New and Wondering

[nanashell]

Hi everyone.
I'm BRAND NEW to the whole CPAP experience......Had my sleep study done in January, and am currently dealing with the ONLY provider my insurance company okayed.
I used a nasal mask at the sleep clinic with not much trouble, but not sure which one.
When the cpap home health care provider basically "tossed" all the masks on the table at her first visit and said, "Which one do you like?" I was a little taken back........I told her "This is all new to me, and I don't KNOW which one I "LIKE"."
I noticed the Swift Mirage Nasal Pillows and was intrigued by them, and asked. She told me her dad LOVED them and swore by them. So I chose those.
My pressure is set at 12, and I seem to have a harder time exhaling than I did with the mask at the sleep clinic. I'm wondering now if I should switch to a mask.
My insurance company would only cover a COLD AIR passover humidifier......they claimed the warmed ones are extra expense for no apparent benefit........does anyone have comment on this??
Like I said, this is all new to me and I think I'm going to like hanging out here with others who are "in the know"! THANKS!

[luvmykatz]

Hi Nanshell--I, too, had my sleep study done in January. I was at first just provided a bottom-line machine and mask and not given any choices. I found this forum and learned a lot. I went back to my provider (doctor's office) and told them I was returning everything because I hadn't been given any choices. I got a different clinician from the first time and she spent a lot of time with me and got me a Remstar C-Flex machine (I didn't get the one with the smart card so I'm going to ask for it when I go back in). The C-flex is a great thing for me--it gives me some relief on exhale. My pressure is 15. (I tried the Swift at the doctor's office initially but found the pressure to be really great compared to a nasal mask. Now that I have c-flex and am more experieced I could probably try again.) I really struggled at first at home on cpap and it is still not ideal but I am doing so much better. I brought home an Activa mask which has a really good seal for me. I am still interested in getting a nasal pillows system (maybe new comfort lite 2) and that will have to come out of my own pocket (cpap.com has much better prices than doctor's office for that). I have a heated humidifier and can't compare to cold because I've never had one. Anyway, there are lots of great people on here who can help you much better than I but I thought you'd like to know you're not alone. Everyone on here has been through the same kinds of experiences and is working out their problems and sharing with each other. Good luck and hang in there.

[Moogy]

Many CPAP users have found that the heated humidifiers really make a big difference. You might need your doctor to prescribe heated humidification in order to get it. If you have other nasal problems, like chronic allergies, your doctor might prefer the heated humidifier. Do you have a family doctor who knows your entire history, or do you have only a sleep doctor who doesn't know your other problems?

Is your nose having problems with drying out?

Mask fit is difficult for some people. Also, if your sleep study is like mine, they started you with lower pressures and moved it up while you were sleeping. So unless you woke up when the pressure was high, you might not have experienced breathing out against 15cm.

I woke up at 15 or 16, and I could see that it was too much for me. (My sister uses a constant 20cm WITHOUT Cflex! I am the wimp of the family...) So I requested and got a Bipap, which gives lower pressure on exhale, a much more significant drop than you get with Cflex... Some insurance companies will not allow a Bipap without a trying a CPAP first. If you continue to have trouble, and if your doctor will agree, your insurance might be willing to upgrade you to an Automatic CPAP, which will run on lower pressure for much of the time, or to a Bipap, which will give you different inhale and exhale pressures. Or even an Auto Bipap, which is the one I got, based on the same problem exhaling that you are having.

I also tried the Swift, and it was ok. After about a week I got an Activa, and the same pressure is much less bothersome. I do have claustrophobia, and I find that neither mask bothers me, unless the pressure is under about 6cm. So I set my ramp to start at 6 cm instead of 4, and that solved the claustrophobia problem for me.

Many insurance companies rent your machine the first month, and then buy it. So find out how long you have to see if this one is working, so you won't get locked into a machine that won't work.

As far as masks go, it seems that MANY of us on this forum have wound up buying extra masks out of our own pockets....

Best wishes for your treatment!

Moogy

[Doovid]

Nanshell, I'm relatively new to all this also (have been using various masks for about 5 weeks). I know that I didn't have a humidifier for the first week and woke up always with dried out mouth and nose, sinuses,etc. I was able to get a heated humidifier and it made a tremendous difference. I can't see not using it now. Will be swapping out my present CPAP machine for a Remstar Pro 2 w/c-flex. The C-flex also makes a big difference in exhaling -- try all the settings!

My doctor isn't very knowledgeable about CPAP equipment and various treatments, however, he is very good at going along with anything that I come up with through my research. He has written prescriptions for anything I've wanted. Unfortunately, my insurance only pays for 1/2 of equipment and only 1 mask every 3 months. I'm already on my 3rd mask!

Research everything you can on this and other sleep apnea user groups and forums. There is a wealth of experience out there. Good luck!!

