First two sleep study results may have been skewed???

[Lori Dawn]

After learning so much and discussing things on this forum, and after MUCH prayer and consideration, I decided to go to another sleep study with a different lab. This one is at Baylor.

I got an appointment with the new sleep lab, and I ACTUALLY met the PA this time and was able to communicate effectively with her, after the help, advice and education here on this site. (THANKS, EVERYONE!!!) After I explained my situation with the machines and my bad experience so far getting treated, we came to the decision that I should start all over with a new study w/o CPAP and a retitration so that we can establish medical necessity for a new machine, (required by the insurance since it's only been two years since I got the other useless machine, and my insurance only pays for one every five years.) She scheduled me for a sleep study that night, this past Tuesday.

During this most recent study, I was told, when turning over to sleep on my side shortly after my study began, that I had to sleep on my back, and they woke me up and told me to turn onto my back whenever I turned over. The first two sleep studies I had in 2005 and 2009 (at the same place both times) they didn't care how I slept. Most of my sleep was on my left side. I fell asleep on my back, but shortly after that, according to the study results, I turned over and slept on my left side all night, as usual. Nobody EVER said ANYTHING about sleeping on my back.

I had a REALLY hard time sleeping on my back. I was having spasms in my upper back, between my shoulder blades, (like I do when I work too hard and too long at the computer,) and it was REALLY uncomfortable. I did get to sleep for a while, but then I laid there, it seemed the whole rest of the night, longing to turn over. I'm sure I was in and out, though. The tech said she thought she got enough data for the doctor. I HOPE that's the case.

In talking to a couple people here, they were also required to sleep on their backs during their studies. Hmmmm.. I had NO CLUE!

I called the PA and SHE CALLED ME RIGHT BACK!!! I am so pleased with her so far.... I told her my problem, and she explained that if you don't sleep on your back all night, the results would be inaccurate. So I will have to sleep on my back during the titration study. We rescheduled titration the study for this Saturday night, so I could have the next day to recover.

That brings me to my next hurdle, getting through the titration study sleeping on my back. I think my problem is, I have been working at a computer for so long, that my shoulders have been rounding forward for the past several years -- I KNOW, bad posture! -- and I think the problem was that I need support for my shoulders so as to not have them lay flat on the bed. I tried this last night with two pillows under my shoulders and a heating pad, and I was able to get comfortable and sleep on my back quite a while, I think. (The sleep tech said I could use a heating pad if it didn't interfere with the equipment, and she didn't think it would... I hadn't thought of the pillows idea yet.)

So does anyone think that this will be acceptable to the sleep tech? I'm talking about a pillow on both sides longways, under my arms and shoulders with my spine on the bed.

Hope someone will have some insight, as I really want to get a good study....

Also, just curious, in the paperwork they said, "CPAP patients undergoing a re-titration may be advised to discontinue the use of their current machine 48 hours prior to testing. It is very important to do as instructed. If the usage is not discontinued within the designated timeframe, the study results may be compromised and another study might need to be performed."

Anyone have any idea WHY this is the case?

Thanks for ANY input!

Lori Dawn

[jbn3boys]

Also, just curious, in the paperwork they said, "CPAP patients undergoing a re-titration may be advised to discontinue the use of their current machine 48 hours prior to testing. It is very important to do as instructed. If the usage is not discontinued within the designated timeframe, the study results may be compromised and another study might need to be performed."

I just recently had a re-titration done. I did not have this requirement. I used my cpap (actually, bipap) the night before my study. I'm not sure what the thought behind that is. But if they said it, I'd do it.

I know there are labs that make you sleep on your back, and it is true that sleeping on your back will give the "worst case scenario" for just how bad your apnea can be. But not all labs will require that. I have had two sleep studies, and neither one required be to sleep on my back. Their thought is that the better you sleep, the better the results. They did ask if I ever sleep on my back, since I didn't spend any time on my back during this last re-titration. When I said "NEVER", they were okay with it. So, in my opinion, your first two studies may have been "skewed", but they still should have shown what is true for you under your own normal circumstances.

I hope that this study is able to give your doctor some great information, and that you will soon start feeling much better!

[Slinky]

I don't care if it is Baylor. I would NOT agree to being forced to sleep on my back the entire night. I understand most all of us tend to have our most events whilst sleeping supine and/or whilst in REM sleep. But I also am of the opinion that the point is to test as close to our "normal" sleep as possible - meaning I AM going to sleep SOME of the time on one or both sides, and maybe even my tummy, whatever feels comfortable AT THE TIME. For whatever reason I don't always sleep well for a PSG and I am NOT going to do something to deliberately screw up my sleep at the lab. Just ain't a gonna happen. And I would make them aware of this BEFORE my study so if they weren't agreeable we could cancel and I could go elsewhere.

