Starting out with a few questions.

[Breathing]

Hello. I was glad to see this forum. I am wondering if there are people who have a very successful initial CPAP sleep study, but then have trouble with their home CPAP?
After several decades of feeling exhausted all the time, and ruling out thyroid problems, and anemia and half a dozen other disorders/diseases, I had my sleep study two weeks ago. Among other things, I came out with a AHI of 74%. In 360-some minutes of "sleep" I had 511 apneic/hypopneic episodes. Well, THAT explained feeling sleepy all the time; needing several alarm clocks and lights on timers and a dozen cups of coffee to get myself to a place where I could even begin to function in the morning. I was very surprised at this because (1) I don't snore, (2) I am overweight, but not terribly so, and my extra weight is not in my face/neck (3) I have always, or at least for as long as I can remember - maybe back to age five or so, had trouble getting up in the morning.
I just attributed my feeling tired all the time to not being a morning person, or working too much, or having a bad schedule. In the past couple of years, I have changed my schedule around quite a bit, but still felt completely exhausted all the time. So, the terrible results on the sleep study should not have been such a surprise, but they were. Wow! I have not failed a test so magnificently before!
So the next week I went in for another sleep study; this one with CPAP. I had heard all of the terrible things about how unbearable, uncomfortable, maddening, etc. the gadgets would be, but the nose mask seemed to fit perfectly, and after wearing it for five minutes or so watching TV, I did not really notice the pressure. I slept through the night, and when I woke up, I felt awake! I have never had that sensation before. it was great. turns out that it required 15 cm H20 pressure to normalize my breathing. Another big surprise!
I am going tomorrow to get my CPAP machine and I can't wait! From what I can glean from these numbers, it seems that about 1/4 of the time that I am asleep, I am actually resting; 3/4 of the time, I am waking up or de-saturating or both. so if I spend 8 hours "asleep" I am really only getting ~2 hours of sleep. Is that right? That does not seem to be allowing much time for rest.
So my questions are (1) is there anything I should be asking the RT tomorow about equipment? Are their devices that everybody agrees are marketed, but are just junk? and my big question is, have the people who hate their equipment or find it impossible to use had successful sleep studies with the CPAP and then found they could not do it at home, or was it miserable from the start? I had such a great night in the sleep lab, despite being claustraphobic, that I am just itching for the CPAP machine at home so I can sleep at home. should I expect to have a harder time with it at home than I did in the sleep lab? and if so, are their any tips I should know before I start?
I'm really glad here is a group like this. I am sure I will have questions as I learn more.

[dtsm]

Warm greetings.

Most folks will recommend that you get a unit that is has full data capabilities and is auto-adjusting. There are two major brands, ResMed and Respironics [there are other makers but these are the two more popular ones] ResMed's top of the line is the S9 Auto; not sure the model for comparable Respironics [others will help with this I'm sure].

If you go with ResMed, insist on this model and then download the software to monitor your results, to fine-tune your settings, etc.

Good luck!

[Breathing]

Thanks. I just saw for the first time, someone's post with a graphic of their sleep. Do you have to plug the machine into your computer to get this, or can you put a flash drive into the CPAP machine or....? I think at the moment, I will have limited options for machines, as my insurance will cover one place. Once I get the thing and start using it, I might have some energy to spend time online shopping for different/better devices if need be. I did not know you could see what the machine was doing through the night. Is that standard with all of them?

[GregCavalier]

I'm new to this forum, but your question strikes a chord. I usually follow apneaboard.com, but cpaptalk looks like a bigger forum with more feedback.

I am always surprised at how many people mention that they use CPAP when I tell them that I have sleep apnea. Until I started on CPAP, I had no clue that the numbers were that large. But, I seldom meet anyone who actually tolerates, much less likes CPAP. Well, I take that back, I actually know one person (a trucker) who loves his CPAP because of the difference in how he feels in the morning. For the rest of us, I think, we accept the reality of needing it and tolerate it as best we can.

If I had advice for a newbie, it would be to have patience. And to not try to rush it. For me, I found that it was best to ease into it so that I didn't get frustrated. My DME resp. tech. suggested I wear the mask and watch TV for an hour the first day and NOT try to sleep with it until I got comfortable with it while awake. My mask is a nasal pillow, and I found that it requires a little more time adjusting. I don't think you can leave it up to the DME. They give you one mask. They might swap it out if you have compliance issues, or they may not. But the internet is empowering. Forums like this help alot. Read through them and you'll realize that other people have experienced the same problems. And knowing that you can buy any mask online is a great help. I had to go through 4 or 5 different styles before I found a couple that worked for me. Right now I'm using the 3B Willow. I've also used the Swift FX, and I recommend both. If you are not pro-active, if you just accept what your DME vendor tells you, you may never feel comfortable. And then you end up where many do, abandoning CPAP altogether. I think the number of people diagnosed with sleep apnea who start and stop CPAP is probably greater than those who remain on it, and I think most of that probably has to do with never finding a mask that they are comfortable with. That way my problem. I did my sleep study with a traditional nasal mask. And that is the only mask the DME would give me. I hated it. And, had I not gone online and searched, my CPAP machine would still be sitting in a drawer.

So, my advice to a newbie consists of two recommendations: (1) don't rush it. Ease into using CPAP. Start for an hour while awake, then try a nap. When you finally start to feel comfortable with the mask and sensation of pressure, then try sleeping with it. If you wake up, remove the mask and try again the next day. Eventually you'll work up to a full nights sleep. And you'll start to feel alot more energy, that comes from actually sleeping while you're sleeping! And (2) try different masks. See if your DME will work with you and let you try other models. And, if not, don't put your health at the mercy of insurance reimbursement. Buy a few different ones and see which one works for you. What works well for one person may not work for another. Everyone is different. Good luck!

