newbie needs advice...

fkarl · Post by **fkarl** » Fri Feb 13, 2009 10:39 pm

about increasing pressure. I am on cpap 4 days now, 100% compliant slept from the moment I put it on..... it just feels right. The hose is a pain when I move around but I'll figure that out. I am still waking up several times in 8 hours but it is due to leaks that I am immediately aware of, I make the needed adjustment and back to lala land. I am dreaming for the first time in about 12 years!!!! (I think I have needed this therapy for about that long now that I look back.) Ok, so, the question..... My pressure is set at 10cm. I would like to be able to sleep in any position other than my right side, (I have been sleeping on my right side for about 12 years, IF I roll to another position, I wake up and roll back within five minutes or so. It has gotten so bad that my hip hurts for a couple of hours after I get up. Can hardly walk when I first "wake up".) SO, at 10cm, I can not lay on my back, it appears that the pressure is not enough and I still have an event or two withing just a couple of minutes and have to roll to the right. The guy that brought my machine, (I got home from the sleep lab on monday..... I was sobad they said they'd get someone out that day. That it might be life threatening for me to ever go even one more night without it.), said that I should not adjust the pressure. Leave it where it is set.... then he showed me how to change it...... Is this just his way of saying, "its really ok to do what you want but I have to tell you to leave it alone". Or should I really leave it alone? They sent me a chin strap that for three days I used... left it off today and actually slept better! We'll see what tomorrow brings. ANyway, I am thinking of going to 11cm and see what I get. Is this a good idea or should I give it more time and see if I adjust?? I can not believe how much difference this thing made in one night. I can think, I am happy, I don't walk around looking for food even though I just ate..... all the stuff they said can happen has started to happen and this is just 4 days in!!!! I am so excited! As someone who has been on night shift for 12 years come April, this hose thingy is a godsend. Wish I had done it sooner. I have so many questions...... been on this board just reading every chance I get. Didn't know about the depression thing, but I am sure that I was. Didin't know about the food/apetite hormone thing but as an athlete at 22 that has turned into and 265lb couch potato at 38 I know it was affecting that part of ly life.

I want to ask, whats normal from here on out. How long will these "improvements" continue? It seems that every day so far I feel even better but can't conceive how that is even possible. (my windshield seems to be getting washed even better every day.) What about weight loss?? I feel so much more motivated to do my part, cravings seem to be gone for the most part.... (Genreal Tso's was a favorite before I was fat.) How long before I am back under 200lbs??? What about the "dark thoughts", how long till those go away, (I am already having way less). All the grumpiness and irritability? seemingly 100%less already..... I want to ask all these things, but know that its probably different for everyone. The figure I keep seeing is 30 days, I have a hard time imagining feeling better than I do right now but if thats the case it would mean 100% times 30 days, exponentially....... lets see, twould be about.... well my calculator doesn't even go that high!!!! I know I have to eat right and get more exercise, started taking a daily multi-vitamin, I'll do my part. Can't wait to see how great I can be!! Thanks to you all for being here. I'll continue to read and learn, but I may still ask questions too. Thanks again!

rested gal · Post by **rested gal** » Fri Feb 13, 2009 11:02 pm

fkarl wrote:100% compliant slept from the moment I put it on..... it just feels right.

Wow, you're doing great, karl!

fkarl wrote:The hose is a pain when I move around but I'll figure that out.

Here are some ideas for that...think of being a fish on the end of a slack line held out of the way overhead.
LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

fkarl wrote:The guy that brought my machine, (I got home from the sleep lab on monday..... I was sobad they said they'd get someone out that day. That it might be life threatening for me to ever go even one more night without it.), said that I should not adjust the pressure. Leave it where it is set.... then he showed me how to change it...... Is this just his way of saying, "its really ok to do what you want but I have to tell you to leave it alone". Or should I really leave it alone?

That's most unusual, for the person setting up the machine to show you how to get into the therapy setup menu where you can change pressure and other settings. I wonder if he was just showing you how to change the ramp starting pressure, or something like that. Can't imagine him showing you how to change the therapy pressure itself, but if he said "should not adjust the pressure -- Leave it where it is set" that sure does sound like he was showing you how that's done. Very odd.

Me, well, yeah...I'd raise the pressure myself if I thought it was not keeping apneas at bay when I turned onto my back.

fkarl wrote:They sent me a chin strap that for three days I used... left it off today and actually slept better!

Was a chin strap put on you at some point during your sleep study when they used cpap on you? If so, the sleep tech probably noticed you were breathing through your mouth (and they were not using a "full face" mask to cover both nose and mouth) at least some of the time during sleep.

