number "addiction"?

Just throwing some of my (random) thoughts….

I’ve been on CPAP therapy for 19 days (I feel like a kid still counting days… ), and I have to acknowledge I did not do much research before being fitted with a machine. I since have joined this great forum and find myself spending a lot of time, daily, reading postings and generally learning about my condition (and conditions of others!). I am also trying to switch to a machine that lets me get some info on my actual sleep quality, as I am not doing as well as I thought I would/should (worst than before, really…). With my current machine, I can only access the number of hours it is on, info I can get from my alarm clock!

My concern/question is that, knowing myself, I will probably check my numbers first thing in the morning and start the day influenced by these numbers (feeling tired or not…), as opposed to listening to my body… I am concerned that I would pay too much attention to the process and end up having my life revolve around understanding my sleep pattern, and my mood controlled by numbers.

Have any of you felt that you can reach a point where monitoring all this, and becoming an expert, is too time consuming for what you get in return (assuming the sleep therapy works fairly well, of course)? I do not want to talk about addiction, obviously, but isn’t all this (self monitoring, time in forum etc) taking away from time spent with family and friends (especially since it is a life-long condition… no “remission” here)? Do you feel there are things you used to do you do no longer do because of time spent on sleep disorder related activities (not the sleep disorder itself)? Do you feel, to a degree, that this condition can exclude others (family/friends) who do not share this condition (as supportive as they might be…)?

In short, I am trying to prevent my sleep disorder from controlling my life/health, and to have better quality waking hours. So, I do not want to spend these extra quality waking hours fixating on the therapy!… How much is too much and how do you put things in perspective so you do not loose yourself in the process? (Don’t want to be defined by my condition) Really interested in long-timer’s perspectives (and newbies' feelings…)

Hi, Xian and welcome to the forum.

I can't talk for anyone except myself, but here goes.

I got a PB 420E and the Silverlining software about 2 years ago. I started off checking my numbers every day or so for the first couple of weeks. Then, like everything else, it tapered off to checking once a week, then to once a month, and lately, it's been every couple of months (except when I tweak my treatment). Kinda like a gym membership, no? LOLOL

Now, I go by how I feel in the morning (and for me, that means after waking up, having a shower, brushing teeth, having a cup of coffee and reading the newspaper LOLOL). I check my readings every 45-60 days now and I'm really pleased.

Some folks here have data cards that require reading weekly or they lose data (heck, sometimes they lose data anyway). The Silverware software will handle a whole bunch of days (ok, be technical....nights! LOL) without losing information. Nor does it require an additional interface to the computer. It comes with a cord that hooks to the back of the APAP and plugs into the computer. Easy to install and reliable. No, I don't work for PB, nor do I get any consideration for these words! This is just my experience with the PB 420E.

Sooooo, I guess it would boil down to how obsessive/compulsive you think (or know) that you are.

No matter what, IMHO, it is a large advantage to have a machine that can store and download data. Like has been said so many times, what happens if you lose/gain weight? Do you want to have to pay for another overnight study?? Also, it seems that the folks who have the ability to monitor their treatment have a much better compliance rate than those who just "Do it because the Dr. says so". Your post seems to put you in the category of folks who wants to be involved and proactive in your treatment. So, go for it!

As for taking away time with my family, it only takes me about 15 minutes to download and find out what I need to know from the data. As far as other activities, nope, I don't think XPAP therapy hurts at all. If anything, it helps. I remember waaaayyy back when (and I don't claim to be an expert), I didn't have enough energy to do anything after work and on the weekends except try and catch up on my rest. Now, my 10 yr old son and I and my wife go and do and see to our hearts' content. And I'm awake enough to remember it all and to enjoy as well as participate fully. Work is also so much better. I'm not nodding off over the computer all morning and afternoon or drinking enough coffee to float a battleship to try and stay awake. So I guess I'd have to say that the therapy gave me back my family and my life.

Good luck.

Kajun

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CPAPopedia Keywords Contained In This Post (Click For Definition): 420E, APAP

I did give consideration to the same things before I purchased my new machine. I wondered if I wanted/needed the information, and just how fixated I would be about it. At first, I thought, hey, I'll know how I'm doing by the way I feel.

But then two things influenced me to get a machine that gave me statistics.

First, it was darned near impossible to get in for a sleep study. It was expensive, the place was horrible, my new insurance wouldn't pay for it for a long while, and I figured it would be cheaper in the long run to monitor myself - with the information gleened from this board.

My second reason was the increasingly obvious factor that my doctors didn't know anything about OSA. My questions went unanswered. No information was readily offered either. They had no printed materials or suggestions of where to learn more. I picked up more about OSA from one visit to this site than from my neurologist and regular MD combined. I realized that I had better be my own advocate if I was to give myself a fighting chance to deal with this.

