Sleep apena misdiagnoses?

and get them to read your card for you... and give you a report of the details.

Alshain wrote: I'm really just asking around to see if anyone else had any similar experience, unfortunately I guess if they did they would have stopped visiting these forums, but I can't find any information false positive diagnosis of apnea (there is plenty of false negative diagnosis) and so I was going out on a limb.

First, if you read through enough postings here over a long enough time frame, you'll find that there's actually a whole bunch of us that have taken longer than 6 months to start feeling better on xPAP. Some are still actively working on trying to make xPAP work for them (including me) after being 6, 7, 8, or more months into treatment. Some are not sure that they'll ever actually feel better subjectively, but know that they must stick with therapy night after night because they know what their serious desats will do to their bodies if they don't. And some have successfully figured out how to make xPAP work for them---in the sense of feeling genuinely better on most days afterafter many, many months or even years of very hard work in tracking down leaks, switching masks frequently until finding one that works and is bearable, tweaking pressures, addressing aerophagia issues, and dealing with the insomnia that often comes with ineffective or highly uncomfortable treatment.

Now, as far as false positives for OSA on sleep tests. Mathematically speaking, of course there's always a positive probability of a false positive. However, in the case of OSA, that positive probability for a false positive test result really is very tiny and is almost equal to zero. Why? Well, the data that goes into diagnosing the disorder literally consists of dozens to hundreds of recorded respiratory events that are cross matched to the EEG evidence to make sure that these events take place when you are genuinely asleep. The AASM has strict guidelines on scoring apneas and hypopneas and the data for each sleep test is recorded and physically exists somewhere in the form of a DVD. Lab techs are not going to willy-nilly score things as apneas or hypopneas if they don't meet the criteria for scoring: If they did, they'd be in danger of losing their job. So---if your diagnostic study showed that you had SEVERE or MODERATE OSA, it's highly unlikely that enough mistakes were made in scoring the respiratory events to result in a false positive.

Now there are a couple of provisos to the above:

Proviso 1: A given person's untreated OSA is not equally bad on every single night. We all have some nights that are better or worse than other nights. So it's possible that someone with very, very mild OSA (say a diagnostic AHI between 5 and 10) might actually not really have much of an apnea issue except on the worst nights. In other words, they might have an AHI = 6 on one night and an AHI = 3.5 on another. So being diagnosed might be hit or miss in that case. But you've posted nothing that leads me to believe that your diagnostic AHI was below 10.

Proviso 2: A given person may have UARS, but if the lab scores hypopneas using the Alternative Standard, the patient's RERA data may wind up being scored a bit aggressively as hypopneas with arousal. So the UARS person winds up with a diagnosis of OSA instead of UARS. But regardless of what the condition is called, the first line treatment is still the same: Try xPAP first because it will work to eliminate the flow limitations that lead to the RERAs and hypopneas with arousal ---if the patient can learn to tolerate the machine. For some UARS patients with so-so insurance, being diagnosed with OSA instead of UARS may turn out to be a blessing in disguise because not all insurance companies will authorize an xPAP for all UARS patients. By the way, that Alternative Standard for scoring hypopneas requires a flow reduction > 50% for at least 10 seconds AND (an arousal or a 3% drop in O2 saturation).

So to properly evaluate the probability that some kind of mistake might have been made in scoring your sleep studies, you need copies of the dictated results AND the summary data with the condensed graphs. Once you have this data in front of you, you can actually figure out how many actual apneas and hypopneas were recorded by the equipment and scored by the tech who scored your data. If your sleep test shows several hundred apneas and hypopneas recorded during five or six hours of sleep, you know you've got a problem, and it ain't likely to be a false positive diagnosis for OSA. On the other hand, if your sleep test only shows a couple dozen respriatory events over the course of five hours or more of sleep, then it's well worth talking to the doc about exactly how the diagnosis was arrived at. And maybe getting a second opinion. But be aware, that second opinion could easily be a diagnosis of UARS, and xPAP will likely still be recommended.

So request copies of your studies. Study them. And post the data here if you need help interpreting it.

If the test was done right, it can clearly show sleep apnea, no if's, and's, or but's. It's also possible it shows borderline apnea, or is inconclusive. I don't know what the case was with your study.

