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

larry63 wrote:

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 (?)

Some of those snores could coume just before of just after hypopneas -- you never stop breathing entirely, but the amount of air yui do manage to get in through the obstructions is low, and may affect the amount of oxygen your body is getting.

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

Ahah! I knew it! So, they got to you too, huh?

BlackSpinner wrote:

larry63 wrote:[
?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.

Yup, check or semi-check on all of those issues. I just had hoped that at least the temporal symptoms would have improved with therapy by now.
It concerns me when people bring up issues like "paying off sleep debt" to explain why it may take months to start feeling better.
Bring on the citations, dudes, if this is the case. I'm all ears (or eyes). Otherwise my conclusion would be that there was either a bad dx or bad tx,
and you happened to start feeling better after several months because of some not unreleated but non-causal change.


What's a knicker? And rest assured, many, if not most, Linux users are generally not geeks. We're simply practical. We're not sheep who will pay a company about a thousand dollars per computer for and operating system, office suite, antivirus apps, and other. Yes, dealing with Linux at times can be pretty annoying, but so can dealing with a user who has a worm or virus on their Windows machine.

I agree with GumbyCT that for some sleep doctors it is a money mill. I suspect many doctors who run sleep centers are legally 'qualified' to run a sleep center, but have no real love of the subject, like their main specialty of cardiology, pulmonology or neurology, etc. For them, it's just another cash-flow vector. My own doctor (a cardiologist) admitted that he is a clinician who works within certain parameters and is not interested in or familiar with the more unusual diagnoses. He would rather farm out the patients with difficult diagnoses to real sleep doctors.

There are sleep specialists out there for whom sleep is their main interest. The key is finding that specialist.

As to whether CPAP is useful, there is no doubt that some people really need it to survive. As kteague suggested, it's all about getting oxygen. Each person is tested with and without a machine, acting as their own control. Some people demonstrably sleep better with the machine. It's scientifically repeatable, so it's clearly not a scam. The real reasons behind why they need it may not be as clear as 'sleep mills' would like us to believe, nor are all the variables. And OSA is not the only reason some of us need xPAP.

lbw wrote:My sleep study showed no REM cycles without CPAP. In the last 4 months I have started dreaming again. As well as my depression has improved, no need to take sleeping pills anymore. Overall just feel better. Used to be a really restless sleeper. Waking up frequesntly. Now barely move when I sleep. Diagnosed 4 month ago and haven't missed a night since.

Ah, we are exact opposites then. I had awesome dreams before the CPAP "treatment". Not anymore, except for one night (I woke up and I was like - wow man, I had a dream!). Mostly my memories of my nights are all the times when I wake up adjusting my mask. I really miss a good night's sleep.

larry63 wrote:
Yup, check or semi-check on all of those issues. I just had hoped that at least the temporal symptoms would have improved with therapy by now.
It concerns me when people bring up issues like "paying off sleep debt" to explain why it may take months to start feeling better.
Bring on the citations, dudes, if this is the case. I'm all ears (or eyes). Otherwise my conclusion would be that there was either a bad dx or bad tx,
and you happened to start feeling better after several months because of some not unreleated but non-causal change.

My emphasis. Why do you turn to us for anecdotal information when what you want is scientific studies? Although some of us are scientists, I don't think any of us are sleep researchers. I don't keep personally conducted double blind experiment reports up my sleeve. If you want scientific reports, there are tons out there, you only have to look for them on the internet. I do not keep citations from other people's reports up my sleeve either because I don't feel the need. If you want anecdotal information, you have come to the right place. But don't expect scientific proof from anecdotal information. You're not going to find it.

larry63 wrote:And rest assured, many, if not most, Linux users are generally not geeks.

Actually, they are mostly geeks. You may be different from the norm with Linux users, but BlackSpinner's assumption was quite reasonable, even if it turned out to be incorrect where you are concerned. I think you over-reacted. But all of us who are short of O2 are prone to that, so welcome to the hose crowd.

Larry, you've got some of our knowledgeable and caring people here wanting to have a dialogue with you and offer you some good solid advice. I have suffered with my husband through 2 Triple Bypasses and an Aortic Valve Replacement because he refused to accept treatment 10 years ago when he had no cardiac problems at all. When he finally realized he was losing his battle with OSA and his quality of life was almost non-existent, napping most of the day, snoring, gasping and arousals most of the night, and pretty severe memory and personality changes, he finally faced the challenge and we were grateful to be told there was some treatment that could save him as we thought it was too late. It certainly took more than 6 weeks for me to find this forum, educate myself and ask lots of questions and digest them. I fought for a data-capable machine, got the software and learned how to analyze it, make adjustments and changed several masks. I was at another disadvantage because I'm not the user myself and my husband is somewhat physically disabled and has memory deficits so I didn't get much input from him. I'll fast forward to about 9months later and gradually as his sleep deprivation lessened and I got less anxious,I now have my partner back(although he never fully recovered his short-term memory which could also be age-related, Drs are not sure). He jokes,uses the computer and reads books again, watches his beloved Yankees, we visit with friends and family and he stays awake and watches TV with me in the evening. At this point in our lives, we're good. I know it's not always easy to accept this change and I sometimes question whether I myself could do it, so I always think of my husband and my friends here as my heroes. Be patient.

larry63 wrote: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?

Well, ok. This is what I did as far as I remember (it was quite a few years ago). I knew (obviously) that I wasn't going to listen to an entire night's recording.

So what I did was make a Pure-Data patch that recorded segments of x time every y. I don't remember what x and y where, but let's say x was 10 minutes and y was once per hour. (but maybe it was only once every two hours and I missed things).

