A new guy with SMA using CPAP in need of advice

Thanks a lot, dear Pugsy, you are very helpful!
You were right about the SD card: although it shows only about 60 Kb with a proper card reader, SleepyHead was able to import a lot of data.
So here is my first SleepyHead report, hope you guys can tell me something useful looking at it:
The first picture is my worst 4th night with ordinary C-flex (although the other nights AHI were 11.44, 11.79 and 10.87)


Then I switched back to C-Flex+ and slowly increased pressure to 7 and 7.5. Last night's result looks like this.


I don't know why the flow rate chart appeared only for the last two nights (and many other graphs).
I still experience a headache and fatigue during the day((
And I'm quite worried about new inspiration/expiration time and tidal graphs, it seems my breathing is very shallow (if I use the word correctly) when I'm asleep.

Will be grateful for your thoughts;)

You only get the flow rate graph if the SD card is in the machine during the night. Those data files are quite large and have to go directly to the SD card and aren't stored in the machine's internal memory.
The other graphs are stored in the machine's internal memory for a period of time and are put on a blank SD card when inserted.

vlad_med wrote: ↑

Sun Jan 20, 2019 1:01 pm

And I'm quite worried about new inspiration/expiration time and tidal graphs, it seems my breathing is very shallow (if I use the word correctly) when I'm asleep.

Ignore them...nothing you can do about them for one thing and the other thing is the wide variations you see is normal.
Our breathing does become more shallow when asleep compared to awake....it's normal.

You need more pressure....continue upwards with the pressure setting.
Use whatever Flex at whatever setting is comfortable for you. It's not the critical factor.
The baseline pressure is the most critical factor.

Hello guys!

I've been increasing pressure up to 9 cm moving by 0.5 cm per a couple of days. My AHI was from 10 to 14 and sleep quality has not much improved.
My provider offered me to replace my device with Resmed Autosense S9 (auto cpap if I'm not mistaken) or Somnoballance E (both with humidifiers) or to pay him some additional cost and get a bipap SleepCube Bilevel ST DV56. All devices are used.

So I need your advice:
1. Which of the two auto cpaps you'd recommend?

2.is it wise to experiment with auto cpap device before going for bipap? I mean, if auto device will increase pressure during my deep sleep - maybe it will be easier to tolerate (I will not notice it during sleep) and thus I will be able to use higher pressures with the auto cpap?

3. Are hoses/masks mutually compatible between respironics and resmed?

Do you have a neuromuscular clinic there? You really should be under the guidance of someone for breathing support and keeping your airways clear.

I would go with a bi-level machine. It should be more comfortable and will provide some muscle rest via pressure support.

raisedfist wrote: ↑

Wed Jan 30, 2019 9:29 am

I would go with a bi-level machine. It should be more comfortable and will provide some muscle rest via pressure support.

thanks for your advice. Did you experience switching to bipap after cpap? I know, that bipap is more advanced but now... I'm a bit confused, that cpap device is auto, and that bipap is set bipap and it doesn't provide any graphs on an SD card.

We don't have a clinic specialising in SMA here, I consult a doctor from Moscow via Skype.

I wouldn't advise the Devilbiss Bilevel ST.....fixed pressures only and not compatible with SleepyHead I don't think...it's iffy.

Of the choices...I would suggest trying the ResMed S9 AutoSet.

vlad_med wrote: ↑

Wed Jan 30, 2019 9:35 am

raisedfist wrote: ↑

Wed Jan 30, 2019 9:29 am

I would go with a bi-level machine. It should be more comfortable and will provide some muscle rest via pressure support.

thanks for your advice. Did you experience switching to bipap after cpap? I know, that bipap is more advanced but now... I'm a bit confused, that cpap device is auto, and that bipap is set bipap and it doesn't provide any graphs on an SD card.

We don't have a clinic specializing in SMA here, I consult a doctor from Moscow via Skype.

I've only ever used a bi-level machine essentially. I tried CPAP once and I woke up with a giant headache.

You should e-mail Dr. John R. Bach, a neuromuscular disease expert in the United States. He manages patients with muscle weakness. He makes videos for Philips Respironics, authors journals and textbooks, and speaks all over the world. He also knows experts in other countries and will recommend them as needed. He was nice enough to respond to me when I sent him an e-mail and was a great help.

https://njms-web.njms.rutgers.edu/profi ... mid=bachjr