Hello.. I have a few questions...

[Geosnorus]

Hello everyone I am new here. I have been struggling with this whole CPAP thing for 6 months or so. Now that I have gotten a glimmer of what the positive benefits can and will be from CPAP, I see just how this condition has negatively affected my life.

I wish I could say I was one of those people who had a complete turn around in their lives from the first night
but it is far from the reality. Basically my apnea is destroying my quality of life in every aspect. Besides working full time, I am a full time student and father of four.

I average about 3-4 hours a night with the occasional night of complete failure and the very rare (maybe 8 times total) night of complete success.

I don't know if the 3-4 hours is simply not enough or if maybe I am somehow not using it properly but lately I have been as exhausted as I can remember. Yesterday I took a nap after I got to work before I started for the day, followed by a 40 minute nap at lunch and another 40 minute nap before school. It was the all time low for me. I can barely function (somehow I do though).

I seem to be noticing with the little bit of therapy I get that the bad days are more pronounced than they were before.

I've gone through every range of emotion there is and I'm tired of being mad at the sleep lab people even though as far as helping you after the sleep study they truly do suck! (I'm sure there are great ones out there)

The little bit of reading through these forums has opened my eyes to the fact that if I want this to work and my life to improve I will need to rely on myself and the wisdom of people like you who have been and are going through this dreadful condition.

I've noticed that pretty much everyone on here uses software associated with their CPAP machine.From what I see my machine is not compatible for a data card. I would appreciate any feedback on my machine that could be offered.
Can I get good results without the software?

Also does anyone have any opinions about the mask I'm using?

Also I am wondering if maybe the air is leaking out of my mouth at night and that is why i am feeling so bad, if so, what is the deal with tape? Do people really tape their mouths shut?

Well thanks for reading this i really just wanted to break the ice and let you all know that I am done with feeling sorry for myself and I am going to be a success story just like the other people on here.

Any tips are appreciated...

-GEO

[cflame1]

Without the software you have to go by how you feel... or continue to have sleep studies.

Yes some people tape, some people also use full face masks (FFM). If your jaw drops or your lips open at night, you're losing the benefit of the air that you've been getting.

[BleepingBeauty]

Hello everyone I am new here. I have been struggling with this whole CPAP thing for 6 months or so. Now that I have gotten a glimmer of what the positive benefits can and will be from CPAP, I see just how this condition has negatively affected my life.

I wish I could say I was one of those people who had a complete turn around in their lives from the first night
but it is far from the reality. Basically my apnea is destroying my quality of life in every aspect. Besides working full time, I am a full time student and father of four.

I average about 3-4 hours a night with the occasional night of complete failure and the very rare (maybe 8 times total) night of complete success.

I don't know if the 3-4 hours is simply not enough or if maybe I am somehow not using it properly but lately I have been as exhausted as I can remember. Yesterday I took a nap after I got to work before I started for the day, followed by a 40 minute nap at lunch and another 40 minute nap before school. It was the all time low for me. I can barely function (somehow I do though).

I seem to be noticing with the little bit of therapy I get that the bad days are more pronounced than they were before.

I've gone through every range of emotion there is and I'm tired of being mad at the sleep lab people even though as far as helping you after the sleep study they truly do suck! (I'm sure there are great ones out there)

The little bit of reading through these forums has opened my eyes to the fact that if I want this to work and my life to improve I will need to rely on myself and the wisdom of people like you who have been and are going through this dreadful condition.

I've noticed that pretty much everyone on here uses software associated with their CPAP machine.From what I see my machine is not compatible for a data card. I would appreciate any feedback on my machine that could be offered.
Can I get good results without the software?

Also does anyone have any opinions about the mask I'm using?

Also I am wondering if maybe the air is leaking out of my mouth at night and that is why i am feeling so bad, if so, what is the deal with tape? Do people really tape their mouths shut?

Well thanks for reading this i really just wanted to break the ice and let you all know that I am done with feeling sorry for myself and I am going to be a success story just like the other people on here.

Any tips are appreciated...

-GEO

Hi, Geo, and welcome to the forum.

Unfortunately, the machine you have only reports compliance data (i.e., how many hours you use it). You can't get info like AHI and leak rates with it. As you've had the machine for six months now, you won't be able to exchange it for a machine that WILL give you the important data, so you'll have to purchase a new machine on your own if you want to upgrade to a data-capable machine.

