An update on Amanda's "progress"

[amandalee]

So last Monday I finally got my AutoPAP machine. It’s the M Series Auto with C-Flex. It looks exactly like the CPAP machine I had before. You’d think with it being an auto, I’d have an easier time adjusting to it than I did the straight CPAP, but I’m not. It’s so weird. I can’t figure out exactly what the problem is.
I haven’t been able to get the Respironics software to work for me yet, so I’ve just been going by what’s available on the LED screen. It looks like my average pressure is about 9.8 (obviously the 13 that was originally prescribed was way too high). The average AHI fluctuates between about 1.9 and 3.0.
Sunday night for some reason, I could not fall asleep. After tossing and turning for hours, I finally just gave up and took the mask off around 3 or 4 am. I woke up a little before 8 am feeling like crap, and I just knew there was no way I’d be able to make it through a work day, so I called in sick. Then I put the mask back on and slept poorly till about 1 in the afternoon. Then I laid on the couch for the rest of the day, in and out of sleep until about 5 pm.
I decided to go to bed at 11, and I’m pretty sure I was asleep before midnight. I did wake up a little before 4 am though, and had a really hard time falling back to sleep. I still wake up feeling pretty tired and crappy, but not as bad as before I started xPAP therapy.

What’s wrong with me?
I realize that neither CPAP nor APAP is a “miracle cure” that’s going to make me feel better in a few days or weeks, but I had at least thought that my days of calling in sick because I felt too tired and crappy to go to work would be over once I started getting proper therapy. It’s been almost a month, and it seems like things should at least be starting to improve by now.
Missing work really stresses me out. I know it shouldn’t, because I’m on FMLA and my job is protected and all that. I know I shouldn’t feel guilty because OSA is a serious medical condition.

I guess maybe I’m just frustrated because this is all taking longer that in seems like it should. While I don’t feel as bad as before I started CPAP/APAP, I still don’t feel very good. It’s still all I can do to drag myself through a work day with a minimal amount of productivity. I still usually don’t have energy to do anything after work, other than collapse on the couch and watch TV until it’s time to drag myself off to bed again. Occasionally, I manage to go to the gym, but all I have the energy to do is a half hour on the exercise bike, which doesn’t even seem worth the effort of leaving the house in the first place.
I just want more out of life than this, and I’m still too tired to do anything about it and it just sucks.

[ozij]

I had at least thought that my days of calling in sick because I felt too tired and crappy to go to work would be over once I started getting proper therapy

I know it's not a lot of comfort, but you werent' getting any proper therapy that night....

I still wake up feeling pretty tired and crappy, but not as bad as before I started xPAP therapy.

Its not a magic cure for everyone - it take time, and patience. Not feelin as bad a before is not enough, but its in the right direction.

It looks like my average pressure is about 9.8 (obviously the 13 that was originally prescribed was way too high). The average AHI fluctuates between about 1.9 and 3.0.

I don't know the machine - but if you're right and you're looking at average pressure, then the right 90% pressure may still be 13.... Maybe the machine is reporting your 90% pressure?

Next time you can't fall asleep don't stay in bed fighting - get out of bed, do something pleasant and relaxing - not TV - and when you feel sleepy again, go back to bed. Repeat as many times as necessary. Fighting for sleep never works - and leaves us frustrated. If you can't fall asleep consider it as request from yourslef for some TLC. Staying out of bed and doing something pleasant can't be worse than staying in bed and fighting.

I found out that when I just can't sleep it's often because my mind wants something settled - so I sit and write what I'm thinking about - and when it's on paper and out of my system I can fall asleep. And sometimes it's just because I'm thirsty (for real).

O.

[NeedinZs]

Hi Amanda,
I can certainly feel your frustration.
I am still new to this as well and struggling. I thought I'd be turning cartwheels by now. I wish I could be of more help to you!

The one thing that does seem strange (to me, anyway) is your pressure appearing lower than what your original pressure was suppose to be.
I'm sure you have double checked your "range" on your AUTO??

Could it be possible that the range is not set high enough to accommodate your need?


I too recently have experienced this "wide awake" feeling, while on CPAP, which is a "new" feeling for me. Have laid awake til 4 in the morning on several occasions....kind of defeats the purpose!!

I can tell by your earlier posts you have a lot of spunk and perserverance (for someone sleep deprived) so I know you'll hang in there with it!!
I'm hoping it all comes together soon!!

