first sleep study - complete waste of time? - Yup!

[Sheriff Buford]

How did it go?

Sheriff

[ironhands]

Thanks for asking, complete waste of time.

As I was afraid of, I couldn't fall asleep for the first 2 hours, despite being sleepy. When I finally did, I awoke during a dream, and 2 minutes later the tech came in to fiddle with one of the electrodes. The device was giving her problems before I went to sleep as well. I counted the number of times she came in to fiddle with it after I awoke. 8 times in half an hour. Between that, and the snoring of the patient next door, I ended up awake for at least another hour, if not two, before I finally passed out again, briefly. Woke up twice more during a dream, not sure about the time; no clocks of course, but I don't think I got more than 2-3 hours sleep, maximum, and I don't think I snored, or had any events.

As far as info from the tech, I didn't waste my time asking. You might think that yeah, info now would be great, and I would agree, but the tech spoke very little English. When asked if I sleepwalk, or talk, I started talking about my experiences with what I believe to be catathrenia.

"Catatonia?"

No, catathrenia.

"What that is? Can you spell?"

I explained, and tried to make the joke about how I always woke up with bruised ribs from my ex-gf elbowing me.

"Oh, so you also have thrashing and twitch?"

...

Filled out the "kvestion-eerie" in the morning, completely useless, as I will be the entire day from one of the worst nights of "sleep" I've had in weeks.



Tech "wakes" me up in the morning.. I nearly flipped, I'm usually pretty grouchy in the morning, but the question she asked pushed me to the limit.

"How was you sleep?"

Am I not here for YOU to tell ME how I slept?!?!

She gave me the card for my next appointment for a consultation. I told her I don't see the point, there's no data to discuss. She said "You'll need to discuss with doctor".

So I'm stuck with no resolution for a year unless I pay for another study out of pocket.

Place was filthy too. Holes in the wall where conduit used to run, bits of broken plaster, moldy/mildewy crud in the bathroom/shower, stained sheets. I know we're not talking 5-star hotel expectations here, but it's a medical clinic, I'd expect a certain amount of professionalism, especially when many of those things could aggravate allergies of the patients.

Time for another coffee, it's going to be a long day.

[robysue]

Woke up twice more during a dream, not sure about the time; no clocks of course, but I don't think I got more than 2-3 hours sleep, maximum, and I don't think I snored, or had any events.

Two or three hours of fractured sleep is usually plenty for diagnosing OSA. And the thing about OSA is that we typically don't remember anywhere near all the events that we actually suffer through each night.


But it does sound like you had a very difficult tech to work with.

Filled out the "kvestion-eerie" in the morning, completely useless, as I will be the entire day from one of the worst nights of "sleep" I've had in weeks.

Alas, that's not an uncommon experience.

My worst sleep test experience was probably my first titration study. On the plus side---I didn't lie there for hours and hours awake, although in a 6 hour test I only got 4 hours of highly fractured and uncomfortable sleep. The worst part was I felt like death warmed over when I woke up with a lot of bloating from aerophagia and very sore red eyes and a sore nose. The place didn't have showers available in all the rooms, and guess which kind of room I was stuck in. And I had to go directly to work---no time to stop at home to clean up. And it was the first day of the semester. Walking into class with goop all over your head is NOT the way to start a semester as a college professor.

But in terms of actual sleep time, my worst was the second titration test, which was caused by the need to switch me to BiPAP. In a 6 hour "time in bed window", I managed to get a whopping 110 minutes of actual sleep according to the EEG.

Tech "wakes" me up in the morning.. I nearly flipped, I'm usually pretty grouchy in the morning, but the question she asked pushed me to the limit.

"How was you sleep?"

Am I not here for YOU to tell ME how I slept?!?!

It is, alas, a standard question. On every one of my 6 sleep tests I've been asked that---both verbally and in writing. The written form also asks how long I thought it took me to get to sleep and how long (total) I think I did sleep and whether I thought I did any dreaming during the night. All of which, of course, the data show explicitly.

