An update on Amanda's "progress"

I didnt get a chance to read everything everyone wrote, so sorry if this has been said already, but you cant expect to change how many ever years of sleeping/eating habits in just a couple of weeks.

Getting your body adjusted to the therapy can take some time and patience.

Just hang in there.

Amandalee,

Hang in there.

I guess it's better to be moving in the right direction in your recovery, even if that movement is slower than you like.

That's what I like about this forum. It allows us to share our feelings with others who know what we're going through, and who are willing to encourage us along the way.

My experience can't even begin to compare to the struggles you've had, but I can tell you that I've also felt the sting of reality, when I realized that my expectations for therapy aren't moving as fast as I'd like.

For instance, the other morning, I had much the same experience as you. I woke up feeling like crap, and if it wasn't for an important meeting, I would have called in sick.

I ended up just shutting my office door later in the afternoon, laying my pounding, tired head down, and silently complaining to myself that this CPAP thing didn't seem to be the magic cure that I thought it would be (even though most days, I have to admit, that I'm feeling better).

Amanda, you've gotten a lot of good advice! I would like to echo the bits about a fairly narrow range of pressures on apap, say 2 or 3 at most (i.e. 10-12 or 10-13); and about shortening your ramp time.

Both may well help you, but of course, everyone is a little different.

I would like to add that sleep hygiene is important. Here's a link:

http://www.umm.edu/sleep/sleep_hyg.html

Finally, it all takes time. Forming new habits, giving one change enough time to show if its working or not before making another.... it all take time.

I really think the miraculous overnight changes for the better are the exception rather than the rule.


Best of luck to you!

Amanda,
Your words indicate frustration and fear of failure in addition to the potential job issues. Getting into a calm state before bed would help. Echo nailed what I was planning on writing better than I would, so see what you can do with Echo's advice. I started out with the immediate success sleeping and a great increase in energy, but now have good and bad nights. I deal with waking up, and I mean wide awake, by using the Dagwood approach. Eating a sandwich or some other heavy food to knock me back to sleep usually works and the weight loss can come later. First some ZZZs. Good luck and keep us posted.

Amanda,
Check out the "sleeping disorder program (must watch)" posts video for the sleep clinic section. They let folks go to sleep and then wake them up and make them do it again until they can quickly fall into a deep sleep. There is some torture you can seek out to improve your sleeping. The patients swear it helps, but who thought this therapy up? Modern medicine?

Same as you!! i have a resmed apap and my pressure prescribed is 10. So I punch in 7 to 11 in apap mode and figure it will sort itself out ,after all isnt that why we pay more for anything auto? for 6 months it fluctuated between 7 and 8 and i was exhausted! So I figure surely those sleep techs in hospital have a fair idea what they are doing so I reset my machine to 10 straight cpap. sleep way way better and rested now and the machine actually creeps up to 10.4 most nights. apap isnt for everyone. Hope this helps

Wow, thanks for all the great advice and words of encouragement. It really helps alot. No one can really understand what you're going through unless they've experienced the same thing, and (unfortunately) I know your experiences have all probably been pretty similar to mine.
Which sucks, because this isn't something I'd wish on my worst enemy... Anyway, my point is that "hang in there" is alot more meaningful coming from you folks than from my friends/coworkers/whoever, that all get to experience a normal night's sleep and don't feel like s**t all day...

Last night I was totally dreading going to sleep...stupid, I know. I was pretty tired by around 11:30 but stayed up for awhile longer channel surfing. Also stupid... I'll have to work on putting those sleep hygiene tips to use; thanks Bookbear!

I set my machine to CPAP mode at 10, which felt pretty dumb after having to harrass my doctor and argue with the DME to get it, but whatever. I switched the C-Flex to 2; and while I can tolerate the lower ramping time on auto, but have to have it at 45 minutes on straight CPAP.
I think I fell asleep a little faster than in auto mode. The weird thing was that I kept waking up from the mask being in an uncomfortable position, or my neck hurting from sleeping in some weird position because of the mask. That's new. I guess if it isn't one thing, it's another.

I also tried the Peace EO from Pur-Sleep. It's nice. It seems to have more "staying power" even in my wind tunnell room. I could still smell it (faintly though) when I woke up at various times during the night, and still a tiny bit when I woke up this morning. I think it helped. Something about it smells familiar... one of the oils in it smells like something in a perfume or cologne that I like, but I can't place it.

