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between lady room runs..and twistin and turning cause my body hurts so much
and now my mouth so dry..needing to swallow..
and having to concienciously wake up to be able to change positions because I have that hose attached to my face..
I am lookin at about 15 a night now... FRIGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGG
and now my mouth so dry..needing to swallow..
and having to concienciously wake up to be able to change positions because I have that hose attached to my face..
I am lookin at about 15 a night now... FRIGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGG
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Re: How Many Times a Night..do you guys wake up?
Sat, March 3, 2007 - 11:19 PMHoly crap, woman, how do you get any sleep at all?!!!
I sometimes sleep through the WHOLE night! I'm not being smart when I say that - I just mean that it's still a wonderful thing for me to do. I usually get up once a night and sometimes, though rarely, wake if my husband is getting up or coming back to bed, but it's rare, that second time.
I have a 10' hose (because I think I thought I needed one) and I have awakened with it both around my waiste (hence the need for the 10-footer!) and, a little alarmingly, around my neck, but never strangling me, thank you God.
For the most part, I am a pretty lucky being. -
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Re: How Many Times a Night..do you guys wake up?
Sun, March 4, 2007 - 4:58 AMDarla...i was pretty frustrated the other night..
last night....I took the trazadone..cause I really needed the sleep..and it helped alot
think I was at about 3 or 4...conscious awakes
but couldn't leave the mask on all night..ripped that off..around 3am...
hope this sleeping thing can get sorted out..soon...
you are really lucky..to have a full night sleep..that is a blessinggggggggggggg -
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Re: How Many Times a Night..do you guys wake up?
Sun, March 4, 2007 - 5:00 AMsee my problem ..isn't just the apnea
its the fibro too..which causes sleep disturbances...
but they say..if I can get the cpap working ..it will help the fibro...
seems like I am climbing..the Himalayan mountains~ -
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Re: How Many Times a Night..do you guys wake up?
Sun, March 4, 2007 - 7:41 AMYou might feel like you are climbing the Himalayas, but you aren't alone...we are right there with you - connected to you by a safety rope...sometimes it helps me just to know that someone else in the world halfway understands what I am up against, you know?
Just know that we are here and understand. Glad, so glad, that you are with us - not just for you, but for us as well...you don't know just how much you bring to this stalwart group!
Hugs to you,
D. -
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Re: How Many Times a Night..do you guys wake up?
Sun, March 4, 2007 - 10:27 AMThanx so much Darla...
we need MORE POSTERS
I have the same problem in my Asthma group..
people join..and than.. don't post..
WERE ARE THE POSTERSSSSSSSSSS...
over in the asthma group...its similar to this..its just like 3 of us..trying to keep it running
and me..as I am the moderator..it falls on my shoulders... even when I try to shake the tree..
I get like..2 or 3 apples!
I'm so glad..or ..Artist/golfer formally know as MC..started the groupppppppppp -
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Re: How Many Times a Night..do you guys wake up?
Sun, March 4, 2007 - 10:29 AMand way off topic..well sorta..but in some ways..maybe right on my topic..
looks like Anna Nicole..might have had..Lupus/Fibro
and note..the painful sleeping problembo
profile.myspace.com/index.cfm
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Re: How Many Times a Night..do you guys wake up?
Wed, March 7, 2007 - 8:42 AMHello, I am new here, but I am somewhere there climbing the Himalayas too lol. I never guessed it would be so hard to get adjusted to the masks. I also have fibro and a type of lupus. -
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Re: How Many Times a Night..do you guys wake up?
Wed, March 7, 2007 - 9:39 AMme too Karyl..and its the fibro that keeps waking me up..cause my body freakin hurts so much..
what kind of meds are you on for the fibro..
and there is a fibro tribe group too..that is really supportive..
tribes.tribe.net/9d84084c-...02e406b088
there is the link for it... don't lose hope..you are working on your issues..that is what is key~ -
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Re: How Many Times a Night..do you guys wake up?
Mon, March 12, 2007 - 8:38 AMMy fibro was finally dx'd in November, 2005, after years of unexplained pain and fatigue. The doc kept congratulating me on how my lupus labs were wonderfully good and I kept feeling just terrible. I asked about the possibility of fibro several times but apparently my doc thought I was hoping I had fibro instead of lupus rather than lupus AND fibro. But anyhow, long story short, after my brother was dx'd with fibro at Mayo Clinic the doc finally listened to me and my symptoms and agreed that yes, fibro is part of my trouble.
