CPAPtalk.com

Enchanter wrote:

49er wrote: Echanter, no one is against you. The issue is you have been told repeatedly that if the EEG reports you as having slept, then you did even if you think you didn't. I can understand you being skeptical initially but when everyone keeps saying the same thing, it is pretty obvious that perhaps you need to change your thinking.

I don't think you are troll by the way but you seem to have alot of trouble with inflexible rigid thinking that can get you into trouble big time. Something to be aware of.

By the way, I am not why you are even arguing about this since you were so concerned about not sleeping without a sleep aid. If someone had told me I slept when I was worried I hadn't, I would be very happy. And because you slept even though it obviously wasn't ideal, you have more options for the next go around than you think you do.

49er

Ok I'm sorry. Yes I was just skeptical and didn't know. I'm just confused. It was my first sleep study and I wanted answers right away. I'm just confused.

Understand. I see RobySue gave you some great advice in the other thread regarding communication on a forum and adjusting your thinking. Follow it to the letter and you will greatly improve.

Enchanter wrote:

robysue wrote: You spent the last week telling us how the OSA was "sucking the oxygen" out of your brain at night. Now that you've got hard data that says you are experiencing some serious O2 destats during your sleep, you want to ignore the data and say ""I was awake the whole time so it doesn't count". And that doesn't make any rational sense to me.

Yes that's true but at the same time didn't you say that I couldn't possibly know? Now it says I'm sleeping and I strongly strongly believe I remember the whole night beginning to end. And I trust myself, thought admit anything is possible.

At the time, we told you that you might indeed be having noturnal O2 desats and that you needed a sleep test to determine IF you were having them. I was telling you to describe your symptoms rather than your hypothesis.

And experiencing an O2 desat during sleep is not really the same as saying "I can feel the oxygen being sucked out of my brain."

My point is this: Before your sleep test you were sure that you had a problem with your O2 levels during sleep. (We did NOT question that possibility here; we did question the way you were chosing to describe your symptoms.)

And you were anxious that you would have "the best night's sleep in years" and that the test would be negative for OSA.

Now you have a test that verifies you have OSA and problems with your O2 levels during sleep, and all you want to do is argue. You keep telling us that you could not possibly have slept at all during the entire period, when there is solid evidence that you did indeed sleep for part of the night---there is no way the tech would have slapped a CPAP mask on your nose if you had never gotten to sleep.

But what if I'm losing just a little oxygen and it's not from OSA? It seemed like he was going to tell me what was going on but when it was time to go and I talked to him, he was being very secretive and acted like he knew nothing and wanted to talk about nothing. He just told me they'll give me a call. Like you said, that's his job.

It sounds like the tech realized he'd already told you more than he was supposed to and that you were pumping him for additional information that he legally could not tell you.

He didn't say I have OSA, he said that the test was so bad, that he can't determine anything.

Under no circumstances is the tech supposed to tell you (1)that you have OSA or (2) that you don't have OSA. Telling you that you have (or don't have) OSA is making a medical diagnosis, and it is illegal for the tech to do that.

Though he did say he'd put me on a CPAP mask if he finds I have OSA. But I asked him why he was putting the mask on me. I was confused, since I thought I hadn't slept.

You were confused because it was the middle of the night and you probably had been very lightly asleep shortly before the tech came in to put the mask on your nose.

He said that the CPAP can help me sleep. So I don't know if we were doing the first study or the 2nd study during that time. The whole thing is confusing.

A CPAP can help people sleep---if one of their problems is OSA. Whether they'll sleep very well during the titration study is another question.

As for what kind of test you had:

In many cases a patient suspected of having OSA is sent to the lab with the expectation that the first test will be just a diagnostic test---i.e. no CPAP will be applied regardless of what the data shows about the OSA. That way the doc has a full night's worth of data, including as much REM sleep as possible to look at when diagnosing the sleep problem. If the patient's data indicates that there is OSA, the patient comes back to the lab for a full night of titration.