[LSAT]

Ditto what Slinky said...Testing on your back makes no sense unless you sleep on your back most of the time.

[robysue]

Double ditto what Slinky said.

For what it's worth, I've had four sleep tests since Aug 1. Techs in three of the tests never mentioned what position to sleep in after a very brief period on my back to calibrate equipment (Make a snoring noise with your mouth open; Make a snoring noise with your mouth closed; open and shut your eyes; move your eyes to the right with them shut; etc.) Calibration took less than 10 minutes and it was "Good night" and I turned on my side to try vainly to fall asleep. Fourth tech asked if I could try to sleep on my back. Told her, I hardly ever sleep on my back (as verified in the three previous sleep studies) and that when I fall asleep on my back, I wake up with a nasty back ache the next morning. She dropped it and on that test I actually managed to fall asleep in about 30 minutes instead of over an hour.

[Madalot]

Hey Lori,

I've reviewed this thread and am kind of perplexed by your lab's requirement that you sleep on your back. My lab let me sleep however I wanted for both the diagnostic & titration studies. I know the summary report from my titration indicated "NO SUPINE SLEEP" and recommended follow up pulse ox testing.

If it were me, in your situation, I think I would contact the lab BEFORE the titration and explain that not only is sleeping on your back difficult, but extremely painful, and that you feel you would get better results if you were allowed to sleep on your side.

I'd be interested in their response to that...

[Lori Dawn]

Thanks for everyone's input.

I already talked to the PA and she insisted that I sleep on my back, even though it's painful for me. I told her I didn't sleep much because of it, and she kept insisting that to get accurate results, I need to sleep on my back.

I'm going to go ahead with the titration and see what happens.... What have I got to lose? Except a night's sleep and that happens all the time anyway.... I want to get this figured out as soon as I can. I'm just worried that my choices in sleep doctors are bad and worse, not sure which is which yet. Maybe not. I thought I was on the right track, and now I'm not so sure. I won't know until I get my results and see what the PA says. But I'm going to hope for the best and stop worrying about it. I'm just so very tired, I can't think straight and don't trust my decisions right now.

Thanks so much for everyone's input!

Lori Dawn

[DreamDiver]

They prefer to do the sleep study on the back because that's the worst-case scenario for apnea for most people. A lot of us turn over once we fall asleep anyway. One tech actually woke me up to get me to turn over onto my back again. I have less issue with the back and more issue just staying in one position all night. I wonder if they can give you a TENS unit for a while before you go to sleep to reduce the pain.

[Slinky]

It sounds like the PA is a real ditz who has no real sense at all when it comes to PSG studies. Hopefully, you will have an RPSGT doing your PSG who knows his/her job and how to do it correctly. Be prepared to spend some time sleeping on your back but "stuff" that spending the entire night on your back. And if the sleep tech IS dumb enough to insist you sleep on your back all night be prepared to tell him or her you will write a letter explaning WHY you weren't able to sleep or woke so many times was BECAUSE the tech kept waking you to roll over on your back. And be prepared to write that letter if he/she persists.

[AMUW]

Lori,
Short of hearing a few real good reasons by the PA, I am joining the chorus urging you to discuss this with the PSG team further. Or else you may end up with useless results.
My case in point may put some logic into your arguments:
- I was also strongly urged to keep in supine position and with legs kept apart for the basic study. Reason given: the probes may get dislodged, and them waking you up to fix may disturb the measurements and sleep architecture. The result, like in your case: normally a good sleeper in side and curled position, the artificial lab conditions caused a terrible night, with only 50% effective sleep. A later home test in natural sleep mode with nasal canulae and pulse oxymetry restored my statistics to a normal night, also reduced my AHI by a factor of 2. The sleep tech literature even has a name for this known situation: 1st night effects or environmental effects.
- my titration night was mainly marred by mask intolerance: I ended up getting only 3 hrs of real sleep, enough for them to get two pressure values, but not long enough to finish the test plan. Their major problem with the "guinea pig" was that by turning my face into the pillow I'd push the nasal flow probes out of position.

A lot of us turn over once we fall asleep anyway... I have less issue with the back and more issue just staying in one position all night.

That's my case too. Instead of sleeping, I had to concentrate on the lab rules.

I could be wrong, but ask your PSG team: other than the problems causing "inconvenience" to the sleep tech, isn't the main objective of the night to get ideal apnea suppression pressures for you? in your preferred sleep position, with your preferred masks, during various sleep stages, and maybe trying out more than one CPAP algorithm?

Which answers could be influenced by the results of the just completed PSG test. Aren't you going to get the details and discuss with the doctor first? What you didn't mention: also compare your latest PSG with the previous PSG reports.

Unfortunately, there may be administrative and insurance constraints driving the process. First the basic PSG study results have to be bad enough to qualify you for the second study. Then the titration study results have to look considerably better than the first, in order to qualify you for CPAP.