Get a copy of your prescription from your doctor or sleep center, as you'll need it to purchase a machine from a medical supplier (such as our host, cpap.com, or their sister site, cpapauction.com). The other option you have is to search a site like CraigsList, where machines are often up for sale and no prescription is required. (You just have to be careful that the seller is being truthful about the machine being sold.)

Yes, you can get good results with therapy, even if you don't have the software or a card reader. But you need at least the basic data from the machine (AHI and leak rate) in order to know what needs to be changed to make your therapy effective.

If you suspect you're mouth-breathing with your nasal mask, consider getting a full-face mask, instead. The other option, if you prefer to keep using the nasal pillows, is to either tape your mouth closed, use Poligrip between your lips to achieve the same result, or try a chinstrap (which can help but often isn't effective enough).

You're on your way, now that you've found this forum. Start educating yourself here. Read the CPAP Wiki and the thread near the top of the page called "Where a CPAP Newbie Should Start." Use the search function. Education is key, and it's all here for you.

Welcome aboard. You're finally in the right place.

[JohnBFisher]

... I've noticed that pretty much everyone on here uses software associated with their CPAP machine.From what I see my machine is not compatible for a data card. I would appreciate any feedback on my machine that could be offered. Can I get good results without the software?

Also does anyone have any opinions about the mask I'm using?

Also I am wondering if maybe the air is leaking out of my mouth at night and that is why i am feeling so bad, if so, what is the deal with tape? Do people really tape their mouths shut? ...

Think of the software and the data capable units as a windsock. It's not as accurate as the sleep study. But it really does a pretty good job. Unless I ask my wife, I have NO clue if I had lots of leaks while asleep. Of course, once I ask her, then she tells me that I often sound like a ten gallon tea kettle. Not good. That means the machine can not effectively help me avoid an apnea.

But with the software, I can SEE that when I have lots of leaks and I feel horrible the next day ... well, perhaps they are related. It's not a sleep study. But it certainly does not require a rocket scientist to figure out they are connected.

Just like with a windsock, it lets me know what resistance I face, how strong and how I need to adjust.

Masks are very individual things. What works for me may be horrible for you. What works for you may simply not work for me. Depends on our facial structure. Depends on pressures. Depends on the type of therapy we use. Is it working for you. I dunno. Check on leaks. Oh, wait. That requires the data ...

Do, people really tape ??... Some people do. NO WAY will I do that. I use a full face mask instead. And it can be VERY difficult to get it to work correctly. But when it works well, I do well.

As you can see, you will need to take charge of your own therapy. The medical system REALLY does not get it. This is not really any different than the situation diabetics faced many years ago. They demanded tools to help measure their blood glucose levels. They are also not very accurate (something like plus or minus 10%). But they are good enough to see what way the wind is blowing and how strongly. And it makes a huge difference for diabetics.

The same should happen with xPAP machines. You need to monitor your therapy so YOU can sleep. Your doctor is not as invested in this as you are. Your DME likewise really does not care. Nor does your insurance company. You need it to help you feel better.

[Geosnorus]

Thanks for the words, I am going to be calling the sleep study center and my insurance company
see what I can do about getting this rectified.

[araminta]

I just want to add that in the beginning i tried to use the nasal pillows but hated them.

So I strongly recommend that you try out different kinds. I personally adjusted better to a nasal mask. And now, I can be comfortable with pillows as well. But it's a slow process of adjustment.

Keep at it! And let us know how it goes.

[kteague]

If gettting another machine is not something that can happen right away, you could ask your doctor to order a two week loaner of an autopap to check if your pressure needs adjusting and how your leaks look. If you do go that route, ask the doc if he will order it set to start just a couple numbers below your titrated pressure. Often they just leave them wide open with a pressure range of 4-20, but since you already know you need more than 4, why put yourself thru feeling like you're suffocating? With the data from this loaner period your current machine could be set to a more therapeutic pressure.

What is your current pressure setting? Can you pinpoint what the sensations are that cause you to get so little sleep? Are you able to sleep without the mask? Do you have difficulty going to sleep or staying asleep? Getting very specific can sometimes help with troubleshooting.

Best wishes as you push forward, and I do mean PUSH if you find you are not getting prompt attention to your needs. Best wishes.

Kathy

[Geosnorus]

Great news!

I went and saw my regular doctor today and he is referring me to new sleep center where I will get a
re-evaluation by an MD and hopefully new equipment.

I will be dong research in here to see what I should be pushing for.

Any suggestions?

[pdean44]

Great news!