The questions are not as silly as they seem, however. In some sleep disorders (chronic insomnia in particular), the sufferers have a vastly different impression of how long they actually sleep versus how long they actually sleep according to the EEG. And the patient's impression of their night is also important in evaluating the data that is gathered. If the patient reports the night is highly abnormal, then it's easy to attribute very little sleep to lab effect and focus attention on the periods where the EEG indicates the person was asleep. On the other hand, if a person reports the night was about the same as usual, then issues with insomnia are not so easily dismissed as being caused by lab effect.

She gave me the card for my next appointment for a consultation. I told her I don't see the point, there's no data to discuss. She said "You'll need to discuss with doctor".

If you got two hours of sleep, there's data to discuss. I'd set up the appointment with the doc.

So I'm stuck with no resolution for a year unless I pay for another study out of pocket.

No, it's not this simple. If you got a couple of hours of sleep and the data is ambiguous, it's quite possible that with the presence of daytime symptoms that the doc would be willing to prescribe either a titration study (which likely won't go any better in terms of the amount of sleep you get) and/or a two week trial with an APAP running wide open to see what kind of pressure you need and whether you seem to benefit from PAP therapy.

Place was filthy too. Holes in the wall where conduit used to run, bits of broken plaster, moldy/mildewy crud in the bathroom/shower, stained sheets. I know we're not talking 5-star hotel expectations here, but it's a medical clinic, I'd expect a certain amount of professionalism, especially when many of those things could aggravate allergies of the patients.

This is UNACCEPTABLE. You might just want to find a sleep doc connected with a different sleep center and have the lab forward the results (and ideally the raw data) to the new doc.

[Sheriff Buford]

Sorry your experience wasn't better. But.... (always a "but"...), don't underestimate your visit. I would bet 90% of us thought the same thing when we left our sleep study. You'd be surprise at what "little" or "quality" sleep is needed to get enough data to properly detect your symptoms. Of course utopia would be to gather data from 6-7 hours of sleep, but I'll bet that rarely occurs at the sleep centers. I left my sleep study thinking the same as you. I thought I didn't get enough sleep and it dang sure wasn't quality sleep. One good thing in your favor was the fact that you were dreaming. That happens in REM... the last stage... so that tells me you did get some deep sleep. I'll bet you'll be surprised at the amount of data that was taken.

Keep us updated and work all your problems here. If you get a machine... get an autopap (Resmed S9 Autoset) that is data capable and be sure the doctor prescribes it on the prescription. Keep a copy of the prescription and have the doctor prescribe a "mask of patient's choice" on a separate prescription.

Sheriff

[ironhands]

The problem with it only being a couple of hours, is that they couldn't do a split study if enough OSA was discovered. You're right, I may not remember any of it, but I often am aware of it from waking up a couple of times a week noticing it.

I also had sore eyes and nose, which is really uncommon for me, I don't usually wake up like that. Might have been the AC, it was really cold and "windy" in the room. I have a basement apartment so it's naturally pretty cool and moist.

I'm sure it's a standard, and polite question, but it could have been phrased better. Perhaps "Do you feel rested?" But language barrier I guess was a factor. Should have been pretty obvious how irritable I was, and still am. The "kvestion-eerie" was fine, had all the right questions, though some were a little loaded. "Do you fall asleep while driving a car?" I don't drive, does saying no count against my sleepiness?

Certainly going to go see him, if for nothing else, to complain about the conditions of the study, I feel they really dropped the ball. I don't know what to expect, but changing the same electrode 5+ times in 30 minutes seems excessive.

I am pretty sure I will have to pay for the titration study out of pocket, if prescribed. It's one study, per year covered by OHIP. Re-titration is once every 2 years. Loaner equipment and rentals as well from what I remember is out of pocket. I might be remember incorrectly, I'll need to check into it, I'm still half asleep and still really peeved. I don't make enough to cover an out-of-pocket study, it's a weeks pay, at minimum.