Don't give up!! I'll hang in there, if you will!!!

[amandalee]

Thanks for all the encouragement. It really helps.

As for my pressure range, the machine was originally set at 5-13. 5 seemed waaay too low, so I changed it to 8. Based on the advice of some of the people on this forum, as well as my first 2 weeks with the straight CPAP machine, I think I would've been gasping for air if I'd left the low end of the auto range at 5...
I have the ramping set for 20 minutes, starting at a pressure of 5, which seems fine for just falling asleep.
I'll have to take another look at the manual to be exactly sure, but yes, I think it is the "90% Pressure" that the 9.8 is showing up under.

I have been using the Pur-Sleep oils (thanks Bret!), and when I'm not having other issues that are keeping me awake (like whatever my problem was on Sunday) they seem to help. So far I've just used Clear, since that's the scent I like best.
I do sleep with a fan on in the room though (since my landlord is too cheap to get airconditioning ) and I think that makes the oil dry up a little faster than it would otherwise.

Since my original CPAP machine wasn't too bad once I switched the pressure to 10, I'm thinking of just changing this new machine to CPAP mode and setting the pressure at 10.
It just seems so ridiculous to go back to straight CPAP though, after I had to put so much effort into getting an auto machine. I really thought the auto would give me superior therapy, but so far, it just seems to be the same.

And another weird thing... some days I still have the horrible, non-stop carb cravings like I did before starting xPAP. Other days (today, for instance) just thinking about food makes me nauseous. WTF? It was all I could do to eat some raw veggies and fruit from the salad bar for lunch today.
And no, I can say with 100% certainty that I'm not pregnant. So that's not a possible explanation.
Weird.

[echo]

Hi amandalee -- funny, I was just wondering today how you were doing, and then I log on and see your post..

And I have been going through the same. I also realize it's not a miracle cure, but I also thought I would make more progress than I have (especially compared to the quick progress I had made when I used an oral anti -snoring device three years and 30 pounds ago)...

For me, it's been a struggle to get the right pressure, avoid mouth leaks, mask problems, problems with the humidifier.... I am hopeful that as time goes by one by one I can solve all the problems eventually. (.. and thanks to all the fantastic people on this board the learning curve's been pretty fast!)

You're not alone! Maybe we can at least be happy that we have an answer to our problem, it's just in "calibrating" everything to work correctly!

Good luck, you are in my thoughts!

[sleephunter]

Amanda,

I know exactly where you are. I was there more than a qeek ago. I myself switched to an Auto machine but with the A-Flex, not the C-Flex. I can say with certainty that has made the difference for me.

Exhalation pressure was my biggest problem, have you tried all the different C-Flex settings to see how they differ for you?

I also know that I mostly use 8 - 10 during most of my non REM sleep but while in rem I slip to 11-12 sometimes. Maybe your pressures need to be rechecked or opened a little wider than the 8-13?

Just a few thoughts. i wish you luck, I remember how it was when I couldn't get to sleep.

One last thing, there is a thread here that talks about using melatonin. I can ABSOLUTLY agree that melatonin works. I myself take a 1mg tablet and split it in half to 500mcg. 20 minutes after taking that baby I am sound asleep. Better than the Clonazipan that the doctor originally prescribed (yes I talked to him and weened off of it before using the melatonin )

[Snoredog]

you seem to be doing good, I wouldn't change anything, I would use a Cflex=2, but use what is the most comfortable for you.

Your AHI is good.

[amandalee]

I have experimented with the C-Flex. To me, setting it at 1 is the same as not having it on at all; and I can't tell the difference between 2 and 3. I have it set at 3 right now, but maybe I'll try 2...
I keep the humidifier on 1 or 2 depending on what feels comfortable.

My mask seems to be ok, but I've noticed one weird thing:
Depending on what position I sleep in, the place where it attaches to the hose will cover up the little vents. When the vents are covered up, I can feel the difference--it's like there's no air coming into the mask. Once the vents are uncovered, it feels and sounds normal again.
I'll have to find some way of keeping that attachment from covering up the vents, I guess.

Once I manage to get the software working, that should hopefully provide some insight. I've just been too tired to bother trying to install it again after the problems I had the first few times...

I've used melatonin, and sometimes it works for me (last night), other times it doesn't (Sunday night). Weird...

