feeling worse: a rant

I'm really struggling to figure out what everything means now that I'm on CPAP, I hope I don't go into TMI territory here. Basically I need some ideas on what to do as my therapy seems to be sliding backwards.

I'm was titrated at 7 cm which is what I'm on now, and I use a full face mask. I've used the CPAP since Oct 14th, and have slept every night at least 7.5 hours.

The first few nights I felt great, but the last six or so days have not been good. At first I could sleep up to 5 hours without getting up, but now I'm back to getting up every 1.5 to 2.5 hours to go to the bathroom. Before the CPAP I had vivid nightmares, but when I started the CPAP my dreams almost immediately improved into "normal" dreams. Now I'm having the nightmares again, often about smothering, drowning, or choking. I've got a constant headache when started when I began the machine, and it's morphed into neck and back aches, and even face pain. The face pain might be a sinus infection since I'm prone to them, but I just took 2 rounds of antibiotics in August & September.

My AHI average seems to be going up, too. It got down to 3.2 but in the last few days it's gone back up to 4.2.

I had some bad days on the CPAP but they were always a little better than the bad days without the CPAP. Not today. Today I feel just like I did on one of my bad days before the CPAP, like absolute death.

The machine itself is really frustrating me too. It's developed some kind of stank that will not go away, there's a mask leak that I can't get rid of, and using humidity causes so much condensation the bed gets soaked and the mask makes a rattling noise from trapped water.

This is absolutely the pits. On Monday I get a print out from my Smartcard data, and on Tuesday I go to the doctor, but I don't even know what to say to him about all this. I mean, I'm so new to this I don't even know where to start.

Just a couple of suggestions -
Turn the humidifier down or completely off (passover mode) to avoid the condensation, if you can tolerate it. Or use a (aussie) heated hose or hose cover.

For the smell, thoroughly clean your HH tank out with detergent and soak in vinegar. You might even want to try bleach (well diluted. don't soak for too long or the bleach smell will linger). Probably you've got mold growing in the tank. Make sure to use only distilled water in the tank when you're using it at night, and not tap water. Also change / clean any filters you have on the machine. A good rinse of your hose would help too - same formula as with the HH tank.

The condensation could be causing congestion (or drowning!), which will contribute to a higher AHI.

The leak will also contribute to a higher AHI. Have you cleaned your mask since you started to use it? Just use plain (unscented, NOT antibacterial) soap or mild detergent, and/or a vinegar soak every day to keep the seal clean and oil-free.

You can also try Mac's silicone ear plugs to seal the mask where it's leaking... and make sure that you have a good fit with the mask (right size, correct adjustment, etc). Sometimes it's helpful to try other masks -- it can be that sometimes even our favorite mask isn't cooperating on some nights.

Solve the condensation and leak issues first. If you're still feeling crappy, then I would look into whether your pressure needs are being met.

stacia123 wrote:This is absolutely the pits. On Monday I get a print out from my Smartcard data, and on Tuesday I go to the doctor, but I don't even know what to say to him about all this. I mean, I'm so new to this I don't even know where to start.

stacia123,

Don't lose heart!
First, you may be having large leaks. Since you don't yet have the software, you'll (hopefully) be shown your leak profile on your visit to get the smartcard data printed out. Large leaks will show up as black bars across the leak profile for each night. If you have large leaks, this may be the reason your getting crummy sleep again.

Second, I was titrated at 7 on my first titration. I went through many of the same things you're going through now. Strange dreams, normal dreams, then strange dreams again, feeling crummy, etc. Since then I self-titrated to 11.5. A more recent lab titration has me at 11cm. (My machine actually measures closer to 11 with a manometer when it's set to 11.5cm, so I guess did a decent job of self titrating.) I suspect a lot of us get under-titrated the first time. Captain_Midnight has a theory about therapeutic "titration creep". The titration they start you at is almost always lower than what you'll end up gravitating towards, especially if you're at a very low pressure to begin with. It's just another reason why I wish they would give us all autos and let us titrate our selves. Things are always different in a sleep lab than they are at home. The results will always be skewed. (Note: Don't start self titrating until your leaks are under control. There's no point in doing this until then. Plus you're only a week plus into the journey. This will work out for you, I'm sure.)

