Doing CPAP w/out a doctor?

[Guest]

Hi all,

Long time snorer, first time poster. I'm a 40-something male whose life is being increasingly ruined by bad sleep. I am convinced beyond a reasonable doubt that I have apnea. Been taking some OTC nose drops due to congestion which helps a little, but one becomes dependent on it, plus I'm sure I have the tongue-blocking-airway thing as well. Partners must wear earplugs, and it is utterly impossible to sleep on my back. Fetal works an hour or two at a stretch. I once took an Ambien and I almost suffocated, dreamed I was drowning. I'm in pretty good shape, with lots of exercise. But this is ruing my mood and energy and depressing the crap out of me.

Anyway, I am between insurance - I literally just went off of my HMO (COBRA ended) last week (I could re-up the HMO due to grace period, but COBRA is over, so I'd be paying the same as a PPO). I was concerned about this being a pre-existing condition as a transition to a PPO. Anyway, my main question is, have any of you just bought CPAP's on your own without a doctor's care or sleep study?

I'd thought about doing a sleep study with my HMO, since it's a take-home thing. I couldn't possibly sleep in some sleep study doctor's office (which I assume all non-HMO doctors want to do), I can barely sleep in my own comfy bed. But procrastination and time got away from me and as the end of COBRA neared, I read about how pre-existing apnea can hurt one getting new insurance, so I balked.

I've seen these CPAPs on Amazon, and you call have them in your sigs. So tell me why I'm an idiot to think I can just buy a mask and a CPAP and start trying settings?

One other thing, my 80-something grandma just "cured" her apnea by falling asleep at a 30-degree angle in a hospital bed, so now she sleeps that way all the time. That was a trip! Won't work for me though, ha ha.

[rested gal]

my main question is, have any of you just bought CPAP's on your own without a doctor's care or sleep study?

Oh, yes.

My story:

Googled "snoring" and went on my own from there, digging into the only sleep apnea message board I could find. A heavily censored forum called sleepnet.com. Soon after, I found the "talkaboutsleep" forum.
cpaptalk.com didn't exist back then.

-SWS helped me immensely in getting my early autopap therapy going well.

How I got started on cpap:
Jan 25, 2005 subject: not diagnosed yet, many ? brand new here
viewtopic.php?p=5977#p5977
note: Poisson's reply had good reasons why a PSG sleep study is important.

My eventual sleep study:
Nov 19, 2005 subject: First Sleep Study...finally! - rested gal
sleepydave on that board goes by the nicknames deltadave, StillAnotherGuest, Muffy, and NotMuffy here on cpaptalk. Many thanks to him for helping me get a real sleep study two years after I'd been successfully using an autopap on my own.

[CPAPinator]

my main question is, have any of you just bought CPAP's on your own without a doctor's care or sleep study?

Oh, yes.

My story:

Googled "snoring" and went on my own from there, digging into the only sleep apnea message board I could find. A heavily censored forum called sleepnet.com. Soon after, I found the "talkaboutsleep" forum.
cpaptalk.com didn't exist back then.

-SWS helped me immensely in getting my early autopap therapy going well.

How I got started on cpap:
Jan 25, 2005 subject: not diagnosed yet, many ? brand new here
viewtopic.php?p=5977#p5977
note: Poisson's reply had good reasons why a PSG sleep study is important.

My eventual sleep study:
Nov 19, 2005 subject: First Sleep Study...finally! - rested gal
sleepydave on that board goes by the nicknames deltadave, StillAnotherGuest, Muffy, and NotMuffy here on cpaptalk. Many thanks to him for helping me get a real sleep study two years after I'd been successfully using an autopap on my own.

Fascinating and thanks for the links. I tried logging in in my original post but failed. I'd be very interested in what others have to say about the insurance issues, and is the sleep study really necessary.

Are these CPAPs self-adjustable? I know they don't all have humidifiers, since my grandma's doesn't. I'd assume there's a wide range of models, cheap through top-of-the-line.

TIA all!

[archangle]

A good sleep study and a good doctor will tell you a heck of a lot more than you can figure out on your own without special equipment such as EEG, etc. It will find a lot of other dangerous conditions that you won't figure out on your own even with the best CPAP machine and software.

If you do it on your own, you may miss a serious health problem that a proper sleep study would have found. You could die because you did it on your own instead of getting a "proper" study.