I'll be going to my GP in two weeks, I'll bring it up to her, and recommend she refers future patients to a different place.

I'm wondering how much data I can track myself. I've recorded myself sleeping with a webcam, so there's definitely signs of loud snoring, pauses, gasps and noises that suggest catathrenia, but I doubt anyone can really take that as any serious data.

Already planned on picking up the Resmed S9 elite - the clinic prefers Philips though. Doubt I'll get an auto, but it'd be nice since I expect to lose weight in the coming months.

It'll be a month until the specialist appointment, but I'll have the summary results from my GP (hopefully) in 2 weeks when I see her anyway. New doctor so I'm not sure what to expect with her yet.

Thanks for all your support, it's reassuring.

*edit* checked it, I am covered for a titration study if there was enough data to support it. If not, well, another 364 crummy nights.

[robysue]

The problem with it only being a couple of hours, is that they couldn't do a split study if enough OSA was discovered. You're right, I may not remember any of it, but I often am aware of it from waking up a couple of times a week noticing it.

Even with a full night's sleep many people with mild-to-moderate OSA will not meet the criteria for a split night study.

I'm sure it's a standard, and polite question, but it could have been phrased better. Perhaps "Do you feel rested?" But language barrier I guess was a factor. Should have been pretty obvious how irritable I was, and still am. The "kvestion-eerie" was fine, had all the right questions, though some were a little loaded. "Do you fall asleep while driving a car?" I don't drive, does saying no count against my sleepiness?

Sleepy driving is one of the big issues that gets some people to acknowledge that their sleepiness really is an issue and that they ought to treat their OSA.

That said, if I weren't a driver and I was faced with that question, I think I would have written: Don't drive because I don't own a car.

Certainly going to go see him, if for nothing else, to complain about the conditions of the study, I feel they really dropped the ball. I don't know what to expect, but changing the same electrode 5+ times in 30 minutes seems excessive.

Well, yes. But the goop doesn't always stick---particularly if you're thrashing around. On my most recent titration study (Saturday night), there was a 15-30 minute period where the tech had to come in repeatedly to fix a lead that was attached behind my left ear and several more times to fiddle with the O2 sensor. The problem was caused by me, however: I just could not sort out where those two wires' slack was and every time I turned over (and I was tossing and turning at this point), I'd pull one of the two of them off ...

I am pretty sure I will have to pay for the titration study out of pocket, if prescribed. It's one study, per year covered by OHIP.

You need to check on this. Most insurance companies will pay for:

1) One diagnostic sleep test per year (if nothing is found, but a re-test is warrented by daytime symptoms)

OR

2) One diagnostic sleep test AND one titration sleep test if the results of the diagnostic sleep test are positive for OSA. And then there may be restrictions on paying for re-titrations after the initial titration.

After all, paying for the diagnostic test, but refusing to pay for the titration test if OSA is diagnosed is penny wise and pound foolish. If OSA is found and you're the insurance company, you want it treated because a few $$$ up front to treat the OSA will potentially save $$$$$ in the years to come from minimizing the chances of the patient developing serious heart disease or having a debilitating stroke down the line.

As an analogy: Paying for the diagnostic test, but not the titration test is rather like paying for the blood test to diagnose diabetes and then refusing to pay for the necessary blood work and follow ups needed to make sure that the prescribed drugs are actually managing to control the diabetes.

I'm wondering how much data I can track myself. I've recorded myself sleeping with a webcam, so there's definitely signs of loud snoring, pauses, gasps and noises that suggest catathrenia, but I doubt anyone can really take that as any serious data.

Without the EEG it's hard to demonstrate when you are asleep and when you are awake. It's also hard to demonstrate when you're in REM. And so all of this indicates the need for a sleep test (which you've had), it is not enough to come up with a definitive diagnosis.

If you have to pay for another diagnostic test OOP, you might want to consider a home sleep test. They are somewhat cheaper and since they happen in your own bed (and sometimes over multiple nights), it may provide better data.