Anyway, I woke up around 7am with my neck really hurting and I was sick of messing with the mask, so I took it off and went to sleep until my alarm went off at 8. Most mornings, I can hit snooze for at least an hour, but today I couldn't just lay around in bed, even though I felt as tired and crappy as usual. So I dragged myself out of bed at 8:30 and made it to work by 9:30 for the first time in ages.
I still feel tired/sleepy, but I think I'm actually a little more alert than usual. I guess this is progress...?

Lately I've just been feeling like I'm a big disappointment to myself and those around me. Remember the obnoxious kid in junior high who'd be all irritated if they got an A- on something instead of an A? Yeah, that was me.
Feeling like I suck at my job, being overweight, never getting much accomplished, etc, upsets my "inner junior high student."
There's just too much in life that I want/need to do and not being able to do it stresses me out. So thanks for reading my rants and giving me the benefit of your experience!

amandalee wrote:Wow, thanks for all the great advice and words of encouragement. It really helps alot. No one can really understand what you're going through unless they've experienced the same thing, and (unfortunately) I know your experiences have all probably been pretty similar to mine.
Which sucks, because this isn't something I'd wish on my worst enemy... Anyway, my point is that "hang in there" is alot more meaningful coming from you folks than from my friends/coworkers/whoever, that all get to experience a normal night's sleep and don't feel like s**t all day...

Last night I was totally dreading going to sleep...stupid, I know. I was pretty tired by around 11:30 but stayed up for awhile longer channel surfing. Also stupid... I'll have to work on putting those sleep hygiene tips to use; thanks Bookbear!

I set my machine to CPAP mode at 10, which felt pretty dumb after having to harrass my doctor and argue with the DME to get it, but whatever. I switched the C-Flex to 2; and while I can tolerate the lower ramping time on auto, but have to have it at 45 minutes on straight CPAP.
I think I fell asleep a little faster than in auto mode. The weird thing was that I kept waking up from the mask being in an uncomfortable position, or my neck hurting from sleeping in some weird position because of the mask. That's new. I guess if it isn't one thing, it's another.

I also tried the Peace EO from Pur-Sleep. It's nice. It seems to have more "staying power" even in my wind tunnell room. I could still smell it (faintly though) when I woke up at various times during the night, and still a tiny bit when I woke up this morning. I think it helped.Something about it smells familiar... one of the oils in it smells like something in a perfume or cologne that I like, but I can't place it.

Anyway, I woke up around 7am with my neck really hurting and I was sick of messing with the mask, so I took it off and went to sleep until my alarm went off at 8. Most mornings, I can hit snooze for at least an hour, but today I couldn't just lay around in bed, even though I felt as tired and crappy as usual. So I dragged myself out of bed at 8:30 and made it to work by 9:30 for the first time in ages.
I still feel tired/sleepy, but I think I'm actually a little more alert than usual. I guess this is progress...?

Lately I've just been feeling like I'm a big disappointment to myself and those around me. Remember the obnoxious kid in junior high who'd be all irritated if they got an A- on something instead of an A? Yeah, that was me.
Feeling like I suck at my job, being overweight, never getting much accomplished, etc, upsets my "inner junior high student."
There's just too much in life that I want/need to do and not being able to do it stresses me out. So thanks for reading my rants and giving me the benefit of your experience!

Where do I begin?

Well, you are not that far off of being normal. Either normal for your range, or in the norm of people who crave to do good, get things accomplished fast, and move on to the next task or task set.

OSA and it's myriad of complications and associated ailments aren't fast fixes, generally speaking. You're going to go through days when you appear to have slept well, and still feel like the sleep was only a dream.

But, feeling energy increases sometimes, less foggy-headed in the mornings, or whatever... are likely small steps toward successful therapy.

Remember, as I mentioned above... you are trying to retrain your brain and body to not be captive to OSA. They have been controlled by OSA for years, and are not about to trust a machine quickly to sate their need to live. Too, you're trying to adapt the therapy and hardware to you, and you, all of your parts, have to adapt to the therapy. Most of us were not fortunate in a quick mating of therapy and hardware to body and mind.

Frustration and anger are normal. Feeling like you can't even control your own breathing is normal. Feeling dependant on others here to assist in whatever ways they can... that too is normal.

Go easy on yourself. Consider this: You are fortunate to be alive, diagnosed relatively early, and in treatment. You found, possibly, the best source of inspiration, support, encouragement and information for your condition. You are not alone, not ever.

