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New to CPAP, I think Im better off without it
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herbm Offline

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Machine: ResMed AutoSet S9
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Other Comments: Backup Mask: Innomed Hybrid FFM -- Oral+Nasal Pillows

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Location: Austin, TX

Post: #11
RE: New to CPAP, I think Im better off without it
I am not really thrilled by the idea of using decongestants and such either.

But to put it in perspective here are few points:

1) My Sleep Doc who is also a cardiologist, said, "Do what you have to do to get the rest you need, just don't exceed the recommendations on the container." My other sleep doc said the Flonase is pretty much not a problem.

2) Once I got my nose clear enough for the CPAP nasal pillows to work, that has been KEEPING my nasal passage open enough that I don't need the medicines NOR even need to use the nasal irrigation.

3) Isotonic saline irrigation is about as "natural" as you can get and would not be something you would ingest so even if you use it to flush it's not like consuming chemicals.


IF you can use a nasal pillow mask you will likely be happiest, but that requires two things that aren't possible for everyone:

1) Breath through your nose

2) Keep you mouth close to avoid leaks (even with strap, tape etc.)

The difference between one of the light weight nasal pillow masks and an FFM requiring very careful or tight strapping is quite huge.

Sweet Dreams,

HerbM
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)

"We can all breathe together or we will all suffocate alone."
05-23-2014 08:25 AM
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Marnid2014 Offline

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Posts: 187
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Machine: ResMed S9 Elite
Mask Type: Nasal pillows
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Post: #12
RE: New to CPAP, I think Im better off without it
PLEASE PLEASE PLEASE, take the advice and get a data capable machine. Trust me, you will be and feel like you are in control of your situation, without that knowledge, you feel helpless, at least I did until I realized that I had that data capable machine and was able to find out that what the sleep test had shown was actually wrong for me. I needed MUCH less pressure than he prescribed as well as found out that my mask was leaking like crazy and I did not know it, I thought all was well, and was not getting the therapy I needed.

This site was a God send to me and many others, you might consider a full face mask of another type. Your DME will have to give you another mask to try, you can go through a bunch till you find the one you like best. I ended up with a nasal pillow in the end and used a chin strap and actually taped my mouth (loosely) to train myself not to breath through it. Saline, is very good, what I do is to take the saline and water, put into the palm of my hand and snort away, it works and really helps get rid of the congestion, and no side effects. I know that Sleep Weaver has a full face mask that is made of cloth, you might try that one, there is no plastic, it might or might not work for you, but it beats the hard plastic ones IMO.

Hang in there, get a data capable machine and stay on this forum and soon you will be handing out advice, it just takes a while to get in the groove of c-pap. None of us like it, but the benefits sure outweigh the alternative which is not good.
05-23-2014 02:02 PM
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glfredrick Offline

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Post: #13
RE: New to CPAP, I think Im better off without it
(05-22-2014 09:41 PM)jocolemann Wrote:  Thanks everyone for the suggestions, I just needed a reality check, I'm just cranky due to my newly acquired sleep depraved status.
I think I'm gonna have to go with the full face mask, I don't really like becoming dependent on chemicals to decongest, will talk to my doctor next week to see what we can do

I went for a FF mask from day one because I KNOW that I am a mouth breather. Most people who snore are.

The first few nights with headgear, hose, etc., are a bit disconcerting. Now, they are a trigger to me to SLEEP!

