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New Sleep Apnea Sufferer-Intro and questions
#1
I’ll keep this as short as possible.
Had been feeling terrible for several years. My main issues were fatigue, night sweats, frequent nighttime urination, headaches and I have sinus issues- clogged nose more often than not. Additionally, I have arthritic discs and take opiates for now for the pain. Finally was referred to a cardiologist who after seeing my symptoms and me(6’, 230 and 17 ½” neck) stated that it was sleep apnea. Some may believe that’s bad to “diagnose” without even putting a stethoscope on me, but it was one of the more important days in my life in a positive way. The research into sleep apnea began, and I purchased a Philips Respironics Dreamstation, a couple of full face masks(was pretty certain I had no initial hope for anything but FFM), and some distilled water. Began using the day it arrived setting it “wide open”, downloading data daily to Sleepyhead and analyzing it. All the while referring to the fine folks here at Apnea Board and your discussions. Finally settled on a Simplus medium full face mask as the least bad FFM option I could find.
After struggling with a suffocating feeling from time-to-time using the APAP and combining that with my newfound sleep apnea understanding, I determined a bi-level was likely necessary. But due to various other indications I suspected I may have an issue with central apneas. So since all of this is coming out of my pocket I decided that it was wiser to go with an ASV instead of APAP, BiPAP, then ASV. Cost was a consideration for sure, but I believed it was the best path forward. I have a couple of months worth of Sleepyhead data from it as well. Also, my cardiologist had me do the stress test and I do not have chronic heart failure and my LVEF is 50-55%. I saw that ASV was not indicated for those cases.
I since had the initial sleep study on 12-20 confirming I have moderate sleep apnea at 17.9 AHI and that increases during REM sleep to 80. All else was “OK” in that there was no restless legs, oxygen went down to 88%. Poor sleep efficiency was indicated, and while it is true that I sometimes have suffered from insomnia, I think the one night snapshot of sleep efficiency had more to do with the attached wires than anything else.
So my questions are, 1) I am thinking of not scheduling a titration study since I am already treating my apnea. I will be moving into the new year and will have to cough up quite a lot of money since deductible resets at Jan 1. Sound reasonable? And question 2) I was given a copy of the summary report from the sleep study but not the actual data that was collected. Should I insist on the full sleep study information or is the summary good enough? I’ll have other questions later on various topics but wanted to introduce myself with this post. My settings on ASV are MIN EPAP = 6.6, Max EPAP = 13, Min PS = 5.0 and MAX PS = 12.2.
I’m starting to feel better but certainly not “healed”. I honestly thank all contributors here as 90+ [/size][/font]% of what I have learned about sleep apnea and its treatment so far has come from Apnea Board.
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#2
Hi gman5200. Welcome (officially) to the Apnea Board. You are going to need to post some of your Sleepyhead data showing both the overall nights picture and some 5 to 10 minute clips for us to get a better idea of your current results and the way your settings are affecting your breathing. I'm not sure that you wrote down your settings properly. We can get a better look when you post your data. Your machine and Sleepyhead can do the titration for you. You might need to tweak your initial settings and your max pressure but an ASV machine can respond to most anything you throw at it.

Rich
Apnea Board Member RobySue has posted a Beginners Guide to Sleepyhead Software here:  http://www.apneaboard.com/wiki/index.php...SleepyHead

Download Sleepyhead
Organize your Sleepyhead Charts
Post from Imgur


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#3
The actual data from the sleep study may require a CD or DVD because it is the complete tracings from the total time you slept, ie, large data. They should have the ability to give that to you somehow; being able to interpret it (EEG, EKG, O2, etc. may take the combined efforts of several of us!
                                                                                                                                                                                  
Please organize your SleeyHead screenshots like this.
I'm an epidemiologist, not a medical provider. 
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#4
Thanks much. I'll certainly post data as soon as I can-I think I need to do a couple more posts before I can post pics.
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#5
Take a look at the last couple pages of this thread http://www.apneaboard.com/forums/Thread-...ice?page=3

I think you can relate to this, and the information from this member's sleep study really tell us what we need to know. I would put some effort into getting the full report. Shouldn't be a problem since any records and reports are required to be supplied to a patient under HIPAA.
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#6


I think you can relate to this, and the information from this member's sleep study really tell us what we need to know. I would put some effort into getting the full report. Shouldn't be a problem since any records and reports are required to be supplied to a patient under HIPAA.