However, if you do CPAP on your own vs. not even doing a study, that might save your life, too.

You can also pay for a sleep study, doctor, local DME, and not get good service, too.

[rested gal]

If you're going to do it all by yourself (with the help of people on this message board) here's what I'd get, if it were me, and if money were no object:

Machine: ResMed S9 Autoset
(I would not get the "Climateline" hose for the S9 Autoset... I'd get a standard cpap tube.)
The instant I knew I was going to get THAT machine (or whatever machine you decide on) I'd post here on the message board, announcing the full name of the machine I got. That way, someone (many someones probably) will no doubt offer to send you the software so you can monitor your own treatment.

For lack of any sleep study pressure to go by, I'd set the autopap in straight CPAP mode (not autotitrating mode) to begin with. I'd try a straight pressure of 8 for three or four nights, then pressure of 9 for several nights, then 10... and so on. I'd experiment with turning on EPR (a feature of the machine that will drop the pressure each time you exhale) during at least one night of each pressure trial. The software will show you when you find the pressure you need to prevent all apneas and most hypopneas, and how turning on EPR at various levels of exhalation pressure relief affect your treatment.

If I were going to use the machine in autotitrating mode right from the get-go, I'd set the range of pressure to minimum pressure 8, maximum pressure 15. The software will show you what's going on, and people on the board will help you tweak the range after you post some screenshots of the detailed data.

Humidifier (and yes, I'd definitely go ahead and get a humidifier even if I ended up not using it:)
Fisher & Paykel HC 150 heated humidifier. I'd not get the humidifier made for the ResMed machine... I'd get that separate F&P HC 150 humidifier. It can be used with any brand of machine.

If I experienced "rain out" (water dripping from the hose into the mask when using a heated humidifier) and a hose cover didn't take care of that, I'd either buy the "heated CPAP tube" from sleepzone.com.au or from the U.S. store that sells it .... or I'd rig up a Repti heat cable to keep the hose warm:
LINKS to discussions about the Aussie heated hose or Repti heat cable - to prevent rainout
viewtopic.php?t=5305

I'd go to Lowe's and buy several of these handy little things, to make it easier to lift the hose off the humidifier water chamber when adding water:
http://www.tnlc.com/Lara/laura/osa/Elbo ... irhose.jpg

I'd think about how to hang the main air hose overhead, so I could turn over easily without having the hose tug at the mask:
LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

I'd spend a lot of time reading this great thread started by Moogy.
Oct 30, 2006 subject: Please Share Misc Helpful Hints
viewtopic.php?t=14746

If I had any mask problems (the mask is going to be your #1 key to being able to "do CPAP" comfortably and effectively) I'd put on my creative thinking cap and dig into this thread, looking at ALL the modifications to all types of masks -- not just the mask I had, since some things that work for one particular mask can also work for other types/brands:
LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

And yeah...the mask.
Until you know, from overnight Leak data displayed in the machine's little window, that you do, or do not, leak treatment air out your mouth I'd try the masks listed below, in that order -- as many different masks as your billfold will allow -- until you find a mask that lets you sleep comfortably. Mask doesn't have to be the same brand as the machine.

ResMed Swift FX
ResMed Activa LT
Puritan Bennett DreamFIT (not the PB Breeze with Dreamseal attachment.)

If I saw a massive amount of leak in the Leak data, I'd figure I breathe through my mouth during the relaxation of sleep, and I'd try a homemade chin strap. If that didn't prevent the leaks, I'd put tape over my mouth (yep.. tape) in order to keep using a mask I liked. Or, I'd make myself a DIY thingy from some boil'n'bite athletic mouth guards, to force my tongue into a sealing position inside the mouth.
LINKS to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

Or, I'd start trying Full Face masks, like these, in this order:

ResMed Quattro Fx
ResMed Ultra Mirage FF (an older mask, but maybe still to be found.)
or...the Hybrid.

Good luck, CPAPinator. You're going to do fine.

[CPAPinator]

If you're going to do it all by yourself (with the help of people on this message board) here's what I'd get, if it were me, and if money were no object:

Machine: ResMed S9 Autoset
(I would not get the "Climateline" hose for the S9 Autoset... I'd get a standard cpap tube.)
The instant I knew I was going to get THAT machine (or whatever machine you decide on) I'd post here on the message board, announcing the full name of the machine I got. That way, someone (many someones probably) will no doubt offer to send you the software so you can monitor your own treatment.

