Update for week 4 of CPAP/APAP

[robysue]

A week ago I saw the PA at the sleep doctor's office due to some rather extreme and severe adjustment problems starting with bedtime insomnia, but ranging far and wide from there. She decided to do a week's worth of home titration and then see what the data said and we had another follow-up meeting today to talk about how things are going.

The Good
The bedtime insomnia, while not yet beaten, is now under control. I'm now pretty much able to go to bed between 1:30 and 2:30 AM and get to sleep within 10--20 minutes as opposed to not being able to go to bed and sleep until well after 3:00AM. It's still requiring lots and lots of hard work at sleep hygiene, but I've been down the insomnia road before many times in my adult life. So I'm pretty hopeful the worst is over concerning the insomnia.

A new APAP prescription. I felt far better (but not yet that close to my pre-CPAP normal) during the week's worth of autotitration with the S9 running wide open 4-20 than at any time since starting CPAP. I think this has been a major contributor to getting the insomnia under control. Median pressure was around 5.8, 95% pressure level for the week was around 7.3, with an average daily max of 8.4, if I recall correctly. My titration-study had set my fixed CPAP at 9cm, which had triggered a horribly vivid dream of being a force-fed goose being fattend up for foie gras. And some nasty problems with my eyes feeling dry and painful on the inside. That's why the PA faxed the autotitration orde to the DME. At today's appointment I stressed how much better I've felt this week and that I wanted an APAP prescription with a reasonable range rather than a straight CPAP. By the end of the day, she faxed over a prescription for APAP with a range of 4--8cm. Here's hoping that it's a good range for me.

During the daytime, I'm only feeling about 5 to 10 times worse than I did before starting CPAP instead of 100+ times worse. Yeah, it's strange to put "feeling 10 times worse" on a Good list, but how I'm feeling is such an improvement that it's worth noting as some real progress. I still get daytime sleepiness, but it's not all day long now. I'm still tired, but I don't constantly feel like something the cat drug in.

Progress on hose management and exhaust flow issues are coming along. With the lower night time pressure, the Swift FX's exhaust flow doesn't feel quite so much like a little mini-jet plane's engine; hence it's bothering me a whole lot less. Still not using an over the head hose system since I prefer to pull the hose under the covers with me at night. The hose snuggly makes it feel almost like a stuffed toy snake and I've now just about managed to figure out how to smoosh my favorite, smallest, thinnest, softest, most worn out and most malleable goose down pillow into a fashion that cradles the mask hose without exposing too much of either me or my hubby to the exhaust flow. Turning over in bed is not as big of an issue any more either.

Leak rates are improving! I've even had a couple of nights where ResScan shows 0.0 for median leak, 95% leak, and max leak for the night! Median leak rate has clearly stabilized at 0.0. Most nights the 95% leak is below 10 L/min (and often below 5 L/min). Max leak still varies pretty widely, but is never above 20 L/min.

My AHI/AI numbers continued to look as good (or slightly better) with the APAP running 4--20cm as they did on straight CPAP at a pressure of 9cm. Ever since I started CPAP, my AHI has often been below 1.0 and is pretty consistently below 1.5. There was one night where it popped up to 2.3 I think. That night I had some pretty bad congestion and felt like I was coming down with something.

The Bad
The bedtime insomnia, while under control, is not yet beaten. The downside of the insomnia is that I still have to work way too hard to simply relax enough to feel sleepy enough to go to bed and get some sleep. It's not fun to have to start "getting ready for bed" three hours before you actually plan on lying down in the bed. Also giving up all TV after 10:00 and all reading after 10:00 isn't much fun.

During the daytime, I'm still feeling 5--10 times worse that before I started CPAP. While I'm now semi-functional during the day, I still can't really concentrate on a whole lot of things, including grading. Meetings are also challenging---both to stay awake in and to be able to actually contribute something useful.

The constant headache is still around. I've suffered from headaches my entire life. And all types of them. But ever since starting CPAP, I've had a nasty low-grade headache centered behind my ears and just above my neck, sometimes spreading to my sinuses as well. It's occasionally painful enough to make me take a couple of ibuprofens, which keep the worst of the pain at bay, but I'm really leery of taking more than the occasional dose of ibuprofen since I don't want to trigger rebounds. No good answer from the PA at today's appointment about this other than "it might be caffeine related or stress related".

