Very new

Hi all....I am just trying to figure out how to use this site. From what I know and have read I'm going to need all the support I can get. I have just been diagnosed with severe sleep apnea. I go in on the 3rd of March to get my cpap. Don't know much about anything, and a little scared. I have claustaphobia (?sp) and dont look forward to anything on my face. I'm going to spend some time doing some reading from all. What is BBCode?

Hi JoAnn, welcome to the message board. I think (not sure) that "BB" maybe stands for Bulletin Board? Another name for "message board". If so, then BBCode would have something to do with ...something about how posts work...perhaps the buttons for bold text, posting URLs, etc. Dunno. At any rate, I have all 4 of the little white squares UNchecked and posting seems to work fine.

Between now and the 3rd of March when you have the appointment to pick up your equipment, just keep digging through posts on this board. Jot down any hints and advice about masks in particular, since a good mask is a big key to making this treatment comfortable to sleep with.

The Swift mask made by ResMed might be your best bet to not feel claustrophobic - it sits below your nostrils and has nothing up near your eyes, and nothing covering your nose. You might want to call the health care place now to ask them if they have the mask called "Swift" there. Your insurance may have a choice of DME (Durable Medical Equipment) home health care stores to choose from in your area. You don't have to settle for only the store that the sleep clinic or doctor recommended you go to. You might want to do a little walk-in visit to other nearby stores on your insurance companies list - perhaps one of them will have a Swift you could take a look at in advance.

Masks that I'd personally avoid accepting, even though they may look light and small to you and the store employee might be pushing (because the store makes a bigger profit on the cheaper masks) are any of the masks made by Respironics - particularly the Comfort Classic and the Profile Lite. No matter how "ok" they may feel when you first try them on or how much the store person insists "this one fits you well and is one of our most popular", for many people those masks are prone to be leaky and apt to cause a sore on the bridge of the nose. Just my opinion. I think Respironics makes very, very good machines, but not so good masks. Try to get a ResMed mask as your first mask.

Good luck and keep reading, asking questions ...and relaxing. You'll be fine.

Hello JoAnn and welcome.

Don't worry, you are feeling exactly the same as all us at the same stage, and you have come to exactly the right place for help, support and encouragement. I'm a relative novice, only 4 months since I started using the equipment, and I know that information overload can be a problem at first, so take your time and keep asking questions - this forum is full of kind, experienced and thoughtful people who will happily help you.

The buttons at the top of the screen are quite useful. If you use the FAQ button, it takes you to lots of useful stuff about using this site (including a definition of BBcode, which means nothing to me either )

The search button is useful for looking up specific words or phrases, or for looking for posts from a particular person.

When I first started to use the site, I found it useful to cut and paste some relevant stuff into a word document, so that I had it immediately to hand.

Whether you want to browse through the posts, or post your own questions, I'm sure you'll find what you're looking for in here somewhere!

Good luck

JoAnn,

Welcome!

If you don't know, you will find some words in messages, words shown in a blue font, usually brand names. These are auto-links. If you click on these, they will take you directly to web sites about those words. For example, in Rested Gal's message, you can click on the word Resmed (or click on it here) and it will take you to a site showing you all of their products. This is very handy, especially if you want to know some specific information.

Linda

JoAnn,

The things you need to know about this board in a nutshell:

1) We all went through the same things (some still are), and we're here for you.

2) Pay particular attention to what -SWS and rested gal and wader say. They're not medical doctors or anything, but they always have good opinions and good information. (There are others, but I think they're the top three).

3) Pay special attention to the debates about the merits of DMEs vs cpap.com. Learn as much as you can, so if you end up with one of the really bad DMEs, you know your options, your choices, and know when you're having smoke blown up your tukas.

4) Pay almst no attention to anything I say, it's generally intended as humor, which many people here like, and a few consistently don't. In a world full of good information, I'm the "plucky comic relief".

5) Really, good luck with it all, and if you need a friendly electronic shoulder to lean on (if you're like most of us, there will be several points when this will be useful), there are just gobs of them here.

That about does it. If you take nothing from what I've written here, then you've already taken #4 to heart, and I applaud your fast learning.

Liam, waking up to CPAPTALK.com like others wake up to java and a bagel.

One side note on the swift, if you are a mouth breather it might not work without effort. What I mean by effort is, chin strap, some even resort to tape! I myself felt a bit closed in with my FF mask during the titration test, but I can say that an auto w/cflex makes a BIG difference. Because it lets you exhale fairly normally, (by dropping the pressure on exhale) you don't feel the suffocating closure you can sometimes feel with the pressure constantly blowing in your face/nose. If you are finding that you are feeling nervous about it once you get your mask, try putting the mask on with out the machine on for a bit. It helps you get used to it. Once you are more comfortable, start off by giving yourself sometime before you go to bed to get used to the mask/machine. For some it is hard to try to don the mask and go right to bed. I can say after 2 weeks that it does get easier!! Good luck! And between now and your appt, get educated, and if you are dealing with a DME, give them a heads up of what you are expecting before you go, to give them time to order masks or have more than one to choose from.

JoAnn wrote: I have claustaphobia (?sp) and dont look forward to anything on my face. I'm going to spend some time doing some reading from all. What is BBCode?