So then I started ambien (for sleep) and nortriptyline for the fibro. Ambien worked beautifully for two months and then stopped working entirely. ambien CR did no better. I kept on with the nortriptyline for six months. I suddenly started gaining weight rapidly and talked with the doc about it to see if it could be the nortriptyline. I had not noticed it doing anything to improve my sleep or anything else -- just the weight gain. So I stopped taking it.
I do take some supplements that have helped me quite a lot with the pain levels. I also do regular workouts at Curves for Women, which can be tailored to how I feel by varying intensity. At home I have a treadmill, recumbant bike and healthrider that fill in when I can't get to Curves or when I am not feeling well enough to drive. The regular workouts really help me.
Since last Sept. I have been taking lexapro and that has seemed to help with pain and mood levels. But sleep has remained a problem. Since the sleep studies in Dec. and Jan., I see why sleep has remained a problem lol. Not having an open airway is a big minus.
What do you take for the fibro?
thanks
karyl
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Re: How Many Times a Night..do you guys wake up?
Mon, March 5, 2007 - 1:32 PMHi Heron!
It's been a busy weekend as I had a major performance as a poi spinning artist Saturday night and I'm still recouperating!
Before my CPAP, I used to consciously get up at least 4 times a night needing to pee! Now I tend to sleep through the night and only rarely get up perhaps once. That doesn't mean that I get a full night's sleep though. Depending on what's going on in my life and my stress level, my sleep is affected, even WITH CPAP therapy. I had been SO nervous about the show I just performed in that I had awful sleep for the week preceding the show. Now I'm really feeling it because I'm exhausted and, as usually happens after a big event, I'm sick. I've got the sore throat and achy chest from hell. And don't even ask about the headache!!
But, to answer your original question about waking at night; its much better for me now.
You're not alone Sweetie!!! We're all connected by our hoses!
Love,
Leah
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Re: How Many Times a Night..do you guys wake up?
Mon, March 5, 2007 - 1:39 PMI used to wake up several times a night. But now when I sleep with the BiPap I wake up once every (4) hours.
My sleep study said that without the BiPap I was having sleep cycle interruptions at least 40 times a night (but perhaps that does not mean waking up with eyes open and feeling frustrated). When I finally fell asleep with the test Cpap, they said I slept like a baby.
With my BiPap I normally get a solid 4 hour stint before I wake up once. That alone has made me functional. But when I get to bed earlier, and the first wake up is pre-dawn, I will go back to sleep and get another 3-4 hours in. So, I now wake up once (that I know of). My problem is that for some reason I don't want to sleep until early am. I know I have insomnia and I am on cannabis therapy for that. This has worked wonders for me but I still find that I often do not take my meds early enough and that I am really used to staying up late. This might sound weird but I am so used to it I feel like I will "miss out" on something if I go to bed early. How weird, huh? No logic there.
One thing for sure with me - if I do not sleep with my machine I feel beat up. And if I go (2) days without the machine, I start to get really irritable and achy and unpleasant. A real jerk.
MC
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Re: How Many Times a Night..do you guys wake up?
Mon, March 5, 2007 - 1:52 PMMC,
I'm terrified to NOT use my CPAP. Heck, I won't even take a nap without it! I think I've logged over 2400 hours on it already, if not close to 2400.
I've got a new mask, hose and headgear; but I haven't used it yet!! How silly is THAT? Its the same kind as my old one but I haven't taken the time to fit myself to the new mask and when I want to go to bed, I don't want to take the time needed to make the mask adjustments to I haven't used it yet.
1-800-INSANE!
Leah
NEED COFFEE!!!!
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Re: How Many Times a Night..do you guys wake up?
Mon, March 5, 2007 - 4:37 PMguess what folks..
i made my first night last night...thru the night..~
whew.. my nose is dried up and been sneezin all day...
but at least I made it thru the night...
lets see if I can make it two!
guess what Mc...guess how bad my apnea was..she said I stopped breating .. 85 times..in an hour..during my test..
frig eh~
no wonder I am sick..
am on new meds...started Requip.. its restless leg meds..that is suppose to help fibro..its a dopamine agonist..
guess fibro patiences..do not have enough dopamine in their brains.. well you know ..its one of the theories..
started the new meds..last week..its on increasing dosage to get to maintanence dosage..which I haven't reached yet
but I do think i am feeling a lil better...oh and some pain meds too..cause they found some..arthritis in my knee which has been killing me and in my feet..FRIg..on top of everything else..looks like its gonna be a painful life for me..if I cannot get things sorted..
but am feeling a lil better..sooooooooooooooo..lets hope it continues..
and I do have more energyyyyyyyyyyyyyyyy....let hope that continues too..
huggss..to all of you folks..Leah, Darla..and our fav..Mc..who seems to have gone back to his own name..and not formally known as~
thanx all for your support and wisdom...and experience..to cheer me on..this journey -
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Re: How Many Times a Night..do you guys wake up?
