Panic at thought of CPAP.

[Snoopchic]

Sorry, I forgot. He also said he's sure I have other sleep issues, but it not willing to do anything until after I have spent crazy money on this. More of what leads me to believe what a scam it is. What's stupid is I'm not a negative person by nature, I just hate being taken advantage of. So, I'm back to not sleeping at all at night, and falling asleep while driving :/ I hope they all feel good about it, and taking $300 of my money for nothing.

[Julie]

Hi - If you did pay (in the end) $500 for the test regardless of how it went, wouldn't $50 (what the hell) at this point - might as well go for it now - be worth it if it helped? Good money after bad and all that, but CBT is SO the therapy I would want to see happen with you - it's quite amazing... a short term fix with long term results, and it's not done TO you, but BY you once you're told how to do it - not hard at all... and just a bit of it before the test might have made all the difference.

I'm sorry you had such a bad time, but no one set out to torture you, but help with a problem you say you have... not exactly their fault after all. A little perspective on things might be in order, rather than so much negativity and drama. You're not the first person to have to put on a lousy plastic mask to help them breathe, maybe live a lot longer, but while we appreciate that you really, really have a huge problem with it, the wall you put up between you and help for it (and I mean the phobia, not Cpap) is pretty big. Why not make some effort (not the lab or mask) to deal with it once and for all, to learn how to make it go away"?

[robysue]

Snoopchic,

I understand: This was the worst night of your life subjectively. For what it's worth, my first titration test was at the time, the worst night of my life ever (subjectively). It was topped on "worst nights" by a second titration test a few months later, by the way. But I'm still here PAPing away every night 5.5 years later.

You need to objectively look at the data that was gathered on the test. Once you finally got to sleep, you had far few apneas than you had in a similar amount of sleep on the diagnostic test. That's what the doc means when he says your sleep improved. And by the way, taking sleeping pills usually makes OSA worse---i.e. taking a sleeping pill usually increases the number of events rather than decreasing them.

Of course, right now you refuse to believe anything anybody tells you.

But to reiterate: CPAP is NOT a scam.

You have OSA, but you have not told us what your diagnostic AHI was, so we don't know just how bad your OSA actually is. But you refuse to believe that you have OSA. And you refuse to believe that you could get the help you need to learn how to use the damn life-saving CPAP.

It really is your choice

You can continue to deny the OSA and avoid CPAP. And slowly but surely, you'll get sleepier in the daytime. And your night time sleep will continue to worsen. And eventually (in 5, 10, 15, or 20 years), you'll develop one or more co-morbid conditions that could have been avoided. Conditions like drug resistant high blood pressure. Or congestive heart failure. Or you'll have a stroke. Or you'll fall asleep at the wheel and cause a car crash.

Or you can accept that you do have OSA and figure out a way to actually treat it. Given your problems with things touching your face, you will need help to conquer that fear in order to get comfortable with CPAP. The doc's suggestion of a CBT journal is NOT crap. But you don't want to do it.

I do have one final pair of questions: Why did you go for the first diagnostic sleep test in the first place? And what were you hoping the diagnosis would be?

[palerider]

[quote="Snoopchic"Now the whole test is a total waste.[/quote]
the whole thing is a total waste *cough*enchanter*cough*

[Julie]

And just this if it's needed... do you not think that if there was an easier way, but of necessity as effective, to help get the baseline stats on your sleep someone would have set you up for it? Do you think all the rest of us LIKED being tested even if our reaction was less extreme?

IF IT WAS a scam, wouldn't they design a more user friendly one that even more people would want to flock to? How about a freebie? Or something like a 1 second blood test?

[robysue]

Sorry, I forgot. He also said he's sure I have other sleep issues, but it not willing to do anything until after I have spent crazy money on this.

For MOST people with OSA and other sleep issues, treating the OSA usually improves the other sleep issues. Particularly if the other sleep issues involve insomnia. Untreated OSA is a major cause of insomnia.

And for MOST people with OSA, treating the other sleep conditions before treating the OSA is like putting a bandaid on a cut on your knee when the real problem is that you've broken your leg.

