Newbie and needing help!

[minolta25]

Hello to all. I am new to the forum(s) and in search of information. I have been on CPAP for over a year with moderate results and my DH was just placed on BIPAP (he has congestive heart failure, diabetes and many other problems).

I must say I am overwhelmed at the terminology and did not realize just how little I know! Is there somewhere I can go to learn the "lingo" and not feel quite so ignorant?

I was placed on CPAP because my oxygen levels have fallen so low and was diagnosed with idiopathic hypersomnia early on. I WAS on 400 mg. of Provigil a day and have reduced to 200 mgs./day.

I have found that I CANNOT sleep with the machine unless I take a sleeping pill every night. Otherwise, I wake up every couple of hours. I was under the impression that the CPAP was supposed to make you sleep through
the night.

Thanks.

[Sleepy Boy]

Hi Minolta: I'm new here to, only been on a couple days. I've been on cpap since July, I still wake up sometimes in the night, usually mouths open & airs flying out, and mouths dry. There is so much Info. on here, and people that seem to know whats going on, I'm sure someone will help...

[Wulfman]

Welcome to the forum.

If you haven't already, try clicking on the yellow lightbulb icon (above)......"Our Wisdom" and do lots of reading.
Also, please fill out your profile with your machine, other equipment and pressure so we'll know what you're using.

PS.....I have a collection (or accumulation) of Minolta cameras.

Den

[minolta25]

Welcome to the forum.

If you haven't already, try clicking on the yellow lightbulb icon (above)......"Our Wisdom" and do lots of reading.
Also, please fill out your profile with your machine, other equipment and pressure so we'll know what you're using.

PS.....I have a collection (or accumulation) of Minolta cameras.

Den

So did my son and that is how the name came about many years ago. Thanks for the suggestion, and I will.

[minolta25]

Hi Minolta: I'm new here to, only been on a couple days. I've been on cpap since July, I still wake up sometimes in the night, usually mouths open & airs flying out, and mouths dry. There is so much Info. on here, and people that seem to know whats going on, I'm sure someone will help...

I usually wake up when my mask starts leaking but other things as well. I understand what you mean about the dry mouth - that is why I went with the face mask as I tried the nasal and cotton mouth does not begin to describe how I felt. Thanks for your reply.

[minolta25]

OK, I give up, where would I find the profile?

[alnhwrd]

Welcome to the Forum! Learning to adapt to and become comfortable with CPAP therapy is a process. Some take to it more easily than others. For some they start out able to use it, like you, just a few hours at first, but over time as they adapt they are able to use it for longer and longer periods until they are sleeping with it all night. Effective CPAP therapy treats OSA, which means you no longer have multiple awakenings or arousals during the night that are caused by your body having to wake itself up so you can breath, but if there are other things going on CPAP may not address them. Good sleep hygiene is a must for many people, yours truly included. You can read lots of articles, including ones addressed to new and struggling users by clicking on the "Our Wisdom" light bulb at the top of the page. If you don't find what you need there, come back to the forum or chat room with the specific problems you are having (can't stand the smell, waking up with mask off with no memory of taking it off, leaks, sores, discomfort, etc) and someone here, who has certainly been through it before, will happily give you some advice. Whatever you do, commit to making it work and do not give up. Best of luck to you.

[Wulfman]

OK, I give up, where would I find the profile?

Just below the Search line (above), there's a place to click on "User Control Panel". Then there's a number of tabs and options within there to list the items you use.

Den

[minolta25]

Welcome to the Forum! Learning to adapt to and become comfortable with CPAP therapy is a process. Some take to it more easily than others. For some they start out able to use it, like you, just a few hours at first, but over time as they adapt they are able to use it for longer and longer periods until they are sleeping with it all night. Effective CPAP therapy treats OSA, which means you no longer have multiple awakenings or arousals during the night that are caused by your body having to wake itself up so you can breath, but if there are other things going on CPAP may not address them. Good sleep hygiene is a must for many people, yours truly included. You can read lots of articles, including ones addressed to new and struggling users by clicking on the "Our Wisdom" light bulb at the top of the page. If you don't find what you need there, come back to the forum or chat room with the specific problems you are having (can't stand the smell, waking up with mask off with no memory of taking it off, leaks, sores, discomfort, etc) and someone here, who has certainly been through it before, will happily give you some advice. Whatever you do, commit to making it work and do not give up. Best of luck to you.

