Very sad and confused-need advice

KMoore wrote:Lori,
You do know what you need, just sit quietly and listen to yourself. When you are tired it is hard to make tough decisions. It is so hard to see when you are so close, but some times it is right in front of you and you just need a little boost in the right direrction to do what needs doing.
Give it a try, what have you got to lose for one night, and maybe you have everything to gain.
Freedom from the encumberances that constitute Sleep Apnea Therapy, I don't know of many of us who would turn that down. Good on ya that you were able to lose the weight and perhaps regain restful sleep. You will never know until you try. And an oxygen monitor, will give you a real concrete answer, but don't wait till you can get that. Common sense tells me that with such low numbers, one night is not dangerous to you.

Hope this helps some how, I know I ramble.

Oh, please, you call this rambling on? Have you seen any of my posts?

You are on the money with everything you so concisely wrote. Yes, sometimes when you are tired and too close to the subject, you can't see it objectively. I guess the truth of the matter is, with low AHI's, I am really not posing too much of a risk to myself to sleep a night or two without the machine. I just can't believe how mentally tied I am to it at this point that I feel like I'm sneaking out of my parents' house at 2 AM or something just as sneaky by not wearing the mask for one night. I have myself so mentally trained, since day one of my starting therapy, to not go a night without it. Talk about being compliant? This is ridiculous.

Thank you for taking the time to say what you did. I appreciate the support.

Carley,

Thank you so much for those kind words. And I will never turn down the offer of a prayer. Thank you so much. It has been a pleasure knowing you, too. But I am not going anywhere regardless. You guys are stuck with me.

Hello Lori,
I’m sorry this is making you sad, but your numbers sound good. However, your tone sounds very tired and your comment about the snoring indicates the therapy helps to keep that in check.

From my perspective, if the machine helps to keep the noise down so that your husband isn’t being chased to the couch, it might be good to continue some level of titration for a little longer so you can get a handle around how pressure is affecting the snoring and his trips to the couch.

As for another sleep study, I don’t know if you’ll learn more than you know now. From what I remember you have a fairly new setup and can collect data when you can get the software to work. With that data, you should be able to make some objective decisions without a new study. You know from your last study that your oxygen desaturation levels aren’t far from the norm, so unless you think something has gone wrong, I don’t understand why that would be an concern. More importantly, no one number on any sleep study stands alone in making the decision. Instead it is the collection of values that give us the understanding and with your setup you have most of the information you would get from a sleep study.

For a sleep perspective, you might need to be less concerned about what the equipment is doing and just go with your best effort. Last night that is what I had to do because I was so tired I could not think straight from trying to tame my “Comfort Curve”. Today when I looked at my variables, the percent of variable sleep showed I didn’t get much restful sleep, but so what. Tomorrow is another day and I’ll try again tonight.

As for attitude helping to make things successful, you’re right. But we are all human, and life has its problems. If I make a bad decision, I look at why I decided it and then change the decision. It is like falling down. The only thing I know during the time I’m down is that I’ll get up and try again. Maybe when you’ve had some time to let some of the good thoughts posted above sink in you’ll be able to surface some other ideas or logic that will help you through your decision. If at that time you decide to stop, well do it knowing your can change your mind. My bride reminds me, “As a woman I always have the right to change my mind, so don’t expect anything different.”

Trust yourself on this, and give it a little more time. Now that the cat is out of the bag, other ideas or logic might help you see things in a different light.

I’ll be rooting for your from the left coast.

Good! I was just going to say PLEASE don't leave us!!! But was glad to read farther and find that you have no intention of leaving us. I agree with the others that as a first step I would want to try without the machine and mask and check oxygen levels. However I would aim for 2 weeks and at the end of 2 weeks see how I felt and decide if I should continue without cpap or not. If only we all had your problem. Congratulations on doing so well on your weight loss!
Keep us posted and good luck. Hope you will feel much better off cpap.