Read my post follow-up on the headaches, as it gives some of the positive changes I have experienced and am undergoing. None are absolute, but all are welcome in whatever proportions I experience them.

viewtopic.php?t=23249&postdays=0&postorder=asc&start=15

And I am not highly successful in therapy, and finally reaching 50-plus-percent compliance. Of course, I still count all of the prior nights of non-compliance in the average. Were I to only count the past 50-nights I would be 92% compliant.

Amanda, give it time, lots of patience and little worry. Be ready for some brief setbacks, as many of us have had them. But, most of all... keep posting your worries, successes and even about any plateaus or setbacks. Part of the healing, as much healing as an OSA sufferer can achieve, is from positive psychological, spiritual and emotional energy.

Right on Nodzy! And tripple ditto to what everyone else also said.

Amandalee-- my mom just sent me a book for my birthday, it's very interesting and slightly relevant to this topic, because I notice you get down on yourself, just like I do. For example, last "night" I didn't get to sleep til 5 a.m.!!! Luckily I only work part-time and school hasn't started yet, but I still get down on myself as well (I'm gonna be screwed when classes start again). Buuuuuut I'm getting off topic.

The book is about this: we all have strengths and weaknesses, but most bosses (and ourselves) always work on ways to overcome our weaknesses. Well this book suggests not wasting too much time on our weaknesses, but using our strengths and building on our stregnths to become better people.

For example, the classic "American Dream" is : "You can be anything you want to be, if you just try hard enough"..... instead they say "You cannot be anything you want to be - but you can be a lot more of who you already are".

So how do I see that related to your situation? Perhaps you can't change the fact that you go to bed late (now or ever), or that you channel surf late at night (I surf the internet for hours sometimes instead of going to bed!).... but what you CAN do is that when you go to work, do you what you do best - when you are there, be there 100%. Look for ways to utilize your stregnths better at work, rather than trying to force yourself to fit a mold you know you can't fit. Perhaps in time the CPAP/APAP therapy will help you become a "normal" sleeper, but until then, focus on what you CAN do well.

Okay sorry I am being Pollyanna again. Sorry I must admit that writing to you is also a bit therapeutic for me, because I see sooooo much of my situation in yours as well!!

Anyway the name of the book is "Strengths Finder 2.0" and it's actually bsaed on a web site and the Gallup polls people:
http://sf2.strengthsfinder.com/content/ ... r-2.0.aspx and
http://www.gallupconsulting.com/content/?ci=61

Ok maybe it's the next gimmick thing but it's still interesting to consider.

Good luck... we are lucky to have the support of all the wonderful people on this site... bless you all!!!

for the neck problem... somebody posted on here about using one of those neck pillows... maybe that would help you?

What kind of pillow do you have on your bed... hard, flat or squishy?

I have one of those memory foam pillows--not the curved ones, just the regular pillow shape. It's pretty soft and squishy, and kind of flat now that I've been using it for awhile. Maybe it's time to upgrade. I use that one on top of a regular soft, flat pillow.
I've been thinking about getting a PAPillow, but I'm not sure how well I'd like it. Hmm. Maybe when I get birthday money at the end of the month.

I like the strengths/weaknesses thing. I tend to focus alot on my weaknesses, and everything I do wrong. Maybe I'll have to read that book.

You're right, Nodzy, I like to do things fast. I'm definitely the most impatient person I know, especially when dealing with myself. I guess I really am lucky to have gotten diagnosed relatively young, and to have gotten diagnosed at all, really, considering the ignorance about OSA in the medical community (or greedy pharmaceutical companies shoving drugs down everyone's throats. Whatever ).
It's also very good that I found this site, because I'm sure I would be alot worse off without the help I've gotten here.

Thanks again!

Daddysaur wrote:... They let folks go to sleep and then wake them up and make them do it again until they can quickly fall into a deep sleep. There is some torture you can seek out to improve your sleeping. The patients swear it helps, but who thought this therapy up? Modern medicine?

I believe it was the CIA... or maybe the Stasi....

They let folks go to sleep and then wake them up and make them do it again until they can quickly fall into a deep sleep. There is some torture you can seek out to improve your sleeping. The patients swear it helps, but who thought this therapy up? Modern medicine?

Maybe it's another "interrogation technique" used by the CIA. Sort of like the sleep equivalent of waterboarding, maybe?

I don't have anything else that can possibly be said but I want to add my support.

Amanda... I would look at your pillow if the neck stuff continues.