I went from apap to cpap to apap now to bipap??

[elena88]

I'm a 'noob' to cpap but I will say this. I've been trying for a couple of months to get good sleep on the machine and I have two very good machines (S9 Auto and "M series BiPap Auto") and I found that the real problem for me was the mask with leaks and discomfort. I think it's so very important to find a mask that fits well, does not leak and is comfortable. I found and love the ResMed Soft Gel as it's incredibly comfortable and does not leak like my other masks. As far as I know, higher pressures on a pillow will cause more leaks. Maybe see if you can try/buy a nasal mask and go from there.

I believe the leaks are the very first and most important thing to fix before looking at or trying to change settings otherwise.

Good luck!

Hi Johnny.. thank you so very much for the tip on the resmed soft gel, perhaps tomorrow when I see the doctor, I can try one of those, I am also
looking at that swift fx, and a few others.. but I really love my opus 360..

Hi Elena, just wondering if you've tried a full-face mask. I use the Mirage Quattro and get 0 leaks. It took awhile to get used to it though. I tried other types, taping, etc. Just couldn't make them work. I would have thought the full-face mask would make me feel claustrophobic, but it doesn't. Just the opposite. And you can cough!
Mimi

Thank you mimi! I have tried a couple hybrids and a some full face masks, and ended up with the fitlife, but that leaked too, so I will keep trying..
I realized that each night is different for me, and one night I can handle a straight pressure, and one night I can handle a smaller higher range,
and one night I have to go back to start at five.. It all depends on how my lungs are feeling I guess.. Last night I had to reprogram the machine
three times, and go back to five. I sure didnt want to, but I had to.. I did sleep much better last night, ahi was 1 with a couple obstructives and couple
of centrals.. so NOW I think, I need to go with how I feel EACH AND EVERY NIGHT.. because it varies so much, how much Im coughing or wheezing, or
having trouble.. perhaps thats is what will work for me.. Im just so glad I have an autoset It only takes a couple seconds to change the settings
to my comfort level, and I can do that in the middle of the night, more than once or twice if need be..

[DoriC]

The concern is that changing so often without looking for a solid trend pattern will not give you the data you need to find your proper pressure settings. This must be so confusing for you but you've got a great attitude and you will succeed!

[elena88]

thanks doriC..
Yes, it doesnt appear I will see a pattern if I cant tolerate the straight pressures to go to sleep.. but
every night is SOOOOOOOOOO different for me, so perhaps I can find some constancy in going with how I feel each
night.

so tomorrow, sleep doctor appt in the afternoon! My husband is going to tell her how miserable HIS life has been!

[elena88]

Hi there,

Im back from the doctors office. I have to thank all of you guys for helping me so much with this stuff!

(The doctor freaked when she saw dreamon's chart.. just blew her away)

She kept saying.. 'this is amazing, just amazing!"

thanks for all the help I got to post the graphs, and I copied them and took them to show them to her..

So, she went over everything, loved all the graphs, and my notes.. especially the one that said.. "not a sissy" when I tried cpap at thirteen

After talking to me, and my poor suffering husband who has had to put up with me, and studying all the numbers.. she said..

"Well, because you have RAD (reactive airway disease) and shallow breathing, and you have very long expirations, I think you are not
tolerating this very well, so we should try you on bipap. "

So, first week of september I pick up an auto bipap and take it for a spin for a week!

[johnnyh64]

I hope you can get a data capable bipap. I have the M Series Auto Bipap and it feels great so I think you'll like it. The only problem with that machine is the data card is a larger format smart card and the software will cost you at least One Million Dollars...or $100.00 whichever is less.

[Thomas F.]

Hi Elena,

That's great news that you are going to test a Bipap. I really believe this will be the answer for you. It is so much easier to breathe with. I use a VPAP 25 from Resmed which I already posted to you about prior.

