A new guy with SMA using CPAP in need of advice

Hello everyone!

My name's Vlad, I'm new here and in need of some advice.
I have Spinal Muscular Atrophy (type II) and recently underwent polysomnography. It showed mild sleep apnea (AHI 13) but my saturation levels are not low. So the doctor prescribed me a CPAP device. I've got a used system one pro (452p) and opti-life mask with pillow cushions. The doctor told me to start from the pressure of 6 cm. The ramp is 30 minutes (starting from 4 cm) and C-Flex+ (pressure relief) is enabled at maximum.
So, I've been using the device for two weeks now. At first, I felt quite comfortable, although I still woke up 2-3 times at night.

But now I feel less comfortable sometimes. When I wake up I often find that I am breathing a bit more often than I'd feel comfortable. And I feel that when I inhale, my "inhalation phase" ends sooner than I'd like to and the device lowers the pressure as if I must exhale now, but I still try to breathe in and it ends in an extra effort. The device kind of "forces" me to breath in no more than about two seconds. I don't quite understand why it happens, because when I start the therapy session with the ramp on everything seems to be all right, even when the pressure gradually increases. I know, my muscles are weak due to my disease, maybe, generally healthy people can fill their lungs with more oxygen in a shorter time, but the device must follow my breathing pattern, isn't it? Maybe some of you, guys, experienced the same problem and could kindly suggest me something?

Question no. 2: the heated humidifier.
Well, it's heated (it has a round plate underneath the water tank), but with no heated tube.
So, the only options available in clinicians menu are System One humidification (which is on) and "Humidifier" which is a number, but there are no temperature settings. I still can't understand, do I have any control over the temperature? I think when I increased the setting, the air became a bit warmer which I didn't like. So I can't increase humidity without increasing the temperature?

Question no 3. Sputum
Since my breathing problems started I usually have sputum (phlegm) somewhere in my trachea. Sometimes I almost get rid of it (antimicrobial inhalations with a nebulizer) , more often it comes back. I'm not sure whether I have it because of the apnea or the other way around, but maybe this is also common - I'd like to know:)

I will really appreciate your hints and suggestions because here in Ukraine there are very few people who use CPAP devices so it's really hard to get any help.

vlad_med wrote: ↑

Wed Jan 02, 2019 2:21 pm

I've got a used system one pro (452p)

vlad_med wrote: ↑

Wed Jan 02, 2019 2:21 pm

Question no. 2: the heated humidifier.
Well, it's heated (it has a round plate underneath the water tank), but with no heated tube.
So, the only options available in clinicians menu are System One humidification (which is on) and "Humidifier" which is a number, but there are no temperature settings. I still can't understand, do I have any control over the temperature? I think when I increased the setting, the air became a bit warmer which I didn't like. So I can't increase humidity without increasing the temperature?

If your machine is indeed the 50 series and the 5 part of the 452 means it's a 50 series model...those models weren't heated hose capable and that's why you don't have a hose air temp setting available to you.
What you might want to try to add just a little warmth though.....a hose cozy. Might be just enough to be comfortable for you.
You can make your own out of some old tube socks or something like that...cut out the toes...slide over the hose and secure them from sliding around with a rubber band or scotch tap or some sort of little tie.

Integrated heated hose with actual air temp controls weren't available until the 60 series machine which came after the 50 series.

And yes...the machine you have can't breathe for you or force you to take bigger breaths and you do have to initiate each breath.
If you really need extra help in forcing more breaths or bigger breaths to increase volume...you need a different kind of machine.

I would personally turn off the ramp altogether - 30 mins to move up just 2 cms is a waste of therapy time (yours) and serves no purpose... ramp times can be useful if your min. setting is high and you can't tolerate the initial starting pressure, so might try a shorter time to reach the higher setting, but in your case I wouldn't bother... most of us stopped using ramp anyway within a very short time of going on Cpap.

Hello again!
Thanks for your answers!
I think my problem was described by this guy here viewtopic/t104047/Cutting-off-inhale-too-short.html
I wanted to say that my machine is making the "inhaling" phase shorted than I want. It starts "exhalation phase" by lowering pressure and consequently I feel like I make more effort while inhaling. Is it typical for respironics or what can be the reason? When I wake up at night and feel uncomfortable I press ramp button and then the device adapts to the length of my "breathing ins". Sometimes when I inhale and the device cuts my inhaling off too soon it then detects, that I'm still inhaling and raises the pressure back.

In addition to turning off the ramp, I suggest that you lower or completely disable the C-Flex. I know that it doesn't breathe for you, but it sure can feel that way! I am much more comfortable with a steady pressure.

Just because D.H. does better with CFlex off doesn't mean that you will.

What I suggest is that you play with all the exhale relief settings available including off...and see which one most closely matches your own respiration pattern and use that one no matter what the number might be.

Thanks for your answers, Pugsy, Julie, D.H.!

I switched to plain C-Flex (without +) and it feels more comfortable with no inhalation phase "cut-offs", but on the second night I noticed my jaw drops significantly and the air starts coming out of the mouth. Now I try to arrange my head in the way the jaw doesn't drop, but I'm thinking about buying a chin strap. After the third night with C-Flex I felt really horrible - the headache returned along with daily fatigue. It feels just like before starting cpap. My 7-day AHI shown by the device stays 12.7 (was 13.2 during night screening before cpap therapy). My doctor remotely advised me to switch back to C-Flex+ and to try increase pressure slowly day by day.

So I've got a couple of new questions for you)

1. What chain strap would you advise to buy? I need something "strong" enough. And I use Respironics OptiLife mask with nasal pillow cushions. If choosing between a broad white one by respironics or some other companies and Ruby adjustable - do you have any feedback on these?


