My progress on CPAP (or lack thereof)

phil1001 · Post by **phil1001** » Mon Aug 06, 2007 5:56 pm

Hi Amandalee,

Well if it shows that you are not having apnea with low pressure of 10, then you can leave it at that. The goal is the lowest pressure with AHI of below 5.

I think having dreams no matter how bizzare they are is really positive, I certainly had my share of bizarre dreams, in fact as you say some of the dreams were old familiar dreams.

I also still have my bad nights and find it hard waking up, but you have a lot of lack of sleep to make up

Phil

amandalee · Post by **amandalee** » Mon Aug 06, 2007 6:01 pm

I also still have my bad nights and find it hard waking up, but you have a lot of lack of sleep to make up

Good. Now I have an excuse to sleep all weekend...

socknitster · Post by **socknitster** » Tue Aug 07, 2007 9:19 am

Yes, Amandalee,

You have a sleep deficit to sleep off. It can take a while to make getting up easier. It took a few weeks for it to get easier for me--but it still isn't always easy. I've been on the hose since June.

Jen

amandalee · Post by **amandalee** » Tue Aug 07, 2007 11:47 am

The same day I ended up changing the pressure on my machine to 10, I also sent an email to my doctor complaining about 13 being too high, hurting my lungs, etc... (yeah, email is kind of lazy, but I'd probably just end up leaving a message with the receptionist, so it's all the same to me).
Anyway, this is what I got back from him this morning:

I have a record that we have you on CPAP of 13 cm of H20. Certainly an auto-pap set at 5-13 cm of H20 may be better tolerated and we could change your CPAP to this. Let me know.

Eeeeexcellent!
Now, everyone could've been saved some time and trouble (not to mention 3 days of pain for me) if the DME had just given me an auto from the start and/or the prescription had just been written for an auto, but as long as I'm going to be getting one now, that's fine.
No one ever needs to know about my little adjustments to the current machine.

roster · Post by **roster** » Tue Aug 07, 2007 12:32 pm

Good for you! Move quickly on it before they have time to change their mind!

socknitster · Post by **socknitster** » Tue Aug 07, 2007 12:56 pm

AWESOME--Yes I agree to move quickly! But I disagree with the doc about setting the min so low at 5. It should be closer to your titrated pressure so it can responde quickly to an apnea and so that the changes in pressure do not wake you up. I learned this from my experience, but you can experiment to see what works for you!

jen

goose · Post by **goose** » Tue Aug 07, 2007 4:49 pm

Yeah -- Jen's right. 5 is a bit on the low side. You may gasp for air at that setting. I wouldn't go below 7 -- that said, I started at 5 and wasn't totally gasping, but when I went to 7 it was a whole lot better!!!!! (I'm at a 10 now and I'm down to AHI 3.2.....doing happy dance)

cheers
goose

echo · Post by **echo** » Tue Aug 07, 2007 5:10 pm

Amandalee, live and learn eh? Glad you got guts enough to nag them until you are satisified! I think it's difficult, being sleep deprived, no energy, depressed, perhaps isolated, young and 'clueless' (oh wait I'm projecting myself!) to have enough energy and strength to know yourself and to ask for what you need - so email or phone, whatever, important thing is you succeeded in getting what you needed. May everything continue to go much smoother for you! Your successes are motivating me as well! (I managed to get them to change my pressure from 7 to 10 today, yay)

amandalee · Post by **amandalee** » Wed Aug 08, 2007 3:18 pm

It seems getting the doctor to okay an AutoPAP was the easy part. I've been playing phone tag with the DME rep at the sleep lab since yesterday. I'm not looking forward to talking to him.
On Monday, another rep from Nationwide Medical (the DME) called me to check up on my progress. I told her the story from before I tweaked the machine, lungs in pain, etc. She said to call my doctor about it. I said I had (I'd emailed him, anyway) and was waiting for him to get back to me. She said if worst came to worst, she could always tell me over the phone how to adjust the pressure on the machine.
Um, yeah. The people on this forum already beat her to that.

Since I can't seem to get ahold of the guy at the sleep lab, I tried calling that rep I talked to on Monday. I told her I'd talked to my doctor and he wanted to switch me to an APAP, and that he told me to get in touch with the DME about setting it up. Haven't heard back from her. Hmm...

Other than that, things are pretty much the same. I still wake up feeling really tired, groggy and just all-around crappy. But I seem to have a little bit more energy as the day goes on, especially late in the evening, which doesn't help me much at work.
Yesterday I managed to drag my butt to the gym for the first time in like, a month. It was just 30 minutes on the exercise bike, but that's a start I guess.

