Very sad and confused-need advice

Lori, I think the oximeter is a great idea. Along with that, I would suggest one additional thing. Try to get your hands on a video camera. One with low light capabilities, and video tape yourself sleeping. One night on cpap, and one night without. This may help you determine what role leg movements play in this, and it may give you a good indication of how restless you are when sleeping. Just make sure you tell your husband so you don't end up making any other types of videos.

And don't stress over this, all of us want to be off cpap. You can always go back on therapy if you feel worse. Most of us lived for years with severe apnea and we're still here, an experiment here and there isn't going to matter one bit.

Good luck,
BP

Wow, talk about a bunch of supportive friends!! This threat went from 2 pages to 3 pages while I was still reading through it. I'm glad that whatever you end up doing you still plan to stick around here because I was all set on getting to know you.

Even though doing a trial month sans-CPAP doesn't necessarily mean you will be done with CPAP, a lot of times anticipating change can be bring on stress even if it's a good change. I've only been on CPAP for just over two months, and a few times in the last couple of weeks I've thought of trying the night without CPAP, but I find myself wide awake until I hook myself up. It's like there's a little feeling of security in using it regularly. Even though I know I'll probably be on CPAP the rest of my life, if I did someday find out it didn't work for me I would probably have trouble giving it up... It's kind of like all those teflon frying pans I grew up with that my mom refused to threw out even when there wasn't any teflon on them anymore.

I ended up having a try without it for about four nights when I went on a trip to visit and go camping with some friends last month. I never realized how much I used to yawn until I started doing it again, my friends told me I my snoring sounds "really weird," and my sleep was so fitfull that one night I ripped out an earring just from moving around so much. So for me it was obvious WHY I needed to stay on CPAP.

For what it's worth, it I agree with the others that it's all about how you feel -- in mind and body. I think it's worth a try because you're not doing anything that's irreversable.

Anyway, hope you're feel better and not worrying too much about giving it a try anymore.

Scotty

[quote="BP"]Lori, I think the oximeter is a great idea. Along with that, I would suggest one additional thing. Try to get your hands on a video camera. One with low light capabilities, and video tape yourself sleeping.

<snip>

Good luck,
BP

Hi Lori

Like I said once previously: if I had your numbers I would be jumping up and down with joy. And I would get the hell off the machine. Keep your weight down, find out which sleeping position produces the fewest events (often side sleeping) and unplug yourself.

With your situation there has to be a better way than CPAP.

Good luck!

Lori,

Have you thought about talking to your doc about it? It is quite possible that you have some other sleep issue causing the desats. With significant desats, I would not be looking for advice from a forum, I would be talking to a pulminologist. Its up to you, but as said no one here is a doc, and its your life not ours. Something tragic happens, all we will know is that you aren't posting anymore...

Was that correct that you had desat to 54%?!?!

Since the last time I check this thread last night till now, I am seriously blown away. It is morning now and I don't want to get emotional, but how can I not? Talk about an outpouring of support?

T H A N K Y O U to each and every one of you for taking the time to write what you did and for the encouragement and support you've shown me in this mixed up time of mine. I seriously am bowled over right now. You've been able to do something I didn't think anyone could: Make me speechless.

Here is an update. Last night, I tried going to bed at 11:30 without the machine, but it was like the first night on CPAP when my adrenaline was out of control. To make matters worse, hubs was snoring worse than ever before. Maybe the noise of the mask would drown out some of it on prior nights, but it was loud last night. I realized that I was going to need something to get me to sleep, so I took a Lunesta which I do NOT take every night. By about 12:15 or so, I went back to bed and was asleep by 12:30.

The first time I opened my eyes was 5:30 and it was light outside. I got myself all excited, like I did the first time taking melatonin, and had a BIT of trouble falling back to sleep, but did. Next thing I knew my alarm went off at 6:30.

I feel great right now, better than I have in weeks. No, it wasn't the Lunesta because that never really did more than make the wakeups a little less memorable. I was actually comfortable for the first time in five months. Will this continue? Will I tire out as the day goes on? Will I need oxygen? God only knows right now. But that was the update.

