My Therapy after 8 days

I have been on XPAP now for 8 days. I used Ambien for a few of the nights, but I know I should not continue, so I've switched to melatonin, I need help getting to sleep. I have noticed that I do wake up with a dry mouth, I have a nasal mask. I'm going to be contacted my DME and request a full face mask. Seems when I relax, my mouth opens. It has been suggested that I use a chin strap, but I think I'll give a FF mask a test run.

I am experiencing some sinus inflammation. I state inflammation because if I take some ibuprofen I can breathe better, and if it were congestion, I doubt that would be the case. So, I've been doing the nasal rinse, hoping to calm down my sinuses and heal them. I have one side that seems to be more closed/inflamed/congested than the other. I'm considering trying to see an ENT and find out why, as this actually has been a problem since way before being diagnosed, attributed it to allergies. However, Allegra or Flonase doesn't seem to "open" it up, but does feel better a little better if I take the ibuprofen. I've also increased my humidity as well. I do keep our home at 68 while we sleep, and then when it's time to wake up, it rises to 72.

I've found that my hose wants to pull on my mask, and I've tried pulling the majority up on the bed with me, but that causes me to be aware and to be careful, so I don't sleep well. Same with putting the hose under the covers. So going to purchase a longer hose, by a hose cover and a hose "hanger." No then, the exhaust... the mask I'm using blows the exhaust straight up. If I turn the hose 90 degrees to the right, then it's blowing straight at my husband. If it's blowing straight up my forehead get cool/cold. So if I get the hose hanger, this would cause the exhaust to maybe blow straight down, so I'll need to make sure that I have the bed covers pulled up to my chin, until I get a hot flash! Hubby was going to make something to hold the hose but I found something online that will work and I'll be able to travel with it.

But, I'm really trying, I want this to work, I want more energy, I want to be able to lose weight and have more stamina to do things and go places. And most of all, not keep family and friends awake You can be sure, I'm going to keep trying.

FYI - when I got married almost 25 years ago, I weighed about 80 lbs less. Husband has recently told me that my "breath holding" has been going on since we met/married. I wasn't overweight then.

You're on the right track! It can take weeks to get all of the bugs worked out with hoses, masks, etc. I don't think I even started to sleep much until at least week 4!

Also, don't be afraid to get creative with your mask and customize it with additional straps, whatever it takes. Find one that is the best of the bunch, then see if there is something that will make it even better for you. There are a lot of suggestions around here; I found several threads by searching for "lab rats" and discovered that people have already invented the wheel when it comes to modifying and customizing a lot of masks.

Once you get the hardware settled, sleep will most likely start to come. I took Lorazepam for a while to curb my panic attacks, and gradually started cutting back once I was really sleeping--at about 4 to 6 weeks. Give your body and mind time to adjust--it WILL happen! I'm so addicted to "Darth" now that I won't even nap without his company.

Weezy

Wow, you are really doing great! Hang in there.

Try turning your humidifier down. Too much humidity can bother your sinuses as much as too little. It sounds counterintuitive, but I really have problems if my humidifier is too high.

First, trust your instincts on the sinuses and get thee to a doctor. Something's not right and if your sinuses were giving you problems prior to starting CPAP ("as this actually has been a problem since way before being diagnosed, attributed it to allergies."), then figthin' sinus pain while trying to adjust to CPAP is a sure fire way to undermine getting used to CPAP in my humble opinion.

Second, echoing Janknitz, consider turning the humidifier down as well as up. When I had to switch to the PR S1 it took me a over a week to figure out that turning the humidifier down to 1 was what I needed to do to make my nose and sinuses feel better. [On my previous ResMed S9, my nose and sinuses been happiest at 3 and 3.5.]

Putting the hose in a hose cozy may very well help make you much less aware of the hose if you chose to bring it under the covers with you. That's what I do. My hose feels like a large stuffed toy snake. Hence the name of my contraption is Kaa, after the snake from The Jungle Book.

Sleeping in warm PJs and my husband's robe helps me deal with the cold blast of exhaust air from the Swift FX that blows on me. Hubby's robe is large enough for me to wrap around my chest twice like a blanket, where mine is not. Hubby wants his robe back (since we keep our house at 60 at night), but he graciously gives it to me each night after he climbs in bed. We need to get another large man's flannel fleece robe. They're cut with much wider arm holes than women's robes. If you decide to go with a hose hanger and the exhaust flow is on your head, you might try an old-fashioned idea: sleep with a night-cap.

