How do we know that a OSA Dx isn't a scam?

[BlackSpinner]

You know if you are computer buff you got to think off it this way:
This peripheral is designed to turbo charge your outdated hardware and boost your legacy software so get those drivers installed and fine tuned and stop trying to kludge you way through with a buggy system and make it work.

[LoQ]

How do we know that we are not just being had?

For me the evidence is really pretty simple. We have a great number of people who really don't want to use their PAP machines, but they've learned to do it, anyhow, because they've seen that it relieves symptoms.

I for one would not keep using it if it weren't providing me with enormous benefits.

The fact that you think it is a scam suggests that you are not desperate enough to accept that PAP therapy may be the solution. The most desperate people tend to be the ones who persist the hardest in finding a solution. I was extremely desperate, and in spite of my aversion to being touched by things when I sleep, I have forced myself to adapt to CPAP therapy, because it provides me with a superior quality of life to what I get without it.

It took me almost a year to see any benefit at all. That's a long time to keep using something so obnoxious that doesn't seem to be helping, but I will tell you that the reason I did was because I was suffering enormously.


My personal opinion is that the current diagnostic criteria (really criterion) ought to be tossed out of the window, because not ENOUGH people are getting the therapy they need. How's that for an alternative view? You think there is over-diagnosis, I'm saying there is likely under-diagnosis.

without fail, they all said that either 1) I wasn't snoring at all, or 2) I was snoring loudly but evenly and steadily without any pauses.

I will simply assert that that's pretty much irrelvant data. You can't eliminate a diagnosis of SDB with a bunch of lay people listening to you for a bit while you sleep. You certainly can raise a suspicion of SDB by the same technique, but the arrow is one way, not a two-way one.

I only heard constant, steady snoring.

So you listened to the entire recording? You know for a fact that it was constant, steady snoring, even through REM sleep? If you did, that is pretty incredible that you would listen to many so hours of snoring. Somehow I am thinking you sampled the recording, rather than listening carefully to the whole thing. Am I wrong?

Any thoughts?

You may have been improperly diagnosed. I don't have the facts and am not a medical doctor so I can't really say whether or not you actually have SDB. I don't find your arguments compelling, but that doesn't mean that your conclusion about your own status is wrong. In the end, you have to be your own health advocate. Do what is right for YOU. Whether PAP therapy helps me or not is not particularly relevent to your situation. It's expensive therapy, and perhaps it is wise to consider whether the diagnosis is accurate for that reason alone.


The one caution I would give you is not to dismiss the diagnosis too quickly. Do you have symptoms other than snoring?

[LinkC]

I think having delusions of conspiracy is a sure sign of OSA.

[billbolton]

So why did my sleep study show an AHI of 65? Doesn't that mean that on the average, I have trouble breathing for more than 10 seconds every frigging minute?!?

I suppose I am just asking for re-assurance. No, scratch that - I'm asking for some real data points.

So please post some real data then

You could start by scanning your sleep study results and posting them somewhere that they can be viewed on-line.

Cheers,

Bill

[chunkyfrog]

--I immediately started waking up WITHOUT a headache!
--I stopped having bizarre nightmares. (are you ready?--here it comes :---)
[killing kittens with a pick axe]
--I am able to drive, work, watch TV, anything!-- without dozing off.
After 3 months my liver enzymes dropped so much my doc thought I'd been following a low-fat diet.

[DoriC]

My son who's an Internist in NYC has told me and our Primary Dr confirmed it that while it's true that the compliance rate is about 40-50% in their practices, it's also true that about 20% of patients they recommend for a sleep study ignore their recommendation. It then becomes a challenge to treat them for all the other health issues that go along with untreated OSA. Most often other specialists such as Cardiologists, Pulmonologists,Endocrinologists and mental health professionals need to be brought into the mix which can cause additional confusion. I think the key to success is education, learning what OSA is and what it does to your health,understanding your sleep study results, learning about the equipment, analyzing the data and making adjustments accordingly. And of course joining this forum and knowing you've got help whenever you need it. Good luck and read all you can here.

[auntlala]

i can only speak for me but here is my story - i knew for many years that if i slept on my back i would rouse with the sensation i couldn't breathe - blamed it on post nasal drip/sinuses. knew i snored - my whole family saws logs with the best of them (have yet to convince any of them to get tested). well may of '08 - memorial day weekend i do not know what combo of symptoms came together just right but 3 times in the space of 2 hours i awoke with the awareness that i was not breathing. had had occasional episodes in the past but not enough to cause the panic these did this night. by the third episode it was so bad i was terrified to go back to sleep - in fact from then until i had my cpap i barely slept. as i told an RT in a discussion about possible needed setting changes later on when she asked me if i was having apnea episodes - i didn't just start the apnea that night, i just became very aware of it. so do i think it is a scam - NO!!! do i think the DME companies need improvement YES!!!

i just found this site a few days ago - i had no idea you COULD monitor your values like you folks do. I was working this past week with a patient new to cpap - learned she had an in home sleep study and then the DME company brought a cpap to her house showed her basically how to turn it off and on and that was it. i spent as much time in cpap education as i did on physical therapy with her but face it if you cannot sleep you cannot strengthen. and she had no idea that with a good cpap setting/mask fitting you can get MORE than 2 hours of sleep peer night.

maybe i should get a RT degree and start a cpap company that truly WANTS to help cpap users - bet i could make a fortune

[Muse-Inc]

...did in fact relax my mouth a little bit too much last night, because I suddenly awoke because my lips were fluttering a little. But that's so far the only night that this has happened. But it's definitely possible that there may be other times where I am actually leaking a bit from my lips but silently so that it doesn't wake me up. I'm having trouble buying into that, but maybe I'm getting deeper sleep now so that the things that I assume would immediately wake me up, in fact might not do so any more...