What I mean by that is this: Treating the other sleep conditions without treating the OSA usually does NOT improve the daytime functioning or the health of the patient. Fact is, the OSA is the elephant in the room that's causing the largest number of problems. If you don't treat that, none of the other sleep problems can be effectively treated.

More of what leads me to believe what a scam it is. What's stupid is I'm not a negative person by nature

ALL of your posts have been filled with negativity. I'm usually very patient. I remember how devastated I was by my own OSA diagnosis. But here's the thing: You are deep in denial about more than just your OSA diagnosis. And you're now claiming that the gold standard treatment for a fairly common chronic health problem is a scam. And that's just plain wrong.

I just hate being taken advantage of.

I wrote a long and thoughtful post earlier on this thread explaining to you that you are NOT being taken advantage of. You're still angry that they didn't continue to the narcolepsy test, aren't you? What you really were hoping is that there would be a magic pill that you could take to solve all your sleep problems. Well guess what: There ain't no such pill. Even for narcolepsy.

So, I'm back to not sleeping at all at night, and falling asleep while driving :/ I hope they all feel good about it, and taking $300 of my money for nothing.

How about you think about all the people you are endangering by falling asleep while driving? WHEN you cause a car crash, how much money will it cost? And what about the pain and suffering it will cost?

If you're not going to treat your OSA, then at least do us all a favor and DON'T drive.

[Snoopchic]

Amazingly (sarcasm) he did NOT tell me what my rates were for the titration test. For my first test he said I had apnea 23 times (I NEVER STOPPED BREATHING, just the slowing) and that ONCE my oxygen dropped to 83%, Both of these are moderate, and I get that, but he did have ANY of the numbers from the titration test (even though I told them I was only coming in if they had them!!) The ONLY thing he was going off of was the stage 3 sleep, which went from 11% to 30%, great, but who knows what caused it!?! I simply went to see the doctor, and to the test to see what was wrong, and had I known going into it that a machine would be $800 after buying all the crap, because JUST the machine would cost me $500, I never would have even considered going. I feel totally taken advantage of. HE KNEW HOW MUCH THEY WERE, when I called the people that sell that crap, she LAUGHED when I said he didn't know, she said "We do these all the time for him, he knows exactly how much they cost patients." Which makes it 100 times worse. Anyway, I just simply want to be awake during the day, but do not see a way for that to happen. He refused to even offer any other treatment options, again, screams scam to me!! WHY WHY not offer other options. There is no point in my life I would EVER spend $50 for this stupid CBT thing, when I can read all sorts of things online. I tried everything non panic thing I can find, and still screamed and couldn't breath when I had to look at one of those horrid things. If they wanted people to have the info to help them, then they wouldn't be charging $50, but hey, that's just more money in their pockets. I did the study somewhere in Oklahoma City, but have no idea where it is. They lady was nice, and sat with me and did help me stop freaking out. And that was good on her!

[palerider]

my first test he said I had apnea 23 times (I NEVER STOPPED BREATHING

fun fact: when you're drifting off to sleep, THEY CAN TELL because they have wires monitoring your brain waves,

YOU CANNOT TELL, because the brain is crap at remembering when you wake up and when you're asleep, it neatly stitches the awake bits together and you don't have any memory of the parts where you dozed off. FACT!

[Julie]

You don't get it - it's NO one else's fault that you have either apnea OR your phobia. NO one else's. And the doctor was just trying his best (I like to think) to get you tested and treated. The machines cost what they cost - they're not toys and require knowledge and other equipment to put together, plus be safety tested up the wazoo before being sold. They're extremely sensitive to your breathing (or could you make a much cheaper version?) and then respond appropriately to it, whoever you are. Do you yell at the car salesman because cars are expensive?

You will always feel cheated and taken advantage of in life when you don't understand things or fear them.. which is why a little learning, education can make a huge difference... once you know something, you'll feel less anxious, more in control and proactive, not just REactive, which is what you're doing now. You'll be able to make informed decisions about things, not just scream and flail around... sometimes that means having to do a little hard work at the beginning, but it's usually worth it.