This was all after a former experiment just using a micro-cassette recorder and having me play back the recording for myself

and some guests (who couldn't stop laughing BTW!). And we came to the conclusion that I snored very loudly, but it was a steady snore without interruptions.
So, back to the experiment, now I have a bunch of sound files gathered through the night, and even though they were just 10 minute samples, I wasn't going to sit there and listen through an hour or more of snoring.

So really what I did was just load all of the files in Audacity (an open source sound editor), and look at the waveform compressed in the time domain
to where I could easily see the amplitude peaks in the snoring. And it was cool - I could set the time scale so what I could easily see a steady stream of snores.
Some seqments had snoring, some did not. But the ones that did, mostly had steady even snoring - i.e. if I looked at the waveform, the time distance between peaks was rather constant, with no suspicious silent intervals.

So I'm very tempted to conclude that the degree of sleep apnea varies greatly from night to night, or else I had apneas (or mostly hypnopeas) that I couldn't audibly detect.

I dunno. All I know is I want to get rid of this constant tiredness and yawning that's been putting a damper on my entire adult life. I was overjoyed when
I found that my sleep study showed severe apnea. I was in a state of euphoria initially thinking that finally, this was the cause of me being a zombie all the time.

Now, needless to say, I'm dissapointed because I don't feel any different.

larry63 wrote:So what I did was make a Pure-Data patch that recorded segments of x time every y. I don't remember what x and y where, but let's say x was 10 minutes and y was once per hour. (but maybe it was only once every two hours and I missed things).

This was all after a former experiment just using a micro-cassette recorder and having me play back the recording for myself

...

So, back to the experiment, now I have a bunch of sound files gathered through the night, and even though they were just 10 minute samples, I wasn't going to sit there and listen through an hour or more of snoring.

So really what I did was just load all of the files in Audacity (an open source sound editor), and look at the waveform compressed in the time domain
to where I could easily see the amplitude peaks in the snoring. And it was cool - I could set the time scale so what I could easily see a steady stream of snores.
Some seqments had snoring, some did not. But the ones that did, mostly had steady even snoring - i.e. if I looked at the waveform, the time distance between peaks was rather constant, with no suspicious silent intervals.

And you called BlackSpinner's post inflammatory when she called you a geek?


I'm not sure what I could say at this point that would be helpful, so I'll just bow out and let the smarter people respond.

Maybe instead of doubting the diagnosis, it's time to start analyzing the treatment and find out WHY you are not feeling better?

Does your machine allow you full print outs of the data? Why not post a few typical nights so we can see if the data shows anything that might explain why you are not feeling any differently? The numbers alone (AHI and leak rate) don't always tell the whole story.

larry63 wrote:

lbw wrote:My sleep study showed no REM cycles without CPAP. In the last 4 months I have started dreaming again. As well as my depression has improved, no need to take sleeping pills anymore. Overall just feel better. Used to be a really restless sleeper. Waking up frequesntly. Now barely move when I sleep. Diagnosed 4 month ago and haven't missed a night since.

Ah, we are exact opposites then. I had awesome dreams before the CPAP "treatment". Not anymore, except for one night (I woke up and I was like - wow man, I had a dream!). Mostly my memories of my nights are all the times when I wake up adjusting my mask. I really miss a good night's sleep.

It's likely that you are dreaming more now, but sleeping through the transitions back to other sleep stages, and consequently not remembering the dreams.

But for sure you need to find a mask that works for you. There's nothing like the aggravation of a bad mask.

LoQ wrote:

larry63 wrote:And rest assured, many, if not most, Linux users are generally not geeks.

Actually, they are mostly geeks. You may be different from the norm with Linux users, but BlackSpinner's assumption was quite reasonable, even if it turned out to be incorrect where you are concerned. I think you over-reacted. But all of us who are short of O2 are prone to that, so welcome to the hose crowd.

Ok, so I guess we agree to disagree on that point. I most definitely did not over-react. I was just countering a false stereotype.
Actually, most Linux users I know just simply want something free, that runs twice as fast as the MS alternative, and want to be
able to get help on the net-tubes when something goes wrong. Oh, and also where the file formats aren't proprietary and subject to
change at whim of the company.

I guess you haven't known anyone who bought a netbook or smartphone lately, huh? Guess what OS many of those run?

Now if you excuse me, I need to go catch up on my dungeons and dragons and star trek <- joke.

Cheers!

larry63 wrote:I most definitely did not over-react.

She wrote a light-hearted, welcoming post, in which she tried to connect with you. You rebuffed her and called her post inflammatory. That is over-reacting.

LoQ wrote:

larry63 wrote:So what I did was make a Pure-Data patch that recorded segments of x time every y. I don't remember what x and y where, but let's say x was 10 minutes and y was once per hour. (but maybe it was only once every two hours and I missed things).

This was all after a former experiment just using a micro-cassette recorder and having me play back the recording for myself

...

So, back to the experiment, now I have a bunch of sound files gathered through the night, and even though they were just 10 minute samples, I wasn't going to sit there and listen through an hour or more of snoring.

So really what I did was just load all of the files in Audacity (an open source sound editor), and look at the waveform compressed in the time domain
to where I could easily see the amplitude peaks in the snoring. And it was cool - I could set the time scale so what I could easily see a steady stream of snores.
Some seqments had snoring, some did not. But the ones that did, mostly had steady even snoring - i.e. if I looked at the waveform, the time distance between peaks was rather constant, with no suspicious silent intervals.

And you called BlackSpinner's post inflammatory when she called you a geek?


I'm not sure what I could say at this point that would be helpful, so I'll just bow out and let the smarter people respond.

Ah, I knew I had that one comming!
Sorry blackspinner!
I hope this is all in fun...

..And I'll try to stay more on topic..