[Linda3032]

Nana, you didn't really say if you are renting your machine or buying it. I hope you are renting it right now, and can get a better machine at the end of your rental period. Your DME gave you a very basic machine - there are much better ones.

Yes, you need a heated humidifier. Call your doctor and tell him you are all stuffed up and your nose is on the verge of bleeding because it is so dried out and it hurts horribly. Be firm.

If you are renting, let us know and we can lead you to the right direction on machines. I would think you would definitely want a Remstar with cflex - cflex helps you breathe out and is more comfortable than your machine.

Masks are a whole new ballgame. But initially, an Activa might be a good choice - I've never used one but more people like it than not.

If you have to buy anything out of pocket, buy from cpap.com -- they have the best prices. Don't buy any mask, etc through your DME.

Search this forum, read this forum, and post when you have any question - no matter how dumb you might think it is - we've all been newbies.

[nanashell]

It's all so overwhelming!! But you all are very helpful with your suggestions.

First off, I had to wait over 2 weeks for my COLD AIR passover humidifier, because my provider kept saying it was ordered and then it wasn't......and finally told me, "We really only use these on public aid patients". I've got a friend who is on CPAP and has the heated humidifier, but told me DON'T pay out of pocket for heated....it doesn't make a difference. (Although I don't know HOW he'd know if he's never USED cold.)

Trying to use the cpap with NO humidifier was an absolute nightmare for me. Dried out nose, sneezing constantly, etc.
Once I got the humidfier, (and after I got over pneumonia!) I tried again, and found it much more kind to my poor nose.

I'm bouncing back and forth between the small and medium nasal pillows, trying to decide which I like best, and I think the small have won.

I'm going to check into the machines you suggested (yes, my machine IS being rented by the insurance company) and masks too.....I didn't want to feel like I wasn't giving the first ones a chance.

And as for my family doctor, when I TOLD him I would appreciate if he prescribed a HEATED humidifier,(otherwise my insurance wouldn't pay for it), he agreed with insurance company.......that the heated shows NO advantage to the OSA patient. I really don't think he wanted to "tangle" with the insurance company. But I can actually say, my nose is NOT dried out or hurting in the morning.

My insurance deductible is huge, so I'm having to pay for MOST of this myself anyway.......might as well get something that WORKS for me, huh?
I'll be back with more questions, I'm sure. THANKS again to all

[wading thru the muck!]

:

...My insurance deductible is huge, so I'm having to pay for MOST of this myself anyway.......might as well get something that WORKS for me, huh?...

nanashell,

Check out the prices at cpap.com. Many people find that there deductable is more than what all the equipment would cost from cpap.com. You would be amazed at what the local providers charge. When I checked about a year ago, several local providers wanted $2500 for equipment that I could buy for $800 at cpap.com. So you can see that if you have a $500 deductable and a 10% copay, your are paying about the same price. At cpap.com you won't have to wait weeks to get your stuff either. When I ordered mine it was in my hands the next day.

[yardbird]

Regarding the humidifier portion of this...

Anyone who tells you that a heated humidifier is of no additional benefit has not slept with a CPAP machine. They haven't dealt with any of this personally or they wouldn't make (or recite) such a patently ridiculous comment.

I HAD a passive (unheated) humidifier. I live in the northeast. In winter, the air in our homes becomes pretty dry. So now you have dry air being blown across water. What happens? It becomes a very effective SWAMP COOLER!

Ask anyone who lives in a normally dry climate like Arizona or anywhere in the southwestern US what a swamp cooler is. It's air being blown across a damp surface. Why? It cools the air. That's what a swamp cooler is.

I would put very warm (but not HOT) water in my passive humidifier. Within about 2 hours I would be awakened by a VERY cold nose and uncomfortably chilled air being pumped into my mask. The water in my passive humidifier was ice cold. Nice for chilling wine perhaps, but not nice for sleeping. Cold air can't hold as much humidity as warm air either. So for them to say a heated humidifier has no benefit over a passive one is just SO wrong. Heated ones cost more. Your local durable medical equipment supplier probably won't get paid enough to give them the profit margin on a heated one. So they make up this absolute bull**** about them having no benefit over a passive one. And your doctor sounds like he/she was schooled by the DME.

If you're paying out of pocket, find out how MUCH you're paying. You may actually SAVE money by simply buying what you want from cpap.com. You'll need a prescription for the machine only. Everything else you can get without a prescription.

[Linda3032]

Yes, Nana, if you are renting and paying a big copay, you would probably be further ahead buying out of pocket. It is totally rediculous to put people through that.

Get aggressive, Talk to the DME about total out of pocket expenses, Check prices at Cpap.com. You could easily save money.

Take matters into your own hands.

We're here to help.