I will still be around here for as long as you let me, so I will keep you posted as things develop. In the meanwhile, I will continue to read the posts AND REPLY (as if you could stop me). Thank you again to everyone for your loving and caring words. Back at ya!

Anonymous wrote:Lori,

Have you thought about talking to your doc about it? It is quite possible that you have some other sleep issue causing the desats. With significant desats, I would not be looking for advice from a forum, I would be talking to a pulminologist. Its up to you, but as said no one here is a doc, and its your life not ours. Something tragic happens, all we will know is that you aren't posting anymore...

Was that correct that you had desat to 54%?!?!

Guest,

NO!!! 84, not 54!!! OMG, no. That was the only number, too, below 90 the entire night and it was 48 mins. Phew, that scared me when you characterized my desats as significant. The sleep study called it moderate, but I don't know...

Lori,

You are so helpful to all of us (to me especially!) and can always be counted on to respond to even the "simplest" of questions.

I wish you the best of luck and from a newbie, I hope all works out well for you!

You are an awesome person!

Lori,
If the emotionality over your decision reappears, don't be surprised, whether your "experiment" of being off the equipment fails or succeeds. The cpap experience is a real love-hate one. I've been on a machine for about a decade. The thought of going off of it is terrifying, while, at the same time, the thought of being "free" is like dreaming about being in heaven! I attribute the ambivalence to "body wisdom." At a very profound level (subconscious or whatever) I know that the machine has saved my butt. Not just given me peaceful sleep, but probably prevented the many SERIOUS ramifications of prolonged sleep deprivation. Hence, the fear side of quitting the equipment. That said, the whole business of being wired up like a lab rat every night is at best wretched, even assuming optimal comfort with the equipment. Hence, the ambivalence and emotionality. If I am right, your body wisdom will most likely let you know if your decision turns out to be right or wrong, but, either way, expect it to be emotional. Don't second guess yourself or wonder why you are so emotional about it. It is, after all, in many respects, a life or death decision. Even those who might think my characterization to be a bit extreme would probably agree that it is at the very minimum, a QUALITY of life decision.

Sleepyred, thank you so much for your sweet post. It really was very kind of you to say what you did. It means a lot to me.

Snoreking, I hear you. I understand totally what you're saying. My problem was, no matter how energetic I became on therapy, I NEVER got to a stage where I was sleeping through the night. When people would write on the boards and say how nice it was to finally sleep through, here I still was, waking every couple of hours. It became a situation where I was now looking for ways to stay asleep, including sleep aids, which I don't want to do, just so I wouldn't lose that energy I had found for awhile on the therapy. And it wouldn't have matter, as it didn't in the beginning, if the wakeups weren't causing me to feel tired, but now they have and it's bad. It got to a point where I couldn't overlook what they were doing to me.

These past few weeks, it continually went downhill. I tried all sorts of adjustments to my machine, making sure it was set that way for awhile, long enough to see if it would matter, and even at 10 cms., my titratation rate, what I'd always get relief from no matter what, but I was still becoming more and more tired. It seemed that the equipment was negating any relief I had gotten up to this point, was now causing more harm than good, and I was as tired as I was before the therapy started.

I know I cannot judge anything based on last night, but I cannot believe how I feel so far today. Full of energy, alert, amazingly well. But, as with settings on the machine, one night does not a conclusion draw, or at least accurately. So I will have to see. Also, since my REM sleep oxygen level had gone down to 84% on my PSG for 48 mins., that is of concern to me. I spoke to my son, who is an RRT, this morning when he got home from work and he said that was not good. Anything that drops below 90 is not good as normal should be between 95-100%.

In any event, maybe with the weight loss, I won't be having these events as much, even though my event indices at the PSG were 0 apnea and 4 hypops, and on 4 cms., my experiment, they ranged between 1.3-1.9. And if I still had the PLM's causing the arousals, I would have been up last night, one would figure, yet I slept for five hours straight, until daylight. Ahhhh.

