Titration Study Failure--What to do?

Jeanne Ellen · Post by **Jeanne Ellen** » Mon Sep 19, 2016 12:00 am

After a home sleep study, my doctor scheduled me for a titration at the sleep lab last night, and it was horrible. I may have slept for a total of three hours, but my constant awakenings made it impossible (according to the tech) to do any meaningful calibrations. I think I must have been awakening every half hour, and I spent a lot of time just laying there, trying to will myself to sleep. I actually took two short-acting sleeping pills during the night, (Sonata), but they hardly made a dent. According to her, she kept the pressure low and every time I fell asleep, she'd try to gradually increase it, but each time she did, I'd wake up. I have a memory of air coming into my mouth, which startled me. How in the world do you prevent that? She told me that I didn't have any apneas or hypopneas, either, and she didn't know what to do with me.

My sleep studies in the past showed that I don't have a lot of apneas and hypopneas, but I have a lot of arousals. At the first study in 2004, I had one apnea and 45 hypopneas over the course of 6 hours, with an AHI of 9.0 an hour. The second, in 2006, was a split study. The first hour and a half gave me a sleep efficiency of 75%, with 63 arousals, and an RAI of 9.1. The remainder of the study was with a mandibular advancement device (Oasys) and while I had no apneas or hypopneas, I had 52 arousals per hour and a sleep efficiency of 78%. In both cases, my oxygen saturation was above 90%. I've never been diagnosed with UARS, but from what I read, I think I fall into that category. I don't have any trouble falling asleep, but I can't stay asleep, and the next day I feel terrible, sleepy and no energy. How difficult is it for people with UARS to get the correct calibration for a cpap machine?

I plan to call my doctor tomorrow and try to make an appointment, but he seems to be fully booked so who knows when I'll get to talk to him. I wonder if sleep labs don't know what to do with people like me, who don't have typical sleep apnea symptoms. Do they just start everybody off at some kind of baseline and then monkey around with settings, masks, and machines until they finally get it right? Thank you for any helpful advice!

Sheffey · Post by **Sheffey** » Mon Sep 19, 2016 5:58 am

Jeanne Ellen wrote:Do they just start everybody off at some kind of baseline and then monkey around with settings, masks, and machines until they finally get it right? Thank you for any helpful advice!

I would get a data-capable auto CPAP and set the pressure range to 7 - 20. Then stick around the forum, learn to use Sleepyhead software and do the monkeying until you get the pressure right and start sleeping and feeling better.

That's pretty much how I did it, except I did not have the advantage of this forum and Sleepyhead in those days.

chunkyfrog · Post by **chunkyfrog** » Mon Sep 19, 2016 10:41 am

Yes, get an autotitrating machine---like mine.
You may click on the text in my equipment listing for a link to the price at our host site.

Jeanne Ellen · Post by **Jeanne Ellen** » Mon Sep 19, 2016 3:23 pm

I made an appointment with my sleep doctor for October 12, to find out if he can explain to me how I'm supposed to proceed with no good results from the titration study. Apparently, it will take him over two weeks to review my study, however, I'll spend the time doing my homework and trying to educate myself about cpap. The last time I saw him, he recommended the Phillips DreamStation to me. I had mentioned that a friend of mine was really happy with her ResMed Autoset AirSense 10 for Her. He implied that the DreamStation was superior in some way--newer and more improved. I've notices that many members of this board seem to like the AirSense. Why is that?

I'm not sure I understand the process for buying a machine. After I get my prescription, can I go to any DME or even buy online? I get the feeling that my doctor has a particular DME he want me to go to, and I don't know if this place has a variety of machines to choose from. Once I finally get it, who's in charge of the settings? Am I supposed to follow instructions from a technician from my doctor's office or Sleepyhead? I have Medicare, and I understand that I have to use the machine for at least 30 days before they will pay for it. Do you also have to follow rules from your doctor's office about the settings? Just to be clear, I'm able to pay out of pocket for the machine, so that frees my up from these compliance rules. I'm sort of feeling that sleep doctors are superfluous. You hardly ever get to talk to one but you need them to get a machine. Other than that, what are they good for?

palerider · Post by **palerider** » Mon Sep 19, 2016 4:10 pm

Jeanne Ellen wrote: I had mentioned that a friend of mine was really happy with her ResMed Autoset AirSense 10 for Her. He implied that the DreamStation was superior in some way--newer and more improved. I've notices that many members of this board seem to like the AirSense. Why is that?

couple things to start:
https://www.youtube.com/watch?v=lzCCgNLya_g
viewtopic.php?f=1&t=99737&p=927976&hili ... ks#p927976

