APAP.

[resp1962]

As a CPAP provider, I can tell you my friend that you need another doctor. During your formal sleep study, you probably are expirencing both obstructive and central apneas. Rapid and shallow breathing patterns are SERIOUS!!! If you have a central apnea, then you make NO effort to breathe until the carbon dioxide builds to the point where your brain tells the diaphraph to fall and rise thus causing you to breathe RAPID to to eliminate the carbon dioxide buildup in the blood...BIPAP is the machine of choice for this condition because of its BACKUP RATE. When your breathing stops, the machine remembers the last few normal breaths in rate and depth and simply gives it to you. See another doctor such as a Pulmonologist and if your'e seeing one now, get another one.

[coconut]

Hi and thanks for the input.

I have never been able to sleep during a formal sleep study, with a number of them attempted. They got my prescription numbers for obstructive apnea from an auto-titrating cpap, then an auto-titrating bipap.

I'm not sure what's going on. I thought that with central apneas, you just stopped breathing. However in my case, when I fall asleep the respiration rate speeds up to more rapid-shallow. This can be fairly stable at around 19-21 breaths per minute, or it can get into what looks like periodic breathing with the amplitude going up and down in patterns. Earlier this year I was waking with a resp rate of more like 30, with all symptoms of hyperventilation. (I don't hyperventilate or have panic attacks, etc, while awake). Using my own recording oximeter, I verified that I was at max SPO2 during that period. I wish I had a recording capnometer to check the CO2, but they don't seem available.

My HMO's pulmonologists are out of their depth with anything more than obstructive apnea. They have suggested that IF I could prove the rapid breathing is true they would prescribe a bipap S/T, however my reading about those is that the timed mode is triggered by failure to breathe. I don't do that - I breathe faster, so unless my reading of the algorithm design is incorrect, they wouldn't do much for me.

I have many fairly serious medical problems that have defied attribution, and I suspect that this weird sort of breathing may be behind a lot of it. Yet my HMO doesn't allow people out of system, and their in-system pulmonologists and doctors seem to not even have gone to medical school. My primary HMO doctor, after I had described the rapid breathing which proceeded to lock up my diaphragm on the bipap, said I had "dyspepsia" and needed to consider taking tranquilizers and antidepressants.

If anybody on here would like to "rent" me a system one bipap for a couple days so I could document my hyperventilation, that might be useful. Otherwise, any tips on sane pulmonologists who I might be able to discuss this with via email?

thanks

- coconut

[Slinky]

I used a PR SystemOne Bi-PAP Auto w/Bi-Flex for about 7 months. I had quite a bit of Periodic Breathing according to the data (I also have the EncorePro 2.2.14.0 software). I found the PR S1 BPAP Auto comfortable to breathe and sleep with. Smooth transitions from IPAP to EPAP, just no breathing problems with it at all. I wasn't aware of the PB during sleep and only knew about it because of having the software.

My sleep doctor is a sleep pulmonologist, critical care specialist, and he has NO interest in the PR S1 data EXCEPT the total statistics page. So much for relying on your doctors!

[coconut]

My situation is that I have some undiagnosed nerve/muscle dysfunction that affects my legs, my GI tract, and also gives my heart arrhythmias sometimes and general weakness. It's episodic and has been slowly progressive the last 30 years. But since it doesn't have a named diagnosis, my HMO treats it as though it doesn't exist, despite my having had full leg paralysis that dropped me in the street, ulcers secondary to gastric stasis which required emergency surgery, etc etc.

My ability to get to sleep and maintain it is fragile, which is also true of one of my brothers but not the other - though neither of them have the paralysis issues. But I've never been able to sleep with all the wires and belts and stuff on in a sleep study, simply can no more readily fall asleep than if I was having a leg amputation. I just lie there all night in the dark, and that's the data they get, and it costs me a lot each time. Finally an auto cpap got me some numbers for the obstructive component and I've had a prescription for one since around '98, though I always felt worse when using it faithfully.

