Why your sleep study night will be an awful night of sleep

SleepyonMagnoliaSt · Post by **SleepyonMagnoliaSt** » Sun Aug 04, 2013 11:56 pm

My daughter had an AWESOME sleep study at the Children's hospital. THen she had an awesome Titration. Slept about 9 hours each.

Todzo · Post by **Todzo** » Mon Aug 05, 2013 3:29 am

Until the very real problems of venue (the test needs to be done in the normal place that the person sleeps), comfort (this needs to be addressed - no wires - leads eliminated where possible - update the technology), variability (no two nights of sleep are the same, or weeks, months, seasons, years), and expense (we need an affordable test!!) are addressed all newbies must be informed of the critical flaws built into the current system.

It helps no one to try to cover up critical flaws, indeed it puts people at risk. Risk of unreal expectations. Risk of improper care. Risk of improper treatment of the data gathered by the flawed test (e.g. job status!!).

This is reality and we need to deal with it! Please stop trying to cover it up.

49er · Post by **49er** » Mon Aug 05, 2013 3:51 am

Wow Julie!

Believe it or not, a sleep study is h-ll for some people. Maybe you can't imagine that but sheesh, has it ever occurred to you that people experience things differently due to their nervous system?

And if people are scared off a procedure due to one negative post, then that is on them and is not the responsibility of the person who posted. Everyone who posts to this board should free to share their experience without fear of being condemned for not having the right attitude.

49er

Julie wrote:Hi - I am so angry! There are people out there who are already afraid of what will take place (on one night, in a bed, in a laboratory in a medical facility - not on a 'rack' on a desert island with no one around), and we all have gone through it and try hard to encourage and reassure newbies that it's really not a big deal, and then along comes you, as negative minded as anything I could ever imagine.

This is life and death to people - so you had an unpleasant few hours, a couple of annoyances, but so what? Those people need to know it's no more than annoying (whatever your level of tolerance to such things). There's no invasive surgery, with or without anesthesia, and if all you have to complain about is some noise, a few wires, bathroom inconvenience and whatever else, you're very lucky, because you're being tested (and eventually treated) for a medical problem half the world doesn't even know about let alone deal with, but they end up having rotten lives because of OSA and eventually a (likely) earlier death.

I wonder if you'd consider changing the title of your note so it won't put off newbies before they even get started.

Julie · Post by **Julie** » Mon Aug 05, 2013 6:39 am

Oh my... did not intend to come across so strongly, but I reacted to the title as I saw it. I thought it would be very off-putting to people, but apparently that backfired .

I had a horrible study myself - and I'm NOT disputing anyone else's experience, only felt the title delivered such a negative message to people already anticipating the worst - and I wanted to balance it a bit. Sorry!

49er · Post by **49er** » Mon Aug 05, 2013 6:52 am

Julie wrote:Oh my... did not intend to come across so strongly, but I reacted to the title as I saw it. I thought it would be very off-putting to people, but apparently that backfired .

I had a horrible study myself - and I'm NOT disputing anyone else's experience, only felt the title delivered such a negative message to people already anticipating the worst - and I wanted to balance it a bit. Sorry!

Thanks Julie for responding. You make some fair points that I appreciate even though I have a different point of view.

49er

mollete · Post by **mollete** » Mon Aug 05, 2013 7:29 am

Shore Snorer wrote:It doesn't matter if you're going in for a diagnostic sleep study ("Do you have sleep apnea, and if so, how bad?") or a titration study ("What pressure should we set your CPAP machine for?").

Yeah, well, there are 7 dozen other sleep disorders out there, and based on this and your previous experiences, you undoubtedly have one (or more) disorders in addition to SDB.

Todzo · Post by **Todzo** » Mon Aug 05, 2013 9:01 am

Shore Snorer wrote:
It doesn't matter if your sleep study is at home or in a sleep center. It doesn't matter if you're going in for a diagnostic sleep study ("Do you have sleep apnea, and if so, how bad?") or a titration study ("What pressure should we set your CPAP machine for?"). During your sleep study, you'll have over a dozen wires glued to different parts of your head and body. You'll also have a band strapped around your chest. You'll have a pulse oximeter clamped and taped to one of your fingers. What's all that add up to? If you've ever worn an uncomfortable, poor-fitting piece of clothing ... this is far worse.

Does this sound uncomfortable to sleep in? Try going to the bathroom in it. At a sleep center, this will involve getting the technician's attention, getting unhooked, being given the wire harness (probably on a loop around your neck), and getting out of bed and walking to the bathroom with all of the above. If you're a guy and remain standing throughout the entire performance, you'll have to do everything one-handed; the other hand will be dedicated to keeping the wires out of the way.

