Interpretation of sleep study and titration info.

I found out about my apnea via a neurologist. She has been great in helping me find answers so far, but I do not know if she is well versed in CPAP therapy.

In the initial sleep study, I had about 8 throat closures per hour, but it jumped to 27 per hour during the REM stage!

For the titration study, I never saw REM state (I was uncomfortable and restless with 2.5 hours total sleep time).

By default I was to receive a non-data CPAP (which I declined, thanks to this forum).

My question is - Is the titration result likely to be different for the REM state (I assume the REM condition has a bigger impact on my wellness)?

Also, the technician for the titration either fudged my study or mixed me up with another patient. According to the titration study, I spent about 3 hours on my back and slept for 1.5 hours. The problem is I never sleep on my back! I have chronic sinus issues and if I sleep on my back, I start coughing. I tried at the request of the technician, but developed a cough after 5 minutes so rolled on my side. Is there a reason why the technician would want it to look like I slept on my back? I just don't know if this is an honest error or a deliberate incident. If this is mixed up, it begs the question of whether the rest of the study is correct.

Thanks!!

Rogue Uvula wrote:My question is - Is the titration result likely to be different for the REM state (I assume the REM condition has a bigger impact on my wellness)?

Hi,

It is not unusual to have a different event pattern when in REM sleep. Your body might be more relaxed, leading to an even worse OSA condition. This is a case where an auto machine might be a big help since it could potentially adjust the pressure upwards to overcome the obstruction. It might also be that a CPAP, APAP, or BiPAP isn't smart enough, and you might need ST or ASV technology. That is something that a good sleep doctor should be able to derive from the sleep study results. I suspect that you are going to want a 2nd opinion. First off, if your study was that messed up, the data is probably not too useful. Second, I suspect that they are more interested in profit than treatment if they stick you with a brain dead non-data capable CPAP machine with the symptoms that you describe. Of course, this is just my personal opinion based on my use of CPAP and I have no background in this field of study, so I could be totally wrong. I'd still get a 2nd opinion given what is at stake here.

-john-

Thanks John!
Exactly the type of information I wanted. I think my neurologist is not well versed in apnea and is relying on the study company for recommendations. I will find a sleep specialist for second opinion.

Cheers,
Kurt

I would certainly follow up on why your study does not match what you experienced re: sleeping position. One possibility that came to mind is that the technician 'adjusted' your report to ensure you qualified for insurance. He knew you have a problem regardless of your position. Insurance companies are sometimes too regimented to accept an unusual case at face value.

Although there are some patients who have really unusual OSA, and require machines like an ASV machine (I am one of them, unfortunately. I do not have any of the classic symptoms that call for ASV, but it the only algorithm that works for me.), these are in the tiny minority. What you describe is typical of a lot of folks here. My bet is that an autoadjust machine will take care of your problem very nicely.

Thanks!
If I follow, it is reasonable for me to expect an AutoPAP with Data collection.
Auto and Data capability is especially important because it could adapt to the REM condition which could be different from the measured condition. I would also be helpful in providing titration information and effectiveness of treatment (since the study is suspect).

Let me know if I have that right. If the second doctor seems reluctant to prescribe data and auto, I want to present it to them so they can explain why I'm wrong rather than just say no. I don't think that will be an issue, but it does pay to be prepared for the worse in matters of importance.

Thanks!

The autos can run in cpap mode too..

People who might need autos could have positional apnea....

people who have allergies, or asthma or other related lung issues..

or people who just want a good data capapble automatic machine..

YOU did not go into rem in your titration, but did in the first study.. and look what happened..

Yes, very often rem is where it all unfolds.. so get yourself an auto..

Im about to try my fourth machine in five months, so be a squeeky wheel, dont roll over.. it will be easier for them to give you what you want
just to shut you up.. (in most cases) any doc can write the script, so if you love your neurologist, let her write it.. show you have done your
homework.. if YOU did the research, they feel confident you know what youre doing, and are happy to help..

Print out stuff, and show it to her, list the reasons you feel you want a specific machine.. good luck!

timbalionguy wrote: One possibility that came to mind is that the technician 'adjusted' your report to ensure you qualified for insurance. He knew you have a problem regardless of your position. Insurance companies are sometimes too regimented to accept an unusual case at face value.

Exactly what I was thinking.

Knowing what I know now, I wouldn't push for another PSG just yet. They get between $3.5-5k for them. Do you know what your portion is yet? If I did go for another I wouldn't go back to the same place either. Plus you want to wait a while so that you are sleeping thru the nite with cpap on and bring your own mask. Your results will be much more accurate.

To get an auto - you have much more homework to do. Start with your Insurance and find out their policy - ask about other DME's you can use. There are many posts on here telling the best way to get an auto or data capable machine. Read, read, then read some more.

I assume you already have a copy of your PSG, get a copy of your script too. It doesn't have to say auto.

Rogue Uvula wrote:Thanks!
If I follow, it is reasonable for me to expect an AutoPAP with Data collection.
Auto and Data capability is especially important because it could adapt to the REM condition which could be different from the measured condition. I would also be helpful in providing titration information and effectiveness of treatment (since the study is suspect).

Let me know if I have that right. If the second doctor seems reluctant to prescribe data and auto, I want to present it to them so they can explain why I'm wrong rather than just say no. I don't think that will be an issue, but it does pay to be prepared for the worse in matters of importance.

Thanks!

