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

[Madalot]

Hey Lori,

Thanks for posting this. I've been watching this morning for an update!

I am SO glad it went well and that you are positive about everything. Congratulations!!!

[Lori Dawn]

Thanks, Madalot!

I am feeling positive and rested, but groggy. I'm starting to think that the groggy feeling is a GOOD THING! Short of having data at the moment, maybe that's a sign that I slept well....

ABSOLUTELY CAN'T WAIT to sleep tonight and see how I feel in the morning!

[AMUW]

Glad to hear that you felt good about your PSG.

Just to make sense of your story:

I slept SOOO GOOD!!! I built myself a "nest," as Rested Gal suggested, and used my heating pad. I was able to get VERY comfortable on my back, and DID NOT WAKEN THE ENTIRE NIGHT! Didn't even feel the need to roll over!

This tells me that apparently the test conditions didn't bother you ... great. And that the pressure supplied was NOT UNcomfortable.
So I am curious about your test report:
- whether you indeed slept in a single position.
- if not, whether the tech tested your optimal pressure in each position
- whether the same flow generators, algorithms and masks were tested that you have on your prescription

Re the recommended pressure value: I'd insist on an explanation why the new pressure is so different from the old one.

[rested gal]

Lori, how nice to hear it all went so well for you.

You were smart to take along your heating pad.

I don't think the sleep lab or the doctor were crooks.
As LaCansada said, "I doubt they are 'crooks', however, the PA may have just been educated a certain way."
Sounds like you had a very nice tech. That helps.

[Lori Dawn]

Thanks for your replies, everyone.....

AMUW:

This tells me that apparently the test conditions didn't bother you ... great. And that the pressure supplied was NOT UNcomfortable.

Right, NOTHING bothered me! It was GREAT! Almost as good or better than I sleep at home! I did sleep all night with no wakes, other than when the tech came in a few times early on to adjust things.

So I am curious about your test report:
- whether you indeed slept in a single position.

Yes, I slept all night on my back, never even tried to roll over.... was very comfortable with my "nest" and my heating pad.

- if not, whether the tech tested your optimal pressure in each position

No, I never got off my back, never tried to, was never asked to get off my back...

- whether the same flow generators, algorithms and masks were tested that you have on your prescription

Actually have no real RX, just ("RX CPAP and mask" handwritten on my sleep study results from 2009 by my GP)

Don't know about the technical stuff, but I have started a list for the doctor (tomorrow) -- actually she is a PA... Do you have any suggestions of ACTUAL questions to ask the PA? (This is the first actual sleep doctor I have met.... never met my sleep doctor on either of the first two studies, ordered by my GP, had studies, results sent to my GP, GP wrote "CPAP and mask" on my study, and sent it to the DME.)

Re the recommended pressure value: I'd insist on an explanation why the new pressure is so different from the old one.

Yes, I will ask about this when I see the sleep doctor tomorrow about my results. Just a note, I have been sleeping with pressure of 12 since the titration and I am sleeping well, have adjusted to the mask, mostly, it seems like I'm feeling a bit... just a bit, mind you, better... I have a little less of a need for a nap during the day, still take them, but not every day. It's only been a week...but still very tired in the afternoon/early evening. Baby steps, I guess....

Other suggestions about questions to ask the doctor are WELCOME/APPRECIATED!

RESTED GAL:

Lori, how nice to hear it all went so well for you.

You were smart to take along your heating pad.

I don't think the sleep lab or the doctor were crooks.
As LaCansada said, "I doubt they are 'crooks', however, the PA may have just been educated a certain way."
Sounds like you had a very nice tech. That helps.

Thanks, Rested Gal, it was your suggestion that I make a "nest" that was instrumental in my being comfortable, plus with a sleeping aid, and the heating pad.... well, it WORKED VERY WELL!!! Thank you.

About the "crooks" thing, I am feeling very burned after my last DME sabotaged me by convincing me to switch machines in 2009, (From the M Series Pro, which was perfectly fine datawise, to the M Series Plus (no data)) and I feel like I was duped and taken advantage of. The "crooks" reference was what I gathered from the doctor/sleep lab being their own DME.