I really thought that going to bed earlier last night would help with how I felt this morning when I woke up. It didn't. I still felt as groggy, tired and crappy as usual.

I know I shouldn't be disappointed that I'm not back to 100%, feeling fantastic, etc, but this is all going so much slower than I wanted. There are alot of reasons I want to get back to "normal," but after having to call in sick yesterday, the biggest reason is because I'm stressed about my job.
Yes, there's FMLA; yes, my boss has been understanding... I shouldn't be stressing out.
On the other hand though, everyone's understanding and patience has a limit, and I'm afraid I won't have my act together again before the patience and understanding for my situation has run out.
It's just really frustrating to know you can do better than this, and want to live up to your potential; but no matter how hard you try, you just can't. But I'm preaching to the choir here...

Anyway, thanks for all the support and encouragement.

[JeffH]

You might try going back to CPAP of 10 and turning your ramp off. The arousals I got from the APAP changing pressure made me go back to straight CPAP and I've never used ramp.

After all, the point is getting good sleep.
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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, Ramp, APAP

[kteague]

Amandalee,

I guess the mother in me comes out when I read of young people struggling so with their sleep issues. Makes me wish I could solve everyone's problems with sage advice. But if I had any of that, I'd need to use it on myself.

All I can say is to approach every night with a balance of expectation and realization. Some of my better nights have caught me by surprise, and every night has the potential to be a good one. On the flip side is that every night we endure trying to adjust to all this has value in that it carries us further along in the process. Sometimes it's hard to hold onto that when all you want is to smash the whole daggone setup on the floor then jump up and down on it.

I know you desperately want relief - NOW. I hope that happens soon for you. Do all you have learned to make bedtime conducive to sleep, and then let the chips fall. Attempt to approach each night thinking "I will be grateful for every hour of safe sleep I get tonight". Otherwise in addition to being sleepy you'll be miserable and unhappy too. I am determined to not let OSA rob me of any more than I have to give up.

Sure hope your job continues to show patience and that soon they'll be glad they were.

Kathy

[goose]

Hey Amandalee,
Don't feel bad about changing your APAP to CPAP mode -- it's whatever works for you.
It's precisely what I did and set it to 10 and my AHI at last average was 2.1, so it's working.
As JeffH said, some of us have issues with the change in pressure that the APAP does (which was my issue). I'm debating on turning the ramp off (I have it running 7-10 over 20 min. and it's debatable whether it is really doing anything for me).

I know it's frustrating. I felt soooooooooo great the morning after my titration test -- I'm still waiting to get that again and it's been 3 months now.....
But as I've said here many times before -- I didn't get here overnight, I don't expect miracles. I am making progress -- I CAN feel that.

Hang in there and keep us up on how you're doing!!!!!
Take care
cheers
goose

[echo]

As for your colleagues and boss' tolerances running out - I would say the following-

First, when one is sleep deprived, tired, depressed, frustrated, ... , it is easier to project worst case scenarios into the future, and in fact it becomes like a hobby. Your thinking always focuses on the negative instead of the positive, like a reflex. So the first thing i would do if i were you, is to try to turn your own negative thoughts into positive ones. Think that you will take it one day at a time, that at the moment everyone is supportive and you will not worry about the future, that if they do become unsupportive later on you will cross that bridge when you come to it. Focus your energies on now instead! (ha ha easier said than done, i know!!)

Second, I personally wouldn't worry about the colleagues too much. Even if their tolerances run out, at some point you will start feeling better, not calling in so many sick days, etc, and then you can work on mending the relationships then. When they see your progress they will have no reason to think poorly of you (unless there are a few idiots in the group, which there always are.). Also some people will be more understanding than others so there's no way you will be able to please them all anyway. Again, cross that bridge when you get there.

Third, I would worry about my boss - for that you just need be communicative with him, as you seem to have been. Give him/her weekly or monthly updates - they love that. Explain the situation that it takes time to fine-tune the treatment. If he has concerns, let him tell you that now. If he has no concerns, then let it go as well. It's not like he will go from complete tolerance to 'ok you're fired' in one day - he will let you know when it becomes a problem. Then you can deal with it.