I do check in here often, and usually learn something or try to offer something to someone else. People supporting each other through a medical condition that isn't being addressed in full by the medical community is an amazing thing to be a part of. I check in while on a break at the office, so it's not really taking my time from something important.

As for making the numbers too much a focus, I don't think I do. I'm still in the process of tweaking my system, and once I get it down, I'll just monitor it to make sure there are no changes required.

As it is now, and I've had my machine since January, I download every morning, glance at the number of apneas and my AHI for that night, and close out of it.

I had some of the same concerns when I first started. To combat letting the numbers control how I felt, I kept a tablet handy and wrote down how I felt before I allowed myself to look at the numbers. It seemed to work for me. Sometimes the numbers matched up to how I felt, and other times I was surprised. I don't do the writing anymore, but I still often ask myself how I feel when I wake up and try to guess what the numbers will be before I look at them.

I'm about 7 months into this, and before I bought the new machine, I had gotten to the point where I didn't feel I had to look at each night so in depth. I would look at the the numbers on the display and go about my day. Every few days I would write the data to the the card and upload the data to my PC, but I didn't look at it near as much as in the beginning.

When my numbers went up, I started looking in depth again. Now that I have the new PAP, I'm back to looking in depth daily. I will continue to do so for a while until I'm satisfied that I have it set to what is best for me.

Yes, it is can be time consuming, but I think it's important enough to take the time. I still spend part of my day reading here at the forum, but now I skip a lot of the posts where before I read each and every one. I don't think I'm really missing out on much that I had done before -- nothing that I considered important anyway.

Prioritize! ... what is important to you?

For me ... I began to notice that prioritizing what I should/want to do in my daily life didn't matter if my health continued to sabotage those priorities. So I have placed health right at the top cuz without it the rest is a waste of time and doomed to failure.

Numbers? I guess some would call me a numbers kind’a guy … I find them to be fun … maybe why I pursued a career in science? If you like numbers then I suppose you could become addicted to them just like anything else you might like … if not, you will look at your numbers as little as possible and do the other stuff you may be addicted to like family and friends or whatever.

The one thing I have become addicted to, is life … and I can directly attribute that to my PAP treatment. Before being diagnosed with and treated for OSA I thought I was on a fast track to the grave. Now, I think I will actually enjoy my path in the river of life … no matter where it may flow.

I guess my only addiction "problem" right now is actually trying to stay away from this forum

As I stated awhile back in another thread, the downloading from my card became part of my morning routine from the beginning. It gives me something to do while my coffee is brewing. AND, if I didn't do it, it would throw my whole morning out of whack.
For about the first year, I was a little more "intent" on scrutinizing the data and seeing where things were headed, but at some point, the "matter-of-factness" set in, my numbers are a little more consistent and it's more "Ho Hum".
Other than increasing my pressure a point or two about a year ago, I haven't changed anything in my therapy. Therefore, any fluctuations I can pretty much attribute to things that I've eaten or a few other factors......so I kind of make mental notes of what seems to cause those fluctuations......and either avoid them or do more of it.

The main thing I'm intent on is keeping a data trail of my therapy.....just in case any instance should arise as to my compliance. In which case, I could prove it.

Den

Yeah, the possibility to obsess is there as it is over anything. It's just a matter of whether or not you feel you will be able to keep from obsessing. I was frustrated with my Sleep doc and DME because I wasn't getting any information from either of them that would help me take control of my treatment or be an effective partner in that treatment. I feel that it is their lack of trust and information that makes me obsess over this.

I have had to be on insulin before and take my sugar levels 4-6 times a day. We can be trusted to shoot ourselves up with a substance that can kill us if we OD and make adjustments to the amount of insulin we use based on our readings, but we can't be trusted to make adjustments to our pressures? Sorry, but that makes no sense to me at all!

I did obsess with the diabetes management for a while, but as others here have said, once I settled into a routine, it slacked off. Now that I'm no longer on insulin I check my sugars maybe once a month and then, only my waking ones. As long as they're fine and I feel fine, I don't bother with them any further.

I figure it will be the same with OSA. Once I get the numbers in control (to which I have to graciously thank this forum for the information I needed to do so) and I start feeling better, I figure it will be a fix and forget type situation with occasional tweaks and check-ins.

Happy sleeping,

Linda

I'm still relatively new to this and I'm learning a lot. I do think the amount of time you spend on CPAP stuff depends on how much you want to understand. I need to understand more details than most people (many of my posts will show that I ask super-detailed questions ). That's just me. My need to understand everything brings me to the forum very frequently.