I just have this feeling they are going to put money above my treatment, i.e., give me another straight CPAP that has data, to shut me up, hoping it will fail, and if it does, then there will need to be another sleep study/titration and Letter of Medical Necessity to get an APAP. I figure, if they are "crooks" that is what they will try to do, and I want to be ready for it. More delay, and I'm ready to start optimizing my therapy and want the APAP as an option. I do very much want the input of the sleep doctor ultimately, don't want to unnecessarily make her mad, but I feel I can figure it out with the help of everyone here.

I have already made clear to her that I want DATA AND AN APAP, but she kind of himhawed and said, "You may not need an APAP, depends on the study...." She does agree that I need data, and agreed with my desire to monitor my data, saying, "We can't watch you every night." I told her I could run an APAP in straight CPAP mode if that's best for me... She said "That's an option, too." I plan to insist on an APAP, even if I have to run it in straight CPAP mode, if that's the best therapy for me, but I want the option to experiment with APAP if the need should arise.

My GP has already said he would write the new RX and LoMN and put on there whatever I want... so I plan to use that as leverage with the sleep doctor.... in case they are "crooks." Sorry, but I have encountered nothing but "crooks" in my attempts to treat my SA so far... I hope that's not the case and she will be helpful in my therapy!

As I said before, other suggestions about questions to ask the PA when I see her tomorrow are WELCOME/APPRECIATED!

Thanks so much, EVERYONE, for your input so far! So looking forward to getting my data and submitting myself as a "lab rat" for you-all! (LOL) Will welcome/appreciate everyone's input for OPTIMAL therapy so I can SUCCEED THIS TIME!

Lori Dawn

[AMUW]

Lori,

In addition to the questions I posed already, and since your next meeting with the sleep doctor is imminent, here are few suggestions for discussion:
- did anybody say that you spent the whole night on your back? I know I change position often, without knowing. So it is possible, and desirable, that you be calibrated for more than one situation
- can the current sleep doctor look over your entire CPAP history, including PSGs and home CPAP, and draw some conclusions for your therapy? It would be a pity to just get a new snapshot ... and not connect the dots on the total picture.
- who knows, he could even have discovered another sleep position at a lower pressure, and maybe with a simpler mask; and what should you do when back pain, or travel sleeping in tight quarters, prevent you from sleeping on your back.

Best wishes.

[Lori Dawn]

AMUW,

Thank you for posing potential questions for my doctor. I will ask those, but it seems there may be some confusion. I have not understood the requirement for me to sleep on my back the entire night, as I know that I hardly ever, if ever, sleep on my back.

I had to force myself to sleep on my back during the first study when they told me I would have to stay on my back ALL NIGHT. I have never had this requirement during a sleep study, and it surprised and confused me and I was not prepared. I complained to the doctor after the first study, and she insisted that during the titration, I had to sleep on my back or my results would be "skewed." So this was all an attempt to do what she asked and sleep on my back all night. I too would like her input and hope that she turns out not to be "a crook" but a helpful part of my treatment team...

We'll see what happens today. Thanks so much for your input.

Lori Dawn

[sleepyjp]

In reply to the posts regarding sleeping on your back during sleep studies, I am a sleep tech and as I understand it and have observed it over many studies:

1. As many others have said, sleeping on your back usually brings about more respiratory events (apneas and so on). The entire point of laying supine is for gravity to weigh on your airway, which is why we typically measure the circumference of your neck. More tissue = more weight on airway = more airway obstructions = less oxygen in your body, more co2 buildup = arousal = bad sleep = tired = sleep study

2. Different stages of sleep will have different respiratory qualities to them. REM typically elicits the worst respiratory events of all stages, and some people only have respiratory events in REM (quite common). This is because during REM, your body goes into a state of paralysis (or muscle atonia) to keep you from acting out your dreams. When this happens, the slack muscles tend to weigh heavier on the airway.

3. Even if you are a side sleeper, you probably sometimes roll onto your back. Some may not ever do this due to physical size or back/neck issues, in which cases sleeping supine will not be mandatory (although even some of these patients may at one point or another lay supine).

If a person is not made to sleep on their back during a study and *(s)he *sometimes* sleep on their back at home (whether they know it or not) and it happens to be in REM, they may not be titrated enough and may have respiratory events that can seriously disrupt their REM sleep. Not good.