Once the mask goes on, about the only thing I recognize next, other than rolling over a couple times during the night and having to get the hose out from under the pillow (can do it in my sleep these days) is hearing the alarm go off at 4 am for work. I'm in over 8 years now and I can't imagine sleeping without the machine.
05-23-2014 02:20 PM
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stolzy Offline

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Post: #14
Angry RE: New to CPAP, I think Im better off without it
I have trouble with my bipap as it leaves me with a sore chest and I cannot breath so I end up taking meds to help me breath I tried to keep the settings as low as possible but still have problems now I just use it when I watch tv just for a few hrs anymore the doctors do not know why it is doing this
05-23-2014 05:01 PM
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bwexler Offline

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Machine: PRS 1 BiPAP autoSV Advanced, with Heated Tube humidifier
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Post: #15
RE: New to CPAP, I think Im better off without it
jocolemann I think you need to contact the DME where you got your brick ASAP and trade it for a DS560TS aAuto CPAP machine with heated tube humidifier and full data capability. Anything less will leave you wishing /paying later.
With that machine and a recording oximeter you practically have your own sleep lab. You can monitor your own progress and no one except your wife cares more about your health than you.
You will also need to find a mask that works for you. I have tried a dozen masks and some have seemed great for a while and then not so much. After three and a half years I am still looking for that perfect mask, but I use my machine EVERY night for 7 or 8 hours.

You also need to get a complete detailed copy of your sleep study. You can then share some details here and get some very good advice. There are lots of folks here like me, willing to help and then some who are real experts.
05-23-2014 06:12 PM
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trish6hundred Offline

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Post: #16
RE: New to CPAP, I think Im better off without it
(05-23-2014 05:01 PM)stolzy Wrote:  I have trouble with my bipap as it leaves me with a sore chest and I cannot breath so I end up taking meds to help me breath I tried to keep the settings as low as possible but still have problems now I just use it when I watch tv just for a few hrs anymore the doctors do not know why it is doing this
Hi stolzy,
WELCOME! to the forum.!
I'm sorry you are having a rough time with your BiPAP machine but don't give up.
Hang in there and someone will be along with helpful ideas , soon.
Best of luck to you.

trish6hundred
05-23-2014 06:36 PM
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Moriarty Offline

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Post: #17
RE: New to CPAP, I think Im better off without it
(05-22-2014 09:41 PM)jocolemann Wrote:  ...I think I'm gonna have to go with the full face mask, ...

I think that's a great idea jocoleman....

I started with a full face type mask (a hybrid actually) because I was a mouth breather.

After a couple of months I noticed that I could breathe through my nose since the pressure had opened up my nasal passages over the time.

I now use a nasal pillows type mask with great success.

I hope it gets better for you over time.

Cheers

David
05-24-2014 05:18 AM
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herbm Offline

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Posts: 852
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Machine: ResMed AutoSet S9
Mask Type: Oral
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
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CPAP Pressure: 11-16
CPAP Software: ResScan SleepyHead

Other Comments: Backup Mask: Innomed Hybrid FFM -- Oral+Nasal Pillows

Sex: Male
Location: Austin, TX

Post: #18
RE: New to CPAP, I think Im better off without it
Currently, I using almost nothing for congestion despite starting CPAP about 4 months ago with the absolute belief that mouth breathing and a mask covering my mouth would be my only option.

Occasionally, when first retiring, my nose feels a LITTLE restricted; I have found that purposely routing air from nose back out my mouth (free flowing) for a few seconds -- just letting it whistle -- opens my passages.

For me it requires significant effort to open both nose and mouth at the same time -- this is actually a lucky feature for anyone using a nasal mask.

One issue with CPAP helping congestion: It isn't going to work with a FFM unless you (can) keep your mouth closed.

There needs to be something to force the air through the nose and not "around" through the mouth.

Sweet Dreams,

HerbM
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)

"We can all breathe together or we will all suffocate alone."
05-24-2014 08:55 AM
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Visitor Offline

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Post: #19
RE: New to CPAP, I think Im better off without it
So would you think it might be better to start with nasal pillows right away if you happen to have congestion? (And ensure your mouth stays closed with straps or something like it)?
05-24-2014 09:03 AM
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ShelaghDB Offline

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Post: #20
RE: New to CPAP, I think Im better off without it
jocolemann

It sounds to me as if you are experiencing what I did. Im new to this as well but now am very comfortable with it.

