Newbie: My journey, night two

snuginarug wrote:Night four: Sleep!

I slept better last night than any night so far. I still got up in the middle of the night, but that's ok, I've been doing it for so long, I have gotten used to it. My body found a position that is more comfortable, with my hand tucked under my cheek. I don't feel like superwoman this morning, but I am trying to be patient.

It is just beginning to come home to me that I will be doing this the rest of my life. Eeek!

EDIT: the swelling in my ankles is almost gone! I've had this swelling every summer for two years now. Yay for cpap!

Cure for swelling in ankles lot's of lasix (Furosemide)

congrats on having a better sleep night 4. i hope tonight goes just as well for you.

Patrick A wrote:It is just beginning to come home to me that I will be doing this the rest of my life. Eeek!

Patrick,

Don't think eeek. Rather, think YIPPIE!. Yippie, I get to sleep better for the rest of my life. Yippie, I just avoided having a heart attack or a stroke. Yippie, I feel so much better. Yippie, I just met some really cool new people on-line.

-john-

Well, last night was pretty sucky but not because of the machine or the mask. Plain old insomnia. Several times I had to check the exhaust vent to see if the machine were still on because my breathing was so easy and normal, I thought it must be off! How's that for adjustment!

echo wrote:Sounds like you're well on your way to becoming a cpap success

Your mask - I too keep mine a bit lower on my face and that works better, it does not necessarily mean that your mask is too large. If you try on another mask, make sure you try it on while using the cpap at your pressure. Trying on a mask without the cpap air will give you very misleading results.

The hose hanger - mine is probably the cheapest money can buy! I need to take a pic one of these days and post it! We put a nail (or a screw?) in the ceiling, and hung a double looped thin rope from it, with a keychain ring thru it. I then use a very short bungee cord (6" or shorter), connect both ends of the bungee cord to the keychain ring, and thread the hose through it. We positioned it so the rope hangs above my chest, about a foot or two above the bed. Cheapo but it works!

I'm going to check out some other masks, but maybe this one IS right for me. I read your comment about wearing it lower, and tried that last night. Fewer leaks, more comfortable. I really love the quick clips. It's funny that following the directions for fitting the mask made it almost unbearably uncomfortable, and wearing it wrong makes it work so well. I'm taking in the hose hanging ideas others have been giving, and contemplating which would have the least impact on my apartment--- they'll take nail and screw holes out of my deposit when I move.

Patrick A wrote:
Cure for swelling in ankles lot's of lasix (Furosemide)

Thanks for the tip. Hopefully I won't need it!

sleepymama wrote:congrats on having a better sleep night 4. i hope tonight goes just as well for you.

Thank you, you're so kind.

jweeks wrote:

Patrick A wrote:It is just beginning to come home to me that I will be doing this the rest of my life. Eeek!

Patrick,

Don't think eeek. Rather, think YIPPIE!. Yippie, I get to sleep better for the rest of my life. Yippie, I just avoided having a heart attack or a stroke. Yippie, I feel so much better. Yippie, I just met some really cool new people on-line.

-john-

Patrick isn't saying Eeek, I am . And you're right I should be saying Yippie. I just need to adjust my mind, it's a really big change. But yeah, Yippie for all those reasons you listed, and especially Yippie about the ankle swelling. I am confined to one pair of shoes all summer because my feet are so swollen. And if the swelling goes down in the summer, I should be back to normal this winter and be able to buy some nice new shoes. You know, women and shoes...

EDIT: now that I come to think of it, the pressure might be messed up, explaining why I am breathing so easily and normally. When I put my hand over the exhaust, there's not the usual strong flow of air. I am afraid that it might be lapsing into the flex pressure permanently instead of alternating between flex and full therapeutic pressure. It would be really a pain if I got a lemon.

Hi Snug
I'm the biggest cheapo around and I make everything I can. My hose goes over my headboard, secured with a hunk of old elastic, then I bought a wall plant hanger at the dollar store for a buck, screwed it to my headboard and voila a hose hanger. I've also made hose covers, (left over fleece), head gear covers,( left over fleece) home made remzzz, (old well washed t-shirt). See, I only spent a buck
to get all this extra stuff. If you are crafty and have left overs from previous projects, put your thinking cap on and go for it. The home made remzzz I use with my quattro and the pattern I got off this forum, the head gear and hose covers, I looked up pad a cheeks and others and just made my own. If you knit or crochet, you can do that too.
With regard to your sleep patterns and other problems, patience and persistance are the key, one day at a time, one problem at a time and it will all work out. When I started 4 months ago I read everything I could on this site and would "tweak" one new idea at a time until it worked. Now I am doing great, sleep all night and wake up refreshed. You will get there, remember patience and persistance.
Cheers and good luck on you journey.
Nan

snuginarug wrote:EDIT: now that I come to think of it, the pressure might be messed up, explaining why I am breathing so easily and normally. When I put my hand over the exhaust, there's not the usual strong flow of air. I am afraid that it might be lapsing into the flex pressure permanently instead of alternating between flex and full therapeutic pressure. It would be really a pain if I got a lemon.