So, we try to see patients supine in all stages of sleep (which there are typically several cycles of) at least once so we know how bad things are or can be (especially if all stages other than REM appear fine). For titrations, we might need patients to be supine when they are in REM for the entire night because if a person only has respiratory events in REM, then we will have only very small windows of opportunity to find the right pressure. In addition, it is very easy to disrupt REM sleep, so we try to get patients supine before or at the beginning of REM, and we have to increase the pressure gingerly so as not to cause a full-blown arousal (pardon the pun). So, I will apologize for all techs that ask you to lay on your back. It is our job.

Anyway, sleeping supine, even if only for part of the night, is very important for an accurate sleep study. Unfortunately, it isn't always the most comfortable thing (probably the most hated part of the study for most of my patients), but collection of accurate data and correction of your sleep apnea will be less affected by your perceived comfort for the night than the position you are sleeping in. We can figure out if you are waking up for reasons related to respiratory problems or something else, so even if you feel like your study wasn't very accurate because you were awake a lot, don't worry, that is not what we are necessarily looking at (in some cases this will play in, like if we see a strange brainwave composition, but most of the time our patients are in for obstructive sleep apnea). Some of the suggestions on here, such as using pillows to prop up your arms and legs, or using a heat pad, are great ideas. I do this myself at home just to help keep my back straight after sitting in a chair all night watching people sleep =) Prop up however you need to, except for your neck. Too many pillows under your head can worsen snoring by compressing your airway, and sitting upright defeats the point of laying on your back.

Sweet dreams, all.

[Lori Dawn]

Sleepyjp,

Thanks so much for your explanation of the requirement to sleep on my back during my sleep study. I now understand, and it makes total sense to me now in light of the fact that my pressure requirement was raised after my latest sleep study (from 8 to 14). I was never required to sleep on my back in my two previous studies and my pressure requirement was 8 both times. I never felt better on therapy and ended up quitting. After my last study and the pressure change to 14, after being required to sleep on my back during the study, I am now getting effective therapy and I am starting to feel better and better after two months. I did question my doctor about that requirement, and she stated almost the same as you, except not in as much detail. She told me, "We have to treat the worst-case scenario." And I suppose that is an effective approach, as 14 seems to be a good pressure for me, with my software to back it up.

Thanks again for your detailed comments!

Lori "QF" Dawn

[Sparky123]

As a sleep tech for over 20 years I can hopefully give some insight to this topic. The belief that apnea is worse in the supine (back) position is a false notion. Athough it is very common that this may very well be, I've seen patients test more severely for OSA on their side vs. on their back as well. Having a patient spend the entire night on their back is (for lack of a better term), ignorant. The important thing is to get a good sample of all sleep postions. Positonal apnea can be treated without PAP sometimes. One way is postional training. If we know that you have very little or no apnea on your side, a positional device can be worn. It is usually a tennis ball sewn into the back of a tee-shirt which gently reminds you to stay off of your back. It could also be a "back pack" type of device that prevents you from rolling over to your back. Having a good sample of sleep on all sides during a CPAP titration, can help find out if a significantly higher pressure is needed when you're on your side vs. back or vice verse. This could mean tht an APAP is appropriate for therapy so you only get high pressure when you need it. It is smart to refrain from PAP therapy for 48 to 72 hours before a repeat diagnostic sleep study. There is a "Carry Over" effect from PAP that can positively effect the patency of the airway for a couple of days. This could lead to a "false negative" result in the sleep study. This doesn't mean that you only have to use your CPAP every other day. The carry over comes from prolonged PAP usage over many, many months or more. That's all your insurance company needs to deny coverage based on a false negative and an ignorant doctor. There is no need to refrain from PAP therapy prior to a repeat PAP titration. If you need higher pressure, it will mean that you have already been using subtherapeutic settings on your PAP and carry over effect is a moot issue. My advice is to use a sleep center that is accredited with the AASM and consult with a doctor who is board certified in sleep medicine.

[RocketGirl]

This is a very interesting thread, and I wish I had found it (and this site) before I went for my first sleep study (especially your post, Sparky123). I too was told I needed to remain on my back for that entire night, despite my patiently explaining that documented long-term neck damage meant that they'd get no data from me in that position because I would not be able to sleep at all. Still they insisted, and so I tried my best, and I listened all night to the tech voice-over asking me why my eyes were still open and why I was not sleeping. At 4am after no sleep at all I finally broke down sobbing my heart out from the pain and frustration and sleep deprivation of it all. They got less than an hour of sleep out of me by insisting on that position, with no Stage 3 or 4 and obviously no REM. It was horrible. Talk about a skewed study.