If you really have apnea, and it's bad enough, you are probably damaging your organs even if you have no symptoms of sleep apnea. It's possible the symptoms you are having are due to something other than sleep apnea, but that apnea is still slowly killing you.

Do you really have the ancient "legacy" REMstar machine listed in your profile? Does it look like the picture? Does it say "M series", or Philips on the top anywhere? Some of the other machines will give you more info.

I do not believe that the doctor has to give the DME a description of the particular mask. The DME should be able to change it out for you. Try another mask. If you have trouble with the DME giving you one ask them what exactly is the problem with getting a better fitting mask. If for some odd reason you need something from the doctor's office, talk to the nurse about what you want. Get to know the nurse, they can be very helpful.

Ask the DME to show you what information you can get off of your machine. Even if you do no have software the DME should be able to print a report for you to take to your doctor. Ask for the report.

I have found that the barley hull pillow works pretty good for accommodating the mask.

The good Pap pillows are expensive (not the Target ones) but then what is your life worth?

Well the last few days I've actually been feeling pretty good (that rare 25% of the time) so I decided to try stopping the machine last night while I felt good, (where as before I stopped while I already felt bad) and today the ice pick headaches have come back, though I'm not really tired. Of course it is also my first day back at work and all the symptoms are usually better on the weekends anyway. I don't know, I may have to figure out what else is wrong before I can accurately decide if the CPAP is doing anything or not. The problem is, at the current rate I may never figure out what else is wrong.

Back on the mask.. I used to have a Fisher and Paykel mask (the one that goes under the chin) and I liked the fitment of that mask, except the forehead piece which was a complete deal breaker. Is there anything similar but with a better forehead brace?

Julie wrote:The good Pap pillows are expensive (not the Target ones) but then what is your life worth?

The Target ones were made by Contour.

EDIT: This one
http://www.contourliving.com/p-71-conto ... illow.aspx

Everyone told me it wasn't good.

cflame1 wrote:and get them to read your card for you... and give you a report of the details.

I don't think they know how. I asked them about that once before when I went in for an appt. and they said they never use them.

Would you please take the time to click on the machine you have chosen in your profile at the bottom of your posts?
Tell us if it visually looks like what you have chosen. That machine has been discontinued many years now.

robysue wrote:

Alshain wrote: I'm really just asking around to see if anyone else had any similar experience, unfortunately I guess if they did they would have stopped visiting these forums, but I can't find any information false positive diagnosis of apnea (there is plenty of false negative diagnosis) and so I was going out on a limb.

First, if you read through enough postings here over a long enough time frame, you'll find that there's actually a whole bunch of us that have taken longer than 6 months to start feeling better on xPAP. Some are still actively working on trying to make xPAP work for them (including me) after being 6, 7, 8, or more months into treatment. Some are not sure that they'll ever actually feel better subjectively, but know that they must stick with therapy night after night because they know what their serious desats will do to their bodies if they don't. And some have successfully figured out how to make xPAP work for them---in the sense of feeling genuinely better on most days afterafter many, many months or even years of very hard work in tracking down leaks, switching masks frequently until finding one that works and is bearable, tweaking pressures, addressing aerophagia issues, and dealing with the insomnia that often comes with ineffective or highly uncomfortable treatment.

Now, as far as false positives for OSA on sleep tests. Mathematically speaking, of course there's always a positive probability of a false positive. However, in the case of OSA, that positive probability for a false positive test result really is very tiny and is almost equal to zero. Why? Well, the data that goes into diagnosing the disorder literally consists of dozens to hundreds of recorded respiratory events that are cross matched to the EEG evidence to make sure that these events take place when you are genuinely asleep. The AASM has strict guidelines on scoring apneas and hypopneas and the data for each sleep test is recorded and physically exists somewhere in the form of a DVD. Lab techs are not going to willy-nilly score things as apneas or hypopneas if they don't meet the criteria for scoring: If they did, they'd be in danger of losing their job. So---if your diagnostic study showed that you had SEVERE or MODERATE OSA, it's highly unlikely that enough mistakes were made in scoring the respiratory events to result in a false positive.

