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Please help me decide whether I need to continue with CPAP
#1
Please help me decide whether I need to continue with CPAP
Hi folks

I'm aware that I have a number of long, whiny threads open, complaining about my problems. I hope you will indulge me for what I hope will be the last time. I didn't really want to extend one of the other threads, because this is really a different train of thought completely. Basically, I've spent a month or so fiddling with my CPAP, with no enormous success. The reason, I think, is that I might not have any problem that CPAP can fix. So I'm trying to work out whether I need to continue with CPAP at all.

I'm aware that what I really need is an in-lab PSG. Realistically, though, that's not going to happen. The UK NHS is broken, my insurance won't pay for it, and I can't afford to. So I really need to decide what to do, based on the limited information I have.  

By way of background: I was recommended CPAP because my doctors thought my cardiac arrhythmias might be caused by sleep apnea, and no other cause could be found. I've since discovered that I have a patent foramen ovale (PFO) -- a defect in the atrial septum that is very common, and usually asymptomatic. In my case, however, there is demonstrable right-to-left blood flow, so deoxygenated blood is bypassing my lungs. This effect is only present when I lay down (awake or asleep), and particularly when I lay on my left side (I have verified this with a camera). I've had huge numbers of heart and lung tests, and all are normal apart from the leaky PFO. Nevertheless, my oxygen saturation is abnormal of for extended periods of time, unless I'm upright.

I've arranged my thoughts in favour of, and against, continuing with CPAP.

In favour of CPAP:

1. I had a sleep study which said AHI ~20 and mean SpO2=90
2. Without CPAP, I do somtimes wake up at night, out of breath

3. The CPAP machine reports AHI always < 2 and usually < 1
4. The CPAP machine starts logging flow restrictions, almost as soon as I fall asleep, and adjusts the pressure. For my doctors, this alone is conclusive proof that I need CPAP
5. I'm a middle-aged man with a thick neck
6. Using the CPAP creates a modest improvement in my average SpO2, compared to before -- 1 to 2 percentage points
7. Some apneas and hypopneas are reported -- more than zero, anyway -- so something clearly is going in with my breathing
8. There's a small amount of research evidence that CPAP reduces the effect of a right-to-left intracardiac shunt, even in people who don't need it for OSA
9. I can tolerate CPAP. I can keep the mask on all night, every night.

Against CPAP:

1. My sleep study was only a WatchPAT. I'm not sure how reliable these are
2. I have none of the textbooks symptoms of sleep apnea -- my Epworth score is zero, and I don't have headaches, fatigue, etc.
3. Although the CPAP machine reports low AHI, it does this even when I set pressure to 4cm, which is usually sub-therapeutic. In addition, my AHI is highly variable from night to night even with constant machine settings, and does not seem to depend much, if at all, on those settings.
4. Although the CPAP machine logs flow restrictions, if I set the pressure to 4cm, so that these are not corrected, I do not show more breathing or SpO2 disturbances during these flow-restricted periods than elsewhere. They appear to be asymptomatic.
5. Although I have an "OSA neck", I don't snore. Not ever.
6. Although my average SpO2 is improved by CPAP, the time I spend with SpO2 in the 90% region is not. It's usually 1-2 hours every night. In addition, my SpO2 is highly variable from night to night, so comparison is difficult. Still, I know that periods of lowest SpO2 occur when I'm laying on my left side, when a right-to-left intracardiac shunt is most active. CPAP will probably not fix this.
7. The apneas and hypopneas that are reported are either (a) in clusters, when I'm laying on my back (i.e., positional) or (b) during periods of periodic breathing when I'm laying on my left side. CPAP will probably not fix either of these.
8. The small amount of research evidence that CPAP reduces the effect of a right-to-left intracardiac shunt is, in fact, just one published paper with a small sample size
9. Although I can tolerate CPAP, I hate it. It's uncomfortable, it disturbs my sleep, and it's trashed marital relations completely.

Needless to say, my doctors are completely baffled, and have nothing useful to suggest apart from "carry on with CPAP for another year and see how you feel". The fact is that I feel fine, with or without it. All my problems arise when I'm unconscious.