While it is of course possible that your machine is "messed up", it's more likely that it's set up in APAP mode and you're feeling the lower pressure... or you are used to it and so don't feel the wild rush of air anymore. Can you check what your settings are? I don't have the instructions on hand for how to get into the menu to check the settings for your machine, but it should be easy. Either do a search on the forum, or perhaps start a new post on how to obtain the settings. Others will know!

As for wearing the mask wrong, I also wear my Activa "wrong" because my head is too small for the straps so I have to do some funny things to get it stable in the right position. Search for lab rat awards, you will laugh at some of the ingenious things people have come up with to get their masks fitting perfectly (among other things)!

I lost count of how many nights it has been. Last night was not so great. I woke up every two hours. It was because my mask was not cooperating with my desire to sleep on my side. I kept adjusting it this way and that, putting it on, taking it off, putting it back on again, jumping out of bed in annoyance, desperately adjusting straps. To no avail. I got my sleep finally on my back. Which is not so hot because it increases likelihood of apnea events, is that not correct? Anyway, I think the problem is that it is too big, hence the constant leaking. That would be a really nice problem, since i like the mask so much otherwise. The quick clips are AWESOME.

echo wrote: While it is of course possible that your machine is "messed up", it's more likely that it's set up in APAP mode and you're feeling the lower pressure... or you are used to it and so don't feel the wild rush of air anymore. Can you check what your settings are? I don't have the instructions on hand for how to get into the menu to check the settings for your machine, but it should be easy. Either do a search on the forum, or perhaps start a new post on how to obtain the settings. Others will know!

As for wearing the mask wrong, I also wear my Activa "wrong" because my head is too small for the straps so I have to do some funny things to get it stable in the right position. Search for lab rat awards, you will laugh at some of the ingenious things people have come up with to get their masks fitting perfectly (among other things)!

I am starting to think that the problem is sleeping through the 12 noon mark. I missed my chance to try it out again today and see if I can re-create the problem. If this were the case, my machine is not messed up, simply updating. Anyway, I started a new post about this problem. I see my DME tomorrow and plan on taking my machine with me, so that it can be inspected if necessary.

On the topic of masks, that's why I am seeing the DME tomorrow. I will bring a variety of my own pillows, and ask if I can try out a special cpap pillow. I know they sell them because they have one displayed. So far the DME has been a dream come true. They called me not once but twice to see how I was doing, and promptly made an appointment with me to try to resolve my comfort issues.

I got confused about my appointments with the sleep center and called them. The upshot of my conversation with the receptionist is that I have an appointment with the sleep doc in a month to read the data from my card. I am looking forward to that so I can see how I am doing and what the doc has to say.

UPDATE

First off, nan, thank you for the neat ideas and your encouragement. I somehow missed your post last time around, so my thanks are a bit tardy. Whoops!

Wow, I feel super this morning!

This is my first week done. I went to the DME. I got a new mask that is comfortable and fits correctly. I followed the advice of the folks on this forum, and really put that mask to the test before I accepted it. I tried it with one pillow, with two pillows, with a special CPAP pillow. I lay on my side and really smooshed my face into the pillow. No leaks at the DME and no leaks at home. They convinced me that the feeling that the pressure had decreased was my imagination. BUT they said I could come in and have the pressure checked any time I wanted, they'd be HAPPY to do it. *chuckles with delight* I have the best DME. I mentioned the forum , and she was glad I'd found my way here. Last night was my first night with the new mask. I am sorry to say that I had problems with claustrophobia and feeling suffocated. I woke up every two hours and ripped the mask off before I could get worked up into a state of panic. I find this strange as I did not really have much in the way of problems before. But nonetheless, I feel great this morning, so I'm just going to keep on doing my best to keep the mask on as long as possible without panicking. I am keeping a sleep diary, so hopefully I'll soon be able to look back and say, Wow I'm glad those problems are over!

I feel like this is the beginning of the rest of my life.

Thank you to every one who responded, and to all who have added to the great repository of old posts.

Wow, that's all great! Good luck with the new mask, may your nights be filled with fulfilling sleep!!