But sometimes the patient's OSA is so severe---either in terms of the number of events or the severity of the O2 desats---that the patient meets the criteria for the diagnostic part of the test to be discontinued in the middle of the night and the tech comes in and slaps a CPAP mask on the patient's face and asks the patient to try to get back to sleep. There are stringent criteria that must be met in order for the tech to do this. It's not done on a whim and it's not done because the tech just "assumes" the patient might benefit from CPAP.

When the diagnostic part of the sleep test is ended in the middle of the night and the tech puts a CPAP mask on the patient, the test is called a split study. The first part of the night is the diagnostic sleep study; the second part is the attempt to titrate the patient. Once problem with split studies is that there is limited time to do the titration. And if the patient has real trouble getting back to sleep after being woken up by the tech to put the mask on? Then there's even less time to get the titration part of the study done.

When the tech told you he couldn't determine anything, he may very well have meant that he was unable to determine what your pressure level needs to be in order to control your apnea.

The general rule is you must sleep for at least 2 hours on a split or it don't get split.

AAST:

1.1 INDICATIONS FOR A SPLIT-NIGHT PAP TITRATION
A split-night PAP titration is indicated for patients who are diagnosed with severe OSA, which is defined as an AHI of at least 40 documented during a minimum of two (2) hours of diagnostic PSG. A split-night study may be considered in a patient with an AHI of 20 to 40, based on clinical judgment (3).

Although Medicare is stupid (but this garbonzo don't sound like he's Medicare):

If the AHI or RDI is calculated based on less than 2 hours of sleep or recording time, the total number of recorded events used to calculate the AHI or RDI (respectively) must be at least the number of events that would have been required in a 2 hour period (i.e., must reach ≥30 events without symptoms or ≥10 events with symptoms).

robysue wrote:

Enchanter wrote:

robysue wrote: You spent the last week telling us how the OSA was "sucking the oxygen" out of your brain at night. Now that you've got hard data that says you are experiencing some serious O2 destats during your sleep, you want to ignore the data and say ""I was awake the whole time so it doesn't count". And that doesn't make any rational sense to me.

Yes that's true but at the same time didn't you say that I couldn't possibly know? Now it says I'm sleeping and I strongly strongly believe I remember the whole night beginning to end. And I trust myself, thought admit anything is possible.

At the time, we told you that you might indeed be having noturnal O2 desats and that you needed a sleep test to determine IF you were having them. I was telling you to describe your symptoms rather than your hypothesis.

And experiencing an O2 desat during sleep is not really the same as saying "I can feel the oxygen being sucked out of my brain."

My point is this: Before your sleep test you were sure that you had a problem with your O2 levels during sleep. (We did NOT question that possibility here; we did question the way you were chosing to describe your symptoms.)

And you were anxious that you would have "the best night's sleep in years" and that the test would be negative for OSA.

Now you have a test that verifies you have OSA and problems with your O2 levels during sleep, and all you want to do is argue. You keep telling us that you could not possibly have slept at all during the entire period, when there is solid evidence that you did indeed sleep for part of the night---there is no way the tech would have slapped a CPAP mask on your nose if you had never gotten to sleep.

But what if I'm losing just a little oxygen and it's not from OSA? It seemed like he was going to tell me what was going on but when it was time to go and I talked to him, he was being very secretive and acted like he knew nothing and wanted to talk about nothing. He just told me they'll give me a call. Like you said, that's his job.

It sounds like the tech realized he'd already told you more than he was supposed to and that you were pumping him for additional information that he legally could not tell you.

He didn't say I have OSA, he said that the test was so bad, that he can't determine anything.

Under no circumstances is the tech supposed to tell you (1)that you have OSA or (2) that you don't have OSA. Telling you that you have (or don't have) OSA is making a medical diagnosis, and it is illegal for the tech to do that.

Though he did say he'd put me on a CPAP mask if he finds I have OSA. But I asked him why he was putting the mask on me. I was confused, since I thought I hadn't slept.