I also really like the support the forum provides. People post their frustrations and the support they receive helps me as well - even if I haven't posted a frustration myself.

I enjoy the forum. I enjoy asking questions. And, I really enjoy sharing the things I've learned with others. I'm like that about most things in my life (I was a trainer in a previous job).

It just depends on what works for you. Since you're so new to CPAP it makes sense you'll spend more time here. There's so much to learn. As you understand things better and have more success in your treatment you may find you spend less time here.

Xian wrote:My concern/question is that, knowing myself, I will probably check my numbers first thing in the morning and start the day influenced by these numbers (feeling tired or not…), as opposed to listening to my body… I am concerned that I would pay too much attention to the process and end up having my life revolve around understanding my sleep pattern, and my mood controlled by numbers.

This is a very valid concern and I came up with a solution that works for me. I decide how I feel before I download my card. This could mean you download the card in the evening. I consciously decide - I feel good; I don't feel good; whatever... before I look at my numbers. That keeps me from allowing my numbers to control my mood.

It's definitely possible to become overly involved with the data; for me, it would likely be even worse to ignore it. As for basing my well-being on the numbers, this past Sunday night my AHI was 1.6, all from hypopneas, according to the machine read-out. Monday was NOT a good day, from the very start, in terms of how I felt. With only 15 minutes' difference in sleep time and an AHI of 2.3 Monday night, today (Tuesday) was a much better day, again from the start, in how I felt bodily. My brain can't fool my body that easily.

Well, I KNOW how I feel when I wake up, even before I download my data. For one thing I wait a half hour before downloading. Shower, dress, etc. first. Once the data is downloaded and I look it over .... that's it for the day.

Its this forum that is addicting!!! I'm retired so I find myself checking into the forum, sometimes several times a day, when I take a break from whatever other mischief I'm into, even daily "chores". I don't read every post but if the subject looks interesting I check it out.

My morning routine is to record my morning weight and body fat, then my blood pressure, and finally the stats from my CPAP's smart card. Obsessive? Not really.

I watch my diet and I exercise regularly, so the weight and body fat measurements just help me keep track of how I'm doing.

The BP measurement is because I don't want my doc prescribing BP meds based on a single measurement taken in his office once or twice a year. Whenever I see him, I hand him the previous 30 day stats. So far this has kept the dosage at very low levels, which is fine by me.

I started checking the CPAP data about a month into treatment and right away discovered that the pressure and mask prescribed weren't getting the job done -- not even close. That has lead to several months of tweaking and the numbers confirm that I'm making process. I still haven't hit the "sweet spot" but I am getting close.

Anyway, all of this data recording takes about five minutes of my life each morning and I rarely think about any of the measurements for the rest of the day.

Oh yeah, I do hit the start button on the coffee maker before I do any of this. Now THERE'S an obsession! That and M&M Peanuts. Darn it.

OCO

In that case, download your data at night when you get home.

I find I check it every few days.

Thanks all... Some good tips and insights in your answers...

I came across a posting from Dreamstalker from Oct 2006 when he was already concerned about being "addicted" to this forum... I am so glad you sill are! I see your name and a number of other names come often in the replies, and I am glad that you did not drop out as you got "used to your condition", and that you are still helping others, newbies in particular.

As for myself, I am a scientist, and one with an obsessive nature, bordering on OCD! (are there any other kind?) Like most newbies, I am frustrated by the lack of knowledge, or at least information, from the doctors and by the money hungry insurance companies and DME's... So it is very worst my while to spend a lot of time learning and reading (BTW, ANY GOOD REFERENCE BOOKS ON OSA?) I will just have to make sure to read the cues from my family and friends, and ease up when needed...

(BTW, ANY GOOD REFERENCE BOOKS ON OSA?)

I just bought the book
Sleep Apnea -- The Phantom of the Night from Barnes & Noble. Would I recommend it? Not really, if you've already found this forum, you can learn more than the book will tell you!! But it is a pretty good reference.
Here's the book info:

T. Scott Johnson MD, William Broughton, MD, and Jerry Halberstadt; with contributions by B. Gail Demko, D.M.D.
Forewords by Carl E. Hunt, M.D., Director, National Center on Sleep Disorders Research, NHLBI, NIH, William C. Dement, M.D., and Colin E. Sullivan, M.D.
Sleep Apnea--the Phantom of the Night: Overcome sleep apnea syndrome and snoring—win your hidden struggle to breathe, sleep, and live, The book is 336 pages in 8.5 x 11" format, paper bound, illustrated. Peabody MA: New Technology Publishing, Inc., 2003. ISBN: 1-882431-05-7