Newbie question...monitoring data

I am so impressed with this forum, and with the many, many, informed members who have knowledge of the machines and are willing to help, and interpret data for other members.

My question is, what if I don't download the software and interpret the data, or have other members of this forum interpret the data? I made some calls and
evidently the medical company that provides the machine downloads the data every month, and changes are made accordingly, not sure yet
if that data is interpreted by my neuro or by a Sleep Disorder doctor (the doctor who signed the script for the machine was not my neuro, so
I imagine there's a Sleep Disorder doctor on board.)

I've been at this for almost a month. I can see the AHI number each morning, and other info available under "Info" on the display...so I know my AHI has been in the 1.5-3.5 range for the past several weeks (ever since I took the advice to wear a cervical collar that was posted on another thread.) I had no REM sleep at the Sleep Study (mostly Stage II sleep), and hadn't dreamt for years, but now I'm having some dreams...so I imagine that means I'm getting some REM sleep., I was considered moderate with an AHI of 19. I'm sleeping each night, all night (usually around 7 hours) with the mask on, and other than a red mark on my nose that lasts for a few hours after I wake, I have no problems with the mask or headgear, no leaks that I can discern at least. I'm not mouth breathing, and since I added the cervical collar, that's a little added assurance that I'm not mouth breathing because when I lie down it rests under my chin and I can't open my mouth. I had some central apnea at the Sleep Study, but mostly obstructive apnea, which doesn't surprise me because 1/2 my face and my tongue have very little movement and some atrophy...so my tongue sort of lays at the back of my mouth and to one side and I talk like I've had "one too many" because of restricted movement (I have MS). I've known for a long time that my tongue blocks my airway , because if I turn my head a certain way, my breathing is very limited. But it never occurred to me it was happening at night.

However, the technical challenge of monitoring and interpreting the data from the machine just seems overwhelming, and because of brainstem lesions,
my autonomic system is affected, so I monitor other autonomic body functions all day and take meds accordingly, and I
don't think I have the initiative to closely monitor the CPAP info as well.

So bottom line, how inefficient is CPAP therapy, if you just let the Dr. tell you what needs adjusting and when? Be honest, because if I have to I'm sure I'll
be able to figure it out with the help of this forum (and my husband's an IT guy so he'd help with the computer side)...I just need to prioritize and know how vital self-monitoring is for someone like me? So far I've looked at the results of the therapy, compared with the Sleep Study results as, "Something is better than nothing" and I have been pleased that the numbers have come down.

As a side note...I need to say I had no idea I had sleep problems of any kind, but I changed neuros and he insists on sleep studies for all his new patients. Therefore, other than the numbers, I don't know how I'd judge success or failure of the therapy. But I'm glad
to have this info and glad to have the CPAP...just feeling a slight bit overwhelmed by one more thing to keep up with.

Hi - a couple of things, might not sound too positive at first, but they actually are. One is that the vast majority of doctors do not understand or want to learn about data. They are quite happy to look at 'compliance' stats, which just means you're using the machine (and your insce. co. will be happy), but if you want to track your progress with any meaning you need to get a machine and the software that'll do it - and the software is available on the forum for free.

The second thing is that we all learn how to do it ourselves, and while we're more than happy to help you do that - posting graphs here at the start for help making sense of it all - I think for your sake as much as anything, learn to count on yourself (within whatever learning curve of time it takes you) to know what the basic numbers mean. There are no people here designated to do others' work, or do it on an ongoing basis, but some people here are incredibly knowledgable and will give you whatever help you need as often as you need it - especially knowing what you have to dealwith. The thing is, once you go over the info (as many times as necessary) with people here, you'll see that it's not at all overwhelming and you don't need to be 'technical' or a math whiz tho' I know it looks like that when you're new! After the first few times it will make more sense and you're free to do as much or as little as you're comfortable with - and you may be surprised to find it interesting . The major stuff is AHI (you obviously have figured that out already), leak rates (there are a couple of diff. types, but not complicated), pressure settings, flow rate (may be particularly meaningful to you), and a couple of others.

Julie wrote:Hi - a couple of things, might not sound too positive at first, but they actually are. One is that the vast majority of doctors do not understand or want to learn about data. They are quite happy to look at 'compliance' stats, which just means you're using the machine (and your insce. co. will be happy), but if you want to track your progress with any meaning you need to get a machine and the software that'll do it - and the software is available on the forum for free.

The second thing is that we all learn how to do it ourselves, and while we're more than happy to help you do that - posting graphs here at the start for help making sense of it all - I think for your sake as much as anything, learn to count on yourself (within whatever learning curve of time it takes you) to know what the basic numbers mean. There are no people here designated to do others' work, or do it on an ongoing basis, but some people here are incredibly knowledgable and will give you whatever help you need as often as you need it - especially knowing what you have to dealwith. The thing is, once you go over the info (as many times as necessary) with people here, you'll see that it's not at all overwhelming and you don't need to be 'technical' or a math whiz tho' I know it looks like that when you're new! After the first few times it will make more sense and you're free to do as much or as little as you're comfortable with - and you may be surprised to find it interesting . The major stuff is AHI (you obviously have figured that out already), leak rates (there are a couple of diff. types, but not complicated), pressure settings, flow rate (may be particularly meaningful to you), and a couple of others.

Hi Julie,
Thanks for the reply. I fully understand that it will be my own responsibility to analyze the charts once I understand them. I've read through Pugsy's threads on vital info, glossary, and definition of the different data off the charts. Lots of info for sure. I don't really have any complaints with the use of the machine or the mask...they prescribed the same one I used in the lab during the 2nd study, the one where they use a mask and titrate the dosage.,

It seems to be working well for me as far as comfort, lowered AHI, and my ability to sleep without it waking me up. I just wanted to know if I left it up to the Dr. to make the call as to changes, if I'd be getting incomplete advice (which I guess is the case since you believe most doctors don't understand the data, or don't use it to fine tune treatment.)

I guess I'll need to look at my charts, because as I said, I didn't realize I had a problem before the study, and in this month, even with the significantly lower AHI, other than dreaming some, and sleeping a little later (6:30 AM instead of 6 AM, we've always been early risers around here,) I haven't noticed any change in how I feel, and don't know if that's even possible because of my MS issues and the meds I take for symptomatic relief. So I know I need to use the CPAP nonetheless, and haven't found it hard to adjust to. I will keep at it each night because intellectually I understand that experiencing no REM sleep is not a good thing, even if I don't seem to feel the effect physically, of a lower AHI number. So the data will give me more insight as to how to fine tune it, or if it needs adjustment.) Thanks again for your reply.

P.S. My machine flashes a warning everytime I turn it on instructing not to remove the data chip. Is that just a standard warning with all machines?