Already planned on picking up the Resmed S9 elite - the clinic prefers Philips though. Doubt I'll get an auto, but it'd be nice since I expect to lose weight in the coming months.

Please read through JanKnitz's blog entry at: http://maskarrayed.wordpress.com/what-y ... me-part-i/ and also her blog entries on Don't Pay That Upcharge! and Data Capable Machines.

Also keep in mind that unless you are dealing with an HMO, you are under no obligation to use the clinic or it's prefered DME to obtain your equipment. You need to contact your insurance company and find out how they pay for CPAP equipment and then start shopping around for a DME that will set you up with the machine you want. For what it's worth, the differences between the Resmed S9 Autoset and the PR System One Series 60 APAP are pretty minimal and if it's easier to get your hands on the PR System One APAP, don't lose any sleep over accepting a System One APAP instead of the Resmed S9 APAP.

It'll be a month until the specialist appointment, but I'll have the summary results from my GP (hopefully) in 2 weeks when I see her anyway. New doctor so I'm not sure what to expect with her yet.

Call the GP's office and tell them you've had the diagnostic sleep test done and that you'd appreciate a call as soon as they have the results and that you need to talk about the results at your next appointment. Don't just assume that the results will before that appointment. Also call the sleep center and reiterate that you need the results sent to your GP before your appointment in 2 weeks and ask for the paperwork you need to fill out to get a copy of the summary results---including the summary graphs for your own records. You are entitled to your own copy, but you may have to be pushy to get it.

[Pugsy]

It's one study, per year covered by OHIP. Re-titration is once every 2 years

Are you in Canada? Ontario by chance?
If so then you know that your insurance is a lot different than our insurance.

Your sleep study may not be the total waste of time that you think it was. There's normally certain criteria that needs to be met for the mask and machine to be utilized in a split study. You may not have met criteria (whatever that might be) but you still could come up with the diagnosis and I think what is done in Canada is a trial with an APAP machine to find the best pressure then RX for cpap machine is given.
FWIW...I didn't make criteria either and my OSA is severe in REM with over 50 events per hour. My sleep during the diagnostic study was horribly fractured because every time I would get to REM stage sleep I would wake up and then I had to start all over with the sleep stages. It wasn't until the very wee hours of the morning that I met criteria and by then there was no time to do the titration.

[ironhands]

Well, yes. But the goop doesn't always stick---particularly if you're thrashing around. On my most recent titration study (Saturday night), there was a 15-30 minute period where the tech had to come in repeatedly to fix a lead that was attached behind my left ear and several more times to fiddle with the O2 sensor. The problem was caused by me, however: I just could not sort out where those two wires' slack was and every time I turned over (and I was tossing and turning at this point), I'd pull one of the two of them off ...

They were replacing the electrode though, not just re-applying it, and it was the same one they were having trouble with before the study began. There was a problem with the breakout box from what I overheard.

You need to check on this. Most insurance companies will pay for:

1) One diagnostic sleep test per year (if nothing is found, but a re-test is warrented by daytime symptoms)

OR

2) One diagnostic sleep test AND one titration sleep test if the results of the diagnostic sleep test are positive for OSA. And then there may be restrictions on paying for re-titrations after the initial titration.

After all, paying for the diagnostic test, but refusing to pay for the titration test if OSA is diagnosed is penny wise and pound foolish. If OSA is found and you're the insurance company, you want it treated because a few $$$ up front to treat the OSA will potentially save $$$$$ in the years to come from minimizing the chances of the patient developing serious heart disease or having a debilitating stroke down the line.

As an analogy: Paying for the diagnostic test, but not the titration test is rather like paying for the blood test to diagnose diabetes and then refusing to pay for the necessary blood work and follow ups needed to make sure that the prescribed drugs are actually managing to control the diabetes.