Wondering what was going on, around '99 or so I set up a video camera with in infra-red illuminator to point at me while I slept, and used a band-aid to tape a small lavalier mic to my nose, so my inhales and exhales would be very audible on the tape. What I found was that even back then, I would sink into very rapid shallow breathing as soon as falling asleep. I took the videotape to both an external sleep center and to my HMO pulmonologist, and they refused to watch it, even acted like I wanted them to do something kinky. They said rapid breathing was normal... and lost the tape. Back then I had some faith in them and dropped the matter.... while continuing to lose my health and energy, and have weird problems.

My health had gotten pretty bad by '08, and I asked if I could try a bipap. For whatever reason, this greatly improved my quality of life - I think it allowed my body to take fuller inhales, and slow my breathing rate. This worked great for a couple years - I was able to stick my mobility scooter in storage, and go back to eating some solid foods, and regain some mental acuity. However, by July or so of this year, I started feeling really bad after a night of sleep, having nothing but nightmares, and notice that I was breathing very fast on waking - like 30 breaths/min.

I assumed that it must be muscular insufficiency leading to hypercapnia, since I'd wake with my diaphragm spasming and in pain. However, when I asked the HMO to test my serum bicarb and CO2 levels, those were normal, and they gave me their "we told you there was nothing" look. As the night problems worsened, I started doing overnight sleep studies with my recording oximeter, which I hadn't used for a couple years. Lo and behold, my O2 saturation - which averages 93 in the daytime - was pegged at 98-99. Moreover, the symptoms were all consistent with hyperventilation. I reported this to the HMO doctors, and the told me that the blood tests also ruled out hyperventilation. Except... it was obviously occurring, and progressed to the point that my diaphragm quit working altogether, with a lot of pain and spasming, and I was not able to breathe at all in REM sleep for a couple weeks. That was bad.

Acting on the theory that my breathing reflex had for some reason reverted to a fast rate which was being exacerbated in volume by the bipap, I changed the bipap pressures so IPAP and EPAP were the same - basically cpap. The hyperventilating went away, though I was still breathing about a rate of 20. Even a half-cm of pressure suppore would trigger the hyperventilation problems, and that's nearly none. By this time, the HMO's doctors had passed one another memo's to ignore me.

So I bought a cheap system one cpap at auction so I could get at my waveform data. It validates my observations about breathing rate on CPAP, but of course it won't do BIPAP so I can't record the runaway breathing. The waveforms take it, at least potentially, out of my being nuts... but the HMO doesn't really want to deal with them, and I think I'm knocking my head against the ceiling of their competence. I think there is a pattern of unusual neuromuscular things going on, and I wonder how to find a doctor who's smarter than I am... that shouldn't be too much to ask.

Meanwhile, my business and health are going to hell, and my muscle problems have returned... can no longer walk very far and I had to get the mobility scooter out of storage, which I hated.

I appreciate any advice... I'm already onboard about "getting another doctor" but specific recommendations would be good; what would be great would be a smart respiratory therapist or pulmonologist who could analyze the data and problems by phone or email, since it's hard for me to travel.

all best, gang

- coconut

[cflame1]

what about a home test? I'm not sure if they'd do it... but it's worth asking.

[Slinky]

There are neurologists who specialize in sleep medicine. National Jewish in Denver and Stanford in CA have the best of reputations for pulmonology and sleep.

[pukilala]

Found these posts in trying to solve my rapid breathing/periodic breathing problems. Coconut's observations are same as what I am experiencing. Have you managed to address them since last posting? How? Any insight would be really helpful as I have been chronically sleep deprived for 10 months now. Had controlled OSA for past 17 years, until August 2019.

[Julie]

Coconut last posted 10 yrs ago (dates are under subject titles) so I doubt he'll answer you... start a new thread with your own title.

[coconut]

What I ultimately tried was a bipap AutoSV machine, which doesn't entirely fix things but is a better match. Not many clinicians seem to know about these, though. It's what I'm now using.