Another possibility to sleep through the night with your current CPAP: Have you tried taking a Lunesta or Ambien with your machine on the higher pressure? For some weeks I've taken Lunesta while getting accustomed to CPAP/Bipap therapy. When I take Lunesta I sleep thru the night - no wake ups -- and very low AHI next morning. If I didn't take Lunesta, I would wake up at least once between 1 and 3am and have a real tough time to fall back to sleep. Why?? My feeling (theory) is my brain would just wake me up because it felt that 3 hours of sleep was enough for me ----- because that is the level of sleep I got for many years with apnea. Lunesta gives me 8 hours uninterrupted sleep a night that will help retrain (reprogram) my brain that a full night of sleep is 8 hours and not 2-3 hours!! Another theory could be that my ever vigilant brain continued to wake me up during REM sleep because it was it's job for years. Who knows for sure if either of these theorys are correct. Nevertheless, to me, taking Lunesta for a period of time to (retrain,relax) the brain is working.

[elena88]

I hope you can get a data capable bipap. I have the M Series Auto Bipap and it feels great so I think you'll like it. The only problem with that machine is the data card is a larger format smart card and the software will cost you at least One Million Dollars...or $100.00 whichever is less.

https://www.cpap.com/cpap-machine/resme ... chine.html


Thank you so much for your wonderful tips and advice, I was totally shocked when the doctor said that was the way we were headed.
The jury is still out on whether I will need one or not, but if I do, I want to be prepared, so I started doing research last night.
This site was down, so I was rather limited, but I came up with what I would want IF and when I need to go that route..
I so appreciate your reply!
elena

Hi Elena,

That's great news that you are going to test a Bipap. I really believe this will be the answer for you. It is so much easier to breathe with. I use a VPAP 25 from Resmed which I already posted to you about prior.

Another possibility to sleep through the night with your current CPAP: Have you tried taking a Lunesta or Ambien with your machine on the higher pressure? For some weeks I've taken Lunesta while getting accustomed to CPAP/Bipap therapy. When I take Lunesta I sleep thru the night - no wake ups -- and very low AHI next morning. If I didn't take Lunesta, I would wake up at least once between 1 and 3am and have a real tough time to fall back to sleep. Why?? My feeling (theory) is my brain would just wake me up because it felt that 3 hours of sleep was enough for me ----- because that is the level of sleep I got for many years with apnea. Lunesta gives me 8 hours uninterrupted sleep a night that will help retrain (reprogram) my brain that a full night of sleep is 8 hours and not 2-3 hours!! Another theory could be that my ever vigilant brain continued to wake me up during REM sleep because it was it's job for years. Who knows for sure if either of these theorys are correct. Nevertheless, to me, taking Lunesta for a period of time to (retrain,relax) the brain is working.

Well, after spending a couple hours on the computer last night, I came up with the same WANT LIST..
it is that remed vpap 25, and I understand I can already use the rescan software I have! Here is the machine...

https://www.cpap.com/cpap-machine/resme ... chine.html

Im really hoping I dont need it because its expensive, and I just bought the s9, but if I do need it, its the one I want.. and if I can start living again, it would be well worth it. I just dont want to spend the rest of my nights in a big struggle with the apap.. However, I told the doctor I tried to "bipap" my apap as much as I could with the epr on three, and dropping the pressure to five to thirteen. Im gonna keep trying that until the end of the month, then I pick up the apap bipap for a week titration.