2. How accurate is AHI shown by a cpap device? Can this index be different for ordinary "generally healthy" people with sleep apnea and people with neuromuscular diseases?

3. Do I understand correctly that if it will be too hard for me to breath out with higher cpap pressures then my only option will be to use a bipap device?

4. I tried to insert a micro SD card with SD-adapter into my remstar (series 50) pro device. Ended with a lot of beeping and the message "SD card error: remove and reinsert". The card is not oflatest models (took it out from eReader) - it has 2Gb, with very little usage and works fine with my computer. I formatted it in FAT and in FAT32 - no difference, the same error.

Then I tried 8 Gb SDHC Class 10 card from my photo camera. I don't have a separate card reader, so I formatted it through the camera, my computer shows the file system as some "storage container". The cpap device showed message "Data activity: Do not remove card" for a few minutes and went to standard mode. Under Info menu I see the sd card and it's written "46% free" (kind of weir, because it could hardly use 4 Gb of space) but the problem is... when I put the sd card back to the camera and plug it in my computer - it shows no files at all!

Could you please help me with this? I know, I should buy a proper card reader and I will, but what card type should I search for? An SD card (not SDHC) with no more than 2 Gb? What file system format is preferred? I will be really grateful for any help!! May God / Karma / whatever you believe in will reward you for your help with my 4th month of sleeping nightmare(( And have a wonderful day everyone:)

1...Never tried either but the Ruby adjustable seems to be more prevalent here among chin strap users than the other one.
Now I did get a chance to physically see that Respironics chin strap and feel it....I did NOT like anything about it and that's why I didn't try it on.

2. Very accurate...and there's no special indexing involved. It reports what it reports because it senses it...and doesn't give special credit for severity of OSA or not. It is what it is and extremely accurate as long as you are sleeping.
Now if you spend much time awake with the mask and machine on then it can run into trouble being accurate and there can be false positives.

3.. Maybe you might find the way a bilevel machine does the inhale and exhale easier...you won't know unless you try.
Respironics machines don't offer much of an actual drop in exhale to make it easier for those people who have a tough time exhaling against the pressure. The most they can drop is 2 cm and that's only if you are a nice forceful strong breather. If you tend to breath more shallowly you can't even get the 2 cm drop.
The drop from inhale to exhale is what offers the comfort ...that difference between inhale and exhale. World of difference between 2 cm drop you can maybe get with your machine and a 4 or 5 cm drop that is available on a bilevel machine.
But yes...if you can't exhale against your needed pressures with this machine then you need a machine that offers more options and that would be the bilevel machine.

4... If the machine did the "writing to SD card" thing...data should be on the card.
Use SleepyHead and quit trying to see inside the card. See if SleepyHead can see anything..
No need to formally format a SD card...just stick it in the cpap machine and the machine will fix up the card like it needs to be fixed up.
I have never formatted a SD card.

Size doesn't matter...and neither does SD vs SDHC but might was well get the cheaper...don't need the stuff that SDHC offers anyway.
I am using a Sandisk 8 GB SD card that I got from WalMart. Works fine. We can't find smaller around here and it hurts nothing to use larger.

I used that white chin strap for a time (after disliking others more). It was good FOR ME, but may be or not be for you. I used the band you depict as well as the headband and back-of-head band straps that came with my version.

Anyway, a cervical collar has been far better for me: no rearward pressure with adequate control of head tilt and jaw drop. I use the collar with the nasal pillow P10 and never have used the collar with a full face mask (which I started CPAP therapy with).

AmSleepnBetta wrote: ↑

Sat Jan 19, 2019 4:45 am

I used that white chin strap for a time (after disliking others more). It was good FOR ME, but may be or not be for you. I used the band you depict as well as the headband and back-of-head band straps that came with my version.

Anyway, a cervical collar has been far better for me: no rearward pressure with adequate control of head tilt and jaw drop. I use the collar with the nasal pillow P10 and never have used the collar with a full face mask (which I started CPAP therapy with).

Do you still sleep on a pillow with the cervical collar worn?

My wife and I both use a cervical collar at night and sleep on pillows.

Is your pillow thin? About how much of the collar is on the pillow?

Our pillows are rather thin. The pillow comes down to the top of our shoulders. We have an adjustable bed so we sleep with our heads and feet raised. It is similar to sleeping in a recliner.

foo wrote: ↑

Sat Jan 19, 2019 9:14 am

Do you still sleep on a pillow with the cervical collar worn?

foo, you have asked a key question here. I do sleep with the collar worn and have found that some--if not most--pillows tend to push against it. The foam pillow pictured below--I got a special deal for $20, new and delivered--did not pan out for this side sleeper for that reason; the collar thickness and the pillow rise/bulge at the neck location doubled up uncomfortably.

I reverted back to a horseshoe shaped travel pillow that I had removed the foam cushion from and then replaced it with a slack filling of buckwheat hulls taken from a new large buckwheat pillow. One day I'll get a container/cover that is about 12 in x 6 in x 4 in and fill it about 75-80% full with the hulls. With it as with my present pillow the buckwheat will take and hold my shaping of it, including pushing the pillow away enough to keep from putting pressure on the collar. I run my hand back under my neck to do the shaping while lying on my side, head on the pillow.


I think there may be collars that are thinner than mine in wrapping the back half of the neck, say, from ear to ear. Another gadget to try maybe. Good luck finding what works for you.

You just reminded me of what I need to try next. A contoured pillow. Thanks for that. I am going to do just that, I was always a side sleeper. I've only been on my back since the treatment.
I am excited to imagine that going back to my side may just be the trick.

Thanks again.