You were confused because it was the middle of the night and you probably had been very lightly asleep shortly before the tech came in to put the mask on your nose.

He said that the CPAP can help me sleep. So I don't know if we were doing the first study or the 2nd study during that time. The whole thing is confusing.

A CPAP can help people sleep---if one of their problems is OSA. Whether they'll sleep very well during the titration study is another question.

As for what kind of test you had:

In many cases a patient suspected of having OSA is sent to the lab with the expectation that the first test will be just a diagnostic test---i.e. no CPAP will be applied regardless of what the data shows about the OSA. That way the doc has a full night's worth of data, including as much REM sleep as possible to look at when diagnosing the sleep problem. If the patient's data indicates that there is OSA, the patient comes back to the lab for a full night of titration.

But sometimes the patient's OSA is so severe---either in terms of the number of events or the severity of the O2 desats---that the patient meets the criteria for the diagnostic part of the test to be discontinued in the middle of the night and the tech comes in and slaps a CPAP mask on the patient's face and asks the patient to try to get back to sleep. There are stringent criteria that must be met in order for the tech to do this. It's not done on a whim and it's not done because the tech just "assumes" the patient might benefit from CPAP.

When the diagnostic part of the sleep test is ended in the middle of the night and the tech puts a CPAP mask on the patient, the test is called a split study. The first part of the night is the diagnostic sleep study; the second part is the attempt to titrate the patient. Once problem with split studies is that there is limited time to do the titration. And if the patient has real trouble getting back to sleep after being woken up by the tech to put the mask on? Then there's even less time to get the titration part of the study done.

When the tech told you he couldn't determine anything, he may very well have meant that he was unable to determine what your pressure level needs to be in order to control your apnea.

Robysue. I want to ask you this. And it might sound dumb and wrong to others, but I need to know. Did he confirm I have sleep apnea? Because he didn't exactly say it, though there was some kind of implication that I do. He said that my oxygen was low. Is that really more than just a symptom of sleep apnea? But he didn't say that my airways were closed for more than 10 seconds. So it's not possible to just have low oxygen in general? Do I have sleep apnea for sure? My take was that lower oxygen for a short time just meant a sign of sleep apnea, but that they would need more tests.

See the thing is after wearing that mask, I started to think maybe it's better that I don't have sleep apnea because I did not like that thing one bit. It felt tight and I started to think I was gonna hyperventilate. And now I have to worry about things like getting sleep for the next test when I know I can't do that.

You know.. The guy said that his goal was to make sure i have sleep apnea and when I do, he'd wake me up and put a mask on me. So it didn't seem like he was trying to be discrete. That's all I'm saying.

Can I PM you? Do you respond to PMs?

I am sorry, but what part of "You have to ask the doctor for a diagnosis" do you not understand?! You can call the doctor's office in the morning. He can pull the results up on his computer. You are jumping to all kinds of unwarranted conclusions based on the flimsiest of reasons. Please, calm down. Put it out of your mind. Watch TV. Play a video game. Take a nap. Call the doctor's office in the morning and ask what the results were and/or make an appointment with the doctor.

Enchanter wrote: Robysue. I want to ask you this. And it might sound dumb and wrong to others, but I need to know. Did he confirm I have sleep apnea?

you know, robysue is good, but I really doubt that she can read the mind of the sleep tech that you had last night.

why don't you leave her alone a little and do what yaconsult suggested?

palerider wrote:

Enchanter wrote: Robysue. I want to ask you this. And it might sound dumb and wrong to others, but I need to know. Did he confirm I have sleep apnea?

you know, robysue is good, but I really doubt that she can read the mind of the sleep tech that you had last night.

why don't you leave her alone a little and do what yaconsult suggested?

I know. It's just that on one of her posts she said I had OSA. She doesn't have to tell me, I just thought about asking.