Thanks for the tips on the sleep aids.. Although I have spent my entire life as far as I can recall (small child) being an insomniac, I have never
taken a sleep aid of any sort till I tried the apap, and the doctor put me on melatonin, and a few other things, nothing worked. I asked about
Ambien, and she said, in my case, it wasnt a good idea, since I am overly sensitive to medications. I saw the movie INCEPTION recently with my husband, and as everyone in the movie kept sticking iv's in their arms and going off to dreamland, he said. "YOU NEED WHAT THEY ARE TAKING!" oh, if only!
I do understand you have to retrain yourself to sleep, and I think I might be able to get that done if its easier to breath..
Maybe I wont feel like that herd of hamsters will be beating up the inside of my lungs all night if I go to the bipap.
THANK YOU SO MUCH FOR YOUR TIPS AND ADVICE.. as there arent as many bipapers as cpapers! I felt like I was back to square one
with the research! Oh NO, I need a NEW machine? We will see, Ill let ya know how it goes!
elena

[echo]

Hi Elena, I'm glad to hear what is probably a very positive evolution in your story! I hope bipap will help, it seems very suited for you given some of your issues.

[elena88]

Hi Elena, I'm glad to hear what is probably a very positive evolution in your story! I hope bipap will help, it seems very suited for you given some of your issues.

Hey there echo! how have your nights been going?

My husband is probably more excited about testing the bipap than I am.. His eyes got as big as moons when the doctor thought she could turn
all this around. Poor guy, he has put up with me for the last months, pretty much being useless.. compared to what I was before.. and he cant wait,
nor can I to get back to being a busy beaver. Gosh, I didnt realize how little you can get done when you dont sleep well. I NOW understand what
everyone else has been going through, I get it.
And some people have been feeling that way for years! OMG! I cant imagine.. well, thank goodness most everyone is hanging in there, and
sticking to it, and feeling so much better because of it.

Im just a weird case I guess, never tired before cpap, epworth sleep scale a big zero.. but NOW I know what you all were talking about! geez!
I cant wait to get back to the "living".. ... this "zombie" stuff aint cuttin it! (although the spoofs on the zombie movies are funny!)

thanks for all your help! elena

[echo]

I'm sleeping pretty well, thanks for asking! The new (medium) comfortgel full is working pretty good but causes my nose to itch all the time! I think there is more condensation in there than my activa, maybe because the vent holes are much smaller?

[elena88]

I'm sleeping pretty well, thanks for asking! The new (medium) comfortgel full is working pretty good but causes my nose to itch all the time! I think there is more condensation in there than my activa, maybe because the vent holes are much smaller?

glad to hear you are sleeping pretty well, thats good news!

So you like your comfort gell.. geez, thats a heck of a name isnt it? OMG>>>>


now, what to do about that itchy nose??? I always wipe my face down with tea tree pads before I got to sleep, or those little facial cleaning
pads you get at trader joe's. Or I use alchohol.. but its itchy cuz of the condensation.. twitchy itchy? could you baby powder your nose or put
antiperspernt on it? Or would that breakdown the mask.. ???

gee, now Im going to be thinking of your poor little twitching nose tonite! (while Im wearing my super cool super fast super sleep Swift FX

So do YOU have a flat leak line? The only thing I have flat right now is my snore line, but you arent supposed to be snoring on apap anyway!

[torontoCPAPguy]

Keep at it.... you have great cause to be proud of your progress as you are being your own advocate instead of a 'sheeple' like most. I'm hoping that the VPAP does the trick for you. Have bumped into many who use Ambien to assist with sleep and I am thinking of asking to give it a try as well. I do often take a mild sedative at bedtime to get me to sleep but find that I am needing more and more of the stuff to get to sleep when I do need it..... there are just some nights where I am wired! And others when I hit the pillow asleep already.

This is not a simple process although it is methodical. And it takes experimentation contrary to what any sleep MD might tell you. There is NO magic bullet or formulat as you have discovered. The entire voyage is one of discover and I have found, as mentioned earlier, that APAP is the way for me, yet oximetry studies I have done over the past week show that my SaO2 falls during the night as I fall deeply asleep and I am thinking that this is causing my body (autonomic nervous system) to holler at me to wake up a bit and breathe deeper to get the SaO2 up... and it does go up and down all night. So I have discovered that I can get my AHI down to 0.0 at times with very few if any events if I set the right pressure range (and it is a moving target from night to night it seems) yet I still do not get as good a night of sleep as I would like as my SaO2 is, I believe, causing arousals through the night and preventing me from maintaining deep sleep or REM sleep. Only a sleep study with EEG is going to tell me the answer. My MD's bless them are co-operative to the max with me and readily admit that they do not have all of the answers based on the data presented. They are frank in stating that they just don't have the time to devote to a single patient to make things as good as they can be. I appreciate that and the fact that they are willing to work along with me.