I went and saw my regular doctor today and he is referring me to new sleep center where I will get a
re-evaluation by an MD and hopefully new equipment.

I will be dong research in here to see what I should be pushing for.

Any suggestions?

Thats great good luck!

[Lila919]

I am most concerned about the 3-4 hours of sleep per night - are you setting aside 8+/- hours for sleep and all that you can sleep is 3-4? Or is your schedule so tight that you only have 3-4 hours available for sleep? If it is the first, then you are on the right track to pursue another sleep study and better equipment. If it is your schedule, then additional information and technology is not the answer - you need more time to sleep.

[JohnBFisher]

... I went and saw my regular doctor today and he is referring me to new sleep center where I will get a
re-evaluation by an MD and hopefully new equipment. ...

Good news, indeed!

... I will be doing research in here to see what I should be pushing for. ... Any suggestions? ...

Well, it depends on your issues. If you need CPAP, I would probably ask for a Auto Titrating CPAP. These allow the machine to change the pressure to meet changing levels of obstruction. It uses less pressure if you don't need as much.

However, if you have lots of trouble breathing out durin the sleep study, they may move you to a BiLevel machine. Then, if you don't have problems with central sleep apneas, you may also want to request a Auto Titrating BiLevel machine.

If you have lots of issues with central sleep apneas (not very likely) you would want to ask about a Adaptive Servo Ventilation (ASV) unit.

For the Auto Titrating CPAP units, two very popular units are the ResMed S9 unit and the Respironics PR System One unit. The IntelliPAP unit also gets high marks.

For the Auto Titrating BiLevel units, two very popular units are the ResMed VPAP Auto 25 and the Respironics PR System One REMstar BiPAP Auto. Again the IntelliPAP BiLevel Auto gets good comments here.

In all of these units, be sure it can provide the detailed data about your therapy. This helps you figure out what you need and how things change over time. It allows you to quickly and easily adjust if you have problems with leaks. It allows you to see if you suddenly have more apnea events. Otherwise, it is rather like trying to drive a car without any instruments. You can do it. You just need to be ready to have lots of speeding tickets for not driving correctly. In other words, without the data, you pay the price.

[rested gal]

Welcome to the board, Geosnorus.

When you start considering machines, the ones listed in blue at the link below can give you useful data. The ones listed in red cannot.

My list of machines that record "full data" (AHI and leak info) and those that don't -- updated through March 2010:
viewtopic.php?p=307168#p307168

DME might not understand what "Full data" is.
viewtopic.php?p=344265#p344265

About taping -- I've been using tape over my mouth for six years. I do it so I can wear a nasal pillows mask that is far more comfortable for me than any Full Face mask I've tried (and I've tried almost all of them.) That said, there are many people who can sleep fine wearing a Full Face mask. I can't.

Here are a ton of discussions about taping and other ways to control mouth air leaks if not using a FF mask.

LINKS to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

[Geosnorus]

Update, met with my new sleep DR. and he spent 30 minutes going over my previous studies. Although it
seems unlikely that my insurance company will be buying me a data capable machine any time soon since its
been over six months that I got suck with this crappy one, the DR. is setting me up with a loaner autopap
machine for a few weeks to see how efficient things currently are.

Since the day I introduced myself to you all I have wore my mask all night every night except one!. I think coming on
here helped me to "own" it finally after more than six months of half hearting it.

I am feeling much better now and I'm even starting to go without naps!

Thanks to you who responded to me and I will be coming back..

-Geo

[rested gal]

Wow, Geo! Wow about everything you wrote -- all the way from what your new sleep doctor is doing, to how you're using your machine so consistently now and how you're feeling.... wow, wow!!

Good job you're doing at getting serious about your therapy!

I will be coming back..

-Geo

Do, please. Do keep us posted about how it goes.

[pdean44]

I am new here under one month myself. It is gratifying to hear that you are turning things around for yourself. I am one of those persistent types of folks that will keep after something till i get it to work right. Sounds like you are doing just that and once you get this nailed I do believe your life will turn around like night and day. I find myself not as tired as i used to be during the day. I could not make it through my work day without a noon time lunch nap. I woke up wondering how i could survive the day. I feel a bit more peppy in the morning. I am not all the way there yet. But i will keep trying till I do get it right. I was hoping for an over night miracle. I was not one of those types but i will say what i have now in an improvement over where I was. I hope to hear more from you as you progress. I hope you find the long restful nights we all crave soon.

Good luck!