My progress on CPAP (or lack thereof)

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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socknitster
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Post by socknitster » Fri Aug 03, 2007 5:25 pm

AMandalee,

Sounds like you are getting lots of good advice. Many of us had pain in diaphram and lungs and nose at first. Unused muscles--when you have apnea your respiratory system is suppressed overall. The cpap forces you to breath better. I found my nose felt better (less burning) when I turned my humidity up to max=5. You sound like you are getting rainout, however, which I have never experienced.

Rather than change your pressure, perhaps lengthening your ramp would be a better bet. Mine was orig set at 20 min, not long enough. Try 40 or 45. Can be changed from clinicians menu, which you have been given instructions for above.

We ALL of us felt despair the first few nights. DO NOT GIVE UP. It wil get better. Maybe you need to go back for a diff mask at your dme. Give them a call. My dme has been actually pretty good about exchanging masks for me. Your insurance may cover several masks in the first months. Check into that. Time and the Right Mask are the two keys to getting used to this!

I use a neti pot from the health food store. Stay away from sea salt and iodized salt--both are irritating.

jen


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amandalee
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Post by amandalee » Fri Aug 03, 2007 5:53 pm

Thanks for all the great advice.

I will have to pay more attention to the mask. When I took it off around 4 am, it felt like the cushioning thing was wet and had been sliding around on my face, along with the condensation that had built up inside the actual mask. I didn't really look at the hose. Maybe it is a problem with rainout.

Anyway, my machine is going to a little "attitude adjustment" later on. Time to show it who's the boss...

I'm wondering the various clever things people have invented, like the Papillow and Padacheeks would help me? I'm getting a trial of Pur-Sleep soon, which I am really looking forward to.
The Papillow looks interesting, but it seems a bit on the pricey side. I know, I know... health is priceless. By my cashflow is rather tight, so I'd have to be pretty sure before dropping $60-70 on a pillow.
And Padacheeks didn't have my mask listed, so I wouldn't be sure which one to get. Maybe it doesn't matter.


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cflame1
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Post by cflame1 » Fri Aug 03, 2007 5:59 pm

amanda,
Just send pada an email or a pm and ask. She may know what the correct ones are to get. You may need to wait on her though, the last time that I talked to her in chat, she was planning a vacation.

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RiverDave
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Post by RiverDave » Fri Aug 03, 2007 8:09 pm

amanda,

I use the same mask you do (quattro). The padacheeks for the mirage FF work just fine. I will admit that the only pad I use is for the forehead, but the headgear for both masks is similar.

Good luck,


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StillAnotherGuest
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Even If It's Just 1 in 10,000...

Post by StillAnotherGuest » Sat Aug 04, 2007 3:53 am

amandalee wrote:Do any of you think it would be worth it at all to call or email my doctor at this point about the pain I'm having during the day when I breathe? Or is it likely that I'd just get a stock response of "give it time," which would mean I've just wasted what little energy I have left.
The "stock answer" should be to get examined and CXR'ed immediately to see if you picked up a pneumothorax after initiating CPAP.

While the possibility of pneumothorax after proper application of pressure therapy is so small as to be almost be coincidental, should there be predisposing factors, like a congenital bleb, then that puts you in an entirely different risk group.
SAG

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Aromatherapy may help CPAP compliance. Lavender, Mandarin, Chamomile, and Sweet Marjoram aid in relaxation and sleep. Nature's Gift has these and a blend of all four called SleepEase.

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sharon1965
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Post by sharon1965 » Sat Aug 04, 2007 7:34 am

like james said, NeilMed Sinus Rinse kit, definitely...not expensive, comes with pre-mixed packages, you already have distilled water, you're good to go

i think the advice about getting used to the machine/interface in a comfortable, familiar environment (ie in front of the telly) is perfectly valid...many people on these boards have advised newbies to wear their mask while watching tv or reading during the day, so why not at bedtime? you can work out the sleep hygiene thing as time goes on, imho

as far as the tweaks go, when i first starting reading posts on these boards i was taken aback at how much time and trouble people went to to make this work--but now, 6 months later, i have employed so many of the ideas: padacheeks, comfortsleeve hose cover, pur-sleep, papillow, decapitating my aura (sounds spooky ) sinus rinsing, over-head hose management...it's almost funny, but each thing i've added to my repetoire has improved my therapy...maybe one of these days i'll get it right! LOL

i really hope you get this worked out, amandalee...i kind of envy you the diagnosis at such a young age, not 41 years old like me, with many more years of damage to undo

keep on keepin' on--you'll get there

sharon1965


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ozij
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Post by ozij » Sat Aug 04, 2007 7:46 am

Since I had now idea what a "congenital bleb" is, and since I know SAG is a person who knows his business, I looked it up.
http://www.medicinenet.com/pneumothorax/article.htm

What is a pneumothorax?