I would be one happy camper if I could get my AHI down that low. I'm 23, but it scares me thinking how many nights I go with my apnea untreated.

The advice about sitting and listening to yourself is so good, but its one of those things that many people don't listen to in times of stress, dispair, etc.

Keep going old woman! (You can make fun of me 4 that later!)

Lori - I doubt that I can say much that the rest haven't already. You, and only you, know how your body feels. I can tell from your posts that this decision is weighing very heavy on you---we won't feel that you're "giving up" if you go without it for awhile. It might just be a good idea to sleep without it for awhile, just see how you react and if you can tell a big difference. I don't have a sleep doc either and plan to post here in a minute for help with my numbers. You're very much loved on this site---keep us posted and hang in there!!
Kathy

Lori----Congratulations on your weight loss and subsequent "dilemna"! What a great "problem" to be faced with!

I find myself agreeing with those who suggest you get a pulse oximeter and find out your current oxygen saturation rate when asleep. And I want to add that, as I've said before, my hubby is a surgeon...and HE thinks that oxygen sat rates under NINETY percent are worrysome. He gets concerned for his patients at that level and is flipping out (relatively speaking of course) by 80 percent....So be careful. Certainly a trial of a few weeks or a month would not hurt anything, but it sounds as though you are getting CPAP treatment for your oxygen levels and not for your AHI......

Best of luck to you and stick around to help the rest of us! Soooo, did you get to do some serious shopping when you lost that 20 pounds?

Jan in Colo.

I have to keep replying to all the incredibly sweet and supportive comments that are being placed here. I just don't know what to say. DID I SAY THAT? ME, WITH ALMOST 3,000 POSTS SINCE MAY?

Anyhow, I just want to address a couple of points. And, Swordz, I'll get to your comment, you can count on that!

Roger, yes, I do have the software to monitor what is happening, but I can only do that with 4 cms. of pressure and higher. That is the lowest my machine can be set. And even though that is very little, it still can be considered somewhat therapeutic. That is what I mentioned I did for just over a week and got most nights between 1.3 - 1.9 AHI's. Of course there is no way to monitor the oxygen desats short of having a pulse oximeter on and I have to get one to see what the desats would be now. And the reason I believe they put me on therapy was due to it falling under 90%, although that's not critical. Maybe they thought the BP being borderline had something to do with that, which it turns out the therapy didn't help my BP at all, but the diuretic did.

Josie, AW! I can't leave this site. Don't you know, I'm the addicted one? I love you guys and couldn't leave whether I was on therapy or not. It won't take away the fact that I will still have a lot of opinions to offer and there is no real way to shut me up, short of a Tegaderm patch. So I'll be around anyway.

Kathy, thanks for the support. You know I love you guys, too.

Swordz, my little 23 year old buddy, OLD WOMAN, EH??? If this "old woman" was standing in front of you right now, she'd kick your 23-year-old butt...don't mess with this little old lady!!! (you know I love you-but I'll still kick your butt)

I have to say, I am a lot less stressed after getting this out on the boards here and listening to some opinions that aren't inside my head. I think my sadness is a combination of stress and indecision. It's like I had resigned myself to accepting this was it, I would be on therapy forever. I have totally confused myself now and it's just as life-altering to me to consider not using the machine as it was to have to come to terms with using it five months ago. What a merry-go-round it's been.

Well, I guess I'll have to wait and see. I may still end up right where I've been after all this anyway. But thank you to everyone for all your kind words and support. It means so much to me.

I know it's hard to read, but from what I can see from my first sleep study, my oxygen desats at their lowest only dropped below 90 during 48 mins. of REM sleep. All the other time was spent above 90. So how did they classify that as "moderate"? Is that enough of all the minutes I slept that night, which was 360 mins, to classify them as such?

Jan,
Thanks for the encouragement. I haven't done a lot of shopping, although I've had to replace the size 12 pants for 8's. Happy to say they are a bit loose, too, now. But I will be happy staying at the size 8 mark, being I'm just under 5'6". I think that's good enough for me. But as I've said, I am not changing the lifestyle I have developed of good eating, drinking a lot of water and exercise. So if more decides to come off, I won't fight it (LOL).