If you were given a machine that records more information than just "hours of use", it would be a good idea to check for leak data as soon as possible. Mouth breathing and/or mouth air leaks can wreck treatment. What's the full name of the machine you were given? The name is usually written across the top of the machine.

fkarl wrote:ANyway, I am thinking of going to 11cm and see what I get. Is this a good idea or should I give it more time and see if I adjust??

I'm not a doctor or anything in the health care field, but my opinion...I don't think there would be any harm at all in trying 11 cm, or even 12, to see if that helps you breathe better when you turn onto your back.

fkarl wrote:I can not believe how much difference this thing made in one night. I can think, I am happy, I don't walk around looking for food even though I just ate..... all the stuff they said can happen has started to happen and this is just 4 days in!!!! I am so excited! As someone who has been on night shift for 12 years come April, this hose thingy is a godsend. Wish I had done it sooner.

So glad to hear you're already getting such good results in how you feel!

fkarl wrote:I want to ask, whats normal from here on out. How long will these "improvements" continue? It seems that every day so far I feel even better but can't conceive how that is even possible.

Seems to be different for each person. If you do have any little setbacks, don't worry.

In this topic:
viewtopic.php?t=6234

A very experienced cpap user nicknamed Perry wrote his description of recovery:

Which brings up the question of "What is feeling good?" Here are how I define the recovery and treatment process as I experienced it.

"Walking Dead" is where most of us start at. That is how a person with severe OSA problems feels before PAP. You seem to sleep very well - but am always tired, cannot think hardly at all, and can barely function well enough to eat, bathe, do a basic job (with not a good performance), and usually come home to die in front of the TV and sleep (you can sleep at the drop of a hat). Life is no fun at all, and you can be extremely frustrated because you know that something is wrong and you used to be able to do better. Your personal relationships sink to all time lows. You are probably so far out of it that your "other" in life may seek others for intellectual level or intimate companionship so that they can have a life at all (The best time to tell your “other” that you love them or care for them is before someone else tells them – I suggest that you do so daily – starting right now: even if you are not in the “walking dead” zone).

"Basic Treatment" is the next step. In my case this happened first on CPAP, then on AutoCPAP that was set-up totally wrong for me. All the sudden you feel much better. You start to notice that there is more to life than you have been experiencing lately. You now find the energy to do things in the morning you really should have been doing all along like flossing teeth, or some house cleaning. But you still cannot think clearly like you used to, while your job and personal relationships improve a little, you still come home from work exhausted, and retire to the TV or recreational reading because you don't have the mental energy to do anything else.

It is amazing how well you feel compared to before - but you still don't have the energy that you remember (or that you see other people with). Naps are still needed if you are to function at all throughout the day. Often it takes a couple of months – but there comes a point where you know that you are not where you should be.

I will note that most sleep Dr’s are satisfied once a person progresses from Walking Dead to Basic Treatment. They consider you a success, and are not likely to provide much support past this point. My personal experience is that I was better off dealing with a family Dr to move beyond this point as I was dealing with other health issues.

"Advanced Treatment" may follow. Here your feel so tremendously great compared to before. Life starts to be good again; you can see that there is a future (especially in the morning when you get up). Your sleep seems to be under control, you have the opportunity to do things in your job and personal life that you could not even imagine before. Mentally you can start to think of several different things early in a day. But you still feel run down in the afternoon (this must be normal you figure) and look forward to bed each night.

"Mental Zest" is where you want to be, what happens when treatment is really working well for you. All the sudden your mind and life is free again. You typically wake up feeling great, can do multi-tasking of different mental task (which really helps your job and personal life), and have energy all day. Can stay up much of a night if needed - with energy and mental involvement - without major effects on the next day. You can see how to make life great once you solve those problems that accumulated when you weren’t feeling so well (and some of those problems can be major issues to solve). You finally realize that this is what normal life should be. You may recognize at this stage that this is how you felt when you were a teenager. As long as you have a positive attitude about yourself and life - you are ready again to take on the word…

It took me years to get to the Mental Zest stage. I would like to claim that I can stay there. Pollen season knocks me back to the Advanced Treatment, and excessive work hours can easily knock me back to the Basic Treatment Stage (simple exhaustion). Proper diet, nutrition, and exercise are also required to keep you at the Mental Zest stage.

May each of you have a safe and quick journey to “Mental Zest.”

Perry

fkarl wrote: I know I have to eat right and get more exercise, started taking a daily multi-vitamin, I'll do my part. Can't wait to see how great I can be!! Thanks to you all for being here. I'll continue to read and learn, but I may still ask questions too. Thanks again!