Third, if you don't already have it, see if you can get a copy of Encore Viewer and the Smart Card reader. You'll be able to print out your own reports. You can save them as pdfs rather than print them on paper so you can keep a continuous record of nightly data for future reference.

Fourth, let's get rid of the rainout. Wrap your hose in cut-off tube socks, baby blanks, towels, clean painters rags, whatever, and reduce the heat on the humidity some for tonight. When you get a chance, either make or buy some hose snuggles to thwart rainout. They're very easy to make from remnant fleece you can buy at the fabric store if you own a sewing machine or are good with a thread and needle. A decent hose snuggle can be made for under $5.00 that way. Tip: Make the snuggle almost twice as long as the hose, scrunch it up so it's very wrinkly and wrap the ends in velcro ties to keep them fasted just at the ends of the hose. It will be a bit thicker insulation and will feel plusher if you end up rolling over on the hose some in the bed.

echo wrote:Just a couple of suggestions -
Turn the humidifier down or completely off (passover mode) to avoid the condensation, if you can tolerate it. Or use a (aussie) heated hose or hose cover.

For the smell, thoroughly clean your HH tank out with detergent and soak in vinegar.

The leak will also contribute to a higher AHI. Have you cleaned your mask since you started to use it? Just use plain (unscented, NOT antibacterial) soap or mild detergent, and/or a vinegar soak every day to keep the seal clean and oil-free.

Wow, thanks for all the suggestions. I didn't know I could use vinegar and water on the tank. Plus I have only rinsed and dried the tank daily, not washed it. Also, I've been using antibacterial Softsoap. I'll change both those things immediately.

The mask does get cleaned every day, and I do use distilled water in the tank and it gets changed every day too. I was told do wash the hose weekly, but I washed it more often when the stink started.

The mask is so frustrating. This is the 2nd mask I tried and the fit is terrific except for the one leak by my left eye, which only happens when I'm on my left side. What happens is that I roll over to my left side while sleeping and then the leak starts, gets me right in the eye and wakes me up. I eventually roll back over to my right side, but by morning my right shoulder and neck hurt like heck. I wash my face before bed and everything else seems really well adjusted and fits nicely. I'm completely flummoxed.

DreamDiver wrote: First, you may be having large leaks. Since you don't yet have the software, you'll (hopefully) be shown your leak profile on your visit to get the smartcard data printed out. Large leaks will show up as black bars across the leak profile for each night. If you have large leaks, this may be the reason your getting crummy sleep again.

Thanks for all the help, DreamDiver. I really do hope I find out about the leaks tomorrow. The leak rate has stayed pretty steady, from 32.5 to 34.0 every day. Also, I wake up when I get a leak -- I wake up at the drop of a hat, actually -- and I suspect (but of course don't know for sure) that my leak rate is relatively good.

DreamDiver wrote: Second, I was titrated at 7 on my first titration. I went through many of the same things you're going through now. Strange dreams, normal dreams, then strange dreams again, feeling crummy, etc. Since then I self-titrated to 11.5. A more recent lab titration has me at 11cm. (My machine actually measures closer to 11 with a manometer when it's set to 11.5cm, so I guess did a decent job of self titrating.) I suspect a lot of us get under-titrated the first time. Captain_Midnight has a theory about therapeutic "titration creep".

Thanks for the link. I was really surprised to be titrated at 7 cm, since my apnea was severe -- 104.5 during my first test. But I've heard that severity of apnea doesn't necessary mean a high rate, so I didn't think too much about it. I'll go read Captain Midnight's post.

DreamDiver wrote: Third, if you don't already have it, see if you can get a copy of Encore Viewer and the Smart Card reader.

