AARGH! I have to do ANOTHER study?

[sawinglogz]

I called to see how things were progressing and they said I have a "complicated" case.

They said I only got 135 minutes of sleep during my study, that I had more centrals when on CPAP than in the initial (non-titration) study, and that they didn't get enough data to titrate on bi-level. So they don't want to prescribe me a CPAP (since it made my sleep worse) and want me to come in for another bi-level and possibly ASV titration.

But that won't be for at least another week. And I'm still getting no rest! I just want to breathe at night, is that so hard?

Of course CPAP made my sleep worse: I haven't heard of anybody whose sleep it didn't make worse on the first night!

I can't express how discouraging this is...I had such high hopes for even the beginnings of relief within the week or so it would take to get the DME approved & scheduled & delivered...and I so desperately wanted to begin therapy before a 10-day vacation that is rapidly approaching!

[Pugsy]

Bummer but you have to do it. Their reasoning is very valid and very important.
You want the proper machine or you will even feel worse.

[khauser]

You're getting the kind of treatment a number of people could only dream about. So many people have come through here pretty clearly needing BiPap or ASV and because of insurance reasons or lazy techs, whatever, never got the option. You are actually LUCKY in that your team appears to consist of competent members.

[PreemieNrsTiffy]

I sympathize with the frustration but I believe your medical team is really trying to get you the best treatment.

I remember pretty much hollering at my sleep doc about his proposed therapy (I wanted a better sleeping pill, not something to strap on my face that would make it that much harder to fall asleep). It's very hard to be objective and reasoned when you are sleep deprived (ask my poor husband about what a peach I was at that time). I hope for your sake that they get you in quickly for a follow-up study and find the best therapy for you.

[Todzo]

Talk with your doctors about [1,2].

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

[stage0]

When I perform a PSG that includes the cpap treatment, our policy states the need for 3 hours of time to properly adjust the pressure. When you go back for an entire nite for a titration PSG, you will be getting 7-8 hours of time to find the the proper mode for you (cpap, bipap or asv). I will also mention ( as I did not read any medical conditions) that if you have any neurological or pulmonary diagnosis; the increase time of being watched and assessed and adjusted will be in your best interest.

[archangle]

Talk with your doctors about [1,2].

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.

Very interesting studies, a lot of potential. This really needs to be investigated in more depth.

However, it's very much in the experimental category right now.

100 to 1 odds against a doctor being willing to treat you that way. Double those odds at this point in the process.

Also a bad idea to experiment with it yourself. Very bad and actually dangerous if you don't know what you're doing.

Unfortunately, from what you've told us, another sleep study probably is the right thing to do. They could probably do a lot of good using the optional wireless modem many of them have these days. However, insurance probably won't pay for doing it that way, and doctors are probably going to be unwilling to work that way.

ASV is a lot more difficult to properly set up than "normal" CPAP.

[zoocrewphoto]

Of course CPAP made my sleep worse: I haven't heard of anybody whose sleep it didn't make worse on the first night!

For many people, cpap really does help from the beginning. I slept 5 hours straight *during the titration*, and that was probably the first time in at least 5 years, probably longer. And I felt much better the next day. It was such a huge difference for me that I actually had a dream the next night (without a machine yet) that I was going to have to wait 6 months for a machine, and I wanted it NOW. So, my brain, while asleep, was very aware of how well the titration night went, and it wanted a repeat.

I know it is frustrating. As I waited 2 weeks for my followup and another week for my machine, I was antzy to get going, especially after a taste of good sleep. But it sounds like you are very fortunate. A lot of people have to get the cpap or apap and then fail for a couple months before they are allowed to move on to a better machine. And if they have to pay part of the machine cost, they may get stuck paying part of a machine that is not used after a few months. You may be having to wait a bit now, but it sounds like they are fast tracking you to the correct type of machine that you need. And that will be awesome in the long run.

[Todzo]

Talk with your doctors about [1,2].

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.

Very interesting studies, a lot of potential. This really needs to be investigated in more depth.

However, it's very much in the experimental category right now.

100 to 1 odds against a doctor being willing to treat you that way. Double those odds at this point in the process.

Also a bad idea to experiment with it yourself. Very bad and actually dangerous if you don't know what you're doing.

Unfortunately, from what you've told us, another sleep study probably is the right thing to do. They could probably do a lot of good using the optional wireless modem many of them have these days. However, insurance probably won't pay for doing it that way, and doctors are probably going to be unwilling to work that way.