Enchanter wrote:

palerider wrote:

Enchanter wrote: Robysue. I want to ask you this. And it might sound dumb and wrong to others, but I need to know. Did he confirm I have sleep apnea?

you know, robysue is good, but I really doubt that she can read the mind of the sleep tech that you had last night.

why don't you leave her alone a little and do what yaconsult suggested?

I know. It's just that on one of her posts she said I had OSA. She doesn't have to tell me, I just thought about asking.

how would she *know*? ask yourself that.

she might *assume* you likely have it, based on the behavior of the tech, but .... how could she KNOW?

palerider wrote:

Enchanter wrote:

palerider wrote:

Enchanter wrote: Robysue. I want to ask you this. And it might sound dumb and wrong to others, but I need to know. Did he confirm I have sleep apnea?

you know, robysue is good, but I really doubt that she can read the mind of the sleep tech that you had last night.

why don't you leave her alone a little and do what yaconsult suggested?

I know. It's just that on one of her posts she said I had OSA. She doesn't have to tell me, I just thought about asking.

how would she *know*? ask yourself that.

she might *assume* you likely have it, based on the behavior of the tech, but .... how could she KNOW?

Well I thought she said it, but fine. what I want to know is does low oxygen mean you have it?

Enchanter wrote:Well I thought she said it, but fine. what I want to know is does low oxygen mean you have it?

WAIT FOR WHATEVER DATA THERE IS TO BE RELAYED TO YOU!

stop pestering everybody to guess what that data says.

because, no matter how good robysue is, (and she IS good), as well as everybody else,

WE DO NOT HAVE THE DATA... the best we can do is make a GUESS based on past experience.

wouldn't you rather KNOW? then WAIT.

Low oxygen can mean other things, too.
Let's just hope it's just apnea.

Enchanter wrote:

palerider wrote:

Enchanter wrote:

palerider wrote:*PLEASE* put aside what you think you know, and LISTEN, REALLY LISTEN to Robysue.

everything she's telling you is correct.

you may not want to believe it, but it is all 100% correct.

Yea but isn't it possible for the brain to be asleep, but the mind to be fully awake? Or are they the same thing?

All I'm gonna say is that I remember being awake the whole time. After all, the guy did say that the test was no good and there was barely any sleep.

no, it's not.

for heavens sake, listen to yourself, quit desperately clawing at anything to justify what your mistaken ideas are.

before cpap, I used to fall asleep watching TV, I wouldn't remember falling asleep... (nobody remembers falling asleep, no matter what YOU think), and my friends would yell at me "WAKE UP, YOU'RE SNORING!" and I'd *swear* that I was awake the whole time, yeah, so I closed my eyes.

funny thing though, when I'd watch that show again, there'd be big chunks of it that I didn't remember BECAUSE I'D FALLEN ASLEEP!

if you start recording something a movie on your phone, and you pause it, and then start recording again, DOES IT REMEMBER being paused? no. and if you were recording something that was still, like a wall, you'd not be able to tell, looking at the playback, that it'd ever been paused. but if you were recording a clock, you'd see the time jump forward.

your memory of being awake/asleep is *LESS* reliable.

Then they could be right. But I'll tell you I felt as awake as I feel at any point in the day. There may have been some yawns, but I feel as if I remember EVERY moment and was never truly asleep. I remember all the tossing and turning. I remember struggling to fall asleep. I believe that other people do fall asleep and think they woke up. What I'm saying is this.. I was really alert the whole time. I don't think that I was even close to being asleep. How can this be? I think that it might come down to semantics. Being technically asleep might be something different than what I think sleep is. I was just technically asleep based on the numbers or patterns. My brain reached a certain status that showed up on the computer, but I was still there. Maybe I'm wrong, but it sure doesn't feel like it. Like I don't believe I was awake. I know I was. I'm not saying the tests were wrong. I think it just comes down to semantics and what the definition of sleep really is.

"I never had sexual relations with that woman!"

Enchanter wrote: Robysue. I want to ask you this. And it might sound dumb and wrong to others, but I need to know. Did he confirm I have sleep apnea?