Ask all the questions you want, karl. Welcome to the board! You have a great attitude about "cpap." You're going to do fine. Heck, you already are!

fkarl · Post by **fkarl** » Sat Feb 14, 2009 8:28 am

by the way.... i turned the ramp feature completely off. Hate waiting for it to "get up to speed" so I can sleep. I am usually asleep in less than 5 minutes. This is good no?

ozij · Post by **ozij** » Sat Feb 14, 2009 8:35 am

Very good.
Ramp is only there for you comfort. No need to use it if you can fall asleep without it.
Welcome to the board Karl.
O.

SharkBait · Post by **SharkBait** » Sat Feb 14, 2009 8:58 am

Karl,

You da man!!! How can we instill this attitude into more new CPAP'ers (of which there's a 50% failure rate?). The attitude of "this is NOT optional!!!".

I'm curious as to why you're wanting to increase your pressure? It sounds like it's not broken? If you're already feeling better, it's not like an extra CM will make you feel even better? I gather you don't have the software and in deference to Brad Pitt I'll say that definitely isn't mandatory, but what are your AHI readings looking like? I think that model displays them on the LCD...

I'm wondering if you have a memory foam mattress or mattress pad. Those things can be insanely expensive, but I found a really cheap (around $150 for a king size) 4 inch memory foam pad on the internet. Now to be sure, you get what you pay for and after a couple of years use I can tell you that it won't be too much longer before I have to start searching for a "real" memory foam pad, but this was fine to try it out. It's really nice though. I've noticed a little stiffness from sleeping in the same position for long periods of time (something new to me...), but I'm never sore like you say because the memory foam will mold to your body, thus relieving a lot of the stress points causing you pain. Just a thought...

carbonman · Post by **carbonman** » Sat Feb 14, 2009 9:19 am

fkarl, sounds like you are on the road. Keep going.
You're doing fine.

The improvements happen everynight you strap on that mask.
If I was listening to me tell my story of improvement since I started
cpap, I don't know that I would believe it.
I am a totally different person than the one who started cpap 8mths ago.

fkarl wrote:It has gotten so bad that my hip hurts for a couple of hours after I get up. Can hardly walk when I first "wake up".)

I would suggest that you make contact w/that 22yr old athlete.....
he is still in there, just needs to be awakened( pun intended).

I am a side sleeper also, w/hip pain, from a bike accident.
I would suggest you explore yoga.
Specifically the pigeon stretch.
It stretches the piriformis muscle. It is internal to the hip joint.
It is the primary cause of sciatica.
Also consentrate on strengthening your lower back.
If you're interested, pm me and I can link you to a great program
that will do all those things.

fkarl wrote:I know I have to eat right and get more exercise, started taking a daily multi-vitamin, I'll do my part. Can't wait to see how great I can be!!

You have the right attitude.
So far, my "how great I can be" horizon continues to expand everynight.

All the best for you as your journey to a new life begins.

fkarl · Post by **fkarl** » Sun Feb 15, 2009 4:31 am

SharkBait wrote:Karl,

You da man!!! How can we instill this attitude into more new CPAP'ers (of which there's a 50% failure rate?). The attitude of "this is NOT optional!!!".

Well, its NOT optional. If I don't do it, i'll die. its that simple. Thanks for your enthusiasm though, never been called "Da Man" before.

I'm curious as to why you're wanting to increase your pressure? It sounds like it's not broken? If you're already feeling better, it's not like an extra CM will make you feel even better? I gather you don't have the software and in deference to Brad Pitt I'll say that definitely isn't mandatory, but what are your AHI readings looking like? I think that model displays them on the LCD...

I am still not able to fall asleep on my back, the one position I'd really like to sleep in. It feels like I am having a central although my nurse wife tells me this is not position related, If it was a central, i'd have em no matter what position. Would increasing the pressure help?? I wonder.....

I'm wondering if you have a memory foam mattress or mattress pad. Those things can be insanely expensive, but I found a really cheap (around $150 for a king size) 4 inch memory foam pad on the internet. Now to be sure, you get what you pay for and after a couple of years use I can tell you that it won't be too much longer before I have to start searching for a "real" memory foam pad, but this was fine to try it out. It's really nice though. I've noticed a little stiffness from sleeping in the same position for long periods of time (something new to me...), but I'm never sore like you say because the memory foam will mold to your body, thus relieving a lot of the stress points causing you pain. Just a thought...

Nope. But I do have a sleep number bed.... although I sort of think its so much hocus pocus.....I'll try and adjust it till I can sleep in another position.

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