Finally, I don't believe your shoulder supports ... or raised head ... or pillows between legs, should be any problem, just as long as they don't affect the probes functioning well.

I hope you find a happy medium ... and get good results. Why rush into it before good preparation?

[rested gal]

A pillow placed under your knees to keep them bent slightly upward can help make being on your back a little more comfortable.
Don't be shy about asking for three or four extra pillows right from the get-go if building yourself a "nest" will help you get comfortable. You might want to practice some nest configuations at home...not to sleep that way at home...but just to see how many pillows it takes and where you want them.

I think the sleep lab there is being a little hardnosed about sleep position. As long as they can get a good look at some time spent supine and in REM (the combo scenario that causes apneas to hit most people with OSA the hardest, and often requires the most pressure of any position/stage) I don't really see why they are so absolutely insistent that people spend the entire titration night sleeping on their back.

Given the amount of wakeups that could cause for some people if the tech has to wake the person repeatedly to issue reminders to "turn back over on your back, please" -- it doesn't seem like a good idea to me.

A word about why it's important that the titration find out what pressure is needed when a person with OSA is on his/her back, even if the person truly NEVER sleeps supine at home. Heaven forbid you ever have an accident or illness that requires hospitalization and absolutely requires that you lie on your back in the hospital bed. But if that happens, it's a good idea that the pressure needed during supine/REM sleep was found during the sleep study titration.

[Lori Dawn]

Thanks so much for all the replies and PMs that have helped me to understand that this sleep lab/doctor are CROOKS just like the other CROOKS I have dealt with in trying to treat my OSA, even though they are at BAYLOR! (I THOUGHT that meant I could trust them!)

I am going to get through the titration tonight the best way I can. Rested gal, I have done exactly what you suggested, figured out how I can get comfortable by making a "nest," and I have tried to sleep that way, and it's quite comfortable. We'll see what the results are. I understand that I must sleep better for the titration than I did during the initial study so that they can "justify" a new machine to the insurance, so I hope this helps. I also have a heating pad that they may/may not let me use.

BUT, I realize that I CAN make this situation work FOR me instead of against me, for a CHANGE! Thanks, you-all, for EDUCATING ME!

Since this doctor/lab acts as their own DME, I expect to get treated like I did before, i.e., be offered the cheapest machine possible, "justified" by these latest study results. It's too late to reschedule, as the study is tonight, but my plan is to leverage them into giving me the machine I want by insisting on an APAP, saying my GP will write the script and LOMN if she won't, and walking out if I don't get it. I can always go back to my GP who has already said he would write the script for an APAP. I just needed a new study for insurance purposes anyway.

We'll see what the PA says, but I figure she would really LIKE to give me a CPAP, HOPING it will fail, then have to do ANOTHER study/titration to "justify" an APAP. I'm NOT going to go THERE! (THIS PLACE REALLY IS A RACKET BEING THEIR OWN DME!) I expect when say I will walk out and back to the GP, she will then give me the machine I want to prevent me from walking out. This "experiment" is based on all the good advice and explanation received from you-all about how these places work. Just because they are their own DME doesn't mean they are NOT going to try to RIP ME OFF!

THANKS SO MUCH to all of you who have helped me to understand WHY they do the things they do and HOW to maneuver them into doing what I want. I refuse to be manipulated again, and I WILL BE DOING THE MANIPULATING THIS TIME! We'll see how THAT works!

[SleepingUgly]

If that's the requirement, you should discontinue CPAP 2 nights before your sleep study. I have read of a "carry over" effect from CPAP, although I read it only lasts one night. Who knows. For some people 2 days off CPAP is dangerous, but if they don't feel it is for you, go for it. I wish someone would Rx me that right now...

[LaCansada]

I doubt they are "crooks", however, the PA may have just been educated a certain way. I'm no expert here, however, my thoughts are that if you get the "worst case scenario" during your study, then they will run the risk of setting your pressure too high. More apnea episodes occur with people while sleeping on their backs so this will take a greater amount of air pressure to control. This may be more pressure than what you normally need if you are a side-sleeper. Maybe this would be addressed by getting an autopap rather than a CPAP, however, it still seems a crazy way to run a study. Not to mention the fact that many people, myself included, just can't sleep all night on their backs. I hope that all went well. Please let us know.

[Breathe Jimbo]

Our bluetick coonhound sleeps on our bed. He won't take no for an answer. He likes to snuggle in the cove of my butt and bent knees. I sometimes wake up on my back and lying diagonally, my left leg bent all the way with my heel near my butt and my knee up in the air, my right leg hanging off the bed at the knee. My wife is sometimes kind enough to wake me up and say that I can get "back in bed" because she moved the bluetick. So, you see, it could be worse.