didn't it take anyone else a long time to see benefits?

kteague wrote:Time spent tweaking probably shouldn't be counted toward feel better time

Very good point, Kathy. I'ld drop the "probably" and use is as one the "cpaper' moto" list.


O.

i have to confess, i'm not even sure what this means (i swear i used to be a lot smarter! lol)

is it that each time i make a change or tweak my therapy in some way, it's like starting over?

thanks

By tweaking time I was referring to the time it takes some to achieve therapeutic treatment. For instance, someone who has been thru several masks and never been able to keep one on overnight, or stay asleep without waking fixing leaks and discomforts every hour or two, or someone who mouthbreathed for weeks before finding out it was sabotaging their therapy, or someone whose pressure was causing more problems than it fixed, etc.

I wasn't really thinking of when one is having some success and continues to make improvements, although limited success I would think would mitigate results. (I think this is where I was stuck so long.) I had some results, but in retrospect, maybe they paralleled how well my therapy was going. But some results are better than none.

I guess all I was saying is that those who stuggled immensely for weeks shouldn't expect that time to have been very productive in recovery. But no Sharon, I wouldn't consider every tweak as starting over. Gosh, we'd all go away crying if that was so.

Kathy

sharon1965 wrote:hi all
i've been on cpap for six months now (with one month off for septoplasty-april 3rd to may 3rd)...

Major tweak no. 1 - maybe counting should start on May 3rd?

-i've finally got the twilight/aura/whatever-it's-called-this-week working decently for me, with all the tips such as decapitating, stretchy tights-leg-straps, pad on forehead etc. and it's definitely the most consistently comfortable so far...

Semi major tweak ? Since when is "finally"? An uncomfortable mask can be the undoing of therapy.

-i'm on requip for periodic limb movement disorder, very low-dose with no side effects (apparently compulsive gambling and hyper-sexuality are things to watch out for, so moving to vegas is out ), though i have no way of knowing if it's working for the limb movement since i mainly sleep alone as hubby works mids; i do know that it's curbing the restless leg component in the evenings, and i'm back to being able to go to the movies on occasion...

Major tweak no. 2 -- since when?

i wake up countless times per night (i think i'm hyperaware-- checking for leaks)

That also has to be taken care of. Here's a suggestion, given to one of our members long ago by a specialist: Keep a bag of cotton balls near your bed, and each time you wake up, throw one to the other side of the room. Pick up and count in the morning. You can then give the doctor a fact based report of how really fragmented your sleep is.

By the way, are those real leaks waking you up, or it just your awareness that there shouldn't be any?

For me it was probably both, and before going to bed I learned to tell myself something like: tonight you're going to sleep, and leaks be damned. It also helped to know that leaks per se are not so terrible -- some leakage happens, and it doesn't have to wake you. Major leaks are something else of course. I think that for a while there I was getting "leak tuned" like mothers get tuned to a baby's crying --

Part of our ability to let go, fall asleep and maintain sleep has to do with our thoughts.

Having all those things to control and check is really bad for the perfectionists among us. I mean, can you imagine how difficult it is to sleep with the thought of the sleep report card you're going to get tomorrow? Which may show, God forbid, that you are not a perfect sleeper? Just worrying about that is enough to keep a person from sleeping...

O.

I have been reading and finally feel like I can add my bit. I started CPAP August 4, 2006. That reminds me it is almost a year for me. I am still not sleeping enough and I still run out of go-power in the afternoon. By the time I get home from work and do the cook and eat dinner routine, I am toast. Worthless. Fall in bed, barely able to find the energy to read, is the way I am. Granted, I am old, 66 years, to be precise.

I bought 13 masks before I eventually did the Aura decap thing. At the same time I started with an auto bi-pap machine. These two were huge changes for me, and improved things so very much. That happened in mid March.

I am one of those non-sleepers. A good sleep for me is about 90 minutes. I usually manage that when I first go to sleep. The rest of the night is fragmented into chunks of insomnia and naps, hence Catnapper. I think I can start counting good therapy from mid March or so, as that is where I became more comfortable with the whole CPAP situation.

Yes, I did try the doctors for general health, including my gp, the sleep doc, and the endocrinologist. Like you, my health looks pretty darn good on paper. All I need is to sleep soundly, and I imagine things would improve. I have added slowly increasing exercise and decreasing sizes of servings of food as well as paying attention to fat, carbs and calories.

Maybe what is happening to me is that the increments of improvement are small. I too would love to have the overnight success. That is dramatic enough to notice. What I am happy to acknowledge is that I am not getting worse. By that I am saying I am still breathing, have not had heart attack or stroke, eyes and ears still work, mind functions enough to keep me employed. Years ago I worked as a teller in a bank. A woman easily over 80 years old was a customer. I would say to her "Good morning, how are you?" Her answer always was "Able to eat." I took a lesson from that.