Okay. Nuff about this. Thank you for your insightful post. You, of all people, being on therapy for 10 yeasr, I'm sure have been there, done that and probably thought about every conceivable angle there is to this therapy and I appreciate your taking the time to give me your opinion.

Lori, I haven't read any of the other replies yet (3 pages and counting) but only your initial post. Plus I remember some of what you've said in other threads over the months I've been here. (My treatment must be working because I'm remembering things! )

It does sound like you could be a candidate for getting off CPAP. I remember reading your speculations on this well over a month ago. Your experiment with a pressure down at 4 sure seems to indicate that CPAP isn't doing much for you now, except maybe disturbing your sleep!

If your AHI at 4 was low and you didn't show any snores, I'd say give it a shot.

The real test is your O2 desat numbers, which you don't have. Maybe you can get your doc to order a home oxymetry (sp?) overnight test (do it without CPAP) and that will confirm whether you still need this.

Wouldn't it be wonderful to be able to give up CPAP? But if you do and "go away", you'll sure be missed!

Now, to go and read all those other responses.

Doug, haven't done the due diligence on this, but even at the highest quality a two hour movie will fit on roughly a 9 gig dvd. Extrapolate that out and you get roughly 36 gig for 8 hours. I certainly think that is doable. But, I ceratinly don't think you would need full screen, full dvd quality.

The MPEG 1 standard is used for video CDs and the MPEG 2 standard is used for DVDs; the bit rates range between 1.15 Mbits per second (fixed for MPEG 1) and between 5 and 9.8 Mbits per second (variable) for MPEG 2. So for a full nights recording at 5 mbit MPEG 2:

- a 480 min (8 hour) mpeg2 video file recorded at 5 MHz requires

28,800 seconds * ( 5,000,000 bits / second) / ( 8 bits / byte)
= 18,000,000,000 bytes / ( 2^20 bytes / MB)
= 17,166 MB

So at still very good quality we are talking about 17 gig. Correct me if I'm wrong on any of this, I threw it together, and this is not real world data, I have yet to do it myself. While an old pc might have some issues I would think a reasonably new pc with an ATA100 or SATA 150 hard drive should be able to keep up.

Cheers,
BP

Anonymous wrote:I have thought of this possibility but have a problem, how do you record more than 4 hrs (assuming you have an EP VHS machine & a 240 min tape).

Even if the recorder can do digital recording to a PC the data going to disk would swamp most computers even with 100s GB disks, after a bout 3-4 hrs.

How can us mere mortals record at least say 6 hrs ?

My DV camcorder can be put in a programmable time-lapse mode where it will record a few seconds, then pause a bit, then record again. The number of seconds recorded and duration of pause are settable.

It wouldn't be difficult to get an 8 hour night on a single 1 hour DV tape.

I believe many cameras now have this ability.

Lori, if you were closer I'd be more than happy to loan you my camera and tripod.

BTW, in re-reading your initial post and those subsequent, I get the feeling that you already know what you are going to do, however you are trying to find the courage to do it. I can understand that, it is a very emotional issue.

All I can say is: GO FOR IT GIRL! You've got a BIG group of friends cheering for you, and prepared to support you all the way.

I think from the sounds of it depression could be more of a concern for you than CPAP treatment. If you can sleep without it girl........get off it.

But the emotional thing and decision making problems you exhibit might be a reason to consult your Doctor on depression........ kicks me in the butt once in awhile.

Bill,

I know this is a huge thread now, but I gave it a try last night and posted what happened. Scroll back a little to see. Thanks for your input, as always.



flitestik,

I can see why you would think depression, but if you knew me, you'd know I am the furthest thing from someone who is depressed or has depression. I am USUALLY very upbeat, happy and energetic. Lately, though, I am exhausted and I believe it's due to what I've written above, in the prior posts. There is nothing at all more stressful in my life, things are (knocking wood) pretty calm and I have nothing in the world to be depressed over. I know that is not my problem. And I always thought depression made you sleep, maybe I'm wrong (LOL-I wouldn't know, believe me).

Thanks for the thought, but the only thing that has gotten me down is deciding what to do with stay or stopping the therapy.