Fourth, let's get rid of the rainout. Wrap your hose in cut-off tube socks, baby blanks, towels, clean painters rags, whatever, and reduce the heat on the humidity some for tonight. When you get a chance, either make or buy some hose snuggles to thwart rainout.

The viewer and reader are too expensive right now, but I hope to get them if/when we get a tax refund in a few months. I'm crocheting a hose cozy (heh) right now, it'll probably be done tomorrow. I'll find something else to use tonight and turn the humidity to 1. I had rainout every night on 3 and a little rainout on 2 as well.

Just thinking about that odor... A friend's son had a humidifier that didn't leak out enough to be noticable, but must have seeped just enough to accumulate dampness in the bed of the machine. (Or maybe he sloshed it.) Trying to find the odor, she took his humidifier out, reached back into the machine with a tissue to wipe it out, and she came out with green gunk. Hope that's not your problem but wanted to mention it just in case.

You have the M series Pro machine, it should display your AHI and leak data from the LCD display.

1. Hold down both the left and right (<-) (->) buttons while simultaneously plugging the power supply into the back of the device. Once the device beeps, release the buttons and wait a few seconds.

To view data:
1. Hold down both the left and right (<-) (->) buttons while simultaneously plugging the power supply into the back of the device. Once the device beeps twice, it is in the setup mode and you can release the buttons.

2. Press the left and right (<-) (->) buttons to navigate to the Therapy Usage screen to observe data, should give you AHI information for 7 and 30 days averages, should also display number of days used >4hrs per night, 90% pressure, leak etc.

To REST LCD Data to zero, while at the Therapy Usage screen hold down the minus (-) button for 5 seconds.

What is your AHI from the display? What is the leak rate shown on the display?

While you are in setup mode (use the arrows to navigate to each field), check the CPAP pressure, I would increase it from 7.0cm to 8.0cm. If you are having difficulty with tolerating the pressure, make sure CFLEX is enabled (mode=CFLEX as opposed to CPAP depending on the vintage of your machine). On the field where Flex=Off, 1 2 or 3 select "2", hit arrow advance to next field. If you are having difficulty falling asleep with the machine set up a lower Ramp pressure such as 6.0 cm and use a 30 minute timer. You probably won't need Ramp at your pressure, but it is nice to have it set up anyway.

Make sure it has "enabled" at the Field "Show AHI/Leak =", this is so it will display data on the LCD. The above instructions
show how to display AHI and leak data, use that as your guide. Lower the AHI the better, if you want to reset what the LCD is displaying at the Therapy menu, press the Minus (-) button for 3 seconds and it will reset that data to zero where you can see how you did the next day, it does NOT erase data written to the card, only the display.

Increasing your pressure from 7.0 to 8.0 may help with those awakenings at night. If you are a newbie those awakenings can happen.

Also don't forget about hose management to keep the hose from pulling on the mask if you turn from side to side:
LINKS to Hose hangers and methods of managing the air hose: viewtopic.php?f=1&t=10640

I got my print out of the Smart Card data today - barely! My DME didn't have the right software or something and I had to leave the card there for a few hours. Then when I brought the print out home I discover they only printed out 5 random days from the 14 days I've been using the CPAP. Frustrating!!! I'm going to have to find a way to afford this reader and software myself.

From the 5 days I did get, I discovered that days with a higher hypopnea index and vibratory snoring seem to end up being the worst days for me. Even though I don't have a lot of OA on these charts I notice I almost always wake up when I have an event (I can tell because the leak rate shoots up on my mask, probably from me taking it off. Oops.)

My leaks are getting better ever since I switched to the ComfortGel mask, and last night I got rid of the eye leak but only after tightening this mask a LOT. I can still feel where the forehead rest thingie was and I wok up 5 hours ago.

Snoredog wrote: What is your AHI from the display? What is the leak rate shown on the display?

The AHI is 3.2 today (average) and the leak rate is 33.5 today (also average). Thanks for all the info on going through the screens! I'm not sure if I can get to screens that show me stats for individual days, I'll play with it using your instructions and see what I find.