It's OHIP - Ontario, Canada, government plan. My understanding was the government pushes for the split study whenever possible. I checked and the initial titration is covered, and one every 2 years after if needed. If I need more than one every 2 years (or a second sleep diagnostic in a year) it's out of pocket, so it's either a months food/utility bills, or a sleep study

Without the EEG it's hard to demonstrate when you are asleep and when you are awake. It's also hard to demonstrate when you're in REM. And so all of this indicates the need for a sleep test (which you've had), it is not enough to come up with a definitive diagnosis.

If you have to pay for another diagnostic test OOP, you might want to consider a home sleep test. They are somewhat cheaper and since they happen in your own bed (and sometimes over multiple nights), it may provide better data.

With all of my recordings, it's pretty simple to tell when I'm actually asleep, because books are falling off of shelves from the vibrations with my snoring

Please read through JanKnitz's blog entry at: http://maskarrayed.wordpress.com/what-y ... me-part-i/ and also her blog entries on Don't Pay That Upcharge! and Data Capable Machines.

Also keep in mind that unless you are dealing with an HMO, you are under no obligation to use the clinic or it's prefered DME to obtain your equipment. You need to contact your insurance company and find out how they pay for CPAP equipment and then start shopping around for a DME that will set you up with the machine you want. For what it's worth, the differences between the Resmed S9 Autoset and the PR System One Series 60 APAP are pretty minimal and if it's easier to get your hands on the PR System One APAP, don't lose any sleep over accepting a System One APAP instead of the Resmed S9 APAP.

Not much choice in what I get, OHIP covers 75% of the cost on a few specific unit packages, to a maximum of.... $750(Canadian) IIRC Includes a basic mask, bag, humidifier, hose, etc. The elite S9 is one of the approved kits, but will still cost ~400 + a proper mask, since the basic one likely won't work too well. There is a DME close by I've been in contact with, but, like most people say about the DMEs, not too trustworthy, especially when they find our you're paying out of pocket, or using OHIP. Completely different price list.

Call the GP's office and tell them you've had the diagnostic sleep test done and that you'd appreciate a call as soon as they have the results and that you need to talk about the results at your next appointment. Don't just assume that the results will before that appointment. Also call the sleep center and reiterate that you need the results sent to your GP before your appointment in 2 weeks and ask for the paperwork you need to fill out to get a copy of the summary results---including the summary graphs for your own records. You are entitled to your own copy, but you may have to be pushy to get it.

I'll give them a call on Monday, (the GP's on vacation) and ask that a note be left regarding it. My GP seems pretty easy to deal with, but I'm still not sure about her knowledge of sleep disorders since we've only briefly touched on it, while doing the physical exam and meet'n'greet. TBH, I'd much rather talk to my dentist about it, since he's got OSA and prompted me to be checked out in the first place

[ironhands]

It's one study, per year covered by OHIP. Re-titration is once every 2 years

Are you in Canada? Ontario by chance?
If so then you know that your insurance is a lot different than our insurance.

Your sleep study may not be the total waste of time that you think it was. There's normally certain criteria that needs to be met for the mask and machine to be utilized in a split study. You may not have met criteria (whatever that might be) but you still could come up with the diagnosis and I think what is done in Canada is a trial with an APAP machine to find the best pressure then RX for cpap machine is given.
FWIW...I didn't make criteria either and my OSA is severe in REM with over 50 events per hour. My sleep during the diagnostic study was horribly fractured because every time I would get to REM stage sleep I would wake up and then I had to start all over with the sleep stages. It wasn't until the very wee hours of the morning that I met criteria and by then there was no time to do the titration.

Yup, OHIP = Ontario Health Insurance Plan. Very different than most US plans from what I understand. Everyone gets it here, but it's not premium-care like some US companies offer.

That sounds like what happened to me - though I don't know if I even had any events, that's why I'm so worried that this was all a big waste of time; I don't even know if I had a single event, and it's really aggravating, especially since part of the reason I couldn't sleep was the poor environment

[nanwilson]

Ironhands
I'm in Alberta and I had a loaner auto machine for 2 weeks so that they could figure out what I needed. During my sleep study I did not have a split study, my son is in Manitoba and he didn't have the split study either, and had the loaner for 2 weeks same as me. Perhaps Ontario is the same as Ab and Mb... there are a couple of Ontario cpapers on the forum, perhaps one of them will chime in and give you a better insight into what their experience was.
Good luck

[123.Shawn T.W.]

