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+--- Thread: [split] Problem with ASV (/Thread-split-Problem-with-ASV)
[split] Problem with ASV - ZebraWoman - 08-21-2015
Oh my gosh.... I am feeling beyond a 10 in the stupid department. I was an honors college graduate and designated research scholar with published work in the area of designing and creating a computer program to analyze statistical data. Soo.. I am really NOT stupid...BUT... I am broken.
I don't know which forum to post this to... Amidst my frustration and exhaustion I have spent hours and hours on this site trying to educate myself. BTW- this site is HUGE. Multiple health conditions, have left me disabled and with unreliable memory and cognitive abilities.
I was diagnosed with mild OSA with a few CAs back in 2006. In 2007 discovered thyroid severely enlarged and cutting off my trachea, removed, able to breathe again.
Following several other health diagnosis, I now have fairly severe CA, which was finally diagnosed in May 2015.
Getting the "professionals" to take the time to sort out my situation is fairly hopeless... they just don't have time for complex profiles and they bounce you from one specialist to another. I have always had to be my own advocate. At this point, I feel that I have met my match... don't know if I can do this. I am truly overwhelmed by my crazy response to ASV therapy.
Downloaded ResMed program. Uploaded my SD card. Whhhaaaattt? I have spent over 4 hours attempting to understand how this gives me any information that will help me.
The report summaries say everything is just "peachy". For the first 3 - 4 weeks of therapy... it truly was!! I was beginning to really feel like I might get some of my life back...
Then things started slipping backwards. Reports all continuing to show everything was just fine, YET my body is saying... "NOT so". I have regressed over the last 3 weeks - I now feel worse than before I started. The reports continue to say everything is "wonderful".
SO... ResMed does not make sense and Sleepy Head... does not want to work because of missing file, which I seem unable to resolve.
Please point me.... I need some one(s) to actually step up and help me. I feel like I am drowning. "one of those little guys going down for the third time" Thanks
RE: [split] Problem with ASV - DariaVader - 08-21-2015
Hi ZW... I don't have CA, just OSA - but I had a gnarly thyroid removed as well! I had just the largest side removed in 1999 - 34 gms, and then in 2010 the other side had grown to 94 gm and I had that out as well, and am now sporting 2 scars on my neck that look like age lines. No one but me ever sees them - but they make my neck look 10 years older
before removal, the last bit had shoved my trachea off center, and I wonder if it has ever mended properly.... since the second surgery i have a waver in my voice that I hate
All that to say - I hope that you can get your CA treatment straightened out and welcome to the board! There are several folk on here with a lot of knowledge on Central Apnea!
RE: [split] Problem with ASV - DeepBreathing - 08-21-2015
Hi ZebraWoman - don't worry about feeling silly - prolonged apnea combined with other health issues has that effect. The good news is that it's reversible once you get the therapy working for you and get some restorative sleep. (I know - been there, done that). And you won't drown, because we're all here to throw you a lifeline.
Now to understand exactly what's happening, we need to get a handle on your machine setup and statistics.
Can you give us some further details on your machine settings, please? Which mode are you in - ASV or ASV-Auto? What are the pressure settings - Min EPAP, Max EPAP, Min PS, Max PS, Max IP? If you don't already have it, I suggest you request a copy of the clinician's manual from here: http://www.apneaboard.com/adjust-cpap-pressure/change-cpap-pressure-settings-adjusting-your-machine-with-a-clinician-setup-manual Be sure to follow the instructions carefully - there are hundreds of manuals available and it's easy to get the wrong one.
Can you give us a sample of the results you're getting from ResScan? AHI, AI, RERA (if available), leaks (min, median, 95% and maximum), pressure (min, median, 95% and maximum EPAP and IPAP). This information will give us a more detailed idea of what's going on, and how to improve your therapy. Once you've got a few more posts under your belt you will be able to post screen shots of your charts which will provide even more information.
One important thing to remember about this therapy is that some nights will be good and some will be bad. Often people get an instant fix, which wears off after a few weeks (as you have found). And there are a lot of variables which can influence your outcome. So take things easy, one step at a time. There's no need to panic - it will come good eventually, even if it seems like a long time coming.
RE: [split] Problem with ASV - vsheline - 08-24-2015
(08-21-2015, 09:52 PM)ZebraWoman Wrote: Then things started slipping backwards. Reports all continuing to show everything was just fine, YET my body is saying... "NOT so". I have regressed over the last 3 weeks - I now feel worse than before I started. The reports continue to say everything is "wonderful".
Hi ZebraWoman,
Please hang in there. Don't give up.
Have you received the setup manual (Clinician Guide) for your machine?
Please reply to Deep Breathing's questions. The answers will help us help you.
Take care,
--- Vaughn