I confess that, to be honest, I've written this mostly to organize my thoughts for myself. I won't be offended if nobody has time to read it. But many thanks to anybody who does.

BW, DS
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#2
RE: Please help me decide whether I need to continue with CPAP
You should continue using your CPAP. Later in life you may look back and see how important this life-or-death decision was. Never mind the cons, if there is one pro, put on the mask.
First Diagnosed July 1990

MSgt (E-7) USAF (Medic)
Retired 1968-1990
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#3
RE: Please help me decide whether I need to continue with CPAP
IMHO you answered your own question.

Fact 1. Your heart bypasses no -oxygenated blood. I'm not going to dispute this.

Fact 2. CPAP improves oxygenation

Thus you NEED CPAP.
Likely supplemental oxygen will also help
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#4
RE: Please help me decide whether I need to continue with CPAP
Very simply, since there are positives you can recognize, you should continue PAP use. Like Gideon said, you may have to get supplemental oxygen. It makes sense to consider adding this so you bring oxygen levels up to combat the 90% or less segments.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Please help me decide whether I need to continue with CPAP
Thanks to all who replied. When I had my original sleep study, that was before I knew about chin-tucking, positional apnea, etc., and that I have a cardiac shunt that is active when I lay on my left. I'm wondering whether I can correct these things without CPAP. Or, at least, have another (home) sleep study, knowing what I know now.

Frankly, I could cope with CPAP if it wasn't for the effect on my marriage. The whole thing freaks my poor wife out completely, to be honest. She's seen me on life support, so I can see why it might give her the abdabs. And -- it's one thing to wake your partner up when you come to bed; but quite another to get your partner off a ventilator, if you see what I mean. I don't know if this is a problem that other people have had, and overcome.

BW, DS
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#6
RE: Please help me decide whether I need to continue with CPAP
My wife had a traumatic aoritic aneurism on the descending aortic artery. The building next to her exploded and her car wen somersaulting 3.5 time and 2.5 stories high and I was within about 100 ft of her when it happened. The inner two layers of her aorta were about two inches separated. I understand the survival rate to be well under 1% to make it to surgery. Complications down the road years later was an extremely compromised airway. The solution was a trach, the earliest treatment for apnea, bypassing the upper airway completely. Having lived thru this I certainly do not recommend it, but it does work.

I stand behind my recommendation of CPAP and supplemental oxygen.
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#7
RE: Please help me decide whether I need to continue with CPAP
It's sort of like stories on the internet. If you have stop and wonder if it's true, it 99% usually is not. If you have to wonder if you should stop cpap, 100% of the time you should keep using it. If your wife has a terrible time about it, separate bedrooms or separate lives.
First Diagnosed July 1990

MSgt (E-7) USAF (Medic)
Retired 1968-1990
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#8
RE: Please help me decide whether I need to continue with CPAP
What an absurd comment.
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#9
RE: Please help me decide whether I need to continue with CPAP
Another point of view. Had a brain bleed. My husband watched me, for a month off and on a ventilator. He is delighted to see me always using my bilevel because it gives him relief that I am alive. That gives him joy.

He also now uses a bilevel and it doesn’t affect either of us. If your wife cannot comprehend the necessity for pap therapy and possibly supplemental oxygen, something is very very wrong.

One positive point for pap outweighs every negative.
Good luck. It’s your life, and mot using it will likely shorten it.
YMMV
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#10
RE: Please help me decide whether I need to continue with CPAP
(01-22-2022, 10:02 AM)Elgeeone Wrote: If your wife cannot comprehend the necessity for pap therapy and possibly supplemental oxygen, something is very very wrong.

My wife can comprehend it, and is one hundred percent supportive. In fact, she is keen that I continue to use it, even though I'm not certain that it benefits me all that much.

At the same time, we now sleep in a room that looks like an intensive care unit. There's the all-night humming and hissing of the machine, combined with various lights randomly switching on an off.

Decorating my mask hose with a sleeve with teddy bears on has back-fired somewhat, because it now looks like a children's intensive care unit. 

The last time my wife saw me in a mask, she was told to expect the worst. While I take your point, I know that the whole business makes her very uncomfortable.

We've put up with worse, I guess; I just wish we didn't have to.

BW, DS
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