Just my unprofessional opinion ... But in my experience ... Three studies ... Three HORRIBLE nights ... I was surprised at the amount of info they can gather ... Even though what I wrote on the after the night survey on how much sleep I got, and how long it took to get to sleep ... I was WAY off compared to the machine!

The nice thing about the auto machine is not only does your needs change over time, but during the night if you move to a different position ... Also handy if the screw up your titration settings ... They originally set me up for 4-7 ... But 8 or even 10 will not knock out all of my obstructions!

I just went back for my second titration two nights ago ... Maybe they will get it right this time ...

The auto will cost you the same as a fixed preasure machine, as the insurance uses the same billing code for both, so price is the same ... Auto's can be set to a straight set fixed pressure too ... Get an auto, but nothing with the word "ESCAPE" in it, it is just a "brick" = no useful data!

[ironhands]

Thanks for the info. Checking with a few I've spoken to before. It'll be almost a month until I'd even be scheduled for a titration, or a loaner, if they do that here. My anxiety ain't likin' this

[ironhands]

Just my unprofessional opinion ... But in my experience ... Three studies ... Three HORRIBLE nights ... I was surprised at the amount of info they can gather ... Even though what I wrote on the after the night survey on how much sleep I got, and how long it took to get to sleep ... I was WAY off compared to the machine!

The nice thing about the auto machine is not only does your needs change over time, but during the night if you move to a different position ... Also handy if the screw up your titration settings ... They originally set me up for 4-7 ... But 8 or even 10 will not knock out all of my obstructions!

I just went back for my second titration two nights ago ... Maybe they will get it right this time ...

The auto will cost you the same as a fixed preasure machine, as the insurance uses the same billing code for both, so price is the same ... Auto's can be set to a straight set fixed pressure too ... Get an auto, but nothing with the word "ESCAPE" in it, it is just a "brick" = no useful data!

Yeah, I definitely want the data. I don't think the pricing works the same with the provincial medical insurance, only specific models are covered, and only up to a specific amount, I found their pricing structure, updated March of this year. They'll pay 75% of the max cost allowed for the Resmed S9 Autoset Apap, at $1,585.00 (they're all set at that cost). For just a CPAP Resmed S9 Elite, 75% of $1040. Same cost for the Escape. I just found proof the DME I had contacted was trying to hose me, they aren't legally allowed to charge me more for the Elite.

I wonder how some of these dealers sleep at night.. Many of us are paying out of pocket just to get a good nights rest. It's literally food out of my mouth they're trying to take

[CoastalSun]

Each province in Canada have their own medical plan ... here in British Columbia, there is NO coverage for CPAP machine unless there is moderate to severe sleep apnea and in that case, ONLY for people on social assistance. There is a program for assistance to get a CPAP in the case of 'life threatening' sleep apnea and 'financial need' but imagine the reams of paperwork required for a 'panel' to decide if you get one or not? I didn't even consider going that route. I paid 'out of pocket' for Resmed Elite with humidifer/Climate hose/headgear and Wisp mask: total came to $2200. Thankfully, I had some money set aside but there went my trip overseas.
I had one sleep study and with no titration, but based on the results, the doctor prescribed the pressure settings; I have been followed closely by a respiratory tech. Therapy is going well although other health issues have reared their ugly head.
Good luck and hopefully there was enough data from your study to move forward.

[123.Shawn T.W.]

Ah ... Canada!

That explains why ... I just sold a new PR S1 60 series auto for $450 plus shipping to a guy in Alberta ...

You probably will find a machine from cpap.com cheaper than your full price (if ins won't cover it)

Every once in awhile a machine will pop up on here for sale too ...