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Please help - still completely fatigued
#1
Please help - still completely fatigued
Hi All,

I am relatively new here. I started my cpap therapy at the beginning of the year. At first I thought it was helping. With diet and exercise I lost about 30# and my mask started to not fit as well. I got another mask but just never seemed to feel good again. I use it all night every night. Min 7-8 hours during the week, sometimes longer on the weekends. Pressure set to auto 4 - 20
I don't get up as often as I did before therapy started, but never feel rested... completely fatigued all the time.

I will spare you all the details, but have had a battery of tests to track down the culprit. My other issues seem to be under control and should not be causing the sever fatigue that I am having.

I have several questions.
Has anyone else experienced this?
My mask seems to leak around the cheek bones (I guess they don't stick out far enough). I have a hard time getting a good seal. Has anyone had experience with this? Maybe a mask liner to help? I have tried several masks and they all seem to do the same thing when the pressure ramps up.
I have the resmed s9 escape. I didn't realize there were different models of the s9 when I got it or I would have insisted on one with more data. That being said, has anyone had issues like this with the escape? Is there a solid reason to pursue an upgrade? I would like to know the amount of leaks..... The machine says my ahi is quite low but gives little additional info. I am considering asking for another sleep study.

If there are no problems sleep related the only thing left to push for is a good cardiac workup (no known issues, but I understand that can cause fatigue as well).

I appreciate any help in advance. This has been a great resource for me so far!

Marxxx
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#2
RE: Please help - still completely fatigued
Hey Marxxx, welcome to Apnea heaven on earth!

I have a couple of questions for you: First, on your sidebar you mention you have a Resmed Elite. In your first paragraph you mention pressure settings of 4 - 20. Then you mention that you actually have an "Escape." To advise you properly, we really need to know which model you have. So on the machine, at the top where it says "Resmed," what does it say beside it?

The symptoms you are describing above are quite typical with leak issues caused by your full face mask. I cannot advise you on pressure settings until I know what machine you have and what your apnea experience is, but I can tell you that if it was my cute little face I would move to a pillows mask right away.

Anyhow come back with more info about your machine and we'll explore further.
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#3
RE: Please help - still completely fatigued
Sorry for the confusion, it is indeed the escape auto.
When I created my profile I filled it in wrong.

I haven't been able to breathe through my bose properly for several years so I went with the ffm. I may try them at some point if my nasal issues get resolved.

Thanks for taking the time to reply!

Marxxx
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#4
RE: Please help - still completely fatigued
Welcome marxxx, I hope you get things figured out soon. You will hear that many of us did not think we could breath though our nose till we tried it. I was a life long mouth breather so I started with a FFM which I didn't enjoy at all. There are other FFM if you need to try to get it just right. But when I tried a nasal mask then nasal pillows I found the pressure would open my passages and it was great. Since there is so much less area to seal leaking is way less of a problem.
Not sure what your prescribed pressure is but running wide open 4-20 can cause it's own set of problems, most find it better if they have a range of 2 or 3 above and below their magic number. The machine you mentioned (s9 escape) is not full data capable machine. So if you do upgrade then you can get the software and monitor yourself and know what is going on.
So you can prioritize what you can do and I hope solve all your problems in time. (I wish is was that easy).
Good Luck!

Doc J (despite my nickname I am not a doctor)

Remember to donate to the board if you can, it has helped a lot of people including myself.
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#5
RE: Please help - still completely fatigued
(10-26-2014, 08:12 PM)marxxx Wrote: Is there a solid reason to pursue an upgrade? I would like to know the amount of leaks..... The machine says my ahi is quite low but gives little additional info. I am considering asking for another sleep study.

Solid reason ... absolutely, S9 Escape Auto do not report leak or mask fit
Also no central apnea detection and no detailed data on the SD card

I would consider seriously upgrade to S9 AutoSet
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#6
RE: Please help - still completely fatigued
(10-26-2014, 09:08 PM)marxxx Wrote: Sorry for the confusion, it is indeed the escape auto.
When I created my profile I filled it in wrong.

I haven't been able to breathe through my bose properly for several years so I went with the ffm. I may try them at some point if my nasal issues get resolved.

Thanks for taking the time to reply!

Marxxx

Hi Marxxx,
Unfortunately, the S9 Escape Auto is not a full data-capable machine. All the S9 models, including the Escape and Escape Auto record "compliance" data, that is, how many hours used, and possibly AHI number, but that's about all. Only certain models, such as the S9 Elite or S9 Autoset also record Leaks, pressure graphs, events, flow graphs, etc. It would appear that you need a different machine to deliver the data that will allow you to have more insight to your therapy.

One member has posted a guide to the machines, so as to avoid machines that don't have full data reporting.
http://www.apneaboard.com/wiki/index.php...ne_Choices

Don't know how long you have had the Escape Auto, or your insurance situation, but some members have acquired "Open Box" or "Gently Used" machines for a good price thru one of the suppliers in the supplier list (Link at the top of every page). I think Supplier #2 or #10 may handle such. Or there is always CraigsList.

Once you have a data-capable machine, you can download the SleepyHead software (Links at top of all pages), and you can become VERY informed as to what is going on as you sleep.

Good Luck, and hope this is helpful.
A.Becker
PAPing in NE Ohio, with a pack of Cairn terriers
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#7
RE: Please help - still completely fatigued
Hi marxxx,
WELCOME! to the forum.!
You might consider trying a different mask to see if you have better success; the mask is the hardest part of this whole thing.
Hang in there for more suggestions and best of luck to you with your CPAP therapy.
trish6hundred
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#8
RE: Please help - still completely fatigued
Hi again Marxxx... Ok, so with the escape auto, my concern is unless you know what theraputic pressure you need in order to control you apneas you have to run it in what I call Blackbird Pie mode, which means 4 and 20. That plus your ffm issues makes this a difficult situation for you to manage.

First step I would highly recommend for all the reasons mentioned earlier is to migrate to a pillows mask. Preferably the P10 pillows mask. Do not let any idea that you cannot breath through your nose dissuade you. In almost all cases we really can breath quite nicely through our nose when it's hooked up to a machine applying a little air pressure.

If addressing the mask issues do not resolve your issues, then a move to a fully data capable machine is well in order.
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#9
RE: Please help - still completely fatigued
Thank you so much for all the replies.
I contacted my dme and will be getting the resmed s9 autoset tomorrow! I am happy that I will have more data available to me.

I have been concerned about the treatment. When I did my sleep study (through a very well known hospital network) they never checked me for pressure. I did not wear a mask at all during the whole study. The dr read the one page summary and prescribed the cpap with the 4 - 20 range.

Since things are not going well I will be switching machines tomorrow and going to a new dr in a few weeks (have an appointment next month).

Thanks again!
Also will be taking my masks to prow and will see if I can get a set of pillows to try. Thanks for the suggestion!
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#10
RE: Please help - still completely fatigued
That's great news marxxx, the S9 autoset is a good machine. After some use you will be able to find the average pressure and start tightening up the range a little and watching leaks and all sorts of fun graphy type things. I hope a pillow mask works or at least gives you a different option. I won't give my pillows up till' they pry them from my cold dead nose or something like that. So keep up the progress.
Good Luck!

Doc J (despite my nickname I am not a doctor)

Remember to donate to the board if you can, it has helped a lot of people including myself.
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