I too am a mouth breather so they put me automatically on a FF mask. It was great in that it didnt leak like most do but I just ended up opening my mouth a bit while sleeping and the mouth becomes so dry when you have a mask blowing air into it that 2 hours after going to sleep Id wake up really uncomfortable with a mouth that felt stuffed with cotton.
It was so dry that it wasn't as if I could just close my mouth, go back to sleep and it would solve itself but I would have to get up, fully wake up, drink some water, wait about 15 minutes then go back to sleep but by then, sometimes I was too awake to do so. I will say though that i never experienced any negative thoughts on it nor did I get claustrophobia.

So, I tried a nasal mask......WOW, enter the negative throughs AND claustrophobia............but i got past that after 2 nights and now I would never use a FF mask again.

I was surprised to get those thoughts you speak of after having slept with the FF without them but its very different for with the nasal mask, IF you open up your mouth even a teeny weeny bit, it becomes very confusing and immediately you get claustrophobic and want to rip the mask of your head.
And your cheeks get puffy with air...LOL Its the weirdest sensation but you WILL get past it as i did.

I started to worry. I thought, what if while i am asleep this happens? Will I stop breathing and drop dead? Or will I not be able to get enough air if my nostrils became clogged, and again, drop dead? I was dropping dead a lot in those scenarios I may add and i am not the sort of person that would be described as neurotic but I certainly felt I was at first using the nasal mask.

Knowing how bad the FF mask was and that it was not an option, knowing I really had to make this work, whereas you don't, you think you still have another option so you may not even try to make the nasal mask work.......forced me to get used to it.

The first thing I found very important was to put the ramp time until 45 minutes and I watched TV. I didn't go to sleep right away as i wanted to relax and get used to it which I did, but only because I did it like that.
When I put it on without a ramp time, it seemed too powerful and overwhelming, which led to all those dropping dead scenarios. ;-)

The first night I ended up falling asleep with it on the ramp time and I slept right through the night without any problem.
The second night I did the same but by the 3rd or 4th I set the ramp time for only 5 minutes. Just enough time to put my mask on properly, lay down fiddle with the channels to get the one i wanted and to then just lay back so by the time it started up with more pressure, I had stopped moving around and it was fine.

I will say that by now i can turn it on without any ramp time and am fine. Once you do get used to it it becomes very normal to have it on and you are then past the claustrophobia and dropping dead thoughts so you are relaxed and you end up just breathing normally.

One worry I did have was what would happen if in my sleep I became clogged up? Would I suffocate........leading to more dropping dead thoughts LOL

But i am here to tell you that in the month I have been doing this now, I sleep perfectly ever night. However, on 2 occasions, I have awakened due to the mask being in my hand and no longer on my face and what woke me was the sound of the wind of it hitting my hand........so I am guessing in my sleep I might have become a bit stuffed up and without being aware of it, being as asleep as one can be, I managed to somehow just unhook my mask from the lower bottom left hook and slid it off my face.........once I woke up, I blew my nose as I do keep Kleenex beside the bed and then i just put back on the mask without the ramp and went back to sleep.

One other time I woke up to find the nasal mask over my mouth but not my nose LOL
I guess i had pulled it down in my sleep but I was breathing out of my nose without my mouth being open so, the point is, you will not suffocate or anything of that nature but if you do get quite stuffed up you will just unconsciously remove it from your face. I was amazed at how well one removes it when asleep though. You don't rip it off as I would have expected but neatly undo the clip---perhaps i could not do it that night and pulled it down over my mouth instead..........but wait, no, I could not have stretched it that far so on second thought, I probably did unhook it and instead of taking it off my head, with one unhooked its easy to slide down over your mouth.


I hope that helps. Don't let it worry you when I say I believe being stuffed up is why i took the mask off for I think its great that one does do that in their sleep so well.........

But you just have to relax and get used to it and once relaxed, hopefully your mouth will close on its own and you naturally just breathe though the nose...
(This post was last modified: 05-24-2014 10:42 AM by ShelaghDB.)
05-24-2014 10:40 AM
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