Now there are a couple of provisos to the above:

Proviso 1: A given person's untreated OSA is not equally bad on every single night. We all have some nights that are better or worse than other nights. So it's possible that someone with very, very mild OSA (say a diagnostic AHI between 5 and 10) might actually not really have much of an apnea issue except on the worst nights. In other words, they might have an AHI = 6 on one night and an AHI = 3.5 on another. So being diagnosed might be hit or miss in that case. But you've posted nothing that leads me to believe that your diagnostic AHI was below 10.

Proviso 2: A given person may have UARS, but if the lab scores hypopneas using the Alternative Standard, the patient's RERA data may wind up being scored a bit aggressively as hypopneas with arousal. So the UARS person winds up with a diagnosis of OSA instead of UARS. But regardless of what the condition is called, the first line treatment is still the same: Try xPAP first because it will work to eliminate the flow limitations that lead to the RERAs and hypopneas with arousal ---if the patient can learn to tolerate the machine. For some UARS patients with so-so insurance, being diagnosed with OSA instead of UARS may turn out to be a blessing in disguise because not all insurance companies will authorize an xPAP for all UARS patients. By the way, that Alternative Standard for scoring hypopneas requires a flow reduction > 50% for at least 10 seconds AND (an arousal or a 3% drop in O2 saturation).

So to properly evaluate the probability that some kind of mistake might have been made in scoring your sleep studies, you need copies of the dictated results AND the summary data with the condensed graphs. Once you have this data in front of you, you can actually figure out how many actual apneas and hypopneas were recorded by the equipment and scored by the tech who scored your data. If your sleep test shows several hundred apneas and hypopneas recorded during five or six hours of sleep, you know you've got a problem, and it ain't likely to be a false positive diagnosis for OSA. On the other hand, if your sleep test only shows a couple dozen respriatory events over the course of five hours or more of sleep, then it's well worth talking to the doc about exactly how the diagnosis was arrived at. And maybe getting a second opinion. But be aware, that second opinion could easily be a diagnosis of UARS, and xPAP will likely still be recommended.

So request copies of your studies. Study them. And post the data here if you need help interpreting it.

This is a lot of good info, thank you for taking the time to write all that. By the way, I seem to remember him saying something about "22" after my sleep study. I think he said that was the number of times I woke up per hour, but he didn't give me that in writing and back then I didn't know what he was talking about to even ask. Based on my understanding that would be a moderately high AHI? Still trying to get the records.

Pugsy wrote:Would you please take the time to click on the machine you have chosen in your profile at the bottom of your posts?
Tell us if it visually looks like what you have chosen. That machine has been discontinued many years now.

Yes it is. It's a long story but suffice to say, my machine is a hand-me-down. I'm working on a budget and when a friend offered to give me his older machine that still worked perfectly I took the opportunity. My local DME tested it's pressure output... I seem to remember the word "Cadillac" used at the time.

Alshain wrote:Yes it is. It's a long story but suffice to say, my machine is a hand-me-down. I'm working on a budget and when a friend offered to give me his older machine that still worked perfectly I took the opportunity. My local DME tested it's pressure output... I seem to remember the word "Cadillac" used at the time.

Understood.
Yes, back when it was first introduced it was the Cadillac of the Respironics machines.
Just wanted to confirm because we frequently see this chosen in error.

Now it's a Vintage Cadillac!

Do you recall them saying anything about oxygen desaturations?

It's still a perfectly good machine and has been my backup one for a long time.

Alshain wrote:I'm really just asking around to see if anyone else had any similar experience, unfortunately I guess if they did they would have stopped visiting these forums, but I can't find any information false positive diagnosis of apnea (there is plenty of false negative diagnosis) and so I was going out on a limb.

Perhaps that is a false alternative?


In any event, it is common for people to feel worse when they first begin treatment. Some people feel instantly better, but others feel worse or no better or only slightly better. My own story is that it took me nearly 3 years to get to where I felt even halfway normal. Series of baby steps, and a huge number of things had to be figured out and solved to make that happen. I may still find ways to improve how I feel.


Of course, that doesn't mean you have been correctly diagnosed. I am really just trying to give you some perspective on sleep medicine, a field which is in its infancy. Many patients MUST become their own doctors, in effect, in order to get more effective therapy. And it could take months or even years of working on problems to get to where you feel better--it did me. Only you can decide if there is potential with xPAP therapy to make you feel better.