Finally, if insomnia decides to raise its ugly head in spite of the melatonin, speak with a nurse or PA in the sleep doctor's office sooner rather than later, and tell her you want help dealing with the insomnia, and and that you would strongly prefer a non-drug based way to deal with it at least for now. But be aware: Non-drug based insomnia therapies require their own hard work. (I'm involved in my own little insomnia war right now. The latest updates are here, here, and here.) But in all seriousness, if the insomnia is not addressed, it can easily undermine and overwhelm your efforts to adjust to CPAP therapy. Better to not ignore it and hope it will go away on its own because the insomnia most likely won't go away on its own and it may make your adjustment to CPAP much more difficult.

DocWeezy wrote:Also, don't be afraid to get creative with your mask and customize it with additional straps, whatever it takes. Find one that is the best of the bunch, then see if there is something that will make it even better for you. There are a lot of suggestions around here; I found several threads by searching for "lab rats" and discovered that people have already invented the wheel when it comes to modifying and customizing a lot of masks.

Good suggestion by Weezy.
LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

Check out all the mask modifications there -- even ones that are not listed for other masks than the one you have. Sometimes a "fix" that works for a mask unlike yours can be tweaked to work for yours.

CruzTerri wrote:the exhaust... the mask I'm using blows the exhaust straight up. If I turn the hose 90 degrees to the right, then it's blowing straight at my husband. If it's blowing straight up my forehead get cool/cold. So if I get the hose hanger, this would cause the exhaust to maybe blow straight down, so I'll need to make sure that I have the bed covers pulled up to my chin, until I get a hot flash!

I've tried a ton of masks and there's only one I've used that has (imho) "the perfect" placement of the exhaust vent. Aeiomed's "Headrest" with nasal pillows. My favorite mask by far for many years now. Doesn't mean it would suit everyone, of course!

The "Headrest's" vent is place up high, above eyebrow level, and points straight up. Doesn't hit your bed pillow, your arm, the bedcovers, bed partner...nothing. It's completely out of the way.

It's a crazy looking mask in pictures. Most people would never even try it because it looks bulky, heavy and ridiculous to just see it. But it's extremely lightweight and unobtrusive. Its headgear is a little too big on many women (me included) so when wearing it with its headgear, I use a soft, stretchy homemade strap to cradle the nasal pillows in place for my toss'n'turn sleeping style. When using it with the headgear removed (the way I prefer it) I used two homemade straps. Works great for me.

LINKS to HeadRest nasal pillows mask topics (same mask has had other names: Aeiomed Aura, then Headrest, then Invacare Twilight NP, then back to Headrest again.)
viewtopic.php?t=3098

Terri, you mentioned this:

CruzTerri wrote:I have noticed that I do wake up with a dry mouth, I have a nasal mask.

If using a non-FullFace mask, a dry mouth is usually a big red warning flag that "mouth breathing" is happening during sleep. That can sure interfere with getting effective CPAP treatment unless a person does one of these things:

1. switch to a FF mask

or

2. take measures to keep the mouth closed --

a. try a chin strap (chin strap alone doesn't get the job done for me at all.)

b. try tape over the mouth (I've been doing that for six years, plus I add a chinstrap to prevent cheeks from ballooning out and loosening the tape.)

c. try a way to seal the lips (Polident strips -- works for some.)

d. try making a "Do It Yourself" DIY mouth guard to keep the tongue shoved into an airtight sealing position inside the mouth. (I made one of those -- worked great. Accidentally became a dog's chew toy. Since tape suits me fine, I never got around to making another.)

For more about all those things, check out:

LINKS to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

If I didn't do one or more of those mouth breathing controls, I'd have to use a FF mask all the time instead of my much more comfy (for me) favorite nasal pillows mask.

Thanks Weezy,

One other thing, is that with the EasyLife Nasal mask, of course, I'm not to "tighten" the straps, but I found that when I turn my head while lying down, my head turns inside the headgear causing issues with the mask. A suggestion has been made to me to try a "slippery" material pillow case on my pillow. So, I might give that a try.