The tech cannot legally confirm that you have OSA. Nor can he legally confirm that you do not have OSA.

But the fact that he slapped a CPAP mask on you in the middle of the night is pretty compelling circumstantial evidence that you both slept more than you thought you did in the first part of the night and that you do have OSA. In other words, if I were a betting man instead of a teetotaling middle aged female math prof, I'd be betting big $$ on "You have OSA that's pretty severe."

Because he didn't exactly say it, though there was some kind of implication that I do. He said that my oxygen was low. Is that really more than just a symptom of sleep apnea? But he didn't say that my airways were closed for more than 10 seconds. So it's not possible to just have low oxygen in general? Do I have sleep apnea for sure? My take was that lower oxygen for a short time just meant a sign of sleep apnea, but that they would need more tests.

The tech is NOT a doctor. He is in no position to diagnose you with any kind of medical condition. However, he must have seen something that met the stringent criteria for the study to become a split study and put the CPAP mask on your face. And since the data that the tech is interested in looking at is your sleep data, I would not expect him to react to anything in the data when you were awake---except, perhaps, to ask you if you wanted to abandon the test all together because it was 3:00 AM and you hadn't gotten to sleep at all since 11:00pm.

Besides---if the tech was seeing an alarming drop in your waking O2 levels, that would NOT be something to be addressed by slapping a CPAP on your nose. My guess is that if a tech saw alarming wake O2 levels, they'd be inclined to tell you that you need to see a plumnologist about a potential lung problem with your overall O2 levels, including your wake O2 levels. But you've already had a spirometry test that was normal AND your own description of your exercise regime indicates that you do NOT have any problem maintaining your O2 levels when you are awake.

But he didn't say that my airways were closed for more than 10 seconds. So it's not possible to just have low oxygen in general? Do I have sleep apnea for sure? My take was that lower oxygen for a short time just meant a sign of sleep apnea, but that they would need more tests.

The tech is NOT going to discuss the particulars of what your data showed with you. He's not supposed to do that and he could lose his job if he did that.

But---You've have the test for OSA---it was the sleep test. And you need to wait to see the results. Once again, you're building up scenario after scenario in your mind when you need to simply slow down and wait until you see what the results on the sleep test actually were.

If you got enough sleep for a split study to be done, then look at the data in the sleep test report: The sleep test report will tell you exactly how many OAs and how many Hs were scored during your diagnostic sleep period. It will also tell you how long it took you to fall asleep, how many times you woke up, and how long you were awake each time you woke up. And until you have the sleep study report there's no much use in speculating on what it's going to say.

That said: The fact that the tech came in and put a CPAP mask on your nose in the middle of the night is very compelling circumstantial evidence that the diagnostic part of your sleep test was pretty unambiguous about whether you have OSA.

See the thing is after wearing that mask, I started to think maybe it's better that I don't have sleep apnea because I did not like that thing one bit. It felt tight and I started to think I was gonna hyperventilate. And now I have to worry about things like getting sleep for the next test when I know I can't do that.

Sure it would be great if you don't have OSA. But then you're back to square one on trying to find a reason why you feel as bad as you do. And your symptoms (or what I can make out about them) point to OSA as being a very good candidate for what's wrong with you.

Almost NO-ONE wants to entertain the thought of sleeping with a six foot hose on their nose for the rest of their life. Particularly at the start of the adventure. Almost NO-ONE finds the mask comfortable at the beginning. And a lot of people feel as though they're going to hyperventilate when they first put a CPAP mask on their nose.

But you have to deal with the hand of cards that life has dealt to you. It's your choice how you chose to play those cards.

Real story: My diagnostic test and my titration tests were almost a month apart. I got a call from the sleep doc's office a few days after the diagnostic test confirming that I did have moderate OSA and that at my scheduled appointment in two weeks the doc would talk to me about the results and that a titration study would be scheduled at that time. I spent that month whining to my hubby about how I did not want to sleep with a mask on my nose. I howled about how uncomfortable I thought the CPAP was going to be. And how unfair it was that I had this hideous condition. Hubby politely, but persistently continued to tell me that I needed to take care of myself, and this was required to do that.