I lost about 45#s when I started losing therapy air thru my now and then flapping lips, all those little puffs of lost air saw me backslid into many of my OSA symptoms for about 6 months. Took me searching online and discovering this forum and getting educated and told in no uncertain terms from LinkC and Rooster as well as others what was happening that it finally penetrated my muddle thinking that they were right, I was losing thereapy air via my mouth. Sleep doc confirmed that the wt loss and my resultant much thinner lower face and throat likely meant I was no longer able to maintain the velolingual seal in the back of my mouth, hence losing therapy air (I though he was kidding until we looked at my original pictures). Turns out he'd just seen another hosehead who'd lost about 50#s with the same problem.

Hadda give up my beloved OptiLife mask and graduate to a FFM make, my choice the Hybrid.

[tony72]

you woke up and noticed you werent breathing,how is that possible?

[larry63]

At the moment guys and ladies, I just want to say THANK YOU!!!

It is so good to hear intelligent and informed discussion and good advice!

I honestly was having the fire extinguisher ready at hand because I expected nothing but flames
for the mere suggestion that someone could have been improperly diagnosed with sleep apnea.


As it turns out, nothing of the sort happened, and it turns out that people on this forum don't blame
every single symptom they have as being due to undertreated sleep apnea.

There are a few people on this thread to whom I would like to respond personally, and I will if I have time,
but in general I would ily my first sleep study, I think that most of my apneas where actually hypopneas.
IOW the hypno index > apno index. That would I guess explain why I could be snoring steadily but some of those
snores could be hypnopeas (?)

Thanks again EVERYONE. I know that I opened with a somewhat inflammatory topic, and it's very re-assuring that
people responded with reasonable opinions and facts.

There's certain messages that I have an interest in, so I will either PM or follow up on a separate thread.

[taberge]

Waking up in the morning and feeling the same amount of tired as went to bed is a craptastic feeling. First night was a big improvement for me. No more fatigue for me. My BP went down. I lost weight, about 50 lbs. I am told that I no longer snore even when I nap on the couch since having trained myself to keep my mouth shut with some painters delicate tape and some chapstick.

[Goofproof]

you woke up and noticed you werent breathing,how is that possible?

He made a "U" Turn when he got to the White Light. Jim

[larry63]

[quote="BlackSpinner"]You don't need an rx for a chin strap - an ace bandage will do the job but it might not keep your lips closed.

Thanks, I thought so, I was hoping I can just go to the local CVS or RiteAid for an ACE bandage (in the USA), and it looks like I can so thanks.

But here is where you' got really weird:

"You are a linux buff - how come you are willing to run without data or knowing what is going on? would you treat your latest tech toy that way"

?Huh?"

Now this is where you' went off the deep end. Huh? A Linux "buff"? latest "tech toy"? Sorry, ya lost me there. Please give your definition of a "buff", and explain the bit about "the latest tech toy", and how he the fact that my home PC's at the moment happen to be running Linux makes me some kind of tech nerd. I TRULY hope you are just kidding and/or trolling tounge in cheek.



: I bet you know the ins and out of the computer you work on. Your life depends on this new toy - your intellectual life as well as your physical life "

Huh? Dude? , What in god's green bean are you talking about? Are you a licensed psychotherapist? Seriously, WTF?
Where did I say that I know the "ins and out" of the computer I work on"?

I don't really know what your definition of "ins and out" is, but I suppose it's good that no subcontractor had me commit to that clause.
I mean, really, what on earth are you trying to get at here?


" no O2 means less mental ability - and damage to organs like the heart."


Well now you're on to something. We do have to take care of our bodies, and I'm in particularly guilty of not getting enough aerobic exercise lately.
It results in my feeling tired but extremely restlesss like an ADHD kid, but I know that if I spent an hour a day just doing some moderate activaty, it would help greatly.

But in general: dude or dudette, please, I don't understand why your post was so inflammatory. What did I ever do to evoke this kind of response?

I wish you well.

[larry63]

You know if you are computer buff you got to think off it this way:
This peripheral is designed to turbo charge your outdated hardware and boost your legacy software so get those drivers installed and fine tuned and stop trying to kludge you way through with a buggy system and make it work.

Whatever. So you claim that I have outdated hardware. I disagree. And then I supposedly am running with legacay drivers. I don't think so, my drivers are all up to date and driving pretty strong.

[BlackSpinner]

[
?Huh?"

Now this is where you' went off the deep end. Huh? A Linux "buff"? latest "tech toy"? Sorry, ya lost me there. Please give your definition of a "buff", and explain the bit about "the latest tech toy", and how he the fact that my home PC's at the moment happen to be running Linux makes me some kind of tech nerd. I TRULY hope you are just kidding and/or trolling tounge in cheek.

Most of the people I know who are running non windows computers are computer geeks ( the only non geek I know is my daughter because I forced it on her after numerous viruses). So I assumed that is where you are coming from and gave analogies that you would be able to relate too. Since you don't like them just ignore them. No need to get your knickers in a knot.

The biggest issue with OSA is not the snoring, not the bad sleep, but the lack of O2 - the lack of deep sleep (REM) can cause all sorts of mental/emotional issues but the lack of O2 is very damaging over the long term and can cause heart failure, strokes and a host of other chronic illnesses. You are lucky someone has diagnosed you before too much damage has been done, before you lost your relationships, your career was in the toilet and you were on a ton of medication for BP , depression and a few other major issues.