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Recently diagnosed with SOSA
#1
Recently diagnosed with SOSA
Hello my name is John; I'm 34 years old; average physical build and I live in California USA.

After 7-8 years of terrible sleep and waking up dozens of times per night I finally convinced my PCP to let me take a sleep study to find out what might be the problem. I had always though my sleep issues had been a side effect of the medications I take for my mixed connective tissue disease, neuropathic pain and autonomic dysfunction. I decided to talk with my doctor after seeing a video my brother had taken of me when I fell a sleep on the couch. I noticed I would struggle to breath in, rather than taking a breath I would kind of move my abdomen up and down over and over before finally taking a deep gasping breath. It was super weird looking; so I told my doctor and I got an appointment for a sleep study.

I went into the sleep study and they told me if you have enough problems in a hour period they will wake me up and start me on CPAP, well a short time after I feel a sleep sure enough I was being woken up to put on a weird mask and explained how the machine would work; and how they would slowly adjust the pressure until I wasn't having any breath holding episodes any more. I managed to sleep most of the night after that and was awoken at around 6:00 the next morning.

The sleep technician told me I had very sever sleep apena with 76 breath holding episodes in the first hour. After starting on the CPAP it wasn't until I reached 14cm that I started to improve and at 16cm I actually went into REM sleep for just over an hour with not one episode. Then I rolled on my side and they had to switch me to Bi-level because they had to take the pressure all the way up to 26cm, which I was told by the sleep specialist is a ridiculous level and she didn't feel it was necessary for the technician to go that high.

So now I have been prescribed an auto bi-level machine at 18cm to start with a follow-up scheduled for two months from now to evaluated for adjustment and effectiveness. I need to go get my new machine and mask fitting/selection on Tuesday.

I've also been referred to a local ENT to look at surgical options.

So yea, this all sucks... wish I would have looked into this years ago.

This is a great forum, I just wanted to share my story so far. I'm grateful for the resource this forum provides to people.
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#2
RE: Recently diagnosed with SOSA
Welcome, John.
It sounds like you're heading in the right direction to get a good nights sleep.

Stick with it. It's gonna be a bit of a battle in the beginning, but with help you'll begin to see results before you know it.
My get-up-and-go musta got up and went.  Cool
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#3
RE: Recently diagnosed with SOSA
Welcome! It sounds like you're right on top of things....persuading your doc, proceeding with the study, and organizing machinery. Good for you.

If you haven 't already, request a download of the physician's manual for your machine (see menu), read up on masks, and BPAP's in the Wiki and this forum.

You could get SleepyHead downloaded, and roust up a low-Gig SD card and card reader for your computer. That will keep you busy for a while!

In the meantime, happy Papping! Since I'm a newb, that's about the extent of my advice, but someone else will almost certainly be along to add to your to-do list.
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#4
RE: Recently diagnosed with SOSA
Welcome

Sorry to hear about your troubles, but at least you are about to get some help for one of them.  

Before you rolled over on your side, were you on your back?  That is interesting as apnea is usually worse on your back.  You may have been tucking your chin in, which restricts the airway.  I can see it taking a lot of pressure to work past that.  A soft cervical collar is effective and probably more comfortable if that is indeed the issue.  For a lot of this, self experimentation is needed.
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#5
RE: Recently diagnosed with SOSA
Hi crowmedicus,
WELCOME! to the forum.!
Good luck as you start CPAP therapy.
trish6hundred
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#6
RE: Recently diagnosed with SOSA
Welcome to the forum. I think you will soon be feeling a lot better after starting therapy. Surprising story regarding your pressure requirements and prescription for auto bilevel. Assuming you get either a Philips Dreamstation BiPAP Auto or Resmed Aircurve 10 Vauto, you will be able to monitor your therapy using the free SleepyHead software. Any bilevel machine will have settings for the minimum exhale pressure (EPAP), pressure support ( PS the difference between inhale and exhale pressure) and a maximum IPAP pressure. Give the therapy some time for you to adapt before jumping into changes or judging whether it is working or not. Some people feel relief from fatigue shortly after starting therapy, while others take weeks or months.

Good luck and feel free to ask any questions.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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