My titration study came. And it was (up to that point) the absolute worst night of sleep I'd ever gotten in my entire life. (Since then, I've had a few more nights from that same hellhole, some of which were on other, additional titration studies. There's just no way to make a sleep study comfortable for me.) And I woke up feeling queasy because of the air pressure in my stomach, that I now know to call aerophagia. By that time I'd discovered this forum and another one. I was beginning to learn about my condition. I was smart enough to pick up on the idea that I needed a full data machine. And when the call came from the doc saying they wanted to fax the script to DME X, I balked. I said I wanted to investigate DMEs a bit more before buying the machine. And that started a three week quest to find an in-network DME that would sell/set me up with a Resmed S9 AutoSet. And the doc's office kept nagging me about letting them fax the script to DME X, which I already knew was going to set me up with an S9 Escape because I'd already talked to them on the phone. Hubby finally told the doc's office to stop pestering me or that we'd go to a different doc. And that month, I continued to whine to my hubby about how I did not want to sleep with a mask on my nose. And I howled about how uncomfortable I thought the CPAP was going to be. And how unfair it was that I had this hideous condition. Hubby politely, but persistently continued to tell me that I needed to take care of myself, and this was required to do that.

On September 23, 2010, the S9 moved into my bedroom. And within a week I was more miserable than I'd ever been in my entire life. By that point, not only was I whining to Hubby about how awful I felt, I was also regularly posting here about my misadventures in Hosehead land. By Night 3, the Insomnia Beast had moved into the bedroom along with my PAP. It took me three months to admit that I needed professional help in taming the Insomnia Monster. It took another 3-4 months to admit that I needed some professional help in dealing with anger management because the anger I had towards Kaa (my BiPAP) and my OSA was taking over my whole life. It took five months of CBT-Insomnia before my first sleep doc ordered the PA who was treating me to fire me as a patient. It took hiring and firing two additional sleep docs before I found one who I could work with. (The psychiatrist that I was set up with by my then headache doc was critically important in helping me get the courage to fire the unhelpful sleep docs AND my PCP whom I was having trouble with AND the headache doc who referred me to hime as well. That psychiatrist still sees me every six months, and he's been golden in helping me get to deal well with my doctors.)

The point of this is not to scare you further: I had an exceptionally long and hard adjustment to CPAP. Most people do adapt to wearing the mask in a few weeks and they start to feel better within a few months of starting to PAP---if they don't give up too soon. In other words, you need to realize: Whatever is going to happen is going to happen.

It's highly likely that you do have OSA. And if you have OSA you have a choice: You can either chose to deal with it and work as hard as you need to to make CPAP work for you. Or you can go into denial and either refuse CPAP or abandon it shortly after you start; and then run the risk of serious OSA-induced problems later on in your life along with continuing to feel as bad as you currently do right now. Second guessing the diagnosis (when you get it) is the first step down the path to denial and giving up on CPAP before it has a chance to make a positive difference in your life.

You know.. The guy said that his goal was to make sure i have sleep apnea and when I do, he'd wake me up and put a mask on me. So it didn't seem like he was trying to be discrete. That's all I'm saying.

Yeah, but in the morning he cannot tell you what the official diagnosis is. He can tell you that if the data clearly indicates you have a bad enough case of OSA that he will wake you up and put a mask on you. But come morning, he ain't going to tell you anything more. Because if he did, he might lose his job.

Can I PM you? Do you respond to PMs?

You can PM me, but most of the time I prefer to keep my posts public.

I'm surprised that you were adamant about not wanting to wear it. Your hubby did you a good favor. I sent a PM to you over something specific because right now there are a lot of things up in the air.

robysue - I swear you have the patience of Job and the wisdom of Solomon. We are so lucky to have you! Thanks for being here and for helping people out!