I found great documentation on it on another forum, and a lot of other knowledgeable users. I feel like I am still learning, but I could clearly see things like what my pressures were doing throughout the night. I started on APAP at 6 to 15, but soon saw that my pressure goes up to 9 as soon as I fall asleep. events tend to happen when pressure falls below 9 and then the pressure goes higher than it needs to if I just start at 9. So now i am starting at 9, have less variation and fewer spikes, and because of not varying, leaks are better controlled. I have graphs that show me all of that. I can also see that I do not have any issue with Clear Airways which are potential Centrals. This allows me to use the EPR setting of 3 without worrying that it has introduced the centrals that can be associated with both EPR and with other variations in pressures. Under advice from my doc, I moved from 6 to 7 for a while then to 8 and finally to 9 - but it was watching it all in Sleepyhead that made me comfortable with doing that.
oh - by the way, I love sleepyhead! It helps me know how well my treatment is serving me from an objective standard. I can correlate the subjective how do i feel and my doc and I can come to a more tailored program for me.
I use sleepyhead for my own data, checking my dad's data, and also my sons data. For my own, I have installed a flashair card and configured it to be in STA (station) mode. It signs on to my wifi router and then I use flashpap free software to go get the data off of it. No sneaker-netting the card!
Right you are. Every insulin dependent diabetic I have ever known is encouraged strongly by the medical community to test and tailor the insulin dose to the numbers and situation. Their lives depend on it, since blood sugar needs to be kept within a certain range in order to support life. With CPAP it is compliance that is on the line. The risks of over-treatment exist, but the risks of no treatment or under treatment are greater. If a person can manage to find a comfortable therapy and can see the difference it makes, I think that the likelihood of compliance, AND an appropriate treatment level increases exponentially. I have run into several people since I became a hosehead that were struggling with uneducated treatment that was completely ineffective. Leaving it up to someone else - dr, dme or whatever is more likely to result in poor treatment from what I have seen. My son just began treatment for very severe apnea - AHI > 100. The first night he may well have hung it up if I had not been there to help him increase his pressure from a suffocating (for him) panic inducing 7 to a level where he felt comfortable and able to withstand the treatment. Fortunately, he has a doctor who is happy to have an educated and engaged patient. She agreed with all of the changes we made. It is a very good point though, that he did keep his doctor informed, and is under advisement for what she considers OK.
100% in agreement with you Janet. The conversation is stale rather than dynamic with the current model.
I don't know anyone dumb enough to take forum participants advice as gospel truth... furthermore, I do not believe that the medical community has a corner on truth. Studies are valuable. Interpretation of the data that comes from studies is hotly debated rather than rigid. Anecdotal evidence also has a place, and forums are an ideal place to share that.
I am a data person myself and relate best to the concise presentation of the most data. I do like it when a lot of data is preceded by a short summary that enables me to quickly see if I am interested in reading further or would prefer to scan over that bit and circle back to it later. I like the overview that shows how my answers fit within the bigger picture.
Are they true centrals (confirmed by eeg) or centrals being reported by an autopap? People report that apap records centrals caused by pressure changes, and some who experience that do better with a tighter range, and lower or no "epr" or "flex".
If you are having a lot of RERA events that can be just as disruptive to good sleep as apneas - just means you are rousing faster than when they go all the way to becoming an apnea, and RERAs now count towards SDB Severity for most insurance providers.
is it really necessary to have a live moderator pre-review every post? I would just like to share my opinion that this is quite annoying and not conducive to natural discussion, and while it may keep out undesirables better it also serves to keep the site from becoming dynamic.
my AHI was not that high in my test, due to me not sleeping for the majority of the night I had the test, but I got scored as moderate anyway due to the clustering events during "REM" and the high number of RERA which counts towards RDI and can now be used instead of AHI for insurance. You should check again, things are changing WRT how Insurance companies handle apnea. I put "REM" in quotes, because I had a home test, and they really cant tell. the portion of my study identified as REM was the only part where I was actually asleep.
I fell asleep once without it (had taken it off) and have this vague memory of rousing doing a "kkkk" in the back of my throat and thinking this is how it was b4 cpap but not waking enough to put it back on
as far as worrying about taking forum posts as "medical advice"
1) Personal responsibility. The more we create a nanny state, the more people need to be nannied and the less prepared they are in all respects.
2) I think that the adhoc advice is a net gain.
I am not impressed by the majority of the medical profession. I suffer from conditions that are "rare" and getting a doctor to understand how those conditions need to be managed is usually 2 or 3 yrs worth of "training" every time I must make a switch, and I still have to be vigilant on my own behalf so that they don't try to send me down a standard protocol path that would be inappropriate under the circumstances. All the standard protocols and requirements to adhere to them have created a nanny state for medical professionals and cured them of needing to apply analysis. :D