Need Advice - Probably Have Sleep Apnea Bad

Hello,

I'm new here, but I'll get right to the point.

Both my brothers have been diagnosed with sleep apnea and are on CPAP therapy. My father likely had it, too, though he was never diagnosed or on the therapy. Now, I find myself in the same boat with all of the symptoms and pretty much going crazy from sleeping all night and a good portion of my free time during the day without feeling rested at all. My fiance stays up a lot of the night watching me because I stop breathing so often for so long. I'm pretty sure I need a CPAP machine, but there are problems.

I have no health insurance with my current job. And even if I had insurance, I can't afford to pay the amount that insurance wouldn't cover. We looked into having a sleep study done, but in the end it came down to finances. I just can't afford to do it. The people at the doctor's office said that we could get a CPAP machine for only a few hundred dollars on the internet if we were positive I have sleep apnea, but I don't know how safe/smart this is. I don't know anything about what I'm looking at or what pieces I need to put where or anything like that.

Any advice? I really really need to get some restful sleep... And I'm sure it's affecting my body in other ways, as well.

Thanks in advance,
Kevin

Kevin
You are not new to this problem. Can you go to your regular doc or dentist to get a script to purchase a machine? Or go to craigs list or kijjiji, no script needed. Once you have your machine, one of the group here will help you with setting it up and they will explain how to go about setting the right pressure. Usually we tell folks to set the pressure on the machine wide open 4 to 20 for a week or two and then see what the data tells you and how you feel as to where your proper pressure should be set. Getting a data capable machine is a must. Please read and read some more on this site...especially the yellow bulb cpap wiki and new users guy...this will fill you in on a lot of questions you may have. Do either of your cpap brothers have an extra machine that you could use????? I did that with my neighbour, I loaned him one of my machines and he DID see a difference...prior to my loaning him the machine he was in BIG denial. Actually, if one of your family has a script, they could buy a machine online for you. Go to cpapauction.com or secondwindcpap.com and you will see barely used or just out of the box machines that you can buy.
Please don't go awa\y, keep trying to lick this cpap thing, if several members of your family have it then BIG chances are...you do too.
Cheers and good luck
Nan

If the Dr. office will write you a Rx, you could purchase a Devillbis Intellipap Auto from the sponsor of this forum. https://www.cpap.com. It would run about $400. With an auto you could titrate yourself. There are others here that could help you do that and will be along shortly I am sure. Search for a user "rested gal" she has written quite a bit about doing this yourself.

I'm in a similar boat, Kevin. I had my GP write me a prescription, bought a used APAP from secondwindcpap.com, and titrated myself. This still wasn't cheap, but the sleep study alone would have cost three times more than all my equipment, and there was no reason to think I needed high end diagnostics. The consequences of not treating my OSA would be many times more expensive (already have been, actually, that's why I don't have insurance). Not doing CPAP because it's too expensive would be like saving money by not putting oil in my car when it was two quarts low.

If you're completely broke, there are some organizations that distribute used equipment. One is for truckers, but I think there's also one that doesn't require you to drive an eighteen wheeler. I'd expect a waiting list, but it's worth looking into. The folks at Secondwind participate in this, so they should be able to refer you. It's got to be mentioned somewhere on this forum as well.

Considering the symptoms and your wife has observed apnea in person, it's an indication that you are experiencing SA. I'm not a doctor, go see yours for verification. Explain what you told the forum members and he should recognize the symptoms.

There are internet dealers who sell previously used CPAP and APAP machines that have been recertified and tested. Some come with a 30 day warranty.

You will need an auto machine to self titration of your therapy pressure. If I were you, I'd check out some reputable dealers (someone here can advise you on who to deal with), and report back with the deals you find. Then, the forum members can advise you on the advantages and disadvantages of each brand and model.

DaveLP wrote:There are internet dealers who sell previously used CPAP and APAP machines that have been recertified and tested. Some come with a 30 day warranty.

Mine came with a two year warranty, same as new.

ravendta wrote:The people at the doctor's office said that we could get a CPAP machine for only a few hundred dollars on the internet if we were positive I have sleep apnea, but I don't know how safe/smart this is.

Is it safe/smart to stop breathing for long periods of time every night?

Buy a machine off of craigslist, and get a mask somewhere, and just start doing it.

Thanks for the replies, everyone. I intend to read through the wiki stuff at some point this week. I did look over it earlier, but as someone who has no idea what they're looking at, I'm kinda confused.

Is a prescription REQUIRED to get a CPAP machine? Are there any advantages to new vs used? Disadvantages?

DaveLP wrote: You will need an auto machine to self titration of your therapy pressure.

Is that all I need to look for? I honestly have no idea what that means. I'm sorry

DaveLP wrote:If I were you, I'd check out some reputable dealers (someone here can advise you on who to deal with), and report back with the deals you find. Then, the forum members can advise you on the advantages and disadvantages of each brand and model.

I'd really appreciate that! Anyone have any suggestions for dealers where I can start looking? I've seen a number of different sites but, as I said, there are so many different kinds of machines ranging from a few hundred to a few thousand, and I don't really understand the differences. I read about humidity and moisture trays and heated hoses and such and I don't know which I'd need and which I don't.

Yeah, I definitely need to read through the wiki and see if I can figure it all out.

Oh, and although my brothers do use CPAP, they both dislike me and refuse to speak to me. It's a long story. But I won't be getting any help from them on this, that's for sure.

Thank you so much for your replies, everyone! I really need to do something about this. I'm an author, and I've been finding it harder and harder to concentrate on my work and I'm pretty sure it's because I'm always so exhausted and my brain is always foggy.