Thanks and I will. Mine is a somewhat complex, multi-layered problem that has me thoroughly baffled. I have had a total of 3 sleep studies two of which were several years apart and the third was with the CPAP shortly after the second study. What prompted this most recent study was that I was hospitalized in '05 with oxygen levels of 50. After spending 8 days in the hospital (my first hospital stay other than childbirth!) I was no wiser than when I went in. I had a subsequent inconclusive bronchoscopy and my respiratory doc and I strongly disagreed as to the cause.

After many, many office visits to numerous different physicians, I eventually had the second and third studies done and am now enduring the machine. The irony of all this was that I was sleeping anywhere from 24 to 72 hours at a stretch when this all reared it's ugly head. Now, even though I fight my CPAP every night, I also cannot seem to sleep without it!

[minolta25]

OK, I give up, where would I find the profile?

Just below the Search line (above), there's a place to click on "User Control Panel". Then there's a number of tabs and options within there to list the items you use.

Den

Thanks!

[echo]

hi minolta, welcome to the forum for both you and DH!
In case you haven't found it yet, here are some definitions of the basic terminology:
Sleep Apnea Definitions (snoredog and rested gal)
Also at the bottom of that page are links to other posts on terminology.
You can also find, at the top of each thread, a link to the "CPAPopedia Keywords" appearing in that thread.
Or just ask

As for not being able to sleep the entire night with the CPAP, are you maying having mask issues? rainout? hose issues?
One additional place to start (this is also in the collective wisdom): ALL LINKS by rested gal
There is plenty there on mouth breathing, rainout (water in the hose), hose management (making sure that you're not pulling on the hose & dislodging mask), etc etc etc, oh and more terminology

Welcome again and keep reading

[minolta25]

hi minolta, welcome to the forum for both you and DH!
In case you haven't found it yet, here are some definitions of the basic terminology:
Sleep Apnea Definitions (snoredog and rested gal)
Also at the bottom of that page are links to other posts on terminology.
You can also find, at the top of each thread, a link to the "CPAPopedia Keywords" appearing in that thread.
Or just ask

As for not being able to sleep the entire night with the CPAP, are you maying having mask issues? rainout? hose issues?
One additional place to start (this is also in the collective wisdom): ALL LINKS by rested gal
There is plenty there on mouth breathing, rainout (water in the hose), hose management (making sure that you're not pulling on the hose & dislodging mask), etc etc etc, oh and more terminology

Welcome again and keep reading

Thanks. I think that you have hit on at least some of my problems. I struggled to find the right mask but just not sure there IS one! I almost gave up on my therapy because of it. I will research your suggestions and post again.

[echo]

Minolta, the mask really IS the key to this therapy, so don't give up on that yet. While some may not find the 'perfect mask', most of us do end up finding one or two masks that work great on most nights.. just takes some hunting around.

You should first check with your DME because they may allow you to return masks if they're not working for you.
Here are some mask trials that are running, which will let you try the masks for free: mask test drives. Or trade masks with someone else on the mask roulette.
Finally, you can try cpapauction.com for cheap masks.

Happy mask hunting (or, "the Odyssey of the Mask" as carbonman calls it )

[kteague]

It is not unusual for those with untreated sleep apnea to sleep long hours as the body's desperate attempt to compensate for the poor quality of sleep. It's a good thing that you now can't sleep without the cpap - helps keep you on the straight and narrow. Hopefully you'll get a mask that works well for you and you can sustain your sleep better, at least eliminate some of your wakeups.

Is there anything about your "somewhat complex, multi-layered problem" that could be contributing to your awakenings? Also, did any of your studies mention significant limb movements? They can be real sleep breakers. Some meds can affect sleep.

Since getting things leveled out using cpap (right pressure, mask ok) I've been able to fall asleep easily but not maintain sleep, primarily due to limb movments. A few months ago I began having to take Tylenol PM just to fall asleep and get any amount of sleep at all. I thought it would just be for a few nights, but apparently not. Hey, we gotta sleep, right? As long as the sleep aid doesn't mask an issue that needs resolved, such as needing a pressure change to address all the apneas. Have you done an overnight home oximetry to confirm that you are no longer having those desats?

Sure hope you work the kinks out of your therapy soon and get some GOOOOOOD sleep.

Kathy

[rested gal]

my DH was just placed on BIPAP (he has congestive heart failure, diabetes and many other problems)

Hi Minolta and welcome to the board. The others are giving you great advice and suggestions for your own treatment, so I'll switch to something you said that made my ears perk, regarding your husband having just been placed on BiPAP. The words... "congestive heart failure."

What is the full name of your husband's machine, as written on the top of the machine? What I'm hoping is that his machine has the letters "ASV" or "SV" at the end of the name. And not the letters S/T.