The Ugly
Restricting caffeine to two cups of coffee or tea with breakfast is down right cruel. Unfortunately, if I don't the caffeine aids and abets the insomnia devil.

Not being able to talk my husband while lying in bed is terribly sad for me. *sigh* this is what I miss the most about pre-CPAP days *sigh*

Not being able to smell my husband while lying in bed is terribly sad for me. *sigh* I don't mean my husband stinks. I do mean that with the CPAP on, I can't smell anything at all and I do miss the scent of my sleeping husband when I'm lying in bed awake. Cuddling without that scent is just not the same.

[msla]

I am glad thing are progressing in a positive way for you. My dream at my sleep study was that they were popping corn and putting the scent of buttered popcorn into my mask When I asked them about it, the tech denied everything! As for outside odors, I do smell the skunks when they are about in the neighborhood. I wonder if there is a carbon filter for use in the summer. There is nothing like being force fed the aroma of a skunk while you are sleeping

Rolf

[Madalot]

I'm glad things are moving in a good way for you! I can see where there are still a few issues to work out, but it looks like you're making great progress towards that end.

Congratulations -- and please keep the board posted.

[BlackSpinner]

I am glad thing are progressing in a positive way for you. My dream at my sleep study was that they were popping corn and putting the scent of buttered popcorn into my mask When I asked them about it, the tech denied everything! As for outside odors, I do smell the skunks when they are about in the neighborhood. I wonder if there is a carbon filter for use in the summer. There is nothing like being force fed the aroma of a skunk while you are sleeping

Rolf

OMG there is a whole family of skunks around here too and YES it definitely makes its way through the filters! Aromatherapy at its worst - wakes me up real quick.

[robysue]

My dream at my sleep study was that they were popping corn and putting the scent of buttered popcorn into my mask

Far better than my dreaming of being a force-fed goose being fattened for foie gras back on night 3.

As for outside odors, I do smell the skunks when they are about in the neighborhood

and

OMG there is a whole family of skunks around here too and YES it definitely makes its way through the filters! Aromatherapy at its worst - wakes me up real quick.

All I can say is my hubby is not a skunk and I miss his smell at night. Of course, there aren't too many real skunks around here, so I have no idea if I'd smell a skunk through the mask. I rather think that's an odor that is powerful enough to make it through the mask.

Now it sure would be nice if the CPAP mask could drown out the noise of the neighbors A/C next summer when our windows are open. Don't think it will happen though.

[elena88]

Oh Robysue,
Wow, Im so happy that things are improving for you, and you now have an apap... this will really help you dial in your pressure even more
than you have.. good going!

glad to hear the insomnia is improving.. sorry about the headaches.. and the caffeine... but as you know caffeine can help a headache , or
cause rebound headaches..


You are doing so well, especially after just a very difficult start.. Im really happy for you!

The Ugly
Restricting caffeine to two cups of coffee or tea with breakfast is down right cruel. Unfortunately, if I don't the caffeine aids and abets the insomnia devil.

Not being able to talk my husband while lying in bed is terribly sad for me. *sigh* this is what I miss the most about pre-CPAP days *sigh*

Not being able to smell my husband while lying in bed is terribly sad for me. *sigh* I don't mean my husband stinks. I do mean that with the CPAP on, I can't smell anything at all and I do miss the scent of my sleeping husband when I'm lying in bed awake. Cuddling without that scent is just not the same.

gosh, my husband was thrilled that I couldnt talk as much! Of course I have nose pillows, so I can still get word out!
I do understand how you miss hubby's aroma... I sleep with my hubby's t shirt when he is out of town, he smells so good! Did you know that your
brain has an excellent memory for smells? How about if you get one of his "worn" t shirts and put it on your pillow, and partake of a nice
snort of that before you put your mask on....mmmmm, sigh.............

[msla]

While I will eat popcorn, It is not anything that I crave. I agree that CPAP does isolate us from our surroundings but that is a small downside to the positive benefits. I have never had foie gras and can imagine that I would not like it since I do not like liver. If you want to imagine another delicacy google "rakørret" A Norwegian fermented fish dish which I have eaten. It is actually quite odor free when properly prepaired.

Perhaps you could put the CPAP on top of one of his used shirts and pick up a little of the scent?

Rolf