For lack of any sleep study pressure to go by, I'd set the autopap in straight CPAP mode (not autotitrating mode) to begin with. I'd try a straight pressure of 8 for three or four nights, then pressure of 9 for several nights, then 10... and so on. I'd experiment with turning on EPR (a feature of the machine that will drop the pressure each time you exhale) during at least one night of each pressure trial. The software will show you when you find the pressure you need to prevent all apneas and most hypopneas, and how turning on EPR at various levels of exhalation pressure relief affect your treatment.

If I were going to use the machine in autotitrating mode right from the get-go, I'd set the range of pressure to minimum pressure 8, maximum pressure 15. The software will show you what's going on, and people on the board will help you tweak the range after you post some screenshots of the detailed data.

Humidifier (and yes, I'd definitely go ahead and get a humidifier even if I ended up not using it:)
Fisher & Paykel HC 150 heated humidifier. I'd not get the humidifier made for the ResMed machine... I'd get that separate F&P HC 150 humidifier. It can be used with any brand of machine.

If I experienced "rain out" (water dripping from the hose into the mask when using a heated humidifier) and a hose cover didn't take care of that, I'd either buy the "heated CPAP tube" from sleepzone.com.au or from the U.S. store that sells it .... or I'd rig up a Repti heat cable to keep the hose warm:
LINKS to discussions about the Aussie heated hose or Repti heat cable - to prevent rainout
viewtopic.php?t=5305

I'd go to Lowe's and buy several of these handy little things, to make it easier to lift the hose off the humidifier water chamber when adding water:
http://www.tnlc.com/Lara/laura/osa/Elbo ... irhose.jpg

I'd think about how to hang the main air hose overhead, so I could turn over easily without having the hose tug at the mask:
LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

I'd spend a lot of time reading this great thread started by Moogy.
Oct 30, 2006 subject: Please Share Misc Helpful Hints
viewtopic.php?t=14746

If I had any mask problems (the mask is going to be your #1 key to being able to "do CPAP" comfortably and effectively) I'd put on my creative thinking cap and dig into this thread, looking at ALL the modifications to all types of masks -- not just the mask I had, since some things that work for one particular mask can also work for other types/brands:
LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

And yeah...the mask.
Until you know, from overnight Leak data displayed in the machine's little window, that you do, or do not, leak treatment air out your mouth I'd try the masks listed below, in that order -- as many different masks as your billfold will allow -- until you find a mask that lets you sleep comfortably. Mask doesn't have to be the same brand as the machine.

ResMed Swift FX
ResMed Activa LT
Puritan Bennett DreamFIT (not the PB Breeze with Dreamseal attachment.)

If I saw a massive amount of leak in the Leak data, I'd figure I breathe through my mouth during the relaxation of sleep, and I'd try a homemade chin strap. If that didn't prevent the leaks, I'd put tape over my mouth (yep.. tape) in order to keep using a mask I liked. Or, I'd make myself a DIY thingy from some boil'n'bite athletic mouth guards, to force my tongue into a sealing position inside the mouth.
LINKS to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

Or, I'd start trying Full Face masks, like these, in this order:

ResMed Quattro Fx
ResMed Ultra Mirage FF (an older mask, but maybe still to be found.)
or...the Hybrid.

Good luck, CPAPinator. You're going to do fine.

My lord, thank you so much, Rested Gal, for such an amazingly detailed reply! This is quite overwhelming. I'm the type to do lots of research, and I'm pretty indecisive, hard to pull the trigger on things. Been looking for a car since December, and still don't have a clue.

I'll look this well over and check out all the links when I am highly caffeinated in the mornin'. BTW, I have a brochure for the Sleepweaver, might have to check that out at some point...

Thanks again!

[dave50]

Cpapinator -- I searched this site for 'oximeters' , stacks of comments.

I've been on a machine for nearly 3 years, now the good ResMed9, and just bought the CMS 50E recording oximeter a month ago. ( In france so bought at amazon uk , more expensive than US but less than here! )

http://www.amazon.com/gp/product/B0021D4G9A

I see that in one of the comments someone had diagnosed themselves using this gadget, and it would be a very good starting place. I haven't yet got the software for my resmed -- its a rented machine provided by our national health service -- but the oximeter is good for me to monitor how I'm doing.

