.

[secret agent girl]

.

[bdp522]

It can take 6-8 weeks(sometimes longer) for your body to adjust to this new way of sleeping. If the data shows that leaks and AHI are ok, you might want to-- 1. raise the pressure a bit 2. use 1 straight pressure 3. Give it more time(my favorite choice)

Brenda

[sleepycarol]

I was fortunate that I didn't have many of the "newbie" problems when I first started. I didn't remove my mask. I slept with the machine all night from the get go. Leaks were in the acceptable range. Etc. But for me, it took a loooong time to start feeling the full effects of treatment. I don't know if it was a huge sleep debt, or other health issues. I can understand your frustration. Try to not to get discouraged and keep trying -- it will eventually get better.

[MoneyGal]

I wish it wasn't so for you. I think dealing with the mystery of it has to be the most frustrating aspect. As in, if you knew that the fatigue would lift in, say, 3 weeks -- you could live with that, right? It's the not-knowing that's the hardest.

Sending virtual head-pats.

[jnk]

It can take 6-8 weeks(sometimes longer) for your body to adjust to this new way of sleeping. If the data shows that leaks and AHI are ok, you might want to-- 1. raise the pressure a bit 2. use 1 straight pressure 3. Give it more time(my favorite choice)

Brenda

GREAT suggestions. I might lean toward number two: "use 1 straight pressure." For some people, the changes in pressure from an auto are things their body doesn't get used to right away. If none of that works, there are more things to try. If worst comes to worst, your doc may say that you "failed" CPAP and need a bilevel machine to address UARS, for example. I only mention that to make sure you see you aren't stuck, no matter how things go, not to point you in that direction yet, although you should be communicating with you docs to let them know where you are at at this point in your therapy.

Secret, you mention tiredness and variable hours of sleep, so let me address those.

The hours of sleep may be an issue of sleep hygiene and continuing to train your sleep brain, which all takes some patience and personal strategizing, so don't give up on troubleshooting it.

The fatigue can be many things, so don't ignore it. But understand that as your brain fog lifts and you become more aware of life, you can become more attuned to the fatigue that has been in your life for a long time.

Would you mind giving more detail about the "in general noticeably worse than before I started treatment"? Most of us with severe OSA had, and have, some anxiety/depression issues to sort out. The change in our life that is CPAP is a big part of the solution, but the road can get bumpier before it smoothes out, since we throw the stress of the life-change and the grieving/mourning process of it all as we become aware of our own past and the possibilities of what we could have been and could be. And that is the wisdom of bdp522's favorite choice, giving it more time.

Anxiety/depression can show up as fatigue, or pain. Many here have been on medication to deal with those but found that their dosage needs lessened or that they were able to work with their doctor on coming off the medications gradually, now that CPAP is dealing with what turned out to be the underlying issue for them. Everyone is different, of course. But that proves that how we breathe at night has a profound effect on everything, and I do mean EVERYTHING.

I still think you are well on your way to becoming one of the all-time great success stories with your PAP therapy. But you are wise to be self-aware about what your body and mind are going through and to keep an eye out for indications of other related or unrelated problems that may need to be addressed. You know yourself, so listen to yourself. But my guess is, if you are anything like I was, you are just now getting to know your real self if you are breathing better at night.

A problem that took years, maybe decades, to get to the point you were at does not go completely away in a few short weeks. Make sure you are doing the right things then keep doing them. It is a roller-coaster ride, but as long as you are strapped firmly into your seat, you should be OK.

If PAP is working for you, the next step may be putting a solid, regular, exercise program in place, if your doctor approves. It is the increase in activity that can do wonders for fatigue, inner feelings, and being sufficiently sleepy to get a straight 7 hours in for more nights.

Hang in there, Secret.

jeff

[roster]

My hours of sleep each night continue to be hugely variable.
I continue to feel more tired and in general noticeably worse than before I started treatment a month ago.

I'm starting to wonder if there is some additional disorder present, or a more subtle difficulty adapting to cpap (I have no leak issues, I don't take my mask off, etc). What steps could I take to rule out other sleep problems?

I could really use some supportive messages (i.e., save the "tough love") here or by PM.

Try to imagine if you were the first CPAP patient being introduced to the process by aliens. I can easily imagine saying, "How the hell am I going to sleep with that going on, Mr. Green Man?"

Learning to sleep with CPAP can take some effort and some time. What helped me was switching to a pristine diet (Well, almost pristine); practicing immaculate sleep hygiene; spending time nurturing close relationships with friends, associates and relatives; and fanatical devotion to exercise.

My sleep improved very slowly over a long time. Regarding good sleep hygiene, there is plenty of advice on the internet and here is one article http://www.mayoclinic.com/health/insomn ... e-remedies .

If you think more intensive intervention is needed, many have achieved good results with Cognitive Behavior Therapy.

Keep perservering - the potential for improvement is great.

[KatieW]

Secret Agent Girl, you've "worked" so hard at this, and so I can understand why you're feeling discouraged at the "results". I approached cpap therapy the same way, and sometime in my 2nd month, I let go of the "working" part, and relaxed about it more. I think switching from APAP to CPAP worked for me. Also getting a room humidifier made it more comfortable. Yoga and meditation, walking, warm baths, or whatever works for you might help you sleep.