The only reason I agreed to go back there for the titration was that I made it very clear what I thought of their protocol and they relented and said I could sleep in whatever position I needed to. Maybe in the best of all possible worlds, supine sleeping gives the best data - but not if the patient honestly cannot sleep like that. People are not cookie-cutter organisms, and I'd be willing to wager that very few of us have only apnea, and no other medical conditions to consider. Grrr!

[DoriC]

Welcome Sparky, thanks for your informative post. Hope you'll come here often to give us input.

[rested gal]

If a person is not made to sleep on their back during a study and *(s)he *sometimes* sleep on their back at home (whether they know it or not) and it happens to be in REM, they may not be titrated enough and may have respiratory events that can seriously disrupt their REM sleep. Not good.

So, we try to see patients supine in all stages of sleep (which there are typically several cycles of) at least once so we know how bad things are or can be (especially if all stages other than REM appear fine). For titrations, we might need patients to be supine when they are in REM for the entire night because if a person only has respiratory events in REM, then we will have only very small windows of opportunity to find the right pressure. In addition, it is very easy to disrupt REM sleep, so we try to get patients supine before or at the beginning of REM, and we have to increase the pressure gingerly so as not to cause a full-blown arousal (pardon the pun). So, I will apologize for all techs that ask you to lay on your back. It is our job.

Anyway, sleeping supine, even if only for part of the night, is very important for an accurate sleep study.

I'm not a sleep tech or anything in the health care field, but I agree with what sleepyjp wrote (way back in June 2011.)

In addition to allowing the tech to hopefully get a look at "worst case scenario" (in REM and on one's back) during the diagnostic study and during the titration, think about this:

Say an illness or injury caused a person to have to be hospitalized on their back. Or go through days, weeks, or months of recuperation time at home, in bed on their back. It would be good to at least have an idea what pressure was needed in that kind of situation, even if the person was normally able to do fine on a lower pressure due to being a side sleeper all, or most, of the time at home.

That said, I don't think a sleep lab should require supine sleep ALL night. And certainly not for someone who has physical pain issues like you described, Rocket Girl, if made to lay on your back.

What you described, Rocket Girl, was absolutely unprofessional (imho) of the tech to do to anyone undergoing a sleep study:

I listened all night to the tech voice-over asking me why my eyes were still open and why I was not sleeping.

A sleep tech saying things like that over the microphone, if he/she was saying it in an exasperated or impatient way (which is what it kind of sounds like was happening) .... whew. Very bad of the tech to nag like that during a study in which a person is having difficulty getting to sleep. Especially after you already spoken to them about having documented long-term neck damage and an inability due to pain, of being able to sleep on your back at all. They could have urged you to try "on your back", but once they saw you really could not go to sleep that way, you should have been allowed to get comfortable enough in whatever position was best for you to fall asleep and they could hope for the opportunity to get some supine observation later. Just my opinion.

As a sleep tech for over 20 years I can hopefully give some insight to this topic. The belief that apnea is worse in the supine (back) position is a false notion. Athough it is very common that this may very well be, I've seen patients test more severely for OSA on their side vs. on their back as well. Having a patient spend the entire night on their back is (for lack of a better term), ignorant. The important thing is to get a good sample of all sleep postions. Positonal apnea can be treated without PAP sometimes. One way is postional training. If we know that you have very little or no apnea on your side, a positional device can be worn. It is usually a tennis ball sewn into the back of a tee-shirt which gently reminds you to stay off of your back. It could also be a "back pack" type of device that prevents you from rolling over to your back. Having a good sample of sleep on all sides during a CPAP titration, can help find out if a significantly higher pressure is needed when you're on your side vs. back or vice verse. This could mean tht an APAP is appropriate for therapy so you only get high pressure when you need it.

Sparky makes good points. Regarding getting "a good sample of all sleep positions" -- I'd add "while in REM" to that. And if it's a split night study with someone who is having difficulty maintaining sleep, I'd imagine it could get even trickier during the titration phase ... hoping to get a good sample of all sleep positions -- in REM.

My advice is to use a sleep center that is accredited with the AASM and consult with a doctor who is board certified in sleep medicine.

Excellent advice! Welcome to the forum, Sparky.

[deltadave]

There is a "Carry Over" effect...

"Hysteresis."