Hi JoAnn - I would like to let you know... don't worry, I am also claustrophobic and understand what you are not looking forward to. I have had my mask now for about 3 weeks, I have a ComfortLite Nasal Interface with small nasal cushions. This seems to work the best for me. I have tried the full mask, but forget it.... I threw it clear across the room at the sleep clinic and told them I can not sleep with this thing on my face!! So, believe me, I do understand your dilemma.

This forum is really great too!! Lots of nice people here!! Liam is right, you go to him for comic relief..... although, every now and then he does have some good advice!! Just don't ask him for directions (hehehehe.... )

Honestly, anytime you have a question, about anything.... you can post it here and wait for someone to reply.... Or.. you can find the nearest A.W.A.K.E. Support group near your home and attend that (usually held on a monthly basis) for some Face to Face Support!

Best of luck to you!! Hang in there!

Hi JoAnn,

Welcome to the board. You can get all kinds of useful and helpful information here, as well as irreverant joshing and silliness. As G00fy says in her signature -- laughter is the best medicine -- thanks Liam!

Learn from our experiences by reading all you can before your next appointment, check out the websites that sell on line, especially CPAP.COM, and go to that appointment armed with your information and knowing what you want. Try to get a copy of your sleep study either before or at the appointment -- a FULL copy -- not just the summary! Have the study fully explained to your satisfaction. Then let them know that you are not going to roll over and let them walk over you! My first sleep doctor tried to treat me like a stupid cow to lead around and did not listen to what I was saying. Well, he is no longer my doctor! I haven't found another yet, but am working on it. <end of rant -- sorry>

I use the NasalAire II interface -- it is a nasal prongs type, and kind of looks like a giant cannula (like oxygen is administered through). I like it because it has minimal headgear (which I have adapted -- see the concurrent thread with NasalAire II in the title), I can sleep on my sides or back and even on my stomach, and I can wear my glasses! Many HATE the NAII, but I have made it work for me!

All of the others above me in this thread have said it all -- I just wanted to say hi and good luck!

Sleep well,

Jane

Welcome Joann! You've found a fantastic resource here. Like Liam said, we all have a common bond that makes us family in some sense so don't hesitate to ask anything. There are some very knowledgable folks on this board and everyone will be there for you if you need it. Don't let fear of the equipment get to you, it just isn't that bad at all and the liklihood that you'll feel so much better makes it easier to overcome. A lot of us actually get kind of "addicted" to cpap! Best of luck.

HappyHoser wrote:A lot of us actually get kind of "addicted" to cpap! Best of luck.

To say nothing of our addiction to cpaptalk.com. It's a good thing my wife and I are expecting, with the amount of time I spend on here, we'd never have a chance to conceive another.

Liam, maybe tonight he'll finish up reading and go "practice", just in case this one doesn't take.

hi i just joined i'm real new i im waiting to get the sleep test my dr. says i have all of the sign of sleep apnea. so any guideness would be help full

Congrats Liam!! On the new baby!!!

blondesingle56 wrote:hi i just joined i'm real new i im waiting to get the sleep test my dr. says i have all of the sign of sleep apnea. so any guideness would be help full

The best advice is to lurk here and read as many of the posts as you can, so that when you get into your sleep lab, you know what to expect. I'd advise NOT reading my blog entries on the sleep study, because in the attempt to be funny, I overstated how bad it was, and I wouldn't want to scare you, because it really wasn't that bad.

Pay particular attention to the discussions of equipment and DMEs, because if you do have apnea, when you come out of your sleep lab, you're going to have to get some of the first and deal with the second, and again your best chance of getting a good fit and remaining compliant are to know your options and go in knowing what's available, so if you get one of the EVIL DMEs you know when they're trying to blow smoke up your butt.

Consider your insurance carefully, many people find that skipping the insurance entirely and going 100% out of pocket, but ordering from CPAP.COM ends up being cheaper in the long run than buying from their DME (BUT of course if you get one of the rare GOOD DMEs, it can be worth going that route to be properly fitted for a mask and be able to see and try on the different ones before you buy. Just don't assume, because we have report after report of DMEs trying to tell someone that there's one mask that's best for everyone (not true) or trying not to admit there are more than one or two masks in existance.

Finally, read some of the things on AutoPAP. If you can get one, you're better off, because if it turns out you do best on straight CPAP, an Auto Titrating CPAP will run in straight CPAP mode, but if you're one of the many who would do better with a machine that could adapt to your nightly needs, a straight CPAP won't do that.

Oh, DME stands for Durable Medical Equipment, and is used on this board generally to refer to the provider of such. RT is Respirational Therapist, if you see that.

And good luck! Come back any time you need support or another answer!

Liam, just the FAQs m'am.

Liam... I believe we need to all give you a round of applause!!!

You really did stick to the facts, and we are sooooo proud of you!!!

Blondesingle & JoAnn - Liam hit all the right buttons with this post! The sleep study is really pretty simple (you are all wired up for it (not like with too much caffeine), but with real wires - it is hard to sleep with it), but atleast the test is simple for our part.

Good Luck with your tests!! Visit this forum often for advise... Oh, and by the way... I am a newbie too... so, don't ask me questions directly.... too new really to be too intelligent on this subject. But, if something is right, I will let you know and if it's wrong... I will question it.

Best of Luck!