My first two sleep studies went from bad to worse. All I learned from the first study was, "You got no deep sleep; you need to come back." All I learned from my second study was, "You need a CPAP machine." (No, they didn't tell me if my deep sleep was any better with the CPAP.) I'd had two terrible nights and gotten really no data. I blew it off for four years.

Thanks for bringing this subject to the floor. We absolutely need a much better implementation of the Polysomnogram and it's use in xPAP titration. In lab, uncomfortable, super expensive, one shot testing his resulting in way too many going without proper diagnosis and treatment.

nanwilson · Post by **nanwilson** » Mon Aug 05, 2013 9:24 am

"You have to do what you have to do" ever hear that idiom before? I've had worse tests done, as I'm sure many of you have, but if you have to do what you have to do to get this problem fixed. Then stop complaining, you are there to get "fixed" right.......... whatever it takes, I will do it.. that is a hell of a lot better than suffering and not sleeping for years, and years, and years................"I'm not having that sleep test done, its hell and I'm not going through that". Yes, it was hell, but I was diagnosed and have been on the hose for 3+ years and I am grateful for that This world has raised a bunch of people that can't stop complaining... no matter what. I can't figure out why some people feel so darn entitled.
Put on your "big girl/boy panties" and deal with it! You have to do what you have to do!!!!!!!!!!!!!!

SleepyToo2 · Post by **SleepyToo2** » Mon Aug 05, 2013 4:23 pm

Well said nanwilson. Problem is also that people have gotten used to taking a pill for everything that ails them. Well, there ain't no pill that's gonna fix apnea. May be some pills "cause" it? So get used to finding out exactly what your problem is, then putting on that mask every night the gods give you. Because it sure is the best treatment money can buy. Even though it sure ain't perfect!

Papit · Post by **Papit** » Mon Aug 05, 2013 5:23 pm

Make that +2, Nan.

Shore Snorer · Post by **Shore Snorer** » Mon Aug 05, 2013 7:01 pm

Julie wrote:I wonder if you'd consider changing the title of your note so it won't put off newbies before they even get started.

I'd certainly consider changing it to something a less absolute: "could be" or "might be" instead of "will be".

I was happy to hear some of you here slept well during your sleep studies. Happy, but somewhat pleasantly surprised, all things considered. (And only a tiny bit jealous. Just a teeny tiny bit. Honest.)

Personally, the key to getting through my most recent pair of sleep studies was lowered expectations. I was hugely disappointed by the pair of sleep studies I went through a few years ago: "What, after a cruddy night like that (with the CPAP), you're telling me I should look forward to a lifetime of similar nights? F***** that", where the "F-word" in this case was "Forget." And so I did forget it, until my doctor forcibly reminded me.

I really hope I do better this time. I hope others will, too. (You did read the second paragraph, right?)

If anyone's going to be surprised by the quality of their sleep during a sleep study, let them be pleasantly surprised.

msla · Post by **msla** » Mon Aug 05, 2013 7:24 pm

The worst part was having to wear PJs. & The rest was rather uneventful. Mine was a split study and I remember being woken up several times but fell right back to sleep.

49er · Post by **49er** » Tue Aug 06, 2013 4:19 am

Hmm, in light of the huge increase in the prescription of antidepressants, maybe folks aren't doing enough complaining due to the perception that having negative feelings isn't acceptable. Anyway, I am kind of tired of the "attitude police" on this board telling people how much they can complain or can't. You have no idea what is going on in our lives and to make judgments about what can be said or not is extremely outrageous. Enough said.

49er

mollete · Post by **mollete** » Tue Aug 06, 2013 6:56 am

49er wrote:Anyway, I am kind of tired of the "attitude police" on this board telling people how much they can complain or can't. You have no idea what is going on in our lives and to make judgments about what can be said or not is extremely outrageous. Enough said.

49er wrote:Everyone who posts to this board should free to share their experience without fear of being condemned for not having the right attitude.

Pot-Kettle on you!

49er · Post by **49er** » Tue Aug 06, 2013 7:14 am

mollete wrote:
49er wrote:Anyway, I am kind of tired of the "attitude police" on this board telling people how much they can complain or can't. You have no idea what is going on in our lives and to make judgments about what can be said or not is extremely outrageous. Enough said.

49er wrote:Everyone who posts to this board should free to share their experience without fear of being condemned for not having the right attitude.
Pot-Kettle on you!

I am sure I have been a hypocrite with past postings so if that is what you are criticizing, I can't argue with you. By the way, one of my favorite sportscasters is Tony Kornheiser, who is an admitted hypocrite:)

49er

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