Hey Rogue, Welcome, you're figuring things out pretty quickly. If you're taking notes on an auto you might add your concerns about weight gain/loss in the future or other medical issues that might arise which could impact your therapy and require pressure adjustments. But what is really essential is data capability. Keep us updated.

elena88 wrote:if you love your neurologist, let her write it.. show you have done your
homework.. if YOU did the research, they feel confident you know what youre doing, and are happy to help..

Print out stuff, and show it to her, list the reasons you feel you want a specific machine.. good luck!

She has been a great asset, but I'd like to find a Doctor who knows sleep disorders well enough to be coaching me rather than the other way around.
She seems to have a good awareness of Sleep Apnea, but I think it is a fringe aspect for her.

Thanks for the encouragement and support!

GumbyCT wrote:

timbalionguy wrote: One possibility that came to mind is that the technician 'adjusted' your report to ensure you qualified for insurance. He knew you have a problem regardless of your position. Insurance companies are sometimes too regimented to accept an unusual case at face value.

Exactly what I was thinking.

Knowing what I know now, I wouldn't push for another PSG just yet. They get between $3.5-5k for them. Do you know what your portion is yet? If I did go for another I wouldn't go back to the same place either. Plus you want to wait a while so that you are sleeping thru the nite with cpap on and bring your own mask. Your results will be much more accurate.

To get an auto - you have much more homework to do. Start with your Insurance and find out their policy - ask about other DME's you can use. There are many posts on here telling the best way to get an auto or data capable machine. Read, read, then read some more.

I assume you already have a copy of your PSG, get a copy of your script too. It doesn't have to say auto.

I think I'll keep low on the position inaccuracies (but definitely go elsewhere for the next one).

I'm pretty lucky on the insurance. My wife has a good policy. It was $180 (I pay 10% so that means they allowed $1800 of whatever sum was billed) for the first study. The second had no cost to me! However, I would expect the third would be a struggle to get insurance to approve anytime soon!

I already have a copy of the script. I was about to order over the internet, but since I am a noob, I'd really like to find local support and I'll wait to see if I can find the right equipment from a local supportive company, before I go internet. I'm willing to wait another week or two to find the right Doctor and DME, if available. The way I look at it is teh equipment is a three year commitment, so I don't want to mess up.

Thanks for the info and support!

DoriC wrote: Hey Rogue, Welcome, you're figuring things out pretty quickly. If you're taking notes on an auto you might add your concerns about weight gain/loss in the future or other medical issues that might arise which could impact your therapy and require pressure adjustments. But what is really essential is data capability. Keep us updated.

Thanks, I've been reading here for a couple of weeks before I decided to post - I don't think I would have had enough figured out in time before I got stuck with a poor unit if this site wasn't here!
Thanks for the reminder about weight change and AutoPAP! I had read that when I started reading here (before I understood what might be relevant to my situation) but now it is on my list!
I suffer from CRS and it will be interesting to see if and how much the CPAP helps with that.

Hope you're on your way to getting that rogue uvula tamed!

I have had studies where the doctor's summary said the study was "technically suboptimal" due to not sleeping supine while in REM. I personally would want my report to accurately reflect what happened at the study. It also could help substantiate your request for a machine that will better enable you to find therapeutic treatment. Seems you could request of the sleep center that the study data be reviewed and validated by a different tech since you have concerns there could be mixup. If that were the case, who knows how much else is your info. They should still have the video too. Hope things are quickly in place for you to begin to get the safe sleep you need.

Rogue Uvula wrote:

elena88 wrote:if you love your neurologist, let her write it.. show you have done your
homework.. if YOU did the research, they feel confident you know what youre doing, and are happy to help..

Print out stuff, and show it to her, list the reasons you feel you want a specific machine.. good luck!

She has been a great asset, but I'd like to find a Doctor who knows sleep disorders well enough to be coaching me rather than the other way around.
She seems to have a good awareness of Sleep Apnea, but I think it is a fringe aspect for her.

Thanks for the encouragement and support!

Even if you go to a specialist, a sleep doctor, you will find that you will be treated like a cookie cutter patient..
"you have sleep apnea, here is your machine, here is your mask, wear it every night, come back and see me every six months"

That is the state of sleep medicine presently. Dont expect to be enlightened by a busy physician.

That is the way it is... so IF YOU dont show them you are hip, and you know more about the machine you want than they do, its harder to grease
the wheels to get what you want.. These doctors dont have time to read every clinicians manual for every new machine that comes out..
But guess what you have? you have time to read the one to the machine YOU decided is best for you..
Know your sleep study backwards and forwards.. know all the terminology..... its the only way you can take charge of your therapy.
You are your best health care advocate, and that is a constant.

elena88 wrote: Even if you go to a specialist, a sleep doctor, you will find that you will be treated like a cookie cutter patient..
"you have sleep apnea, here is your machine, here is your mask, wear it every night, come back and see me every six months"

That is the state of sleep medicine presently. Dont expect to be enlightened by a busy physician.

That is the way it is... so IF YOU dont show them you are hip, and you know more about the machine you want than they do, its harder to grease
the wheels to get what you want.. These doctors dont have time to read every clinicians manual for every new machine that comes out..
But guess what you have? you have time to read the one to the machine YOU decided is best for you..
Know your sleep study backwards and forwards.. know all the terminology..... its the only way you can take charge of your therapy.
You are your best health care advocate, and that is a constant.

That is disappointing, but info I need to know.
Thanks for the reality check!