I wonder why I have so much more energy at night? I've been feeling crappy for so long that I can't remember what it was like before.

socknitster · Post by **socknitster** » Wed Aug 08, 2007 4:07 pm

The more energy at night is probably what is commonly termed "second wind" but is actually not a good thing. It is a metabolic pathway that your body goes into when under stress/sleep deprivation. Your body decides: OK, well we aren't going to sleep, we are under stress, better haul out the big guns. And out comes all those nasty hormones like cortisol and adrenaline which later in the evening when you do get ready for bed will inhibit sleep onset. This pathway is left over from a time when human beings were prey and had to fear for their lives after dark. Lucky for us we no longer have these problems (well, most of the time--i guess there is the stray mountain lion here and there) but the vestigial pathway remains nonetheless.

You might try pushing your pressure up by one cm and see how you feel after a few days. Hopefully you will get the m-series auto with a-flex (the best machine on the market as far as I can tell) very soon and you can set it as I mentioned above or according to someone elses advice. You will get used to the higher pressures with time. I did. My titration scrip was bipap 16/12 cm water. Once I got the auto, I spent most of my time at 10/13. Now since my surgery I am at 6/9 so far with good results. I have no idea how that will pan out but obviously with a raw throat I can't do too much pressure--but I am sure that some therapy is better than none.

I hope this info helps you, not discourages you. Your body is just sleep deprived and confused. It will take time to work out all the answers. Apnea is complex, not simple. While it is nice to hear all the stories of people who had overnight success, they are the rare ones that make optimistic gals like us get our hopes up too much, probably. You have the wisdom and tenacity to get to that point too, I can tell from your posts. You are a very intelligent girl. Keep at it.

Jen

amandalee · Post by **amandalee** » Wed Aug 08, 2007 6:07 pm

It is a metabolic pathway that your body goes into when under stress/sleep deprivation. Your body decides: OK, well we aren't going to sleep, we are under stress, better haul out the big guns. And out comes all those nasty hormones like cortisol and adrenaline which later in the evening when you do get ready for bed will inhibit sleep onset.

Thanks Jen! You'd think I'd remember that from all my biology classes back in college... Hopefully with continued xPAP I'll regain those IQ points I've lost since being sleep-deprived.
Any suggestions on how to deal with it? I was trying to lay on the couch and relax last night around 11, but I couldn't sit still. I ended up cleaning the kitchen a little bit. While it's nice to have it looking less disgusting, I would rather have been sleeping.

Wolfmarsh · Post by **Wolfmarsh** » Wed Aug 08, 2007 7:08 pm

I always find that if I just do some things to relax, like take a hot bath and chill down the house so i have to bundle up under the covers, that I fall asleep much faster.

phil1001 · Post by **phil1001** » Wed Aug 08, 2007 7:43 pm

Hi amandalee,

I am not sure of the benefits of apap against a properly setup cpap - obvious benefits if its not titrated properly.
I am lucky so far that my settings seem fine, but I can only see this when looking at the saved data. I only need a 9 or 10 so its quite mild compared to some people.

I have found is having a nap at the weekend and using my CPAP, has helped in banking sleep.

You can try melatonin now at around 2100 to reset your body clock, or even an anti-histamine (drowsy sort) - a book also works

goose · Post by **goose** » Wed Aug 08, 2007 8:51 pm

Hey amandalee,
It may sound trite, but meditation can also help you to relax and fall asleep.
You can also try a method of self hypnosis that will relax you and help you fall asleep (make sure you have your mask on and the xPAP machine running before you do it!!! ).....I have posted my method (there are many) here before, but if you want, I'll gladly post it again.....I can also send it to you in a PM....

I take 2 benedryl each night before I bed down -- both for allergies and also for the sleep properties. You'd have to dose yourself as everyone has a different tolerance (My wife takes 3).....Melatonin can also work, but google on it and check it out....it's always worked for me.....

Take care!!!! Sleep well
cheers
goose

Guest · Post by **Guest** » Thu Aug 09, 2007 5:35 am

amandalee,

From my own experience, the only time I get tired at night is when i'm on some sort of apnea therapy (anit-snoring mouth device, xPAP) and it's working. The rest of the time, I am tired in the morning, and get progressively more awake and more energetic until it's bedtime, at which point I'm ready to run a mile and clean the whole house I figure this is because it takes me the whole day to wake up (or reach my second wind as described by socknitser). The worse the sleep apnea is the more screwed up my body clock becomes, and the later I go to bed.

And I have found nothing to counteract this phenomenon - no amount of meditation, baths, melatonin, valerian, anti-histamines, waking up at 4 am (I just end up sleeping later in the next day) can help me sleep.... except Sonata - it doesn't make you feel like crap the next morning like other sleeping pills, and it's really good at making you sleepy. (normally I HATE medication but this was the last straw for me, so to speak).

As others said I would give it some time, while you recover your sleep debt. And in the meantime, if you're having problems sleeping at night (you didn't actually say if you did) don't stress about it otherwise you will get more nervous about not falling asleep. If it's interfereing with work and life, and none of the other methods work, then maybe talk to your doc about a sleeping aid.

On the other hand, some energy is no better than no energy at all, and going to the gym is a great start Hopefully each day will be just that much better.

good luck!

My progress on CPAP (or lack thereof)

Pressure and dreams

My sleep doctor is awesome

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