Jeanne Ellen wrote:I'm not sure I understand the process for buying a machine. After I get my prescription, can I go to any DME or even buy online? I get the feeling that my doctor has a particular DME he want me to go to, and I don't know if this place has a variety of machines to choose from. Once I finally get it, who's in charge of the settings? Am I supposed to follow instructions from a technician from my doctor's office or Sleepyhead? I have Medicare, and I understand that I have to use the machine for at least 30 days before they will pay for it. Do you also have to follow rules from your doctor's office about the settings? Just to be clear, I'm able to pay out of pocket for the machine, so that frees my up from these compliance rules. I'm sort of feeling that sleep doctors are superfluous. You hardly ever get to talk to one but you need them to get a machine. Other than that, what are they good for?

yes, you can buy anywhere, legally, though some control freak or unethical doctors will try to limit your choices.
you're ultimately in charge, though techs sometimes try to feed you a line of bull that it's "illegal" for you to change them, which is a lie.
I've never heard of any insurance (including medicare) caring about anything other than whether you're using the machine for a wholly substandard half of the night 3/4ths of the time. ... (that's enough to satisfy the medical community, not us, we want all night, all the time... it does you no good laying on your nightstand.)

if you're paying out of pocket, then none of the 'compliance' (ugh) bs applies to you, get the script, call up a good place online (or amazon) and buy what you want. (for that matter, PM grayghost4, he often has a line on great deals, and he's completely trustworthy, could save you hundreds.).

jimsp1 · Post by **jimsp1** » Mon Sep 19, 2016 4:26 pm

After my failed titration test the Neurologist with the sleep lab suggested another try at the titraton test.
Fortunately the doctor associated with the sleep lab nixed that idea and prescribed an APAP (Dreamstation) with which we quickly determined the correct pressure rage. Currently my AHI is averaging about 1.

Janknitz · Post by **Janknitz** » Mon Sep 19, 2016 5:23 pm

After I get my prescription, can I go to any DME or even buy online? I get the feeling that my doctor has a particular DME he want me to go to, and I don't know if this place has a variety of machines to choose from. Once I finally get it, who's in charge of the settings? Am I supposed to follow instructions from a technician from my doctor's office or Sleepyhead? I have Medicare, and I understand that I have to use the machine for at least 30 days before they will pay for it. Do you also have to follow rules from your doctor's office about the settings? Just to be clear, I'm able to pay out of pocket for the machine, so that frees my up from these compliance rules. I'm sort of feeling that sleep doctors are superfluous. You hardly ever get to talk to one but you need them to get a machine. Other than that, what are they good for?

Make sure you get your prescription in your hand. Then you are free to go wherever you want and buy any XPAP machine YOU choose.

Do NOT feel pressured to use a DME that your doctor prefers. The fact that he may get a kickback or perks from your CPAP purchase should not be a deciding factor in whom you have to be (literally) in bed with for 5 or so years.

If you mention Sleepyhead to your doctor or DME you may get anything from blank looks to outright instructions NOT to change any settings on your machine. Most doctors and DME's are not used to patients taking charge of their therapy and many are against it, though some are "trainable". When you know what you are doing, you can change settings for comfort or to optimize treatment, but you will want to understand what you are doing and why. Sleepyhead is an excellent way to monitor your progress.

Medicare does have compliance requirements, and they only pay on a "rent to own" scheme. after you've met the initial compliance hurdle they will pay for the initial month, and then 80% of the amount Medicare (NOT the DME) sets for the remaining 13 months. You or your insurer owe the remaining 20%. When figuring your out of pocket costs, don't forget that you may owe a new deductible come January. It is often cheaper to buy your own than to go through Medicare, but not always, depending on how much your Medi-gap plan picks up. Keep in mind that your options for DME's are limited by Medicare these days. Since most DME's will give you great hassle over the better machines, if you can afford to buy your own out of pocket you will avoid much of the annoyance of buying through Medicare. To me, that's worth a lot!

I don't know much about the Dream Station but I think what it may have (and I'm sure Palerider and others will quickly correct me if I'm wrong) that ResMed does not is that it shows your breathing "breath by breath". That might be useful if you are doing autotitration. I think the ResMed autosets may also show this data but don't store it as the Philips machines do.

palerider · Post by **palerider** » Mon Sep 19, 2016 6:37 pm

Janknitz wrote:I don't know much about the Dream Station but I think what it may have (and I'm sure Palerider and others will quickly correct me if I'm wrong) that ResMed does not is that it shows your breathing "breath by breath". That might be useful if you are doing autotitration. I think the ResMed autosets may also show this data but don't store it as the Philips machines do.

resmeds store more detailed breath and pressure data than the respironics do.

both machines show flow data down to the individual breaths. all full data resmeds do, since the S9 series, all full data respironics do since the system one 50 series.

example:

(unless I misunderstood what you were saying)

Titration Study Failure--What to do?

Titration Study Failure--What to do?

Re: Titration Study Failure--What to do?

Re: Titration Study Failure--What to do?

Re: Titration Study Failure--What to do?

Re: Titration Study Failure--What to do?

Re: Titration Study Failure--What to do?

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Re: Titration Study Failure--What to do?