An interesting learning curve .

[Paper_Nanny]

Anyway, I am between insurance - I literally just went off of my HMO (COBRA ended) last week (I could re-up the HMO due to grace period, but COBRA is over, so I'd be paying the same as a PPO). I was concerned about this being a pre-existing condition as a transition to a PPO.

I'm not clear on the terminology. Is the PPO a group plan? If so, you can't get dinged for a pre-existing condition if you have had contiuous coverage prior to switching plans.

I couldn't possibly sleep in some sleep study doctor's office (which I assume all non-HMO doctors want to do), I can barely sleep in my own comfy bed. But procrastination and time got away from me and as the end of COBRA neared, I read about how pre-existing apnea can hurt one getting new insurance, so I balked.

Oh, they have their ways to make you sleep...

I've seen these CPAPs on Amazon, and you call have them in your sigs. So tell me why I'm an idiot to think I can just buy a mask and a CPAP and start trying settings?

Do you have to send in a copy of the physician's order with places like that? If so, you might be able to obtain one privately. Which is my mai reason for posting. I don't have a spare CPAP, but I do have some spare masks. If you pursue this, and you are interested in some masks, let me know.

One other thing, my 80-something grandma just "cured" her apnea by falling asleep at a 30-degree angle in a hospital bed, so now she sleeps that way all the time. That was a trip! Won't work for me though, ha ha.

What do you have to lose by trying it? If 30 degree angle doesn't work, a 35-degree might.

Deborah

[purple]

You do not need to sleep during the night you are at the sleep clinic for them to do what they do. Please do not worry about the illogic of it, if the sleep clinic people know their business, they will be able to make the measurements. Perhaps, try to find a teaching hospital and see if they will do your case as a charity case, or whatever they call a for free case. They may make you talk to a Social Worker who will ask you about your finances and such. Usually Teaching hospitals do a number of cases for free every year. Doctors are very high on helping people who plan to use their health improvements as part of going back to work.

Obama Care requires that no one turn you down for pre-existing condition, but in reality, ??? Not sure when that provision goes into effect or if that part of Obama Care will be continuing.

Any doctor can write a prescription for a CPAP machine. You want an auto, and one that does full data, some only confirm that you are using machine, which is to prove to insurance companies that you are using it.

Used machines from secondwind.com. and . . .
do not get suckered by price and get the wrong machine. Get either an S9 Autoset or the PR System One REMstar Auto CPAP Machine with A-Flex.

As of Saturday night, CPAP.com was willing to sell a new PR System One REMstar Auto CPAP Machine with A-Flex with humidifier for $635.00

Usually they want an individual to prove the existence of a problem by doing an overnight recording Oximeter study. Overnight oximeter test only requires that you wear a the little clip on one of your fingers, and hopefully a teaching hospital will provide the tools do this for free.

[archangle]

You do not need to sleep during the night you are at the sleep clinic for them to do what they do.

Not what they told me. I had to come back in and take a second test with a sleeping pill to get some sleep.

A sleep test without sleep makes no sense.

Has anyone else had a "no sleep" sleep test and gotten any "results" from it?

Obama Care requires that no one turn you down for pre-existing condition, but in reality, ??? Not sure when that provision goes into effect or if that part of Obama Care will be continuing.

I think that is supposed to start in 2014.

[rested gal]

You do not need to sleep during the night you are at the sleep clinic for them to do what they do.

Not what they told me. I had to come back in and take a second test with a sleeping pill to get some sleep.

A sleep test without sleep makes no sense.

I agree with archangle. For Obstructive Sleep Apnea to be diagnosed in a sleep study, a person would have to sleep at least some during the study night for the apneas to be noted.

If a person has been sent for a sleep study for primary insomnia that could be a different ballgame.

But for the usual reason for having a sleep study -- suspected OSA -- sleep has to happen for "obstructive sleep apnea" to be seen.

Perhaps purple meant to say that it's not necessary for sleep to happen during the ENTIRE night at the sleep clinic. It doesn't take much sleep in many cases for a diagnosis of OSA, but there does have to be some sleep observed.