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New member - Advice requested
#1
Hi all,

First, thank you to the board admin(s) for creating this place. I have been reading as much as possible and finding the info great.

It's all a bit overwhelming though, and I feel like I'm taking in so much data that I'm losing site of the big picture and finding it hard to create a strong plan of action to get my apnea under control.

I was diagnosed with sleep apnea in May this year. A physician I went to about feeling a "lump" in my throat took a look and suggested I get a sleep study. She used a skinny wire with a camera on it to look inside and said there appeared to be collapsing in my throat (anyone else experienced that feeling related to sleep apnea?).

So, she ordered a sleep study. My wonderful insurance company informed me I would have to pay out of pocket $2700 for the test since my yearly deductible is $3000. So, I started doing research and decided to take a home sleep study for $250. I figured it would at least be a screening and if it showed clearly I had sleep apnea I might take the step of a full blown study.

The home study gave me an AHI of 29, with both central and obstructive apneas. I went back to my physician with this report and she told me she felt like I had moderate-to-severe sleep apnea, noting that home sleep studies can miss sleep apnea, but rarely find it when it does not exist (anyone know if that is true?).

I went ahead and got the Resmed Auto 9 machine with nasal pillow. Initially I started getting more rest, only being able to keep it on for a few hours a night before ripping it off. I was having trouble with mouth breathing and with pressure being too high that I felt like I could not exhale.

I got a chin strap (which seems to work at keeping my mouth shut) and set the machine to an EPR level of 3 to give some relief on exhaling (any clue what the difference is between each of the level for EPR?). I also downloaded Rescan and Sleepyhead.

I have been testing settings (pressure included - basically limiting the highest pressure for the Auto set to around 10 cm) and looking at my data each day, but ultimately, I am feeling lost. I am having many apnea events (both Obstructive and Central) each night still, and I feel like there are so many variables to assess that I'm sort of spinning my wheels.

Could some of you experts give me some advice and tips on starting basically from scratch? What data should I focus on in the software? All the graphs and numbers are a bit much. Is there a way to expand the graphs so they are more easily viewed? Are there a few key ones to focus on each day? What stats are important to assess?

Again, thank you for this forums.

Take care...

Tweissm
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#2
(06-09-2013, 11:50 AM)tweissm Wrote: set the machine to an EPR level of 3 to give some relief on exhaling (any clue what the difference is between each of the level for EPR?).

Each EPR setting = 1 cm H20 pressure.

OMyMyOHellYes
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#3
(06-09-2013, 11:50 AM)tweissm Wrote: I also downloaded Rescan and Sleepyhead.

I have been testing settings (pressure included - basically limiting the highest pressure for the Auto set to around 10 cm) and looking at my data each day, but ultimately, I am feeling lost. I am having many apnea events (both Obstructive and Central) each night still, and I feel like there are so many variables to assess that I'm sort of spinning my wheels.

Tweissm

Not an expert and it has been YEARS since I stayed at a Holiday Inn Express. So I'm not gonna recommend any specific course of action I think you should take. But, I'll tell you how I would approach the process.

I would make sure that the S9 was set for full data recording - not just compliance. I would open up the top end pressure all the way and sleep with it like that for a few weeks (it is only going to give me the pressure I need to open up blocked airways - 20 is the max, 15 is the highest mine's ever gone - and then only once, for a few minutes). Then I would download the results into my monitoring software - I use both ResScan and Sleepyhead (they show exactly the same results). I would see what the pressure was each night to reach the "95%" level. That would be where I would set a normal CPAP. But I have an S9 AutoAdjust so I would set a range. If there is variation between the 95% pressure and my highest pressures, then I would probably set the higher pressure as the upper end of the range. I would set the floor for the AutoAdjust range maybe 1 cm lower then my average pressure. I don't use the ramp feature, but I have been on PAP therapy for +/- nine years and feel "smothered" if I have a mask on at a reduced pressure.

But that's just what I would do. YMMV.

OMyMyOHellYes
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#4
Hi tweissm,
WELCOME! to the forum.!
You may have to try many different masks 'til you get the one that works just right. 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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#5
Welcome to the forum!!! We are glad you joined us!!! Welcome

Trish is correct in that the mask will be the most frustrating choice you will make. You will need to work with your DME to find one that works for you. I suggest asking questions of the DME about their trial and return policies.

This Wiki page shows some of the masks that are available right now.

Sleep-well
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
Unless you were awake most of the time of the test, the home sleep test is unlikely to say you have apnea if you don't. Especially with an AHI of 29.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#7
I would get away from the pillows ASAP. Try the same FX product in the very soft and flexible FX Nasal mask, it sets on the upper lip and goes about halfway up you nose. Outstanding unit. Solved my problems.
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