ASV is a lot more difficult to properly set up than "normal" CPAP.

The actual reason I point toward the articles is to move the carbon dioxide maintenance issues involved with OSA but espically when CPAP is added - into the Doctors view.

[sawinglogz]

Assuming my doctor's office gets their act together and actually gets the authorization in time (that's another story altogether), I should have the next study this weekend.

Any suggestions based on how things went the last time around?

I'll definitely ask whether they have a hybrid mask, since I didn't like the air of the FFM leaking into my eyes. (And my nose got too clogged to get enough air with a nasal mask or pillow alone.) I brought my own pillows and PJs last time around.

I could bring some Ambien, but I don't normally take it and I'm not sure if it'll skew the results, or make it hard for me to drive home the next morning.

[jdm2857]

Just a reminder that there are two hybrid-type masks:

The InnoMed/Respcare Hybrid and the ResMed Liberty

These masks are much more similar than they are different.

I mention this because the sleep lab may have one (probably the ResMed) and not the other.

[BrandonB]

Of course CPAP made my sleep worse: I haven't heard of anybody whose sleep it didn't make worse on the first night!

For many people, cpap really does help from the beginning. I slept 5 hours straight *during the titration*, and that was probably the first time in at least 5 years, probably longer. And I felt much better the next day. It was such a huge difference for me that I actually had a dream the next night (without a machine yet) that I was going to have to wait 6 months for a machine, and I wanted it NOW. So, my brain, while asleep, was very aware of how well the titration night went, and it wanted a repeat.

I know it is frustrating. As I waited 2 weeks for my followup and another week for my machine, I was antzy to get going, especially after a taste of good sleep. But it sounds like you are very fortunate. A lot of people have to get the cpap or apap and then fail for a couple months before they are allowed to move on to a better machine. And if they have to pay part of the machine cost, they may get stuck paying part of a machine that is not used after a few months. You may be having to wait a bit now, but it sounds like they are fast tracking you to the correct type of machine that you need. And that will be awesome in the long run.

This was my experience as well. It is frustrating, but the end-goal is definitely worth it!

[sawinglogz]

Thanks, I'll be sure to ask them about either hybrid. They seem to have Resmed gear, so I'm guessing that's the one they'll have.

Anything else I should do this time?

Given that I didn't get enough sleep in the last study, is Ambien a good idea this time? I don't normally take it.

[Pugsy]

Given that I didn't get enough sleep in the last study, is Ambien a good idea this time? I don't normally take it.

If the doctor is on board...I would take it. Getting a good titration study involves getting good sleep and the good sleep is more important at this point.
I had a second night titration study myself...still didn't get 3 hours of sleep and that's with the Ambien so they missed my pressure needs by a little bit because I need more pressure in REM sleep and only got 6 minutes of REM sleep during the titration.
I had the titration study from hell.

[zoocrewphoto]

Thanks, I'll be sure to ask them about either hybrid. They seem to have Resmed gear, so I'm guessing that's the one they'll have.

Anything else I should do this time?

Given that I didn't get enough sleep in the last study, is Ambien a good idea this time? I don't normally take it.

I took ambien for my sleep study. That is the only time I have ever used it. I am a severe night owl, so I normally go to bed between 4 and 6am, and I sleep very poorly in hotels (awake part of every hour). So, I was worried I would not sleep during the study. I did my best to be tired. Got up early, no naps, no caffeine, not even decaf pop. When I got to the sleep study, the lady who checked me asked if I had ever taken one before. No. She told me to wait and not take it until the tech told me to. Some people are sleepy pretty quickly, and they have to do a system check once you are wired and in bed. So, I took it just before bed. I did not feel drugged at all. I had a normal (for me) bathroom trip about an hour into it. I felt fine when the tech woke me up, and I took another bathroom break. And then I slept straight through the titration, about 5 hours straight. Great night of sleep, lots of data. And my titration was spot on, even though they didn't have enough supine sleep to fully test, so they guessed on the high end of my range. I've adjusted my humidity and temp, and I turned off the ramp. But I have never had to touch my pressure settings. I went from 79 ahi untreated down to most nights less than 2.

My doctor originally prescribed the ambien because I was having trouble sleeping in hotel rooms as I travel a lot. But I was afraid to take it in case something happened. I finally took my prescription slip in and got a single pill for the sleep study. I figured I would be wired up and monitored, so what better time to try it.