Mon, March 5, 2007 - 4:41 PMWOO HOO!!!!!!!!!!!!!!!!
Congrats on making it through!!!!!! Now you know you can do it and can always put faith in that when things seem a bit frustrating. Ups and down for sure but steady upward slope in the big graph, right?!
Your energy will continue to increase and I hope and suspect some of your arthritis will do a bit better. When I don't sleep enough, my muscle and joint pains increase dramatically.
But anyway...in the here and now...WOOO HOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
MC
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Re: How Many Times a Night..do you guys wake up?
Mon, March 5, 2007 - 6:41 PMHip hip hooray
Heron's made it
thru the day
(er...night)
and now its time
for me to say...
Hot dang, girl! I knew you could do it. The best and the rest is yet to come. You'll see! -
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Re: How Many Times a Night..do you guys wake up?
Mon, March 5, 2007 - 7:36 PMthx..guys..
gonna try for second...
............now if I can get the bladder and body to cooperate..that would be..fabuloussssssss
sweet dreams to all ...huggss too.. Heron -
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Re: How Many Times a Night..do you guys wake up?
Tue, March 6, 2007 - 4:42 AMmade it night 2! whoooooooo hooooooooooo...
I do think....that little machine just tucks you into your own world...
does this thing affect your sinus's folks...
my nose yesterday...kept makin me sneeze yesteday..felt like dry tickle...
and ..today ..my sinuses are worked up too...
been trying that ...ocean spray.. yesterday...
never had sinus problems before.. -
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Re: How Many Times a Night..do you guys wake up?
Tue, March 6, 2007 - 11:33 AMWOO HOOOOO x 2!!!!!!!!!!!!!!
Now...regarding sinuses...
Not sure how other people fare but for me, I had a bit of irritation when I first started using my BiPap regularly. And this sounds bad but I got used to wakign up with "desert mouth".
But I use that Ocean spray from time to time - especially when I go up to the Sierra's where the air is thinner and much drier.
MC -
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Re: How Many Times a Night..do you guys wake up?
Tue, March 6, 2007 - 11:39 AMMc..so did your nose and sinus's get use to the cpap?
and the irritation went away?
I hope so..I have been sneezin with a tickle in my nose for 2 days..
and never had sinus problembos before -
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Re: How Many Times a Night..do you guys wake up?
Tue, March 6, 2007 - 11:44 AMYeah. Well, I did not have too much sinus problems but I had scratchy throat. But my nose would feel so dry it felt crusty a bit until I got some moisture in there after waking up. But it got used to it - and that was with me refusing to use my humidifier because I felt like it reduced the flow on my biPap. I know logically this is not true but that was when I could not get over the panicked, suffocation feeling of having somethign strapped to my face.
MC -
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Re: How Many Times a Night..do you guys wake up?
Tue, March 6, 2007 - 3:23 PMI have perpetual sinus difficulties because I can get horribly stuffy and/or runny nose with my allergies. I take prescription allergy meds DAILY!! I even have to use a Breathe Rite Strip on my nose before I put on my CPAP. That's how bad it is for me! But it didn't start when I started CPAP therapy. It was like that BEFORE. I have found that by using my Breathe Rite Strip, making sure I've used some Ocean (or generic) nasal saline spray BEFORE putting on my mask, taking all my allergy meds AND using my machine's humidifier my sinuses re not any more or less of an issue than before CPAP therapy. How's that for a confusing sentence!! The only thing I've noticed is that I have a very slight bloody nose on almost a daily basis now. I think that has to do with air being forced into the nasal passages all night long. It was MUCH worse and I was horribly stuffy when I tried using my CPAP without my humidifier. I can't tolerate, in the slightest, dry air.
So now my nighttime routine is a little longer than it was before CPAP, but my quality of life is so much better!
Love,
Leah
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