You are to be congratulated for locking onto this like a pitbull and keeping at it. Congratulations. Keep at it. You will get those numbers down and eventually, as I hope that we all will, get a great night of sleep.

[elena88]

Keep at it.... you have great cause to be proud of your progress as you are being your own advocate instead of a 'sheeple' like most. I'm hoping that the VPAP does the trick for you. Have bumped into many who use Ambien to assist with sleep and I am thinking of asking to give it a try as well. I do often take a mild sedative at bedtime to get me to sleep but find that I am needing more and more of the stuff to get to sleep when I do need it..... there are just some nights where I am wired! And others when I hit the pillow asleep already.

This is not a simple process although it is methodical. And it takes experimentation contrary to what any sleep MD might tell you. There is NO magic bullet or formulat as you have discovered. The entire voyage is one of discover and I have found, as mentioned earlier, that APAP is the way for me, yet oximetry studies I have done over the past week show that my SaO2 falls during the night

You are to be congratulated for locking onto this like a pitbull and keeping at it. Congratulations. Keep at it. You will get those numbers down and eventually, as I hope that we all will, get a great night of sleep.

hi there! I was reading your saga about your SaO2, it was very compelling! Im so glad you caught that! Here you were with the zero point zero
and had no idea THAT was going on! It is so imporant that we all figure this stuff out, you are right! No sheeps or lemmings here!
Im getting a little hopeful about the vpap, Im going to think that THAT is going to do it, maybe a little tweeking, and if I work as hard as I did
with the apap, its gonna do it!
I too, would love to try an ambien sometime.. just for an experiment.. maybe I can cop one off a street corner

Funny thing, you said.. "locking on to this like a pitbull.. ha, that is what my husband calls me!

Okay, you get your O2 situated, and have a good night... thanks for all the support.. advice, and sharing of experiences..

[torontoCPAPguy]

Keep at it regardless of what your MD's say unless they say that it's going to kill you dead and I would take that with a grain of sale too. I think I have taken the decision to go ahead and experiment with minute amounts of oxygen infusion and am ordering the plumbing. I have relisted the big Invacare Mobilare V and am going to try and find a decent price on a smaller and more portable unit that is quieter and can be travelled with. To heck with it. It's only money and this is my life we are speaking of here and it is going to pot in a basket at the moment. albeit slower than pre-XPAP therapy.

Gather all the data you are able to make intelligent decisions and help you to figure things out. With the caring help of your friends on the forum here you will have revelations regularly and this O2 infusion is something that never crossed my mind until just a few days ago and within a day I had purchased a huge Mobilare V oxygen concentrator with its optional regulator kit and humidifier. I am going to use it in the meantime even though it is listed for sale - but am looking for something new and more portable. Since we travel by car, even a slightly lighter unit is portable for us. And we are looking to buy a trailer and that will make it even more portable as it will be screwed down to the floor of the trailer.

The key is, IMHO, continuous learning and pushing, pushing and more pushing. When I went over my graphs and asked about O2 at the GP's today all I got was this dumb look and then a statement that he was not qualified to make any decisions in this regards. Well, who is? Someone else. Sic. I may have ticked him off by the questions. But he is a kindly soul and will refer me for another sleep study or two immediately although there is a wait for them. They are of course free in Ontario when referred by an MD for cause. I love my GP. He works with us 100% plus. I hope that I retire before he does.

Will be posting my O2 reulsts before too long.