[chunkyfrog]

What stage would this be?
Looking at how early the OP is on the Kubler-Ross model,
it's going to be a loooooong, painful ride.
Oh! This looks like my stop.

[Snoopchic]

I DO tell car sales men's when they are too expensive. We paid $3000 for both of our last 2 cars, because we have no desire to pay full price for a car. What ticks me off is him REFUSING other options. I totally understand apnea, I get the whole thing. I never said there wasn't signs, what I said was that I didn't stop breathing, and I also did not say I was awake the whole time (I have no idea where you got that?) In the first test I watched my watch for 2 hours, and they claimed I slept at 9 mins. (The lady showed me the entire study, and that what they called "asleep" was for a second or so before I woke up again, so all good, tell me I "fell asleep in 9 minutes" but it's crazy to call that falling asleep, but whatever they want to say! I get that's its "technically asleep" but, it's for a second) I am not angry at anyone about it, I am angry that they are a huge rip off. And I'm angry that they were not up front with cost, as I NEVER would have even done testing. I'm angry that my doctor will ONLY offer one device, and one option. I'm angry about the fact that I cannot find one bit of evidence that apnea CAUSES any issues, I see, and hear a lot of "MAY CAUSE" which is again, a scare tactic. I UNDERSTAND that I'm tired every day, but I feel so much worse today after that horrid thing smashing my face and choking me all night and causing a MASSIVE migraine. But, still, I'm not angry about apnea, I just feel like there is no proof that it's causing anything, and to "test" to see if you would feel better it costs ANOTHER $500 on top of everything else, because you have to buy this crap then use it for 6 weeks before he's even willing to talk about anything else. Roughly 50% of people that start down this road quit because it's such torture, yet, he insists I spend that money to "test" the idea for 6 weeks. There is no way I would have ever agreed to even do the study when it comes to prices like that. I totally feel like he feels he must push his machine, his CBT and all this crap. But, I still am not angry about apnea it's self, just feel like they are making it something it's not. I did not come back here to argue, I just wanted to let everyone know that there is no way I would be willing to waste my time with that kind of money.

[Gasper62]

Snoopchic, I have a question and a suggestion for you. Do you allow the bed or a a pillow to touch your face when you sleep ? If this therapy and equipment is so abhorrent & insurmountable for you, maybe you should just give it a pass and try psych therapy/etc. for a while, and maybe come back to it later.

[chunkyfrog]

Seriously, CBT might help. You should give it a shot.
Oh, shit! Now I have to walk back five blocks.

[Snoopchic]

I have been to therapist before with bad results. First was in college, and I had a lot going on (house just burned down, my friend was sleeping with my dad, and several other things) ANYWAY, She said I was not having any issues, and to not come back. I went to one my neuro sent me to because I have OCD and she was convinced it caused me anxiety, which it didn't, and that lady saw me once and said she didn't think I needed to do anything. I chose to see one because I felt like I was being too hard on my daughter, and that lady told me I wasn't, and that my daughter was really smart. AND told me I don't have OCD because I don't think horrible things will happen if I don't do whatever OCD thing I have (usually it's counting) ANYWAY, I haven't ever had a good feel for anything psyc because it tends to cause me more panic and stress when I try to do it. Since I'm always so focused on it, it's always going wrong. I don't care for any therapist around, and with my past experiences they always blow me off, and make me feel like a stupid person for even coming in. As my only anxiety is things dealing with my face, I'm pretty sure that a therapist isn't going to help me there. And, no, I cannot stand a pillow near my face, and I choke if the blanket is too close to my face, like touching my neck!!! I think I have decided to tell the doctor there is no way at this point, and try again in a year or two, because at this point, there is no point causing myself this much stress over and over. I'm sick of throwing up over this, and crying over and over. I just can't let it rule my life.

[palerider]

Seriously, CBT might help. You should give it a shot.
Oh, shit! Now I have to walk back five blocks.

YOU FOOL! might as well ride to the turnaround and back now

muhahahahah!