Kevin

Kevin, you won't need a prescription if you buy a machine through Craig's List.
If you decide to buy a machine from an online store, like cpap.com, you'd need a prescription. ANY doctor can write the prescription.

It will be a good idea to get yourself a prescription, since that is required to buy masks from online stores. A prescription for just a machine covers ordering masks, too.

If you have a family doctor (or a friend who is a doctor) ask him/her to write you a Rx for:

"CPAP @ 10 cm H2O" (if you want to buy a CPAP or an autopap -- a "CPAP" prescription is good for both types of machine from cpap.com)

or, if you want a bilevel machine or bilevel auto, have the doctor write it this way:

"Bilevel @ IPAP 14, EPAP 10"

Those would be reasonable pressure settings for you to start with on either of those types of machines.

Here are the machines I'd be looking for, if I were you. Any one of them, although if you have a choice and the price is within your means, I'd be looking for them in the order I've listed them. Every word matters in the name of a machine. Look for these specific names (name will be written on the top of the machine:)

ResMed S9 VPAP Auto -- (a bilevel auto)
ResMed S9 Autoset ----- (an autopap)
ResMed S9 VPAP -------- (a bilevel)
ResMed S9 Elite -------- (a CPAP)

ResMed S8 VPAP Auto Enhanced -- (a bilevel auto)
ResMed S8 Autoset with EPR ------ (an autopap)
ResMed S8 VPAP -------------------- (a bilevel)
ResMed S8 Elite with EPR --------- (a CPAP)

The S9 is their newest series. The older S8 models would likely be less expensive and would treat you just as well as the newer S9.

Don't worry about software. The specific S8 and S9 machines I listed give all the information you actually need to see, in order to work on tweaking your therapy yourself -- data that can be viewed right there in the little window of the machine.

Good luck! You're setting out to do what I did successfully for myself seven years ago:

My story - why/how I started using "cpap":
viewtopic.php?p=5977#p5977

Are your brothers in the same geographic area as you? If so, you could speak to their doctors and explain your situation to get a prescription written. And your fiancee should come along to verify to the doctor that you have been having periods of non-breathing at night. Maybe even record it and show the doctor the video (you could wear an eye mask so the light in the room for the video doesn't disturb you). Just a thought...

Also, maybe one of your brothers could lend you an old mask of theirs to get you started after you get a cpap machine. Just make sure you clean it well before using it!

For a number of reasons, I'll suggest to buy a PRS1 (Philips Respironics Series One) REMstar auto or a ResMed S9 AutoSet machine, not any of the others. In particular, do NOT buy the older models from the same manufacturer.

These machines will do a good job of letting you determine your own pressure. They use non-proprietary data cards. You can put the card in most computers and use free, open source, software to look at graphs of your data.

Older models from the same manufacturers will give you good treatment, but do not record as much data and may be harder to access the data from. Be sure any "REMstar" or "Respironics" machine says "Philips," or it's an older model. Don't the the "AutoIQ" machine, just the PRS1 REMstar Auto. Be sure any ResMed says "S9," not "S8." Do not get the "Escape Auto," just the "AutoSet."

A PRS1 Auto with heated humidifier is under $700 online. Figure $100 more for a mask. An S9 AutoSet is $300 or so more. People seem to like the AutoSets a bit more than the PRS1 model, but either is great.

Lesser models of CPAP machines can still do a fine job, but they give you a lot less data to figure out your treatment. You could simply get a machine that records no data and adjust your pressure up and down until you find what works for you. Unfortunately, you can't really judge your treatment well without data or a sleep study. It also often takes weeks between the time you adjust your CPAP and you fully feel the results. You will need a machine you can figure out how to change the pressure on yourself. Most can be adjusted without special tools or a computer, but there are a few that can't.

Get a prescription. It gives you more options. You can find good deals on Craigslist with no prescription. The usual risks of Craigslist apply. I got a good PRS1 Auto machine for $225, but I had to check the ads for 3 months. There will be a lot of people trying to sell ancient junk CPAP machines at ridiculously high prices. Or nearly new machines at more than you can buy online. People will see the phony list price for the machine that the DME tries to bill their insurance and think the machine's worth that. The DME might bill $2500 for the same machine you can get online for $700. The insurance won't usually pay them that money, but they print the phony bills anyway. There's also the occasional gem at really good prices.

A PRS1 Pro (NOT Plus) machine or S9 Elite (Not Escape) will give you good data to work from but will not auto adjust. You'll have to look at your results, then change your pressure the next night and see what happens until you dial in the "right" pressure.

Get a heated humidifier with your unit. For many people, unhumidified CPAP air is just too rough on their nose, mouth, and throat. You could end up with a clogged nose and not get any of that good air from CPAP.

If you see something else you're interested in, post it here and get some info on what it will do. Be careful, there are a lot of confusingly similarly named machines.

Kevin, let me throw one idea out here...I realize you may not be a veteran of the armed forces, but if you are you can join the Veterans Administration and get taken care of. After 30 years of being out of the military I finally joined last year, and I credit that change with saving my life. I wasn't even aware I could join until I learned about it from another veteran. Anyhow, despite my complaints to my prior Dr, he never suspected sleep apnea and it wasn't until I got into the VA that someone there figured out I had it. They did two sleep studies and got the machine for me. If it weren't for them, I might be dead today.

If you are not a veteran, then the other advice here will be helpful, but I thought I'd throw that out there because maybe there is a veteran reading this that may find this helpful.

Happened to run across this while searching and reading up on machines and thought it might be of interest to you....I didn't read it, just seen where it said they help folks without insurance or unemployed, ect. ect.

http://awakeinamerica.info/donaterelief/