A pneumothorax is a collection of free air in the chest outside the lung that causes the lung to collapse.

<snip>

What causes a pneumothorax?

Spontaneous pneumothorax is caused by a rupture of a cyst or a small sac (bleb) on the surface of the lung..
<snip>

What are the signs and symptoms of pneumothorax?

Symptoms of a pneumothorax include chest pain that usually has a sudden onset. The pain is sharp and may lead to feelings of tightness in the chest. Shortness of breath, rapid heart rate, rapid breathing, cough, and fatigue are other symptoms of pneumothorax. The skin may develop a bluish color (termed cyanosis) due to decreases in blood oxygen levels.

O.

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Hoover
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Post by Hoover » Sat Aug 04, 2007 9:48 am

I also use the neilmed bottle - kit under $10 at all major drugstores and it comes with premeasured packets to get you started. I used those and kept some aside for travel and now I mix my own salt/soda solution. I found this really easy to get used to doing 2x/day - it really makes a difference.

Good luck and hang in there.


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amandalee
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Post by amandalee » Sat Aug 04, 2007 4:44 pm

Thanks again for all the great advice.

Last night was better. I started with the humidifier at 2, then switched it to 1 after awhile. I kept the C-Flex at 3, and set the ramping to start at 5 (a nice number between 4.5 & 6 )

My, my... it sure is handy to have access to that provider menu. I turned the pressure down to 10. It made a huge difference. Today I can breathe without feeling like my lungs are going through a paper shredder! Amazing!

I put on the mask a little after 9pm (after I had finished my nightly carb-binge ), and wore it while I laid down to watch TV. I think I must've fallen asleep a little after 10, because I don't remember any of the shows I was going to watch.

I woke up for a little while around 1 am, then fell back to sleep on the couch till around 4 am. Then I moved everything to my bedroom and slept until about 10 am with the mask. (then until 1 pm without it).

This is progress. No pain today (except my sinuses still, but I am working on that), and I feel slightly less crappy than usual.

Maybe there's hope for me yet.


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RiverDave
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Post by RiverDave » Sat Aug 04, 2007 4:52 pm

Glad things took a turn for the better.

Good luck

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goose
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Post by goose » Sat Aug 04, 2007 5:07 pm

Yee ha!!! Progress!!!!!

Right on amandalee - you'll get it!!!!!

cheers
goose

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phil1001
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Post by phil1001 » Sat Aug 04, 2007 11:45 pm

Hi amandalee,

now this is where the charting comes in, the stats recorded by the machine will show how many (if any) apneas you had, how many leaks etc etc...

without the charts its very hard as feeling rested or not is subjective, you may find that 10cm is a good pressure or it could be dropped further.

make sure your smartcard is in everynight and at least the history will be saved.

Carry on with the same settings and on the couch until you are sleeping through the night, then try your bed again.

Sounds like you are getting there !

Phil

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echo
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Post by echo » Sun Aug 05, 2007 4:43 pm

YAY!!!!!!!!!!!!!!!!!!

Now that's some GOOD progress Keep it up, and hopefully soon you will be over the biggest hurdles.

BTW, just out of curiousity - how is your mask working out so far? Did you personally choose the FF mask (I know you mentioned it in one of your posts but I can't find it back) ?

Sleep well tonight

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amandalee
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Post by amandalee » Mon Aug 06, 2007 2:17 pm

I chose the full-face mask because I have alot of problems with allergies and the sinus problems, stuffy nose, etc that comes with them, so I end up breathing through my mouth alot. When I tried using the nasal mask for my sleep study, and couldn't breathe through my mouth, I felt like I was going to suffocate. Weird...
This mask actually works pretty well for me. It's not extremely comfortable, (like any mask really could be?) but at least I am able to fall asleep wearing it. I don't seem to have had many problems with leaks, but I'd have to look at the charts (as Phil suggested) to know for sure.

I ordered the card reader from that Two Factor site in Hong Kong. Until I get it, I'm guessing there's not much I can do in the way of charting, unfortunately. Should be interesting to see though.

Yesterday I actually moved the machine back to my bedroom and was able to fall asleep pretty easily with it.
I noticed that I'm starting to remember some of my dreams now, which I hardly ever used to, at least not in much detail. But today I can remember two extremely bizarre ones from last night.
I still have alot of trouble waking up in the morning, and feel pretty tired, but with the lower pressure, at least I'm not in pain anymore. And I guess it just takes time to feel better after starting the treatment.

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j.a.taylor
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Post by j.a.taylor » Mon Aug 06, 2007 5:55 pm

amandalee,

I'm glad that things are starting to turn around for the better.

It sure sounds like you're on the right track.

It's great to know that you're starting to experience some relief, instead of coping with increased pain.
John A. Taylor