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Exhausted and at my wits' end - please help!!!
#1
Hi everyone,

Over a year ago, I went through several sleep studies, during which they determined that I had severe Central (not obstructive) sleep apnea (I also have MS.) Because of the results from my sleep studies, I was prescribed a Resmed VPAP Autoadapt with a full-face mask.

Because I found every mask to be uncomfortable, I finally settled on a Wisp Nasal Mask w/a chin strap, alternating with a Philips Respironics Total Face Mask in cases where I have a stuffy nose (which I'm prone to.)

Here's my problem: My numbers are TERRIBLE, and they just keep getting worse. The sleep doc is no help, as I believe he doesn't understand MS and the things that I'm going through. My usage every night hovers around 2-3 hours, which I don't understand - I think I might rip off the masks during the night. My AHI is anywhere from 5-36 (!)

Here are my current settings:

Mode ASVAuto
Min EPAP 6.0
Max EPAP 12.0
Min PS 2.0
Max PS 7.0
Max RAMP Off
Start EPAP 4.0
Climate Ctrl Auto
Sleep Quality On
Leak Alert Off
Smart Start Off
Access Full

What should I/could I try? I haven't slept well in well over a year!

Thanks in advance for any/all help.


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#2
Don't give up hope! Someone with experience will chime in. I'm a new cpap user, so can't help your specific problem. I do think that you should call around to find a pulmonoligist who has some expertise in MS. I assume that you are going to a neurologist who specializes in the disease. That would be your first source for a referral. If that person can't help you, call the major university in your state and do the same. I'm sorry I can't help you more.

I am pming you with a link to another place.
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#3
Duketheshepherd, The only advice I can offer is to try and avoid sleeping on your back, if at all possible. It's the single most important thing you can do to make the therapy work most effectively. For anyone getting a wide range of readings, such as you stated, I suspect it may be a sleep positional issue. You may need a memory foam mattress topper and a higher than normal pillow to make side sleeping comfortable so do what you must, if it's problematic.
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#4
(06-13-2015, 03:32 PM)surferdude2 Wrote: Duketheshepherd, The only advice I can offer is to try and avoid sleeping on your back, if at all possible. It's the single most important thing you can do to make the therapy work most effectively. For anyone getting a wide range of readings, such as you stated, I suspect it may be a sleep positional issue. You may need a memory foam mattress topper and a higher than normal pillow to make side sleeping comfortable so do what you must, if it's problematic.

I ALWAYS sleep on my back - I never even heard of that being a problem! I'll definitely try sleeping on my side, and I'll keep you posted.

Thanks!
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#5

Hi Duketheshepherd,
WELCOME! to the forum.!
Hang in there for more suggestions and answers to your questions and don't give up.
Much success to you with your CPAP therapy and getting it fine tuned.
trish6hundred
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#6
(06-13-2015, 02:27 PM)Duketheshepherd Wrote: Hi everyone,

Over a year ago, I went through several sleep studies, during which they determined that I had severe Central (not obstructive) sleep apnea (I also have MS.) Because of the results from my sleep studies, I was prescribed a Resmed VPAP Autoadapt with a full-face mask.

Because I found every mask to be uncomfortable, I finally settled on a Wisp Nasal Mask w/a chin strap, alternating with a Philips Respironics Total Face Mask in cases where I have a stuffy nose (which I'm prone to.)

Here's my problem: My numbers are TERRIBLE, and they just keep getting worse. The sleep doc is no help, as I believe he doesn't understand MS and the things that I'm going through. My usage every night hovers around 2-3 hours, which I don't understand - I think I might rip off the masks during the night. My AHI is anywhere from 5-36 (!)

Here are my current settings:

Mode ASVAuto
Min EPAP 6.0
Max EPAP 12.0
Min PS 2.0
Max PS 7.0
Max RAMP Off
Start EPAP 4.0
Climate Ctrl Auto
Sleep Quality On
Leak Alert Off
Smart Start Off
Access Full

What should I/could I try? I haven't slept well in well over a year!

Thanks in advance for any/all help.

As others have suggested, try not to sleep on your back. I have found that my SleepyHead data isn't good if my sleep session is under 3 hours - esp on my back. Try and keep that mask on for at least 5+ hours. Use a humidifier if you have one. I note you don't have a ramp time set up. Try setting this time for say 20 minutes - or how long it takes you to fall asleep - mine is set for 45 min. ... it might help you settle better.

Turn on Smart Start - then CPAP will start when your mask is on properly.

You should know your pressure - ask your Dr. Who set your machine up? Looks like your max is 12.0 - you may have to adjust your pressure if you can't get to a good AHI - you need to know where you are starting from.

Use a CPAP foam pillow - this really helped me. Record your results every morning (from your Info on CPAP) to see if you can identify a night time or sleeping pattern that results in a low AHI of <5. then repeat those characteristics.

This takes time and you have other challenges to manage. I've been doing this 20 years and still have to tweak things every now and then..... Good Luck.

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#7
(06-13-2015, 02:27 PM)Duketheshepherd Wrote: Hi everyone,

Over a year ago, I went through several sleep studies, during which they determined that I had severe Central (not obstructive) sleep apnea (I also have MS.) Because of the results from my sleep studies, I was prescribed a Resmed VPAP Autoadapt with a full-face mask.

Because I found every mask to be uncomfortable, I finally settled on a Wisp Nasal Mask w/a chin strap, alternating with a Philips Respironics Total Face Mask in cases where I have a stuffy nose (which I'm prone to.)

Here's my problem: My numbers are TERRIBLE, and they just keep getting worse. The sleep doc is no help, as I believe he doesn't understand MS and the things that I'm going through. My usage every night hovers around 2-3 hours, which I don't understand - I think I might rip off the masks during the night. My AHI is anywhere from 5-36 (!)

Here are my current settings:

Mode ASVAuto
Min EPAP 6.0
Max EPAP 12.0
Min PS 2.0
Max PS 7.0
Max RAMP Off
Start EPAP 4.0
Climate Ctrl Auto
Sleep Quality On
Leak Alert Off
Smart Start Off
Access Full

What should I/could I try? I haven't slept well in well over a year!

Thanks in advance for any/all help.

do you look at your data in sleepyhead or rescan or some program? I would suggest that you do that and look at more than just what is on the screen to see if you can find anything unusual to explain what is happening. You need to watch it for more than just one night. I really don't know what to say other than that because I am not familiar with CA and your machine.
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#8
For what it is worth I am sleeping in a power reclining chair and can move it to different positions depending on what aches. I slept much better semi-reclined even before cpap thanks to Retired_guys suggestion.
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
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#9
Wow, great suggestions. I can't believe it took me so long to reach out to other people - duh! As I've said, the doc's been no help at all. The most he suggested was to stop napping during the day (I nap 1/2-1 hour/day); whether I nap or not makes absolutely no difference in my numbers. It just makes a difference in my crabbiness level! I will try these tonight & let you all know how things go.

Thanks again.
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#10
(06-13-2015, 07:46 PM)Duketheshepherd Wrote: Wow, great suggestions. I can't believe it took me so long to reach out to other people - duh! As I've said, the doc's been no help at all. The most he suggested was to stop napping during the day (I nap 1/2-1 hour/day); whether I nap or not makes absolutely no difference in my numbers. It just makes a difference in my crabbiness level! I will try these tonight & let you all know how things go.

Thanks again.

I used to nap at least once a day some days more and accomplished little nap or 2 naps.
Been on pap therapy for 5 weeks and no longer nap at all. I have learned if I crash late afternoon to ride with it and pack it in for the day.
Forcing myself to keep going just made the next 2-3 day horrible!
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
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