[RandyJ]

Have a look at this thread: viewtopic/t77374/Hi-AllNewbie-here.html

[Pugsy]

Welcome to the forum.

One of our forum members has a blog with some extremely useful information. I suggest you start here so you learn about full data machines (so you can use software and I will explain that in a minute)
http://maskarrayed.wordpress.com/ While you are there click on the tab for "what to know before you meet your DME.

To get the reports you mentioned from the cpap machines...there is a little SD card in the back of these machines and the cpap machine writes the data to that SD card and you remove it and slip it into the SD slot on your computer. Then you just use the software that works with the full data machines (be sure that you understand that full data is more than hours of use and some machines use a SD card but it only gathers how many hours you use the machine so your insurance knows you aren't wasting their money..we call it compliance data. If your computer doesn't have a SD slot that is not a huge problem. SD card reader/adapters are easily found for about $10.

You are going to feel pretty overwhelmed at first with all this material being tossed at you. Main thing right now...learn about full data machines..which models offer it and which models don't. Janknitz blog explains it very nicely.

It is very likely that you will have a positive experience at home using the equipment pretty quickly since you did so well at the sleep study. But not a certainty..don't panic if you have issues though.
Some people slap the mask on first night and never have a problem and take to this therapy like a duck to water. Other people have lots of problems of various sorts to have to muddle through.
Let's hope you are one of those lucky people but if you have a few problems I can pretty much guarantee you that someone here has had the same problem and worked through it and will help you work through it.

[GregCavalier]

Wow, I thought I was the norm. I had a terrible experience adjusting. I thought that was true for everyone. I tried really hard. After about 6 weeks I gave up, threw the mask and machine in a drawer. Then my doctor lectured me about the condition and told me I was increasing my odds of a stroke and heart attack. So, I tried it again. I had two problems. First, it struck me as a huge annoyance to be tethered to a tube at night. And second, the feeling of positive pressure made me feel as if I was suffocating and could not exhale freely. It took alot of badgering from my doctor and my wife, to get me to try again for the third time. And this time, I spoke with the resp. tech who was really good. She is the one who told me NOT to go to sleep with it until I felt comfortable wearing it while awake for a couple of hours. And that was the best advice I had been given. it worked.

But it was a struggle. Once I made the breakthrough and made it through the night without being woken up, it all became easier. And then I set out to find a mask that I liked and could tolerate, which is an adventure of another kind. But as they mentioned, some people just put the mask on for the first time and have no difficulty with it. For me, it was a nightmare.

[Julie]

Hi - I disagree that Cpap is at best tolerated by the majority, and know many of us who can't imagine sleeping without it and don't want to... you can get used to it very quickly, but if you don't, that's ok too because it's usually just a matter of either trying a few different masks until you find the right one in the right size for you (generally the source of most problems), and choosing the appropriate machine... there are certainly many other issues you can run into, but there's no reason to assume they'll come up, or if they do everyone here will try to help...

The first thing I suggest is that you register as a member, then click on User Control Panel below the Cpap logo, go to Profile and fill in your equipment (once you have it of course) with the full name and model #'s, etc., text please, not icons... and then all of it will appear under all of your posts so we can have a good start to advising you.

Auto machines can be run as plain Cpaps, but not the other way around, so getting an Auto is the first step... your MD will need to write a script (with your prescribed pressure settings) for an auto, and don't let the DMEs tell they cost more - the code for the insurance companies is the same as for Cpap so they won't even know the difference and certainly won't care... As far as the models go, the S9 Autoset does have all the features you could possibly want, but many other machines will do the job just as well and give you the data you need (there's a card in the machines that you then use in a card reader, or else with something (sorry I don't actually use one myself at the moment, tho' have) that goes directly to the computer on which you'll have input the program depending on which machine you use, and then you can check all the relevant stuff each day - whatever you do don't let the DMEs give you some older model (i.e. S8 'elite' or one that has Plus in the name - they will try it every time so make sure you insist on the one you want).

Do go to Cpap.com's site to get comprehensive information on the different machines and masks and go to the lightbulb at the top of the page and start reading the links... lots of information! And if you think you might be a mouth breather once sleeping, see if you can be fitted with a good full face mask (only actually covers your mouth along with your nose) so you don't lose the air that way instead of having it go down your airway (plus they're good to have when you get a cold).

Good luck!

[GregCavalier]

Julie, Yes you are right I suppose. Some adjust easily. My point was only that, for me, it was not pleasant. It took a stubborn wife and equally stubborn doctor to keep forcing me to read articles about the health hazard of not using CPAP. And only that constant pushing made be pull the machine and mask out of my drawer, and resolve to make it work. And again, once I made it past that first night (a week of trying) then it all became easier. And I don't enjoy it or like, but I'm compliant. I do reap the benefits, which is positive reinforcement and keep me compliant, and that is the sense of feeling rested during the day. Had forgotten what that felt with. life is so much better with sleep!

[Newbie Woman]

Read as much as you can before you talk to your DME.

I was a person who hated the idea of needing CPAP and I took to it immediately. I woke up the first morning feeling so much better. Since then I've had problems, but thanks to this board, I'm usually able to sort them out. As a for instance, this past week I've been sleeping poorly and removing my mask in my sleep. If I can't cure it on my own, I'll post and get answers. Someone here will know the answer.