If you enjoy aromatherapy, there's the a $5 sample pack:

http://www.pur-sleep.com/products/prodD ... rch=&page=

[Wulfman]

Without knowing alot more details......
My recommendation would also be to switch from APAP to CPAP mode (as KatieW hinted at).


Den

[-SWS]

http://www.hsperson.com/pages/test.htm

Secret Agent Girl, the above is admittedly not a medical or scientific tool. However, if you happen to score high on the above screening tool, then consider that your next stage in this journey might be one of methodically managing and eliminating sleep arousals. That might even eventually entail considering promoting or stabilizing "sleep maintenance"----via a pharmaceutical approach.

I personally have great disdain for taking a chemical approach when natural methods will do. But when pharmaceuticals become necessary, they are... just that.

Good luck!

[JohnBFisher]

Secret, no tough love messages here ... why not? beside your request, you have worked and worked at making this work. You need encouragement, not tough love. We should only use tough love when you have not tried as hard as possible. Instead you have been a model user and participant here. You are trying very hard to mange your health and therapy.

So, what's a person to do? Well, I will offer both my empathy and own experience. Hopefully that will help you a little.

Empathy? Sure. We've all been there. Discouraged and want to see better results. It's perfectly normal. Sometimes you put on a mask and it works like a charm. Other times it feels like a dance with the devil. You might win the game, but until it happens you doubt anything will come of it. Most of us have been there and understand.

My own experience? Sure, I've got over 18 years of experience. You would think that with that much time I would have this down pat. But you know what? Even with that much time, it can be a struggle to get the sleep right. I started using my new machine the beginning of December. Here it is one month later and I only have a few days where I woke up feeling wonderful. Some days there is NO fog. Others, it's a struggle to stay awake!

Why so many problems still when the machine clearly works? Well, as -SWS points out, you sometimes need to fight both habit and your body to be certain the arousals are minimized. I have problems with "spontaneous" arousals. In other words, my body just wakes up, instead of keeping me asleep. In my particular case, it's probably a combination of brain stem problems and habit.

Arousals as a habit? Sure. It takes time for the brain and body to relearn that it can sleep without interruption. But sometimes the simple tools to help minimize arousals just don't cut it. Some nights I can not fall asleep. I do not like using lots of meds. And a sleep med to help me fall asleep and stay asleep is a nuisance. But it seems to help. And I've tried several so far. I may need to try more.

But, I know from my experience (and those of other users here) that with time and dedication I can get much better sleep. And you are doing such a spectacular job with sticking with the therapy and managing your situation that I know you will eventually gain much, much better sleep.

Hang in there! Know that we cheer you on. It will get better.

[BlackSpinner]

My hours of sleep each night continue to be hugely variable.
I continue to feel more tired and in general noticeably worse than before I started treatment a month ago.

Love and hugs to you. Everyone has already said what I would say.
No tough love from me - you have been working so hard why would I do that?

[bailachel]

You are working so hard to get it right that I am sure you will be successful. Sending hugs and smiles of encouragement your way!

[Muse-Inc]

http://www.hsperson.com/pages/test.htm...

Thanks for posting this; it had helpful info for me...my self-test result was surprising.

[carbonman]

I could really use some supportive messages (i.e., save the "tough love") here or by PM.

Faith is taking the first step, even when you don't see the whole staircase.
MLKing, jr.

It's a journey that no one can take for you or me or anyone else.

You remind me where I came from,
how difficult it was to get started,
how easy it is now and
how thankful I am for my new life.

I don't ever want to forget the pain and the fatigue
and the loss of memory and cognative ability.

I don't every want to forget those first few weeks.
The crushing fatigue from getting no sleep due to the
mask and blowing air and leaks and the sores in my nares.

I want to appreciate, every night, the ease of putting on my Papcap/mask.
The feeling of comfort and security it brings,
knowing I will be safe in my sleep.

I don't ever want to forget to give thanks,
as I revel everyday, in the joy of my new life,
that cpap brings to me everynight.

Your posts may be the most important posts that I read right now.

You got'a believe.

[SleepingUgly]

Secret Agent, I can't tell you a success story, as I've been at it since August and I still haven't gotten this down. However, I can tell you that I spent a few months with the Swift LT, with good compliance (i.e., I wore it every night), and I did not feel better until I switched to a full face mask. I am still struggling with the full face mask beating up my nose, so I haven't been able to wear it consistently enough to see amazing results, I saw a definite trend toward feeling better. Lately I had to stop wearing the full face mask altogether when the sore on my nose started bleeding, so I went back to the Swift LT and now I feel just as crappy as before. I wake up more times a night with the Swift LT, and even when I don't notice waking a ton, I just don't feel as well the next day as with the full face mask.

Also, I felt better on straight CPAP rather than Auto, as I think all the pressure changes were disturbing my sleep. I may try Auto again at some point.

Perhaps you could try a full face mask, and try straight CPAP. Change only one variable at a time.

My hours of sleep each night continue to be hugely variable.
I continue to feel more tired and in general noticeably worse than before I started treatment a month ago.

I'm starting to wonder if there is some additional disorder present, or a more subtle difficulty adapting to cpap (I have no leak issues, I don't take my mask off, etc). What steps could I take to rule out other sleep problems?

I could really use some supportive messages (i.e., save the "tough love") here or by PM.