Fourth, I've been there done that! Got written up, threatened to get fired, lost all support of colleagues, and now I just look back and laugh. It prompted me to find a better job, and now I am much happier than if I had stayed there. So maybe I sound like too much of an pollyanna, but even bad events can have happy endings. So think about that too. Don't let it stress you out that things could get worse at work - again, if they do, you deal with it then! Doesn't hurt to take action to prevent impending disasters, but if there's nothing you can about it (that can't be solved through action or communication), learn to let it go (me: the broken record).

Nothing new here that you didn't already know, i'm sure. But it helps to hear it from others sometimes.

[sharon1965]

amandalee
i hear the frustration coming through in your posts, and i feel for you...
i, too, have been very frustrated, wishing for more evidence of recovery...i've been on cpap for 7 months now, with only minimal improvement...the advice from the kind members of this forum, though, has been to focus, for now, on the fact that each night i spend on my cpap is a safe night, and even if i'm not feeling the benefits, at least i know i'm not doing more silent damage...

i know how you feel, too, about wanting to live up to your potential...i've been suffering, in one way or another, from the effects of untreated OSA for as long as i can remember...but now i'm really trying to tell myself that i am truly doing the best that i can...know in your heart, amandalee, that the fact that you are working so hard to succeed at this therapy is a testament to how strong you really are...

hate to say it, but it's early days yet, love, and it will get better with patience and perseverence...be kind to yourself and try not to get bogged down and, indeed, dragged down, worrying about what others are thinking...this is your journey to health and what you need is to focus on the fact that you deserve to be treated with kindness, care and concern

take good care
sharon

[Nodzy]

Hi Amanda,

I'm glad that you're finally on PAP therapy, but sorry to hear that you're frustrated.

Not that it'll sweeten your tea, but the vast majority of us have had multiple problems getting, and staying, attuned with the therapy. Or better said, getting the hardware and therapy attuned to us.

As you read in my other posts, I've been fighting it for over 5-years... mostly because my doctors, RT's and the DME had me convinced that it was me who wasn't conforming to the hardware and pressures. In short, they claimed that I was dead-set against wearing the mask and having assisted breathing. That doesn't even count decades of undiagnosed sleep hell prior to being diagnosed and therapy started.

Oh well, I learned from this board just how arrogant, lazy and uninformed those "trained" folks really are (were). They chose to give cop-out answers rather than address my particular needs in a prompt manner.

First, you were in untreated "sleep disorder hell" for years, how many I don't know. During that time you mind and body adjusted, good or bad, to that mode. They operated in that mode, your chemistry was attuned to or from that mode. Your body has damage, your mind and body have a mode of operation now that you're trying to overcome or retrain in therapy. And you have to overcome with therapy some of that internal damage and that sleep-starved body chemistry.

For a few sufferers the process isn't too painstaking or long to achieve comfortable compliance and benefical therapy.

For far too many of us it is a rough path that, even when we find a smooth stretch, can change in a flash for whatever reasons. It isn't, for most of us, a simple one, two, three fix -- finding quickly the right combo of machine, mask, pressures, humidifier settings and peripheral aids.

Your mind and body may take longer to accept the mask and air as a tolerable norm. Remember now, you are adjusting to the particulars of the therapy, as well as trying to get the therapy particulars adjusted to you.

You may have to slowly adjust pressures up or down, keep changing the FLEX setting at different pressure settings, or switch machine modes to find the best for you -- and those are subject to change.

Two weeks seems like forever when you hope for a miracle and feel that one may be coming. But in truth, the miracle is that you are here to make your own recovery with tools.

You're introducing things into your sleep that your body and mind, despite that you want to better your condition and position, want to reject possibly because they're unnatural, offensive, confining and intrusive.

There's no magic checklist, no one set of tools, or one defined checklist that can give you the best therapy that will be ultimately tolerable and greatly beneficial for you.

That you post on the board, seeking answers, I'm sure that you will find better therapy.

Ok, so I didn't have definitive answers for you -- but a friendly shoulder squeeze and some encouragement can't hurt too much.

[TerryB]

Hello Amanda,
I too am sorry that you are among the vast majority who have/are having miserable nights and days. I had several weeks of such nasty foggy days a few weeks after starting therapy. My theory being that the full awakenings of mask leaks and hose hassles are much harder on the body than the partial arousals of the apnea. Once I found a mask which doesn't give me a leak problem AND started using denture strips to eliminate mouth leaks most nights are very good. The Pur-Sleep was the best tweak. I found straight CPAP to be the most comfortable. A narrow range APAP wasn't bad. Good Luck!

TerryB