People tell me I am looking better. I know I am improving simply by the fact that I breathe at night. I have software that shows my results are good. I have to rely on that to think that in time I will arrive at my success level, whatever it is. I would not stop CPAP for anything that I can think of at the moment. It is bound to be better than the consequences of stopping.

I am sorry that is not the hopeful response or encouragement that would make you feel better about things. When I asked a similar question here months ago, some wise person told me that my lack of sound sleep might just be what is normal for me. Like it or not, I found that accepting that possibility helped me to quit worrying about it a bit. I do like to have the support of this wonderful forum to keep me going.

I wish you well, and hope that as you continue you will begin to see more and more success.

kathy
thanks for that! like i said, i used to be a lot smarter...i'm not only blaming osa, though, i was a little wild in the 80's!

i see what you're saying, you and ozij, both, and there is definitely some of that going on...i've never had a time when i just refused to put the thing on and keep it on, but i have had nights when i felt like i was adjusting every 1/2 hour and that kind of thing

the requip i started 6 weeks after i started therapy; the iron was later...and yeah, the surgery--while freeing me from meds i didn't need that didn't work and allowing me to breathe freely and feel 1000 times better--did interrupt my cpap therapy

so...yeah, now that i say i finally got something working for me in the interface department, i guess i should stop counting days, weeks, months and just get some damn sleep...i suppose the idea is that once you get everything working and into place--or something like it!--, your real therapy begins

and the leaks are definitely minor, if they exist at all--your idea that it's more that i'm aware that there shouldn't be any is bang on...what seems to be happening is that i roll over or move and check for a leak; this happens over and over through the night...if i had gotten the damn data from the beginning, i'd be able to trust by now that the large leaks are the problem...i will be taking care of that issue, one way or another

ozij, i love that cotton ball idea!!! imagine my hubby coming in from midnights and finding a pile of cotton on his side of the room! then again, back in my sleepwalking days, he'd come in to find all manner of weird things, including rearranged furniture!! this is definitely an improvement.

so thanks again kathy! and thank you ozij, for your insighful input...i'll be getting that bag of cotton ball out for tonight!

sharon

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I would not stop CPAP for anything that I can think of at the moment. It is bound to be better than the consequences of stopping.

i hear ya, catnapper

i'm not about to give this up, either...i read kaz's thread about his brush with death and while i already knew on some level that cpap would at the very least help me to avoid some pretty scary stuff, his story really brought it home...i will continue to plug away at this; hopefully one day i'll actually notice a difference, but in the meantime i will at least know that it's keeping me alive

thanks for sharing your experience--so far--with me

take care
sharon

ozij, I am very glad that you brought up Kathy's history. If anyone receives points for trying, it is definitely Kathy. As I read her contribution, it was very reminiscent of a large number of the issues that she has faced. She was probably too humble to include all of her problems.

Sharon, I was a bit out of writing form the day I posted, and I apologize if I seemed flip. I probably should have waited a day to come back--then again, maybe I was suffering from unknown mask leaks! I, too, have an appointment for a new sleep doctor as I think that my current treatment isn't as effective as it could be, nay, should be. (Oh, joy, using my non-favorite mask due to a possible silicone allergy, don't you know?)

Next, Sharon, I wonder if our problems have anything to do with the rivers and lakes that separate us? (LOL, but Sharon and I live not too far apart in different countries.) Is it in the humidity?

Kathy makes a good point about thyroid treatment. It does seem to be rather a problem for many, and there was a book out not too long ago that was stating the possible problems with most treatment (or non-treatment) based on the basic TSH test. I was told that one needs a T3 AND a T4 to properly assess thyroid problems, but that was by a vet. She is probably correct though, as she is a person using thyroid medication.

Sharon, remember that you could not use the CPAP treatment during your septoplasty and recovery--that is a definite step backward. Hang in there, and let us all keep seeking the ultimate treatment.

And Roberto, now I recognize your postings at the beginning. I don't have to go to the end to double check. That is a good picture, too! Just ask your wife; I'm guessing that she likes it, too.



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Hi Sharon,

I figured you went through my rant so I'd return the favor. I figure by the time I see the pulmonology MD, I should be at least as knowledgeable as he is with everyone's insight. At this point I can't offer any advice, but I'll keep you in my prayers and know that I'm behind you (only not so close)...........

VT

thanks VT

see? your post hardly qualifies as a rant!

mine, on the other hand...

i'm so happy for you that you found this forum before getting your set-up...now you'll be able to avoid at least a couple of my mistakes; there are so many people on here who can guide you to the best possible therapy; take advantage of this vast knowledge base and you'll be on the road to recovery in no time

knowledge is power

take care, VT, wishing you all the best

sharon