Knowing now what I do-What would a Sleep Doctor have done?

[ShelaghDB]

Shelagh, sorry for butting in here but I have been trying to find a site where you may have mentioned how you night times have been going with your Autoset.
Have you got all your numbers sorted yet?
Would love an update.
I finally have a chance at buying a new machine. I am about to post a question.
I really hope you have sorted the Auto out.

Gaby, yes it has settled right down and i am back on track now. I just had my 3rd night of good sleep again and my "events" have gone back to....well, I don't want to say normal but they were going though the roof the other way and it tok a day or two for me to calm down----at least as far as my numbers go. I am not one of these that feels great or terrible depending on my numbers although I do have to admit, I have noticed an improvement in how I feel and i am beginning to wonder if I haven't felt 100% for some time now but didn't make a connection and just assumed I was stressed from business issues, etc.
Perhaps it wasn't caused by the issues I assumed and was a sign of sleep apnea.
Time will tell.
I will let you know if and when I find out the answer to that once i am sure either way .

[ShelaghDB]

Excellent work Rycharde, I have an Escape at the moment and I just cannot see the point of them, other than the obvious, but other than that the patient has not got a clue what is happening if it is doing the job or not, useless piece of rubbish.
They should be completely taken off the market.

Keep up the good work!

I believe I would have been one of the fortunate ones had i not found this forum.
I seem to have been lucky in that the number they have picked for me, pressure wise, was very good.
My ONLY problem in the beginning was that I was a mouth breather and with a FF mask I kept opening my mouth and became extremely dried out like cotton batten. It was horrible................until i tried out the hubbys nasal mask he couldn't use and instantly I found the right mask for me.

Everything was great, UNTIL i bought the auto-set and began to play with the numbers and it went downhill rapidly.
My apnea events were every minute IF i read my stats properly.....and let me say i am not positive i did but a couple of nights there it looked as if every minute and a half i was having one, all the way through the night or at least as long as i could keep the mask on for i kept taking it off..It was just all wrong for me.
Ive now got it in the exact same spot/numbers as I had the "brick", the S9 Escape and so far its great again.

So, it might just turn out that the brick was ok for me after all but i still like to be able to see the numbers which I can't on the Escape. And I imagine that I will soon slowly adjust my numbers w which again, I would not dare do on the Escape as I wouldn't have any way of knowing whether it was working, or spiking.

So that said, had i just been given the brick and did not know about the forum, I believe I would have been just fine.........or rather, shall I say, most people in my position would be fine.

My one problem in life and YES it is a problem, so don't anyone tell me its a great thing for its not, but i just MUST know everything which leads to asking a zillion questions....some more than once.......as i am also reading other books, etc.
I just can't not know.....but it can be oh so time consuming

( plus type long posts )

Anyhow, yes, other than that, I would have been one of the successful ones on the brick, I do believe....even though it would have been a brick.....

've got one, more for curiosity than anything else, since you can pick up a cms50d+ (the plus is important) from amazon for 50$ (less elsewhere if you shop around), it's a fairly cheap way to satisfy your curiosity, and make sure that cpap therapy is doing what it needs to do, essentially, making sure you keep your o2 levels up.

stick it on your finger, set it to record mode, then download the data into the windows app the next morning.

Yes i DO BELIEVE I am going to follow suit and find myself one of those little devices ;-) Thanks

[Sleepster]

Everything was great, UNTIL i bought the auto-set and began to play with the numbers and it went downhill rapidly.

But you ended up putting your auto-CPAP in fixed pressure mode, and now you are back where you were, with one distinct advantage. You can see your data and learn about how to adjust the machine properly.

[Shastzi]

What sleepster said.

Too many folks are flying blind and figure "I must be ok, because this is what the Dr. told me to do."
News Flash. A lot of docs out there are not trouble shooters or good at detective work.

:oh-jeeze:

They are not connecting the dots. (Present company of docs that reside here are excepted)

Newbies read on:



Getting the data every night shows a much clearer picture.
ie: You were great for the sleep study at XX cm of pressure but there are some nights you need more pressure or less.

An annual sleep study can totally miss what is going on the previous 364 days of the year and it's value
it limited to a snap shot just to verify that everything is going ok.

Get the data machine and spend a few minutes a week working with the data.
It's not like choosing to watch a tv show or skip it. It is as important as taking your blood pressure meds for the rest of your life.
This is your breathing cycle we're talking about and what you don't know can ruin you over time.

So, just DO it!

[Rycharde]

What sleepster said.

Too many folks are flying blind and figure "I must be ok, because this is what the Dr. told me to do."
News Flash. A lot of docs out there are not trouble shooters or good at detective work.

:oh-jeeze:

They are not connecting the dots. (Present company of docs that reside here are excepted)

Newbies read on:



Getting the data every night shows a much clearer picture.
ie: You were great for the sleep study at XX cm of pressure but there are some nights you need more pressure or less.

An annual sleep study can totally miss what is going on the previous 364 days of the year and it's value
it limited to a snap shot just to verify that everything is going ok.

Get the data machine and spend a few minutes a week working with the data.
It's not like choosing to watch a tv show or skip it. It is as important as taking your blood pressure meds for the rest of your life.
This is your breathing cycle we're talking about and what you don't know can ruin you over time.

So, just DO it!

Shastz, This is exactly what I attempt to ibstill in new users to XPAP therapy. Well said! In my case, 4 1/2 years after starting CPAP, I was handed an APAP machine, and am getting better sleep, feel better than I did before (and I felt pretty good I thought) and am finding out that over the years, through weoght loss and various medical conditions, my pressure has changed, so now it's much higher than it was when I was first titrated. The years change us physically, and mentally and the changes aren't always for the better! I know now that I will never go back to straight CPAP mode. But, I have the option if ever I want/need to. That's the point, the option is there.
DME's may be the manufactures customer, but we the patients can have a large influence on what the DME buys from that manufacturer, one patient at a time. I'm working on/with one DME here, but there are several DME's in this county, which leaves a lot of room for others to do the same thing. One DME getting more of the business from patients can have an impact on the other DME's and change can come about. If the patient gets what they want and need, then that sets a trend for others to follow.
OK, I'll get off my soap box and let you all co as you wish with this. I'll keep doing what I do best, and if this particular DME ever puts me on their payroll, you will be the second ones to hear about it!
Enjoy,

[Gabby]

Shelagh, sorry for butting in here but I have been trying to find a site where you may have mentioned how you night times have been going with your Autoset.
Have you got all your numbers sorted yet?
Would love an update.
I finally have a chance at buying a new machine. I am about to post a question.
I really hope you have sorted the Auto out.

Gaby, yes it has settled right down and i am back on track now. I just had my 3rd night of good sleep again and my "events" have gone back to....well, I don't want to say normal but they were going though the roof the other way and it tok a day or two for me to calm down----at least as far as my numbers go. I am not one of these that feels great or terrible depending on my numbers although I do have to admit, I have noticed an improvement in how I feel and i am beginning to wonder if I haven't felt 100% for some time now but didn't make a connection and just assumed I was stressed from business issues, etc.
Perhaps it wasn't caused by the issues I assumed and was a sign of sleep apnea.
Time will tell.
I will let you know if and when I find out the answer to that once i am sure either way .

Shelagh that is good you have had a few good nights.
Is that with a fixed pressure or an Auto one?