Yes, I can relate. I have felt so bad that I wanted to get moving on therapy so I did. What happened with the APAP looks like to me it simply wasn't adjusting at all during events, and I am thinking that my high rem sleep AHI was more than it could handle. My average AHI during APAP was 4 but since starting ASV I average .74 over last 30 days with a few zeros.
I will get sleep study data so I can post here, and in the meantime I will forego the titration (same feelings toward it as Piggles) and continue as I am now. Thanks very much and I'll post study data once I have it.
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#7
Feel free to contribute your thought in that other thread as well. I think your story is meaningful there. It sounds like things are working well for you, and it would be interesting to see some sleepyhead charts from CPAP compared to ASV. You should be able to post them after your next post. Links in my signature show how to organize and post SH charts here.

So now that you're on ASV, can you compare how you subjectively "feel"? Things are better?
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#8
[quote='Sleeprider' pid='186405' dateline='1483142600']
Feel free to contribute your thought in that other thread as well. I think your story is meaningful there. It sounds like things are working well for you, and it would be interesting to see some sleepyhead charts from CPAP compared to ASV. You should be able to post them after your next post. Links in my signature show how to organize and post SH charts here.

So now that you're on ASV, can you compare how you subjectively "feel"? Things are better?


For the subjective feeling better, while using APAP I was not being consistent with therapy. I would feel suffocated at times and tried working with the humidity level and tube temperature level thinking it was too hot. This was very discouraging as I knew I needed to be treated as I have been ill for a looong time. Having switched to the ASV, I don't at all fear going to bed and using it as it seems to be working with me as I breathe. Night sweats and nocturia have disappeared, and I haven't had what I tell my wife is a "write-off day", a day I feel so bad that I'd just as soon forget it, go back to sleep and try again the next day. And interestingly, I should have made the sleep apnea connection earlier as before discovering I had it, occasionally I would feel fine by the mid-afternoon and into the evening. Then I would go to bed and wake up feeling like I had been hit by a train. I just didn't understand that sleep apnea was prevalent so never considered it- until cardiologist saw me and said "it's sleep apnea".
I'm getting close to pic posting so I'll try to include as much as possible as clearly as possible. I'll include summary stats for Dreamstation(18 or 19 days) and ASV(since November 7 minus 12-20 when I did sleep study). I'll also give some pics of the intervals you requested. I would GREATLY appreciate any advice that is given so PLEASE don't hesitate. [/font]


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#9
It's a good story, and not many people out there, including doctors, are clued into looking at ASV as a solution. It seems the majority of the professional community doesn't recognize mixed / complex apnea, and take appropriate therapeutic action, when it is staring them in the face. As a layman, I find the majority of "sleep doctors" as portrayed by their patients that visit this forum, incompetent or uncaring. There are clearly some very good ones out there that can practice outside simple OSA, but they seem to be few and far-between. In my experience, a vast majority of sleep specialists never meet with the patient, but rely on the tests and reports of technicians to make their decisions.

My wife had a sleep study in November. She was scheduled for a second study in mid-December. Never talked to a doctor. We got a call yesterday that her prescription had been forwarded to a DME. WTF, we don't even discuss or get a copy? What a mess.
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#10
Generally speaking you are going to do better here at the Apnea Board when it comes to Complex or Central Apnea alone. It took me quite a while to find a competent Doctor when it came to Central Apnea. Many Doctors ignore Central Apnea because it is often associated with Congestive Heart Failure and or Opioid use. If you look at the scholarly literature on Central Apnea you will find most studies are related to Congestive Heart Failure. Yet there seem to be a wide range of people with some amount of disability in the nervous system/circulatory system feedback loop that controls respiration. This can be seen as an increase in Central Apnea type events when at high altitude or on a CPAP machine. Most cases can be dealt with in the fine tuning of settings process. Worst cases need ASV machines.
Apnea Board Member RobySue has posted a Beginners Guide to Sleepyhead Software here:  http://www.apneaboard.com/wiki/index.php...SleepyHead

Download Sleepyhead
Organize your Sleepyhead Charts
Post from Imgur


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