Thanks for your info. That is why I posted the above chart from my sleep study. Maybe someone can fill me in as to how bad it really was to begin with.

In this corner, Sleepless on LI...

In this corner, Swordz....

Bets anyone?!?!

Hello Lori my sweet friend. I had not planned on posting tonight . Had a very busy day and planned to just peek real quick and go to bed, but when I saw your post, how could I not jump in and tell you how much you mean to me and so many others on this site! you have helped so many of us and you can still offer your words of encouragement and advice no matter what you decide to do. There may be someone else in a similar situation that will benefit by your experience.

You do not need to feel guilty about seeing if you are ready to go PAP-less. 20 pounds is a significant amount. Hopefully you will feel better than ever! You do need to relax and have a quiet spirit so that you can sleep. You can always keep your equipment close by just in case you decide you need it.

There are times that I don't use mine (naps and back when my masks would almost break down my skin--that was before I found out about the Aura from you and others ) and many others pull theirs off in the night. Give it a try and be sure to let us know the results. Checking your 02 level is a good idea. And your hubby can let you know how he thinks the movement level and snoring are doing. So go for it.
I will keep you in my prayers.
Love,
Esther
Isaiah 26:3-4 Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the Lord for ever: for in the Lord Jehovah is everlasting strength.

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Here's a thought. If your O2 levels are a bit low but you don't actually have OSA, how about using O2 through a cannula? There would be less to deal with so maybe you would sleep better and still get what you need.
Esther
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I would encourage you to go ahead with your experiment with one caveat. Remember that the mind is very powerful and is responsible for things such as the placebo effect. Since you are so concerned about a bad outcome from discontinuing the cpap, you may well imagine that you are having a bad outcome. Are you 100% sure that your initial results were not at least partially a placebo effect? I know that my good results for my first 2 nights with cpap were entirely placebo related and placebo effects can last much longer than 2 days. I've also experienced strong placebo effects with certain drugs.

Good luck and I think you will be pleasantly surprised.

Hi Sleepless on LI,

I'll take a different perspective and probably take a lot of flack for it.

Three things I think you should consider are:

1) Your body and current lifestyle have changed in a short period of time which may well leave you feeling tired, irritated and apprehensive until you live with your new self for awhile and get used to it.

2) Anybody who posts an average of 18 times per day on this forum is going to be tired, let alone anything else that's going on in your life. What you really need to do is take a vacation. Do something radically different like going out with the girls to a male strip club. Just think of me gyrating on stage clinging to the pole - 5' 10", 265 lbs., all oiled up, bald, open heart surgery chest scars with a vibrating pacemaker, Activa mask with hose and a rose in my mouth. Hmmm, a money making opportunity I hadn't thought about. Have to see if the ol speedo still fits, they do stretch.

3) Little brain fog here so not quite sure. You said you were titrated at 10 but with your APAP you never achieve this??? Just for the hell of it why not set your unit on CPAP mode at 10 cm for a few days and see how you feel. Hard to see why the sleep study would be that far off.

Really appreciate the support you have given me and others. Hope you get this figured out and get the good feeling you have given to all of us. Being in limbo sucks so take the bull by the horns one way or the other. Don't forget - it's a woman's prerogative to change her mind at any time!

All the best.

Bob F

Lori,

GOOD GRIEF!!!.....I'm away from the forum for a few hours and come back to this mile-long thread that took me a long time to read. PHEW!

Ok.....here's my thoughts.
I concur with everything the rest of the posters have said.
One thing I didn't see mentioned was to ask you whether you've had any "blood analysis" done lately. I thought I gathered through my reading of the posts that you were still feeling tired. If this is true, maybe there's something else going on that's causing it.

Dunno......just a thought.

Good luck and best wishes in whatever you decide.

Den